Part 2 of journal

Written Dec 6, 2010 4:14am

All I can say is I am so very glad the night is over. Taylor’s stats were all over the place, which sent his pulse ox into quite a frenzy. Our machine, unlike the hospital, beeps when oxygen is 99-100, as well as too low. So even though I am patient (quit laughing) and wait a couple minutes to see where his real stats are, I still was changing the O2 level lots. The good news about the beeps is that if I accidentally doze off, it will startle you awake.

About 3am this morning Taylor’s stats kind of stabilized and I was able to get him to the normal 1 liter of oxygen he needs at night. By 7:30 I was comfortable enough to nap a bit myself and when he got up at 11:00 (after nearing the 22 hour mark of straight sleeping) his level was good enough to be off oxygen when he is up and moving around.

This has been almost 24 full hours of feedings, minus the two times the tube came free last night and we were up changing bedding, jammies, etc. The great news is I see a huge improvement in him after his lengthy period of feeding & hibernation. My hunch is that tonight will be an entirely different story.

Thank you all for your prayers, they certainly helped to keep us home and Taylor safe. Two things never cease to amaze me: 1) How quickly things change for Taylor-both for the worse & thankfully for the better. 2) How faithfully you guys check this site and hold vigil for Taylor. I say it so often that it probably sounds hollow now, but from the bottom of my heart we love and appreciate all you do for us.

Today we will continue feedings and I will hopefully sleep a little. Taylor is planning on Lego building and would love to go to a movie if I can stay awake. If only I could bounce back the way he does, right? Enjoy the chilly, beautiful Sunday afternoon.

Written Dec 6, 2010 10:24pm

So Sunday was much better in almost all aspects. Taylor woke up with more energy and we met Uncle Mark & Uncle Randy for lunch and to celebrate my birthday. It seems like we have been doing a lot of that! It was nice to hang out a bit & Taylor actually ate reasonably well. On the way home he got sick to his stomach and was unable to keep his food down, bummer.

He has been resting well this evening on his regular 1 liter of oxygen and has been able to keep his feeds down over night. As you may have guessed, I am having some trouble sleeping so I am keeping a close eye on him.

This week we will begin getting back into the doctor-tutor routine more steadily. I hope to work on lots of homework and get ornaments on the tree, which has now been in place a week…what can you do???

Hope you had an awesome weekend! We love you!!!

PS-This journal pic is from the Lego Event

Written Dec 7, 2010 1:36pm

Today was a much better day! Taylor slept until nearly 1pm this afternoon and has been moving pretty slowly. His nausea is not fully controlled, but feedings are going well. He seemed stronger this evening, than even this afternoon.

As you can see from the picture, we decorated our tree tonight and it looks awesome. We have a tradition in our family that each person gets an ornament of their choice each year. Taylor very much enjoyed seeing some of mine from my childhood…Raggedy Ann, Miss Piggy, Beauty & the Beast. He could not believe he ever liked Barney or Blues Clues, but he did. Anyway, it was super fun.

Taylor also loved looking at the nativity scene I had set up this morning. It used to be my mother’s and at his age, not to mention our PICU Christmas last year, he just didn’t remember seeing it before. Speaking of the PICU…last Christmas there was a tree just outside of the unit that was decorated with stuffed animals from Finding Nemo. It comforted me so much because Nemo was Taylor’s first movie and I was just sure that was a good sign. Anyway, this year we have added a stuffed sea turtle to our tree.

I know things always seem hectic and frazzled this time of year, but I urge you take just a few hours and spend it with your family or friends enjoying the whole season, not just Christmas Day. It really is the time of year to reflect on all the many blessings we have.

Written Dec 10, 2010 4:56am

It has been a fairly uneventful week for Taylor. He has had Physical Therapy, tutoring, and has acupuncture tomorrow. He has done a lot of sleeping as well. He is healing and needs it, I guess.

It is so nice to have the house decorated for Christmas. It is the first time in years…Last year, Taylor was in the PICU, the year before I was sick, & the year before my grandmother had just passed. It just hasn’t seemed like the holidays until now. Being home for Christmas seems like such an amazing luxury.

I just want to tell you guys how very much I appreciate all you do, not just for Taylor, but for all of us. My friends and family have really come together to celebrate my birthday and try and put some sparkle back into all our lives. For so long we had been trudging through the day doing what we had to to get things done. This last few weeks we have been trying our best to embrace life and even have a bit of fun mixed in. We love you!!!

Written Dec 12, 2010 3:20am

Things are pretty ho-hum here, which I am okay with. Taylor has been doing his best to eat some by mouth and the feedings are…well, they are a huge pain to be frank, but we are working on them. Yesterday Taylor had acupuncture which seems to have helped with his pain. He is still so sleepy that he spends the bulk of his time sleeping.

Last night Taylor got to visit with his Uncle Mark & Randy for an evening while Shane & I went to his Christmas Party. It was very nice to spend some time with all of Shane’s friends who have been so very supportive of us this past year. We enjoyed good food, company, & an evening of festivities.

This weekend should be pretty low key…wrapping some Christmas gifts, getting together with the Grafs. That is really all we have planned. It is also probably all Taylor will have the stamina for. I have big plans to get homework done this weekend too, but he doesn’t know that yet.

There are a couple of kids that I would very much like you to pray for. First, please say a prayer for Mike & his family. He is in the PICU fighting for his life, a battle he has been fighting for longer than I can even imagine. They are a very private family, but I have gotten to know them some and I know that they can use your prayers right now.

The second is a very familiar name to those who know us, Elizabeth. Poor Elizabeth is back in the hospital for the first time post treatment. It is a terrible feeling to have set backs when things had been going so well and they can very much use your words of encouragement. She has a kidney infection & stones. I can only imagine the pain she is in and her mom watching her struggle so… It is also her mom, Carla’s, birthday. All very familiar to us. Here is the link to their site.

http://www.caringbridge.org/visit/elizabethbluenorton

We thank you for your faithful dedication to praying not just for us, but those we love. We are blessed beyond belief to have this amazing support system of friends, family…all of you.

Written Dec 12, 2010 4:26am

While I was doing the latest entry our friend, Mike, lost his battle with cancer. I don’t know what to even say…Please surround his family with all the prayers you can.
Written Dec 12, 2010 5:27am

I want to start off by saying that this is going to be one of those angry, sad entries for which I am not proud. I just have to get this out of my system before Taylor wakes up and sees me so devastated.

I am constantly struggling with my faith…trying so hard to make sense of the pain and suffering I have not only faced but bore witness to this past year & a half. I want God to come down and surround me with love and hugs, to cuddle me and make me not afraid anymore. I can’t see Him. Sometimes I can’t feel Him. What I do see & feel with every tear I shed is the pain and loss these children and their families go through.

Kids!!! Kids who right now should be dreaming of Santa, snow ball fights, graduation, & college. Instead they are dreaming of a single moment without pain, tubes, and more. Why? What is the lesson? I can’t hurt anymore. I can’t watch the hurt anymore.

Mike was a beautiful teenage boy who wanted to attend school, that’s all. Instead he and his devoted family left their home on the western slope and lived out of suitcases, staring at hospital walls for more than 2 years. He didn’t suffer and get better, learning perseverance. He suffered and lost. His family…think of what it would be like to lose your son two weeks before Christmas. I don’t understand.

I think of all the innocent lives lost to this disease this year. The times we have been in the hospital doors down from some young person who’s life ended before it even had a chance to begin. I see their faces, the faces of their families…I hear their screams of pain. I can’t make sense of it right now…maybe tomorrow.

I am crying so loud now, I am going to wake Taylor. He will know by the look on my face that another child is gone. Again I will fail him, fail to hide the hurt and spare him because I am weak.

I am gonna try and calm myself. Thank you for reading this. For carrying the weight of my sorrows. For feeling my pain with me, you are brave. I love you.

Written Dec 12, 2010 8:58am

So if you are thinking that a fourth entry of the day cannot possibly be good…you are right. The day has taken a turn for the worse, which I would not have thought possible. Taylor & I are sitting in the ER right now. Somehow he accidentally pulled the G/J tube free from his stomach. I taped it down so the hole would not close and we are now waiting for the surgeon on call to take a look.

Taylor was due to have the tube changed out in the next week to ten days, so I have a hunch they may just do it now. Certainly they will want imaging studies at the very least. So we wait and hope this is just an inconvenient, uncomfortable stop on an already emotional day.

I will let you know what they decide.

Written Dec 12, 2010 2:31pm

For maybe the first time ever we have gone into the ER, had our problem fixed, & gone home to sleep. Finally something to be happy about today! Thank you Heather & Nate Graf for coming to the ER to keep Taylor & I company.

Taylor now has a new G/J tube placed. This one is much smaller and more convenient and we were lucky to get it after hours on a weekend. The downside is that Taylor was not able to have anesthesia since it wasn’t scheduled. They gave him a sedative he has had before, Versed, to take a little of the edge off. He still screamed in pain and yelled how he hated me for letting them do this to him. As hard as it is to hear that, I know he has to get the anger out. Each time it only takes minutes before he is crying about how sorry he is and that he knows I don’t really want to see him hurt. What can you do? I would temporarily hate the people I love for watching while others hurt me. I tell him its okay and that I never believe him when he says it anyway.

This has been such a long day. I sat in the ER with Taylor for more than 6 hours. The whole time thinking about Mike and how he too had gone through all these battles, and more, ultimately losing his war against cancer. How any times had he sat in the ER? How many torturous procedures? How often had his mother, father, & sister prayed for peace for him?

Earlier I forgot to ask you to pray for Mike’s nurses, many of whom are our primaries as well. Grant, Rebecca, & so many others have cared for him, gotten to know his wonderful family…they have a huge loss today as well. How they can see this horror and still fight to save others…well, it amazes me. We have nothing but love & respect for them.

Tonight we go home tired and sad, still fighting our battle. Tonight Mike goes Home to a peaceful place, where he will hurt no more.

Written Dec 15, 2010 2:40am

So it is Tuesday morning and things have been very status quo around here. After a very long evening at the ER, Taylor & I spent Sunday chillin out in our pjs. He played Legos & I wrapped Christmas gifts while watching incredibly sappy Lifetime/Hallmark Christmas movies. It was a good change of pace.

Yesterday Taylor had many doctor appointments. He saw his psychologist first and expressed a lot of anger & frustration that he has been keeping from us. He adores her so I was glad to hear he was able to get that out.

Next stop was the pain team. We discussed how tired Taylor’s been and the fact that he has still been having lots of stomach pain, possibly from the surgery and possibly still issues from before. They decided to reduce his pain patch a little and have us use additional pills for breakthrough pain. It is nice to have him coming off some of these really high doses. His oxygen level is always better without so much on board.

Our third stop was acupuncture. He got some herbal pain patches for his back and also lots of needles. I cannot say enough how much I think this helps. He was resting peacefully before she even finished putting the needles in.

After that we were finally able to come home for a break. Taylor got very tired, sweaty, & weak. I decided not to push him and canceled his eye doctor appointment. He was just so spent that I figured rest was the better option.

Taylor’s feedings are going okay. He seems to be taking a bit more by mouth these days which is great. He still has a great deal of pain digesting things so you have to weigh the good with the bad I suppose. His weight has stayed nearly identical to when we left the hospital. He has grown taller though and is now 4’11”, he will catch up to me before he is ten at this rate!

The biggest improvement I see physically is that his surgical wound is healing so well and the scar looks pretty good. That, in combination with the new small tube, will allow him to swim again soon. We are hoping he can start with brief, even 5 min, practices in January with his swim team. I know this will do a world of good for him physically & mentally.

For today it seems like we have taken a small step forward. It is always tricky to say that because you never know what each hour holds. I long for the day without feedings, pills, pumps, oxygen, etc… when we can tuck him in at night and it doesn’t require his room to look like the hospital did…when UPS doesn’t deliver several boxes of medical supplies each week…when we can say goodbye to his wheel chair permanently.

I know we are on the right track and for right now that is enough. I thank everyone so much for all their prayers & Christmas wishes. A few people have asked for an address to send Taylor a Christmas card, so here it is:

Taylor Easterberg
3110 Upham Street
Wheat Ridge, CO 80033

We have so much love for you all! Your dedication to us helps us to persevere, to dig deeper and find strength we didn’t know we had. Enjoy today. Celebrate your health, happiness, & other blessings.

Written Dec 19, 2010 6:08am

Wow what an emotional week this has been. We have had lots of good times sprinkled with some struggles and it has been busy!

On Tuesday Taylor spent time tutoring and also had PT. He has been very concerned about school work and feeling a lot like he won’t be ready to move to 5th grade next year. I totally understand this as it has long seemed to me that school is passing us by. The last time he was able to attend class with any regularity was 2nd grade! That is a long jump. Granted he has been working non-stop with home-bound, tutors, & myself. It is clear that during this break we need to focus on school work as much as possible since we can only gain ground with the other kids vacationing.

In PT they have been working on his neuro-pathic pain and his scar tissue on his stomach. They have been using massage techniques, lotion, & putty. We are also using these things at home. His wound is healing so nicely and he actually is kind of thrilled to have a manly scar to show off and talk about to the girls. Boys! 🙂

Tuesday I actually took my first run (or more appropriately jog) since elementary school! It was awful & wonderful. I hurt & was happy to be trying something new. See I have been focusing on getting off the weight I put on sitting in the hospital for a year & a half. I have lost 10 pounds and 1 whole size already! A girl has to look good in Australia ya know! I may never again have such amazing motivation.

Wednesday Taylor worked with his home-bound teacher & also had Duncan, Taylor’s friend, Jacob Cohen’s, older brother work with him. Duncan will not take payment of any sort, but is wanting to help Taylor each week to get caught up!!! Amazing!!! You may remember hearing the Cohen name before, they are also the family responsible for Taylor’s Lego-thon. Clearly we are blessed with the world’s finest friends.

In between working sessions Taylor also made it up to school to hear his homeroom class’s poems. This was exciting! Taylor was so happy to see his friends and their poems were so good. It was amazing to see the difference in these kids since I last got to see their work. It was also so very hard. Taylor & I both felt so sad that we have not been able to be a part of this in the ways we always have. He saw the growth too and felt overwhelmed with his struggling. I saw the years flashing by and him missing important childhood memories…it was a bittersweet afternoon for us both. The picture in today’s entry is of the poem Taylor’s friend, Destiny, did for him and the main picture is of them together at the classroom party. Another high point for me was that when we visited Mrs. Reitz’ classroom she allowed me to read a holiday story to the 1st graders. She knows how much I miss the school and always finds a way to cheer me up!

Thursday Taylor again met with his home-bound tutor and also had tutoring that night. By the end of the week he had completed 9 one-on-one hours of school work, not including stuff we did on our own. He was beat and tired of work. I was proud and gave him small Christmas Lego set to let him know what a great job he is doing.

On Thursday I put together the PTA staff appreciation gifts. This is the chairperson role I have done my best to hang on to because I truly love & enjoy it. However, my procrastination got me in a bind this time and I wasn’t sure I was going to get it done on time. My friend, Nathan, helped Taylor & I get everything done in time though and we had more fun doing it with a friend too. See how lucky we are??? The Reitz family is just another incredible example of how blessed we are!!!

Yesterday was another crazy day. Taylor & I were at Children’s for appointments at 9am, his class holiday party at 1:30, Papa Terry ran him back out to the hospital for acupuncture at 4:00, & then off to the Cub Scout Christmas Party at 5:30…wow! He slept on the way to and from everything and even during a lot of the appointments. By the time we got home we were both wiped and went almost immediately to bed, sleeping in today like teenagers.
Hopefully the weekend will be more relaxing, but this close to Christmas I sort of doubt it.

Overall it has been an enjoyable time to be home. We have been able to be a part of things we have been missing so much…yet it takes all Taylor has and more to do so. It is wonderful to see all the “normal” healthy kids we have missed. It’s always a bit of a catch 22 though…I wish it was Taylor too, who was able to…well, just be a kid…get through a 4th grade class party without needing a nap. Then you remember all the friends we have who are also still struggling, or worse yet the ones who have been taken from us. It is just ridiculously hard to balance a “normal life”. What even is normal anymore?

For us normal is feeding tube leaks at school, the hard decisions of when to allow him a break from the IV pole and the freedom he desires vs. the calories he needs… It means carrying around emergency meds, supplies, & emisis basins in each room and especially the car. When I see his constant pain, his never-ending nausea, the ever-present frustration… well… that is when I have to remind myself that last year he was intubated…silent…and quite literally, almost taken from us. How can we not be happy? How can we not celebrate his life being spared, especially at Christmas?

Each day is a new chance to be grateful and a challenge to overcome the difficulties. I hope that we balance it as best as we can. I want to be even better. If Taylor can come this far, we surely can fight through the rest of the battles. At the risk of sounding cheesy, it is a very magical time of the year and I don’t want to miss a second of the ride. Thank you for hanging in there with us, for pushing us to be better than we are, for laughing & crying with us…for loving us on the good days & bad. We are lucky blessed, and consistently in awe of your dedication and support! We love you all from the bottom of our hearts!!!

Written Dec 19, 2010 7:47am

My time was almost up so I had to save the entry…but I had one more thing to say…

Today is our friend Mike Bamford’s funeral. It is on the western slope and I just don’t think Taylor can go that far by car, but we are there in spirit. Please remember to say an extra prayer for his family & friends. No funeral is easy, but a child’s funeral one week before Christmas seems like the worst kind of pain…

We will miss seeing the Bamford family, but know that Mike is not suffering now and that he is home. You all remain in our prayers as you find a way to heal and always.

Written Dec 20, 2010 4:53am

It would seem that all the going and going has finally caught up with us. Taylor & I both feel worn out and like we are getting colds. We have decided that we will spend the day in our pjs, drinking lots of fluids, and maybe enjoy some soup.

One bit of really good news…Yesterday Taylor walked around both Costco & Target without a wheel chair!!! He was sore, but steady. This is a big step for him since our last long hospital stay, his legs have been so weak. It is nice to see improvement in his pain and discomfort.

Hope you enjoy the rest of your weekend!!!

Written Dec 25, 2010 3:48pm

Wow! This has been a busy, amazing week! Taylor & I have both had doctors appointments, he has had tutoring for 6+ hours this week, and of course normal crazy Christmas preparations. This has also been a week full of fun, yes, I said FUN!!!

Amidst the hectic pace of the week we have found so much joy in being with both family & friends. We finally got to have our pedicure day to celebrate my birthday, which helped Taylor’s neuro-pathic pain lots!!! We went to the movies with Taylor’s swim coaches. I had dinner and went bowling with friends. Shane had lunch with a friend he hasn’t seen in a long time and a “guy’s night out.” It, dare I say, almost seems like we are living again.

Maybe it is the Christmas spirit. Maybe it is being home for the second longest stretch since this all began. Likely it is that we have truly seen progress in Taylor. We know that he still needs his feeds and both pain & nausea are a given. We also know that he has been smiling, walking, playing… He is finally healing.

I have been so hesitant to believe what I have been seeing, even more so to write what I have witnessed. In the past that has brought about bad luck and ER visits. This time though is different. I see TAYLOR believing it! Folks, there is a long road ahead. Some of it may be bumpy, but we will get there. One day soon he will not have an IV pole, oxygen, pulse ox machines, or feeding tubes. I know this in my heart.

Last Christmas I thought we would die of heart break. I thought I was spending the final Christmas with my child. The PICU was scary and cold…and quiet without his voice, nothing but the respirator’s steady hum. This Christmas we are HOME!

We are reminded of the love you have for us. This week we were blessed with many visits from neighbors, classmates, & friends. Taylor was spoiled with gifts from anyone & everyone. The Harris family brought Taylor VIP tickets to the King Tut exhibit he has been dying to see at the Art Museum, the Carollo Family brought a bag the size of Taylor filled with Lego, toys, books & more, and so many have sent cards, gift cards, and more… We are so very thankful.

Today we saw friends and made cookies with Uncle Mark. Tonight we went to church. You may remember from last year how sad I was missing Christmas Eve service. It renewed my spirit to be at church, singing Christmas hymns, and seeing old friends. Miracles DO happen, Taylor is proof of that.

As I wind down for the night I am reminded of the love we are surrounded by. There are friends, family, & God, all of which have carried us through a very long year. All of which have been there through good times and bad. What do I want this Christmas? Nothing. I have it all. We have it all. We love you so much & hope that you take time to enjoy the real meaning of Christmas, celebrate with loved ones, & enjoy the magic of the day.

Merry Christmas!

Taylor, Shane, & Michelle

Written Dec 27, 2010 1:49am

Happy Day after Christmas! We hope you all enjoyed your Christmas yesterday, as we enjoyed ours. It was very nice to have a relaxing day with Taylor…no doctors, no errands, no school work…just us.

As is the same with most of you I would guess, we started our day out opening presents and stockings that Santa had brought. It was so good to see Taylor so excited and joyful. Of course, he got a lot of cool Lego sets & some Wii games he is looking forward to playing. Harry Potter stuff was also a big hit!

We spent the afternoon watching “Despicable Me” a new Christmas movie and building some Lego. Shane was excited to get quite the deal ($20 all you can play) and play golf yesterday afternoon. It seemed totally wrong to be able to play golf on Christmas-I mean really, where is our snow???

The highlight for both Taylor and I was going over the the Reitz home and playing Santa. He got to play with the kids for a bit and enjoyed adult conversation. It was the best way to close out an exciting day.

Taylor was VERY emotional yesterday. It had been so long since he had a real Christmas at home. It seemed like every ten minutes or so he told me thank you for all we did to get him better. I love you was included every time. I think it hit him yesterday what a miracle it all really is. I know for us Christmas will never be the same again.

Anyway…today we are going to the Nutcracker with our good friend Ben. But before that we are going to meet my dad for a Christmas breakfast and gift exchange. It is another busy, but fun day. Again, I want to say thank you for all that you guys continually do for us. We love everything and are so incredibly happy to share our lives with you. Let the spirit of Christmas remain in our hearts!

Written Dec 28, 2010 8:02am

Just a quick note to say how much Taylor enjoyed the Nutcracker. Yesterday morning we were able to meet with my dad & his fiancee to have breakfast and exchange Christmas gifts. It was a relaxing morning and Taylor was thrilled with all his new Lego. Good to see them too!

Then we met our friend Ben and went to the ballet. It was AWESOME!!! Taylor & I have done this once before and are planning on making it an annual Chritmas tradition. He got very tired and worn out before the show was over and we came home so he could chill. After a bit of relaxing he & Shane built some of his new Christmas Lego sets.

This morning Taylor & I have been resting and building more Lego. At this rate we may have his Lego done by the 1st!!! Problem now is he has nowhere else to put it. I told him he needed to make a home addition with all the Lego!!!

I need to ask for a prayer for myself today. Many of you know that I have headaches/seizures. I had a neuro stimulator placed 3-4 years ago and it has been giving me some problems. It was surgically placed and attaches to many places around my scalp and forehead, running down my neck. I have been having some twinges and pangs of pain. What I REALLY don’t want to need is surgical intervention of any sort. I cannot be down right now, Taylor still needs way too much.

Anyway, it isn’t a big deal, but just wanted to ask for prayers. We love you tons and hope you are enjoying Christmas break.

Written Dec 31, 2010 2:53am

Happy (almost) New Year’s Eve!

Well, we have had another busy week. Taylor has worked hard with his tutors to get lots of class work done. We have been to the Museum of Nature & Science with the Grafs and spent lots of time building Lego sets. I have enjoyed dinner with some great friends and got to see a movie last night too. Shane & Taylor took the opportunity to see “Tron.” We are enjoying life.

Taylor has been extra tired this week and needed far more “as needed” pain meds. I think this is due to his increased activity level. I noticed he needed more following PT and also following our trip to the museum, which he WALKED through!!! He has acupuncture today, so that should help a ton too.

My real concern is still feeds. He hates being on them so much, but can’t handle huge amounts at a time, so we can’t give him bolus feeds. He has been eating a little better, so maybe that will help. There is still a lot of nausea and pain associated with food and eating/drinking. One battle we may be fighting for some time yet.

I really think 2011 is going to be the year of good health for our family. I hope that we can just get back into a groove with Taylor going to school, etc. I am even thinking of starting school again if at all possible. Who knows where the next road leads, but it is looking like a fun ride to get there.

We hope you enjoy a very fun & safe New Years!!! Love to you all.

PS-Quick follow up on my neuro-stimulator…No I haven’t seen a doctor even though I should. It feels better most of the time and I have range of motion back in my neck without significant pain. I vow to see a doctor soon if it doesn’t resolve itself.

Written Jan 1, 2011 7:00am

Happy New Year’s Eve!

Our snow has finally arrived and it looks a lot like the back drop of the journal today! Most of you know that Taylor & I love snow & rain because when he was young and hated it, I told him it was his Grandma Claudia’s (my mom) kisses from heaven. The story stuck and now we feel very loved when it snows. Sappy, probably a little lame, but I totally don’t care. 🙂

During the holidays I always miss her so much…I have been keeping myself busy so I didn’t think too much about it. The past couple of days with the weather, Taylor feeling so tired, and my neuro-stimulator acting up…well, I haven’t been able to avoid it as much. Just for one day if I could be the child and she be back taking care of me… I would curl up in bed next to her and let her embrace take away every problem in the world. A weird dream, I know.

Well, mostly I logged on just to say how much we love you all and how ready we are to say hello 2011 and all it has to offer. We will be warm and toasty, maybe building some Lego or playing some games. Have a warm & safe New Year’s Eve! We are so thankful for you all!

Written Jan 4, 2011 2:52am

This will be quick… We had a very quiet weekend full of rest and Legos. Taylor has been a building machine, stopping mostly to sleep. He has still been extremely sleepy and wears out very quickly. This week resumes his normal schedule of appointments, etc. so it will give me a good idea of how he is truly doing.

Thank you all for your prayers! We can use them as we face the challenges of finding our new “normal.” It has been an emotional time for Taylor & I. We love you!

Written Jan 5, 2011 6:46am

So Taylor is not feeling well again. I think he may have the flu, or at least he has flu-like symptoms. He slept until 1pm this afternoon and woke up saying his whole body hurt all over & the pain is a 9/10. He looks very pale, O2 stats are lower, & is already sleepy again. The docs say keep an eye on him for fever, dehydration, etc…plenty of fluids, rest…

After cancelling his tutor & physical therapy for today we are now cuddling and watching Percy Jackson & the Lightening Thief. I haven’t been feeling well either, so this is very appealing to me as well.

I will of course let you know if things turn or we end up visiting Children’s. Right now I think this is just normal sickness, but not anything to worry about.

Love to you all!

Written Jan 7, 2011 3:50am

Not too much to say, we have been house-bound for almost a week now. Taylor is definitely showing signs of improvement and sometimes seems tons better. Then the next day, or even a few hours later, he is exhausted and needs to rest. His nose is still very runny, his cough is better but not gone, and he is still very weak & pale.

Taylor did not sleep well last night and needed quite a bit of oxygen. I am sure that is due to his congestion. So today he is groggy and dragging. I am hesitant to cancel his tutoring today since he has already missed a session this week, but am also not sure he will accomplish much if anything the way he is right now.

The good news is that he is eating far better than he has in more than a year. Weight-wise I think he may have plateaued until he can get more energy and be more active, making him more hungry. I have been checking his weight often though and it seems to be holding steady.

With his cold/flu symptoms trailing off, we are planning his part-time return to school for Monday. I have talked to his teacher and the plan for the moment is to try after lunch 12:15-2:45. This will be his schedule in addition to tutoring, home-bound, etc. so we hope this is doable. I know he could use some independent time in his life, away from parents for sure. I will be glad to have a couple hours to myself to get things done as well.

That’s about it, not too terribly exciting I know. Hope this entry finds you all well and happy! Love to you all!

Written Jan 12, 2011 3:16am

It seems like a long time since I have written much. All-in-all things have been the same. Taylor is still not quite over this cold/flu thing that he has been battling, but he is much better. It is time too, we are both getting really tired of the house.

On Friday my dad took Taylor to his last neuro-psych test. We get the results on the 21st. This will help us know how the chemo affected Taylor’s brain functioning & memory. They will make suggestions to make school easier and help us make his transition as easy as possible. We already know that timed tests and assignments are a real struggle & that it takes him 3-4 times as long as it used to to get things done. I am anxious to hear their other findings.

Taylor had to miss some tutoring last week with his being sick and having a fever. Yesterday he worked with home bound but didn’t have the energy for school. He ended up sleeping 6 hours in the afternoon & still having no problem sleeping last night, so he must have needed it. Today he will be attempting his first afternoon back with class. Followed by tutoring & PT.

We have done a few things that are fun to share. Our awesome friend Nate Graf helped us get Taylor’s pinewood derby car cut out and ready for us to sand, paint, add wheels, etc. this weekend. He was inspired by our trip to see the King Tut exhibit, but that’s all I am gonna share right now. I will post pics when we are done working on it. It’s gonna be SWEET & we couldn’t do it without Mr. Nate, as Taylor calls him.

Speaking of the King Tut exhibit…You may remember Taylor got tickets for Christmas from the Harris family. Well we had planned to see it Saturday, as the exhibit closed Sunday. That morning I woke up feeling miserable and Taylor was extremely tired. We decided to have Shane drive us down and drop us off at the door. That way I could take meds, without worry, & Taylor could use the wheel chair. It could have been miserable the way we were feeling, the fact that it was packed to the hilt with procrastinators like us…but instead it was amazing! The wheel chair enabled Taylor to not overexert himself and his sheer amazement & joy at each individual artifact was contagious. I read him every last sign in the place, we patiently waited our turn to see a 360 degree view of each item, we both had the audio tour, & we saw the Egypt 3D movie after the exhibit.

Taylor loves Eygptian & Greek Gods, legends, artifacts, etc. I hate history, so it amazes me how he can get so excited, but just watching him was worth any pain I was having. He truly enjoyed each second of the day. Shane met us for an early dinner/late lunch at Palettes, the second part of Taylor’s holiday gift. We had awesome food and it was a great way to end our day. Thank you to the Harris Family for such a tremendous gift! Taylor & I will never forget our special day and how you made that possible.

We also finally got a chance to have a low key Christmas exchange with Mark & Randy. Taylor got new Pharaoh Lego sets which were very appropriately timed and much loved! Mostly we enjoyed having a relaxing day chilling out with Uncle Mark & Randy.

With Taylor being sick so much he has gotten back into the habit of sleeping lot. He is also very nervous about school. It has been a year & a half since he has really attended class with any regularity. He is worried he will look dumb, or kids will make fun of him. I understand the anxiety, but I think he is worrying about stuff that will work itself out. It is very hard though to push him, it’s all I do anymore and he does deserve a break. I know this is best for him so I will do it. I just…I miss that confident kid that was eager to do everything. I know he will get there. Please pray he doesn’t have to have any unnecessary hurt or worries in the process.

One more thing and I will quit rambling on…I have been very down lately. My headaches have been fierce, maybe because we are reaching a let down phase on this journey and sheer adrenaline isn’t keeping me going anymore. I have also been incredibly sad the last week or so. I know my issues are nothing compared to what Taylor faces each day, but please add prayers of strength for me. I hate feeling so weak and helpless, it’s not who I want to be or how I want to be perceived.

We just love you all so much and are incredibly thankful for what you do and all that we have. Hope the New Year has started out happy & healthy for everyone!

Written Jan 13, 2011 4:30am

Just a little update…

Taylor went to school yesterday for two hours!!! He came home exhausted, sleeping for the next 3 hours straight! Then we had to wake him for Physical Therapy. I just woke him up to try another afternoon at school…I really hope by doing this slow & steady he is able to build up some stamina. I am so proud of him though for all he has been through and his continued ability to hang in there in the most difficult of times!

Thank you for all the prayers and concerns for me. I want to let everyone know that I am seeing a therapist and have been for awhile-she is likely what has kept me sane this long! Thank you too for all the advice on my headaches…I have been dealing with them as well as blackout/seizure episodes for 8 years now, but will try any new advice I hear!

You guys are amazing! We love and adore you! Thank you for helping us through the past year and a half. We know this too shall pass and that each step is progress in the right direction.

Written Jan 20, 2011 9:55am

I honestly had not realized that it had been a week since I have done an entry. There has been very little to report, so I guess that is good news.

Taylor has been working to get to school as many afternoons as possible. He has also been working with home bound tutoring and his friend Duncan. He has been seriously stressed about his school work, which has been hard on us all. I reassure him how proud I am of him and that he will get stronger everyday, but it doesn’t seem to mean much. I am very anxious to get his neuro-psych results on Friday. These results will enable us to know what assistance he needs at school and with homework.

The main physical problem he has been facing is increased stomach pain & nausea. I felt like for while we had a good grasp on this and then this week his pain has had him in tears again. We see his pain team and psychologist tomorrow. Hopefully we will get some good suggestions.

We did get some fun in this weekend too. We were able to get out and see “The Green Hornet” on Saturday and had a lovely dinner with our friends Alfredo & Kelly Sunday. Taylor & I built a new Harry Potter Lego Set with over 2000 pieces, Diagon Alley, this weekend and also watched our favorite football team, the Steelers, win a very exciting football game.

In addition, I have gotten together with some dear friends to hang out and to see “The King’s Speech.” It has been nice to feel better enough to have some adult time. My Aunt Linda is supposed to come down and visit Taylor & I for the next couple days, I hope the weather holds out so that she can make it.

That’s about it. I will fill you in on the next couple days of important doctor’s appointments. Let’s hope we get some helpful information.

Written Jan 22, 2011 2:29pm

So I don’t know where to start tonight…

Today has been a roller coaster of emotions reminiscent of our inpatient days. Normally I start with the bad and end with the good, but I want to give you a feel of the emotional range the day had. I have a lot to get off my mind, so bear with me…

This morning we got amazing news from Make-A-Wish about our trip to Australia. The dates have been set and we will be leaving for our trip down under on May 12th! This is much sooner than we had planned and somehow makes it much more real. In addition, we now know that we are going to get to see a lot of the continent, much more than we could have dreamed! Our trip begins in Cairns (Northeastern Australia) with the Great Barrier Reef. We will stay there for 4 days & 3 nights before we fly to Ayers Rock in the Australian Outback (Central Australia). From there we will venture to Alice Springs before finishing our stay abroad with 4 days & 3 nights in Sydney (Southeastern Australia). What??? That is a crazy, wonderfully amazing vacation!!!

Of course Taylor & I spent the morning on the Internet discovering all the amazing things we will be getting to see & do. This is honestly the most excited & happy I have seen Taylor in what seems like an eternity. For one morning he forgot about pain, exhaustion, anxiety…

I swear this morning feels like a million years ago now…

So as you know, we had the neuro-psych evaluation results this afternoon. To set this up we knew or at least suspected that things were not “normal.”(I am beginning to have an extreme dislike for that word, even as I long for things to be that way.) What I did not expect was to hear things like brain trauma, brain injury, damage to the brain…which I guess sounds better than brain damage even though it is the same.

For those who don’t know, Taylor stopped breathing back in July. He ended up in the PICU where the doctors did scans showing a loss of oxygen to the brain resulting in a “concerning area” on the cerebellum. This particular area has to do with motor skills, hand-eye coordination, etc. In talks with the doctors today it is thought that this damage is permanent and effects more than we initially imagined. I will say that Taylor has been “clumsy” and what we have perceived as weak and still healing. Now it is thought that this is the reason why he has been walking differently, has trouble writing, cutting, etc. All I can think about is that morning…What if I knew how to do CPR and didn’t have to wait for the 911 operator to tell me what to do? Maybe he wouldn’t have been deprived of oxygen for so long…

Other concerns that they had were memory loss, executive skills, the length of time it takes for his brain to process…At some point I don’t even think I was hearing what they said anymore. It was eerily reminiscent of the meeting we had where we were told of Taylor’s cancer. There are just some words that parents should never hear…cancer, damage to the brain, intubation…

We will receive a full report in a few weeks with complete suggestions for how to help Taylor to learn best and how his teacher’s and school can help him. Initial suggestions are voice activated computer software, assistance in class with instruction, increased time or no time limits for tests/assignments…so much information.

One of the hardest things for me personally to hear was that they don’t know that he will improve. It isn’t just the chemo that is thought to have hurt him. The doctors think it may have been his lengthy PICU stays where he was intubated and unconscious that did the most damage.

I am reliving everything I have said to him regarding school, his tutoring, homework…As a parent your job is to push your kids to be their best, to encourage them…but maybe I have been unrealistic with my expectations. Have I missed things? Mistaken the amount of time it takes him to complete things as laziness? I have all this information, now what do I do with it?

The hardest part of today however was Taylor’s reaction. He broke into tears thinking that he is stupid and having so much more anxiety surrounding school. In hindsight I don’t know that allowing him to hear the information was beneficial, but I figured they know what they are doing right?

The doctors did give us some good information that I want to end with. They said that his overall intelligence is higher than average, that his ability to express himself verbally was above average, and that his nonverbal skills-puzzles, etc. also were above average. In their opinion he is at or above grade level in all key subjects. They said over & over that as an adult these things will have little effect on his ability to be a successful, happy adult. (He’s 9, so I am a little more concerned with today.)

I really don’t know what else to say except please pray for him. I am sure that tomorrow we will be okay, but tonight we are all sad that we are once again in the position of easing his fears and trying to make things that seem so unfair okay.

Written Jan 27, 2011 11:53pm

First I just want to say thank you for all the kind messages on this site, e-mail, Facebook, etc. You guys have given us lots of support as we process everything we heard last week. If I haven’t gotten back to you yet, be patient-I will need all the help I can get with school, etc. to find a spot where Taylor learns best.

After all the emotional craziness of last week, we have all really taken a break. We have had play dates with friends, been to the movies, & seen family. It has been a nice change of pace for us. Shane left this morning (we took him to the airport at 4:15am!!!) for a long over due trip to Texas to see his family & get some down time. He needs & deserves this, so have fun down there and take lots of pictures!

Taylor and I will be heading up to the mountains this weekend for his annual Cub Scout Snow Mtn Ranch trip. Last year we went, but he was so sick. We lugged IV nutrition, oxygen, and every medical supply you can think of up…this year just oxygen & meds!!! It will be so nice for us to spend time with our friends up there and get a change of scenery for awhile. They have a great tubing hill, we will see if Taylor is up for that or not, and lots of other activities.

This has been a super busy week as we work more with transitioning Taylor back into school, etc. He has had tutor time, class time, and acupuncture already. It was also the Cub Scout Pinewood Derby Race this week. The picture is of him holding his sarcophagus car. The top comes off to reveal a mummy inside…Thank you again to the Harris family for tickets to see the King Tut exhibit, it left a huge impression on him and inspired the car. Thank you also to Nate Graf for all his work cutting Taylor’s car out…you should get to keep Taylor’s trophy for most effort displayed at least 1/3 of the time!

Tuesday was Taylor’s 9 mo. off-therapy oncolgy tests. It doesn’t seem like it could have been 9 months since chemo, but it has been. These are super stressful even when you anticipate good news. After all the anxiety though, things are as expected. His blood work is all at or nearing normal ranges and he remains cancer free!

There are still lots of worries and many more steps to take along this journey, but there has been a lot of good this past week. I saved the best for last though…

After almost 2 years of sickness and inability to be in the swimming pool, Taylor hit the water!!! His ridiculously amazing coach, Sarah, met him yesterday morning to see how the water felt and what he could handle. Taylor has had a ton of anxiety over a return to the pool. He has wanted this for so long, but then he really got himself worked up thinking he would have forgotten strokes and even more absurdly, that he would let his teammates down and they would make fun of him. For those of you who don’t know, he swims for Rocky Mountain Thunder. His coaches & teammates have been so supportive and encouraging…Taylor just carries the weight of the world on his shoulders and needs some time to remember what a great kid he is and how much he is loved.

Anyway, his return to the pool was really an amazing sight. Both Sarah & I were teary eyed as we watched him swim 12 laps before we said that was enough and had him get out. Taylor’s smile was huge and his enthusiasm and desire to swim even bigger. We never would’ve thought he’d swim that much the first time back, but what awesome physical therapy!!! He beamed the rest of the day, when he wasn’t sleeping that is-the swimming clearly wiped him out. This was a huge step for him physically, to help with all his nerve pain & to regain strength, and more importantly, his emotional state. For once things were easier than expected and he just got to savor a little bit of what life was like BC (Before Cancer). It was really a proud moment.

Next week he wants to start slowly practicing with his team again. It may be a long time before we are attending swim meets, but Taylor is well on his way to being prepared for Australia. Thanks RMT for all the support you have given us, it is going to be great to be a part of swim life again!

Before I sign off, please continue to pray for our friends the Bamfords. Their loss of their son Mike is so fresh and I want them to feel all our love & support as they find a way to grieve and a path toward healing. Our friends Sinjin, Elizabeth, Taylor Jones, and all the other amazing kids we have met on this journey need your prayers too. Beating cancer is only a part of what they are doing and many face challenges much after they are cancer-free. Jullian Willis is another child we met at Children’s and he is fighting hard for his life right now. Please pray for him & his family.

We sure are grateful for each and everyone of you who prays, thinks of us, sends messages, and so much more. We love you more than you could know!!! Thank you for listening when there is nothing else to say and cheering with each small step forward!

Written Feb 1, 2011 11:10pm

I have to start by saying that this weekend Taylor & I both had more fun than we’ve had in…I don’t even know? Forever. On Friday Taylor wanted to go to school in the morning for a special architecture class and then went back in the afternoon like he has been. He ended up being there almost all day which is a first in over a year!!!

After school we met Coach Sarah at the pool where he swam for about 45 mins. This time it was way more than 12 laps, it was more like a slower, shorter version of swim team practice. He ditched the swim shirt he had me buy before Wednesdays trip to the pool and replaced it with his normal swim team speedo and cap. Amazing how fast the confidence came back to him!!! He is so happy to be in the pool again. In a couple weeks we will all 3 be starting our scuba lessons & prepping for our big trip down under.

That evening Taylor & I drove up to Granby with our dear friend Ms. Erin. Erin used to be Taylor’s preschool teacher and fast became a wonderful friend. She moved to Wyoming so we don’t get to see her as often as we would like. The last time we got to spend good quality time with her was July 2009, when she joined Taylor & I on a trip to Mount Rushmore a few months into what we now know to be our cancer journey. It seemed appropriate that she join us on our first real journey as Taylor turns the corner to good health as well!

The three of us spent the weekend crafting, ice skating, tubing, swimming, and hanging out with Cub Scout friends. I have added a few pictures and will add more over the next week. Taylor had so much fun playing with his buddies Spencer & Carson their siblings Trenton & Keaton, and some of the sisters Destiny & Krystal, along with a slew of other scouts and friends. Erin & I enjoyed time together and with my friends Nate & Heather and Jen & James, among others.

The whole weekend Taylor pushed himself to new limits physically, doing everything he could to keep up with the other kids. He was smiling and laughing like I haven’t seen in ages. It felt so good to see him being a regular kid for a change. He pushed himself on the skating rink to a level I wasn’t sure he could get to. This was both the most exciting thing to see & the hardest. When Taylor was in preschool he was in pre-hockey skate lessons. He was by no means fast, but he could skate fairly well. Watching him struggle so much, hanging on to the wall, other people, and the training tools, I felt so frustrated. It was clear to me that his motor skill issues are gonna be a challenge with some things. I also felt so proud that he was trying so hard, much harder than I would’ve expected him to, or than I myself would. He did not let embarrassment stop him. He did not look at his peers skating effortlessly and quit, but embraced the fun side of things and let the rest go. To me it was a beautiful sign that he will persevere through any challenge he faces and come out smiling.

I saw that same determination Sunday morning when we got to the sledding/tubing hill. The return that takes you up the mountain was not running so I figured he would do a couple runs and stop. Instead, he kept up with all his friends out there. It may have taken him 20 minutes to get back up the hill, but the joy of going down pushed him to do it over and over again. He played all weekend until he was almost in tears from the neuro-pathic pain. He needed his oxygen at night and extra pain meds in the day, but he didn’t let that keep him from having fun! This was just what we needed a “normal” weekend, our new “normal.”

I just can’t say enough how grateful I am to our friends & our Cub Scout Pack for embracing us the way they have. You made this weekend such a special one for us. You gave Taylor a chance to truly live for awhile. I hope that this weekend of fun will help propel Taylor and get him through the next few months of appointments & transition into school.

Yesterday he literally slept 18 straight hours. His body is so tired and worn out that you can see him struggle to walk and hurt to move. However, that smile is ever present on his face too! This morning we had to be at Children’s at 5:30 am. Taylor is getting some injections around his scar to decrease nerve sensitivity and some injections in his head to help with headaches. It should be fairly quick procedure, made super long only because he has to be sedated. Still we hope to be home by noon.

I pray that these injections help him to be more comfortable. I know that all the physical activity he has seen this week (more than the last year combined) can only be good therapy both mentally & physically. Now this weeks goal is to get a good plan set up at school and set on the path towards a full time return to class.

Thanks again for all your love & support. It is nice to share all the good news with you!

Written Feb 2, 2011 2:39am

So we are now in recovery waiting for Taylor to wake up. It is taking a little longer than expected and he is needing more oxygen than usual. Looks like we will be here a little longer than expected just to be safe. The nurse is calling a pulmonary doc for his input.

I am sure everything is fine, but will let you know when we can go home.

Written Feb 2, 2011 5:29am

We will be home soon. Taylor finally woke up and while his oxygen remains low, they are comfortable letting him go. We have to keep an eye on his stats for the remainder of the day, but no biggie.

Taylor said he already is feeling less pain in his stomach, which is incredible! He has PT & swim practice today and wants to attempt both…his energy level is going to fast surpass us at this rate!

Thanks for the prayers & well wishes!

Written Feb 9, 2011 10:39am

Wow!!! This past 10 days has been amazing! I am noticing such wonderful changes in Taylor and seeing him smile and truly be happy. I am exhausted just trying to keep up with him.

Last week he had the nerve block injections placed around his belly scars and head. He still is very sore & bruised, but I really believe they are helping. He still complains of pain, but he is pushing his body so much that I have to believe they are giving him some relief.

He worked with tutors, went to school a couple afternoons, had acupuncture…a very normal week in a lot of ways. He also practiced WITH his swim team two days last week!!! Each time he got so nervous, breaking out into hives head to toe, but then he would hit he water…45mins + he got out happy as a clam. I can see him smiling more and having a little swing in his hips now. This is the best medicine he could have. I am so thrilled to see his confidence come back some, even if only in the pool.

This weekend Taylor and I took another trip to the mountains. I wasn’t really all that excited to go. It takes a lot of planning, packing, & energy to take Taylor overnight right now. My friend Carla (Elizabeth’s mom) practically forced me to go though…and boy am I glad she did!!! We attended a cancer family retreat up in Empire. Taylor was so happy to be around kids his age that had been through similar treatments and care as he had. At the retreat he was actually “normal” as all the kids there had or are fighting cancer, or are siblings of cancer kiddos. It was very therapeutic for him.

For the parents they had a support group that was ridiculously helpful, massages, acupuncture, hair dressers, etc. After pampering us emotionally & physically they took us all out to a nice dinner. I met some of the nicest families, parents & kids. It was really a great weekend. Well, all except for the hellacious drive home in my miniature Kia hatchback…

I just really want to thank you all for your love and support. We have so needed the past couple of weeks emotionally. I feel like we are headed into new territory once again, but that this time it is a path toward healing. We still face daily struggles with pain & eating, but we have had reasons to smile and keep putting one foot in front of the other. While I long for the days of no tube feedings, no pills or oxygen, full days of school attendance… I also happily look back at how far we have come. We truly couldn’t have gotten this far without all of you…do you know that? I know I say that, but I hope that you can really feel our gratitude. We have so much love for all of you!!! Thank you for sharing this often times bumpy ride with us!!!

Hope you enjoy all the new pictures!!!

Written Feb 10, 2011 5:24am

I forgot to share this with you yesterday…

Taylor has decided to be a part of a special fund raiser to raise money for cancer research, St. Baldrick’s. He will be participating as a member of his swim team, Rocky Mountain Thunder. He has a goal to raise $500. If you want to help support him and raise money for cancer please go to the following link:

http://www.stbaldricks.org/teams/mypage/teamid/68253

The event is March 4, 2011, at Arvada Senior High School. He will be shaving his head in support of all those who have been lost to cancer, beat cancer, and continue to fight cancer. I am super proud of this decision, as his hair means more to him now, having just come back in, than it does to most people. However, he also knows that this can make a difference!

Thanks for your support!!!

Written Feb 12, 2011 2:51am

THANK YOU!!! So many people have donated to St. Baldrick’s in Taylor’s name that he has already reached half his goal!!! He is so excited, thank you so much.

This week has gone very well too. Taylor has made it to swim practice twice & completed the ENTIRE practice (75 mins+) each time, worked for 5 hours with his home-bound tutor, and gotten up to school as well. It just amazes me to see his strength and stamina finally returning.

On Wednesday we got to meet an incredible group of high school students from Rock Canyon High School. They are devoting a week of their time and efforts to raising money for Make-A-Wish and, specifically, want to fund Taylor’s wish to Australia. Taylor was his charming self and enjoyed every last minute of the night. They brought his favorite dinner, California Pizza Kitchen. We will be attending lots of spirit week events and are so grateful for these amazing & generous students!!!

Life is good. We hope you have an awesome weekend & know that we love you!

Written Feb 20, 2011 3:58am

So my plan is to do two entries today. It has been brought to my attention that I have only been posting about how fun & positive things have been, which is still true, but that people also want to have a good thorough health update. So I will start with the fun stuff and then post a health update after to give everyone a good idea of what all has been going on.

Taylor is doing so well in his attempt to raise money for St. Baldrick’s & cancer research!!! He has surpassed his goal of $500 and now is hoping to get $1000!!! Thank you so much for your donations & support of him. It makes us so very proud that he is willing to shave his head for such an important cause, after all it hasn’t even been but 6-8 months that he has had hair again, and only about 6 weeks since he has been willing to have a haircut. Awesome!

I have tried to make this week fun with Valentine’s stuff, since holidays were mostly spent in the hospital. We had a few of his girlfriends over for dinner and crafts last Saturday night & went to his class party on Monday.

He has been swimming still and was able to make team practice three nights this week! We also got invited by our friends the Suyats to an Avalanche game. Taylor & Crystal had a blast talking and watching hockey right on the glass. They were also given game used hockey sticks too!!! Thank you guys for taking us!!!

If that wasn’t enough excitement for the week…This week is Make-A-Wish week at Rock Canyon High School. RCHS is doing a weeks worth of fundraising for Make-A-Wish and specifically, has sponsored Taylor’s trip to Australia. We attended a pep rally & dodge-ball tournament at their amazing school yesterday. These kids are truly inspirational! They took Taylor under their wings and made sure he felt like royalty. He even got to play dodge-ball, of course with specific instructions that he not be hit hard. He is enjoying all the excitement and special treatment, especially from these beautiful teenage girls…I am in trouble in a few years for sure.

This week we also were chosen to speak in front of the Professionals Miracle Foundation. They sponsored the funding for the Beads of Courage program that has been so much a part of our life the past couple years. You will probably remember that he gets a bead for each poke, overnight stay, clinic visit, chemo infusion, x-ray, etc. Anyway, they asked us to tell what the beads Taylor has earned meant to us. I stumbled and teared up, but Taylor cracked jokes and had 300 Realtors smiling in no time. It was great practice public speaking and at the pep rally he did it again in front of 1600 students! It was really special to us to get to say thank you to all these folks that have contributed so much to our family and so many others!

I am sure you can tell what a busy week this has been. We are planning on a fairly quiet weekend chillin at home. So now I will end this entry and begin the “medical” entry in just a minute.

Written Feb 20, 2011 4:33am

Those of you who know me can attest that I like to smooth things over, be upbeat & positive, and I HATE needing others help. I like to be the one that helps. The past two years have changed a lot of things, and I hope made me better about letting others help us too-and you have!!! It has been brought to my attention by some of my dear friends that I may be sliding back into my old habits and possibly even “sugar-coating” things. Thank you for setting me straight and telling me that people want the whole story not just the highlight reels.

So here goes…My attempt to share some of what has been going on that isn’t quite as rosy as my postings make it seem.

The best way I can describe life right now is to have you picture a man who spins plates. Have you seen those guys? They are spinning plates on their hands, legs, head… That’s me. Each plate has important stuff, Taylor’s medical needs, his school, his emotional needs, our relationships, family time, my personal health, etc… If one plate gets ever so slightly off balance they all come crashing down. There is a lot of stress in keeping those plates spinning.

Each plate is critical, even though it may seem less important on the surface. So where many people may see swim team as an activity that is less important than school work, I see something totally different. I see swimming as being one activity that Taylor WANTS to do, makes him so happy, allows him to feel normal-normal meaning how he felt before cancer, not to mention that it will improve his health to be active again, hopefully stimulate his appetite & help with his neuro-pathic pain, and absolutely improves his mental state-that’s a fact.

Meanwhile, school has been a struggle. He feels like his friends have moved on and are not wanting to be burdened by someone who can’t keep up, that he is disappointing his teachers by not being able to do his work as quickly and well as before, and that he is a failure if he can’t get enough done to move on to the 5th grade. Now I know these things are not factual, I have tried to put a different spin on all his concerns, shed light on all the areas where he is being too hard on himself, but folks he is 9 and these are valid feelings, true or not. He comes home crying at least half the time.

I NEVER thought I’d be the mom who said school wasn’t the most important thing, but right now I feel like Taylor is on an emotional roller coaster and that his car could go off track at any moment. My first priority is his health and that includes emotional. That said, I know he will be miserable if he stays behind his class and will do all possible to make sure that doesn’t happen. He currently is getting maximum available home-bound tutoring each week, in addition to tutoring with his former teacher and family friend, and a high school friend. Each one of his tutors is great and gets him to see a different side of things. One-on-one he is able to not feel as behind or slow to process and is working hard to catch up to where his class is in all subjects. So he is getting 8+ individual hours of instruction a week, plus has been making every attempt to attend class from 12:15-2:45 each day-which has been happening about 75% of the time.

Taylor still has numerous doctor’s appointments in any given week as well. He sees PT once a week, Acupuncture once a week, has his therapy appointment every other week, and sees GI, Pain Team, Oncology, etc. as needed, usually once a month. It has been pointed out to me that many people see him as a healthy, regular kid now-amazing, and compared to last year at this time so true. There are still many things going on though that can use your prayers. Here are a few:

Emotionally-Taylor is finding it difficult to find his way in the world again. He wants to be “normal” again, but get so frustrated at the fact that everything around his is different and “normal” needs to be different too.

Physically-Taylor’s pain gets worse the more active he is. We struggle to find balance in pain-activity level-emotional needs. We long for the day when his neuro-pathic & stomach pain may by gone. His nausea is ever persistent as well. He has been eating better, but not enough calories to support his increase in activity. The feeding tube has been very irritated lately. He asks me if he will ever see a day without pills (he still takes 30+ a day), pain, and the freedom to just eat normally.

For me I selfishly ask for prayers of strength, health, & peace. I need to know that whatever decisions I am making, and it seems that I make a million a day, are what I truly believe to be the best having 100% of the information regarding all aspects of Taylor’s life and having his full health & happiness in mind. I need to feel that when I inevitably make wrong decisions, it is okay & my friends will support me.

It’s crazy how deep cancer hits and the after shocks can be felt in every area of life. I cannot say how much we appreciate each and every one of you who continues to pray and read our journey. We are so bessed and feel so loved. I absolutely will continue to post all the fun & happy things that are happening for Taylor, but I will also try better to give you the real and gritty side too.

Our love is with you, thanks!!!

Written Feb 26, 2011 3:43pm

This has been one crazy, hectic, long….super fun week!!! As most of you know, Taylor has been participating in Make-A-Wish week with Rock Canyon High School. I cannot say enough about the staff & students at RCHS!!! They made this week such an incredible one for us, granting Taylor’s wish to go to Australia and 6 additional wishes!!! They raised over $40,000 in one week!!! This doubled their goal of $20k, which was the previous state record, and even set a new NATIONAL record!!!

These kids were so very inspirational for all of us, but no one more than Taylor. He has been so very welcomed by each and every student at RCHS and was so very sad the week came to an end. We both hope that we are able to stay in touch with all our new friends. Please check out the new pictures I have posted here and on Facebook at Michelle Carlock.

RCHS & Taylor even made the local news!!! It’s very cute and short, so check it out if you have a chance. Here is the link:

http://www.9news.com/video/default.aspx?bctid=803921745001&odyssey=mod%7Cnewswell%7Ctext%7CFRONTPAGE%7Cfeatured#/News/Kids+for+a+wish/49906872001/50183015001/803921745001

What a ham, right??? He enjoyed hanging out with all the beautiful girls and wonderful boys so much. I can’t even express to you the gratitude I have for these students. They have won Taylor over and will forever have a place in our hearts.

Well, it’s late and we all have colds now…too much partying I guess!!! Please say prayers of thanks to each and every person who made this possible & specifically RCHS parents, staff & students, RCHS Student Council, & Make-a-Wish.

We love you RCHS!!!

Written Mar 3, 2011 2:54am

We have bronchitis. Taylor has been sick since last Thursday unable to attend school, swimming, etc. Thankfully he never got as sick as I’ve been, likely because he was already on antibiotics, but his is dragging on. He is very tired and has been sleeping around 16 hours a day. We are praying this clears up & he is back to feeling well soon.

I have had 48hrs worth of antibiotics now and am not feeling at all better. I am hoping to see a major turn around in the next day or so.

Taylor is going to do his best to work with his home-bound tutor this morning, even if he can’t do a whole session. He doesn’t want to get any further behind.

Its weird how a swollen lymph-node now can make me worry so. I know they are common things that happen when you get common illnesses, but after Taylor having lympoma…well you fear the worst no matter how hard you try not to.

This Friday is the day Taylor shaves his head for cancer research. He surpassed his first goal of $500 and made a new goal of $1000. He is close at $825. If you want to help push him over, here is the website:

https://www.stbaldricks.org/members/profile

That catches you up. We are off to rest, watch movies, & drink plenty of fluids… Please keep our friend Myles in your prayers as he continues treatment for a cancer relapse, Elizabeth is back in the hospital with unexplained pain so they are doing a PET Scan to rule out relapse, another friend, Taylor, is in the hospital with pneumonia… Also please pray for Chase, Sinjin, and the many others who are still fighting.

Written Mar 5, 2011 3:21am

So I’m not gonna lie, this week sucked. Both Taylor and I continue to be fighting bronchitis & colds. Good news about being sick, I have lost a little weight for our trip, LOL. Bad news, so has Taylor. His weight was up to 90lbs, which is exactly where they want him to be for his height and bone structure. Now he is back to 79lbs. He still has that feeding tube we can give him extra fluids and food through, which we’ll start back up tonight.

I wanted to thank you all for donating to St. Baldrick’s. Taylor has achieved his goal of $1000 for cancer research!!! We are very thankful and proud. So tonight he will shave his head. We have told him repeatedly that he can keep his hair and still give them the money, but he wants to support his friends still in treatment. What a great boy!

Our plan for the weekend is to get plenty of rest. I really hope he is able to go back to school next week. I had no idea what a cold would do to his tired body, even so long after treatment.

We do hope to go support our new friends at RCHS tomorrow and see a performance of Grease. Fingers crossed!!! Maybe the shamrocks will bring us some luck.

We love you guys tons!!!

Written Mar 10, 2011 5:55am

Just lost an entire post I have been working on…uuuggghhh!!! I will post about us later, but I have an important prayer request.

Delaney is a 5 year old with an inoperable tumor. She has been given only a few days to live. Please surround her & her family with prayers of love. I can’t even begin to understand what they are going through, but know that prayer can make a difference.

Written Mar 14, 2011 3:45am

I really did mean to get right back on and complete an entry, but time flew by and here it is Sunday. Taylor & I are STILL fighting runny noses and lack of energy, this battle with colds & bronchitis has been a long one. I guess in hindsight it isn’t surprising…I mean Taylor is still weak from recovery and I have spent nearly two years stressed to the max and run down. It’s amazing it didn’t hit us sooner. Anyway, we are on the mend which is great and Taylor plans to return to school and swimming this week.

The past couple weeks Taylor has been doing all he can to have his home-bound tutoring sessions still and attend doctors appointments. We saw the pain team Monday and decided we would try another go-round with the steroid shots. The first week of April they will put him to sleep and inject the abdominal area surrounding his scar trying to reduce pain and nerve sensitivity. There is hope that the more this procedure is done, the longer lasting the effects will be. I hope that is true because it seems like he just got over all the crazy bruising & soreness the injections leave behind.

The pain team also suggested occupational therapy to help with headaches. This will begin over spring break. We now have an appointment with GI as well to review some of the gastric emptying studies, etc. We are all desperate to help his pain!

As you can see from the pictures he shaved his head for pediatric cancer research. We are so proud of him, he raised over $1200!!! I think he looks adorable with or without hair, his grows so fast in another week you won’t even know it was gone. Thank you all for your help raising the money & supporting Taylor & St. Baldrick’s.

Thank you for all your prayers for Delaney. She is still fighting hard so please continue them. When you pray for Taylor please pray specifically for pain relief and decreased oxygen needs. Throughout this battle with respiratory issues his oxygen needs at night have increased, which always worries me…we certainly don’t need anymore scares like before.

We love you so much and hope you are enjoying a beautiful Sunday!!!

Written Mar 20, 2011 2:42am

It’s been quite a week around here. We are FINALLY getting over our respiratory infections and I am gaining back a little of my energy level. Taylor’s energy level has still been very poor and his pain has been much higher the last three weeks or so than it has been in 2011. Obviously this makes me worry. I am trying to comfort him as best as possible and he is trying to use as few pain meds as necessary to keep him in a comfortable place. Only 2 more weeks until we try the shots in his tummy for pain control again.

The decreased energy & increased pain/pain medication of course doesn’t help his oxygen needs at night. I really wish we could find an underlying reason for the need. Maybe then we could fix that and his medications wouldn’t be so problematic.

Anyway, this coming week is a big deal for him so I really hope he stays as healthy as possible. Yesterday he left on a week long trip to Aspen, Colorado with the Shining Stars foundation. Volunteers, doctors, & nurses take the kids to Aspen for an entire week to learn to ski/snow board with private instructors. They flew to Aspen on a private corporate plane, stay at the Inn at Aspen, ski/snow board daily, snowmobile, take ultimate taxi rides, etc. Each night they have a party of sorts too & the whole program is free for kids who have or have had cancer. The goal is to let the kids share their stories, have fun with others who have had similar struggles, and allow kids the chance to have some independent freedoms in a safe environment. It sounds amazing and we have heard only great things.

I hope and pray that he will find a renewed state of mind to push him over this latest hill he’s climbing. If things get worse medical staff is there and I can drive up the mountain to get him. I have been repeating this to myself a million times in the past 24 hrs! It would be hard to let him go on a trip like this for the first time if things were perfect, but having spent 2 1/2 years without even so much as one over night apart has made this a bit challenging for me. I cried like a baby watching his bus pull away!

I know this trip will provide us all with a much needed break though too! I hope to get a million things done this week like taxes & consolidating medical bills…fun stuff I have been procrastinating doing. I also hope to see some friends and have a bit of guilt-free fun myself. I will say that this house is crazy quiet and I kept waking up to check the pulse ox etc. He’s with nurses & doctors…I have to keep reminding myself.

Monday is Taylor’s 10th birthday. It will be very weird to not be with him, but we plan on celebrating with family next weekend. He hasn’t felt like having a party, so we are postponing that and will celebrate an un-birthday when he feels up to it.

Taylor did call yesterday afternoon to say that he got in all right, don’t worry mom, I love you & man that plane was cool, even if the ride was bumpy. I was happy to hear from him and surprised he called so quickly. He sounded happy and said he is rooming with another 10 year old boy. It will be so good for him. Most of his friends have gotten much more independent, etc. over the past couple years, while he has needed us much more than he would’ve wanted to. I really hope this will be a turning point in his confidence level.

Well, before I sign off I want to say thank you for all the prayers you sent up for Delaney and her family. She was laid to rest yesterday and is suffering no more. Please continue to lift her family in prayer as they try to find peace and comfort in this awful time. As always, we love you all and are so very thankful there is an avenue to express all our hope, fears, needs, etc.

Written Mar 21, 2011 2:47am

I heard from Taylor last night. He said he was a little homesick but having fun. He skied 2 hours in the am and another 2 hours in the afternoon, so he seemed tired. This was his first time ever skiing and he said he really liked it and “didn’t even fall.”

He seems to really like his roommates Sunny & Preston, both 10 year old boys. Time with kids his age that understand what he’s been through is exactly what he needs!!!

VERY quiet around here…I have had dinner/movie dates with friends the past two nights, so that has been fun. I just can’t manage to sleep with Taylor out of the house. It seems silly I know but I keep waking up thinking his pulse ox isn’t working since I can’t hear it. My luck I will get used to it just in time for him to come home and the beeping resume. 🙂

I talked to Elizabeth’s family this morning and they are preparing to leave for New York next Sunday for her Make-A-Wish trip. She has experienced many problems & hospital stays since finishing chemo last fall. Please keep her and her family in your prayers, they all deserve a fun & healthy trip to the BIG APPLE.

Love you all!!!

Written Mar 24, 2011 10:30am

This week has been loooonnnnggg!!! I miss Taylor so much now it is just ridiculous. He has been very homesick too and yesterday called to say he wanted to come home. We ended up talking for awhile and he decided he wanted to stay for the Ultimate Party Taxi Ride (Similar to a party bus or a limo) and snowmobiling. He enjoyed both immensely!!! Only two more nights now…

Taylor did say that the skiing was hard on his legs and feet, I am guessing his overall weakness & neuro-pathic pain are responsible. He said his nurse has been giving him pain meds that help. They had him use a sit-ski and that seemed to help a bit. I think he has pretty much decided to quit skiing and rest up, I am sure he is exhausted by now.

My Aunt Linda came down to stay with me for a couple days today. We are hoping to get some projects finished around here and then celebrate Taylor & Shane’s birthdays Friday night. It’s just very quiet & uneventful around here right now.

Hope you are enjoying the nice spring weather. I am excited to have Spring Break next week. Taylor will need some down time for playing games, watching movies, & of course snuggling!!! We love you all and hope this finds you well.

Written Apr 7, 2011 12:15am

I can’t believe how long it has been since I have typed an entry, sorry about that. Taylor got home safely from Aspen and was exhausted! We proceeded to spend the next week, Spring Break, catching him up on sleep, playing games, and just hanging out. We missed each other so much, so this was wonderful.

Taylor said Aspen was really cool and he enjoyed having some freedom, meeting some new people, and doing new activities. He loved the Ultimate Taxi ride, snow-mobiling, etc. From what I can gather they went from 8am-9pm, daily. Taylor struggled to keep up with all the fun. It’s an amazing program, sponsored by Shining Stars. If you have or know a child who has or has had cancer tell them about this opportunity. There were even children/teenagers here from other states and the entire program is free due to donations & sponsors.

March was a rough month for us. I have been to the doctor many times (nothing to worry about) in addition to all the appointments that Taylor had. Taylor’s pain this past month was worse than any time since Thanksgiving, with me dosing pain meds nearly round the clock. He had to put swim team on hold and was only able to make school one day! He did manage to stay current with home-bound tutoring no matter how much he hurt and two weeks of the month were Aspen/Spring Break. Still, this was a frustrating month, feeling like a huge setback after February. Oh, and my debit card number was stolen, a major inconvenience to say the least!

Taylor’s pain led to our decision to once again try the nerve block injections for pain control. You may remember that he first had this procedure done back at the end of January. February brought about a return to swim team, increased attendance in school, etc. Seemed worth it to try again. Yesterday Taylor was taken to the OR, sedated, and had approximately 50 injections in his stomach, neck, & head. The procedure went well and left him sore & bruised. His pain was significantly better last night than it has been in weeks. It was the first day in 5-6 weeks that I didn’t need to give him a single dose of additional pain meds(other than the pain patch he wears 24-7)! He even went to physcal therapy without extra meds! We are hoping & praying that this will enable him to have increased energy and a return to more normal activities again.

When you are saying prayers for Taylor, please, please pray for his emotional well being. This roller coaster ride of pain and his continued struggle to return to a healthy, normal life has taken its toll. I have noticed Taylor’s withdrawal from friends and activities he loves, his lack of patience, and his overall lack of energy and desire to push through difficult times…it’s hard to explain. I understand. I too feel the frustration of his continued struggle. He is nearly a year out of chemo therapy. We certainly all expected to be at a much different place by now. Taylor continues to meet with his counselor and we encourage him to push through when appropriate. I saw a real change in him when his pain was better controlled and am hopeful these injections will help with this too.

The good news is that we have lots of fun, positive things happening in April & May. Taylor’s Make-A-Wish trip is coming up fast. We leave for Australia on May 10th!!! The count down has begun, 5 weeks from yesterday! In preparation for the big trip to the Great Barrier Reef we have all been getting our scuba dive certification. We are nearly finished with all we can do locally and will be going to the Blue Hole in New Mexico at the end of the month to do our open water dives and complete our certification. It will be a quick trip, but fun.

It’s nearly Easter, baseball season is here, & Spring brings with it a whole new feel. I have faith that the next couple of months will be positive, fun, and with a little luck, a turning point. Hope this finds you in good health, great spirits, and surrounded in the love of family & friends. We love and appreciate each & every one of you!!!

Written Apr 12, 2011 2:24am

I don’t always know how to start telling you all about things happening in our lives. You’ve been reading so long and it’s always the same thing from me. Today I want to impress upon you how very important this journal and all the people who read it are to me & to Taylor.

This journey has been such a long, trying one…We have many things to be grateful for. I hope it doesn’t sound like we aren’t. Life is like a roller coaster ride, the dips & heights are just a bit more pronounced for us right now. It doesn’t get much better than a trip to Australia, or lower than your child hurting so much they want to give up.

Many of you have asked what you could do to help. For a long time I have said nothing. What really is helpful though is to hear from you. Some days we are so down I don’t know where we will get the strength to face the day, then we read a note from a friend, family member, or even a “stranger” that helps us remember how much we are loved & how far we have come.

It doesn’t have to be much…a note in the guestbook, a text, an e-mail or message on Facebook. Taylor loves cards!!! It might seem like nothing, but right now we are drawing strength from you. These simple gestures can carry us for days.

You have been a wealth of support & strength for us. We love and appreciate all that you do and all that you are. Thank you!!!

Here are ways to reach us:
tze0321@comcast.net
Michelle Carlock on Facebook

Written Apr 12, 2011 3:34am

It would be helpful to have an address, sorry…

Taylor Easterberg
3110 Upham St
Wheat Ridge, CO 80033

Also, he has his G/J tube (feeding tube on his stomach) pulled and replaced tomorrow. It’s no big deal, a routine changing, but he is stressed!!! It is not comfortable & there isn’t sedataion. Prayers that he doesn’t get too anxiety ridden about it and that all goes well.

Written Apr 15, 2011 1:17am

Thank you all for your kind words & prayers. They really help lift our spirits up and this week we have needed that as much as ever. Taylor’s constant battle with pain (among other things) seems to have taken a drastic turn the past 6 weeks and especially the last week. He wakes up in the night crying, which he hasn’t done for a long time. The fact that dilaudid & a heating pad helps is of some comfort, it gives us a tiny it of control.

His pain is mostly in his stomach, but he has started to get awful headaches. Rest & quiet seem to be the only things that help his head. This morning he said his back has been hurting a lot. I am very much trying not to go to a bad place with my thoughts. (These symptoms mimic the ones that ultimately led to his diagnosis.) The problem with knowing the nightmares that are out there is that it’s hard to keep control over your fears.

Taylor has LOTS of appointments in the next two weeks that will help us figure out why he is hurting so much again. Tomorrow he has a bone density scan (DEXA), Wednesday he meets with the GI doc, Thursday is Pain Team, & the following Tuesday he sees Oncology. He also has his regular psychologist, acupuncture, & pt appointments. Between all of those doctors I pray that we can find some direction.

Most of you know he had his g/j tube replaced Tuesday. This procedure was awful. They gave him valium and by most accounts this isn’t supposed to hurt, just feel uncomfortable. He was screaming the entire time. His belly is so tender. Should that be the case this long after surgeries?

I am trying to be confident that answers are coming… Meanwhile we are attempting to keep things at an even keel. Taylor has been able to keep up with his tutoring. He’s only been to school 5 times since the beginning of March, but is doing his best. Yesterday he went when it was obvious he hurt awful badly. It was the first time in a long time I got a call from the nurse’s office to come get him. It was the end of the afternoon and I was on my way as it was.

Once again he is so tired that he has begun napping in the afternoon, everyday this week. I know it gives him a break from hurting. I just hope we can get some answers soon. Thank you again for your continued prayers!!!

Written Apr 27, 2011 9:40am

Before I get into the events of the past week and how Taylor has been feeling I want to say a huge THANK YOU! Taylor has received cards from all across the world! He has gotten travel booklets with pictures of Australia to get him more excited about our trip (if that is possible), cards from entire classes & churches, stickers, even a $2 bill!!! It has really helped to cheer him up and help encourage him. Thank you too for the King Soopers gift cards, gas cards, & movie cards…all things we can seriously use!!! We are so grateful to have support from you all.

Since I’ve last updated Taylor has had an upper Gi study, a Small Bowel study, a DEXA scan, & lots of blood work. He has seen his Oncology docs, the GI team, Pain team, his Psychologist, Physical Therapist, & Acupuncturist. It has been an exhausting week! I wish I could say that we have found all the answers and are on our way to helping his pain, but alas we are not even a little closer.

We have ruled out a major bowel obstruction & his blood work shows no sign of relapse. We are very glad for these things. I haven’t heard back yet on the complete GI study results. I can say that they took 6 hrs to complete instead of the 2 hrs they thought it should take. I am hoping that maybe the length of time it took the barium to move through his intestines may help provide us with some clue as to what is happening. It stands to reason that if it takes two or three times longer to process food, etc. that that could cause pain??? I am grasping at straws here I know.

In addition to all the medical junk we have had going on Taylor has been having a lot of testing done at school. We know that the chemo and respiratory failure has done some damage and are now trying to find the best way for him to learn in class. In the past week he has met with the school’s special education team, speech therapist, occupational therapist, & psychologist. He also had some evaluations done with his class room teacher.

All of these tests, both medical & educational, are necessary I know. But I try to put myself in the shoes of a ten year old boy who for two years has longed to be healthy, normal…to attend school & play sports. How must it feel to be constantly tested??? Everyone wants to help, but no one, including his mom, can make his damn pain go away. Then to top it off he can’t remember the chapters he read in yesterday’s book, this dr is forcing chalky barium down your throat, the next dr is taking more blood, your tired because you woke up screaming in pain the night before… There is just no doubt in my mind why he is so depressed.

I pray for Taylor. I beg for his sadness to go away, for his pain to subside… I pray for me. I have grown so tired and weak, I feel so helpless. I pray we have the strength each day to fight…that I have the patience to care for Taylor when he hates everything & everyone, when he struggles with his school work. I pray that God will bring him close to a friend or friends who have the patience to help him when he is struggling and love him always.

In exactly two weeks we board the plane for Taylor’s Make-A-Wish trip to Australia!!! We will have ten days without doctors, appointments, school, work, even the phone ringing!!! I am so very hopeful that this renews our spirit, faith, & brings moments of sheer joy like we haven’t experienced in a very long time. When we get back Taylor won’t have much more schooling before summer break and our focus can solely be on him & his health.

Thanks again for all your support. I’ve been missing my mom so much lately and reading your encouraging words helps!!! She’s looking down on us always I know.

Written May 7, 2011 4:15pm

I have been meaning to update for awhile with all the goings on of the last week. However, I didn’t think I’d be updating you from the PICU. In the last 24 hours Taylor has become VERY ill. We need you to pray hard and ask everyone you know to pray as well, as we have been told the next 72 hours are critical.

Over night Taylor’s abdominal pain increased significantly, to the point where he needed help to move at all. He also spiked a fever of 103.5. We went to ER at Children’s where we were quickly taken to a trauma room as Taylor’s blood pressure had dropped to 61/39, his resting heart rate was as high as 190 as well.

Abdominal x-rays were taken and we were moved to the PICU where he would be placed on blood pressure support meds and prepped for surgery. The x-ray showed he had air in his GI tract. The surgeon opened him up from the base of his breast bone to his pelvic line and searched his intestines for punctures, etc. They found a hole in his lower large intestine between the size of a quarter and a half dollar. Because of the puncture Taylor had GI fluids and waste flow throughout his body. As a result, he has had a portion of intestine removed and once again has an ostomy bag.

Right now the important thing to pray for is the infection. He is intubated and sedated so that he cannot feel as much or communicate much with us. He has tubes in his nose, mouth, a catheter, etc. He is on blood pressure support, the ventilator…it is crazy.

We very much need your support & prayers for Taylor and for Shane & I. This is a scary time. I will update with any new news and keep you all current. We love you!!!

Written May 8, 2011 1:52am

I don’t have much news, just wanted to say he is as stable as can be. They have him on lots of sedation, pain meds, blood pressure supports, fluids, and he has been given several units of blood.

We are not through the scary part, but slowly we are getting closer- 62 hours & counting! Thanks for your support & prayers!

Written May 8, 2011 2:09pm

It has been a really long, sad, & quiet day in the PICU. Taylor is still stable. He is still on the ventilator. Today for some of the time he was able to squeeze our hands a bit, and shake his head yes or no to questions we asked. It is a blessing and a curse. I love that he can hear me say I love you, but hate how much he suffers when he is that alert. He has tried to pull the tubes out so often that he is restrained to the bed.

They have tried to further sedate him without making his stats drop. This is tricky, but he seems much more at peace and able to rest now. He will wear himself out with his frustration and has done that before.

His stats are better tonight, though he is still on meds to make them that way. It still seems to be baby stepping in the right direction. They have been getting oodles of gunk out of his NG tube, but still sometimes he will gag & choke on it which scares the heck out of me.

They have started IV nutrition & Lipids (good fats) to try to keep him stable nutritionally so we don’t start going backwards on the progress he has made there. Currently he has two IV poles with 12+ injections/drips running at any given time. Seeing your child like that never gets easier.

I am going to try and rest some tonight, but will fill you in with any changes as they happen or at least in the morning if all goes well. Thanks for your prayers, visits, and for recruiting more prayers from friends & family through your Face-book page, Caring-Bridge site, or any other source. We are lucky to have you all praying & supporting us.

Written May 9, 2011 2:05am

So last night was interesting. Taylor got the hiccups which kept setting off the alarm on the ventilator. Needless to say, he was restless & I didn’t get much sleep either.

Things are again slightly improved. He is down to just one blood pressure support medication. They are looking at trying to turn down the settings on the ventilator and see how well he breaths on his own. Hoping to get the intubation tube out tomorrow or even tonight if possible. The reason they are in such a hurry for this is because he is starting to sound crackly & the x-ray showed wet lungs. These are both steps on the way to pneumonia, which we really don’t want right now.

Surgery came by and I got my first good look at Taylor’s wound today. It is a bit longer than past ones and quite a bit wider. They did not suture it closed due to his infection. Today they started him on a wound vac. It will suck the “juices” out of the wound and help Taylor’s wound heal faster. He had this with his first initial surgery. The best thing about it to him is that it only needs to be changed about 2x a week rather than the daily wet to dry change.

Looking at his tummy is hard. He has so many scars, now a huge open wound, the g/j feeding tube, & worst of all an ostomy once again. He is going to be so very angry to have that back. I know we will work through it, but it saddens me. Overall things are looking up and we are almost out of the really scary time frame.

Before I sign off I just need to vent for a minute. Today is Mother’s Day and I miss my mom so much. It’s hard to believe it’s been 10 Mother’s Days without her. Usually Taylor makes me coupons and is so sweet that the pain is eased, even just a little. Today I sit missing her more than ever. Today I sit watching my son face yet another life threatening situation. I don’t want to be rich, I would like to be beautiful, but what I’d really like is to give my son back his childhood, pain-free.

Do me a favor today, please. If you are fighting with someone or even just not as close as you once were, take a second to remember that no matter how cliche it sounds people aren’t here forever. Don’t live with regrets. Freely give forgiveness.

Happy Mother’s Day! Call your mom’s, grandma’s, aunt’s, etc. Hug those children that make life so much brighter! Live for the day!

Written May 9, 2011 2:40pm

Happy Mother’s Day!

Thank you all for your warm thoughts & messages. Today has been long & hard, but Taylor has shown signs of getting better. Tonight we are testing his blood pressures without support. They are low, so we may have to go back on them. They have added a much better sedation med that is keeping him calm & comfortable.

His fevers are still an issue I’m afraid, I guess this is to be expected with this kind of septic shock. They hope to try Taylor’s breathing on his own before extubating, hopefully tomorrow.

It’s wait & see, but we hope the most dangerous time is past us. I am exhausted, but will fill you in tomorrow morning. Lots of love!

Written May 10, 2011 12:59am

Last night was a little better. I was able to get 5 or 6 fairly solid hours of sleep and Taylor was not near as restless as he has been. He was able to stay off blood support medication through the night and is still running low, but way better than he has been. Sometime during the night he seems to have broken his fever as well, knock on wood.

The new sedation they have him on works quite well and has definitely calmed him. The docs hope to try lowering the setting on the ventilator and seeing if he can maintain breathing on his own. If he can they will extubate the breathing tube sometime today. If he’s not ready they will wait. Either way it looks like at least two more days in the PICU at a minimum before we move to the surgery floor.

He’s in the safest place he can be. We are so thankful for your supportive words & prayers. I will let you know how the day progresses. Thanks!!!

Written May 10, 2011 1:13pm

Taylor remains the same tonight as he was this morning. The docs did some support trials to test if Taylor was ready to come off the ventilator yet. He did reasonably well, but not quite well enough to come off. They will try again in the morning.

He remains free from fever and maintaining his blood pressure without medicinal support. I am gonna try & sleep early tonight knowing full well that when he does come off of the ventilator he will need me more than ever.

Thanks for your visits & prayers! We can feel your love surrounding us.

Written May 11, 2011 12:44am

Last night was not quite the peaceful night I had hoped for. I am afraid neither of us got much rest. Poor Taylor, uugghh. The docs are trying to have him more alert so that he will breath more on his own. This is obviously good, but maybe a better plan for morning than night.

Anyway, the tricky part of all that is going on right now is balancing pain meds. He has used them for so very long that after a major surgery like this he needs such a large amount that you have to consider respiratory depression. Thus the plan is to keep him in the ICU where he is readily able to be on a ventilator as quickly as possible while we determine where he needs to be pain-wise.

This early morning he has been very awake and in a lot of pain. He is trying so hard to communicate with us, which but for yes & no answers is all but impossible with the ventilator tube. He tried to write on a pad of paper, but isn’t able to use his hands much and ended up just scribbling. As you may imagine this is so very frustrating for everyone, most of all him.

It does appear we will be able to get the vent out today. The only question with it is that he has started to spike fevers again. I doubt this will change the plan too much.

I so want him off the vent, but dread telling him that he yet again has an ostomy. He’s told me many times he didn’t want to live if he had to have that again. I know we will work through it, but it seems so very cruel. We have plans for his psychologist to be on hand for help.

I also get to tell him that we have had to postpone his Make-A-Wish trip to Australia. He has been looking forward to it for so long! I know it will still happen, but come on…what 10 yr old wouldn’t be disappointed by that?

Today is going to be a hard day for us all emotionally. I really don’t know where to begin to tell my son what has happened. How can I ask him to accept this when I myself am having trouble? It’s like when is enough enough for him? How much more must he suffer? It seems so unfair. I trust the right words of comfort will come to me at the time.

Anyway, I just wanted to vent a little & give you all an update as to where we are. Taylor is so strong, he has pulled through so many things. I am so proud of him! I will write tonight with any news. Thanks again for your prayers & support!

Written May 11, 2011 4:11am

Finally some good news…Taylor is off the ventilator!!!

He has a fever and is needing more oxygen than normal. We are praying he can stay off the vent & rest a little before we have our big talk.

Written May 11, 2011 1:51pm

This day has been long and awful, no way to sugar coat it. Good news is of course that Taylor is off the vent.

We were not able to really talk at all about what happened during surgery. Taylor’s pain & nausea have been at all time highs. He is not responding to any of the four different meds they are using for nausea. He’s on three meds for pain, none really covering it. He has had more fevers, his lungs are diminished…it is a long list.

I am doubtful that we will get much rest tonight, as Taylor has been unable to sleep at all since coming off the vent. Pain has taken over everything. He is barely speaking at all, to anyone.

It has just been one of those days that you want to forget. Well all except hearing him talk, even ever so slightly. It made me smile just to hear him say he loved me.

Sometime through the night he will have a chest x-ray, they are really worried about pneumonia. He also has two more easy pap breathing treatments. The nurses have to keep turning him from side to side to prevent bed sores which, as I am sure you can imagine, is very painful even though necessary.

I am ready to go to bed and wake up to a new day. One that is hopefully filled with progress for Taylor. We love you all and are so very glad for your support!

Written May 12, 2011 5:06am

Sorry this is so late, I always hope to get an update out early. Last night was nothing short of awful. Taylor’s pain was ridiculous. It was affecting his heart rate, blood pressure… He also was so nauseous that I ended up asking the surgeon to put his ng tube back to suction. This sucks out all the gi fluids that sit in his tummy making him feel so badly. He also had issues with his catheter. It didn’t want to drain right, another painful thing. It was one of those nights when it rains it pours.

This early morning was much the same. I spoke with the pain docs and we, knock on wood, have finally gotten a plan that seems to be working better. He has been able to get a little rest (I napped too) late this morning. It will be interesting to see how things go when he is awake this afternoon and they are making him move around more.

They had an emergency here in the PICU so the docs still haven’t rounded. Thus, I still don’t know much more than I did last night about pneumonia/his x-ray, the plan for today, etc. I would imagine that as soon as he can prove we have better pain control we will move to the surgical floor & begin the long recovery process.

Thanks again for all your love, support, prayers, etc. They along with this beautiful rainy day (I love rain!) are really helping me keep going even though I feel so helpless & weak.

Written May 12, 2011 1:10pm

Taylor has had a bit of a roller coaster day today. There were times he was screaming in pain, times he slept (yeah!), times he seemed very depressed, and about a 1/2 hour that he laughed and talked to us about Harry Potter. This is a step in the right direction. It is very emotionally draining to try and keep up with every change though I must say.

His pain at times was better controlled, but was so up and down that he was very frustrated. For the first time ever he went through an entire cartridge of dilaudid in just over 12 hours. That is crazy. I remember the first time the ER docs gave Taylor Morphine and I was amazed that kids even were given meds like that. What a journey this has been.

Today Taylor came off the last of the sedation, flirted with fevers, and had high heart rates & blood pressures. His x-ray came back showing wetness in the lungs and they have ordered him to do easy pap breathing treatments 6-8 times a day. These help, but add to the abdominal pain. They will be key in keeping him from getting pneumonia though, so we will help him power through them.

I can’t remember if I told you but the surgeon sent off a piece of Taylor’s pancreatic tissue & the piece of bowel they resectioned to pathology. We still haven’t heard results on this and it is constantly weighing heavy on my mind. They do not think it is diseased tissue, but want to be sure. When you’re saying prayers could you specifically pray we get good news about this? Thanks!

Well, I am praying for a calm, peaceful, sleep filled night in the PICU. I think we will move to a regular floor tomorrow, as he has remained stable for the most part. It will be nice to not be in the fishbowl, have 4 walls, & a private bathroom. It really is the small things in life! Tonight Taylor told me how much he appreciated me always being here and how he felt so badly that he “slept” through Mother’s Day. I told him a day of snuggling and watching “Smallville” together would make the whole world better. I pray we get to do that soon, even if it is here at the hospital. Some of our best times have been here, is that great or just pathetic?

Good night, we love you all so very much!!!

Written May 13, 2011 6:06am

As you may have guessed from the time I am writing this entry, things have not slowed down. Last night we prepared to leave the PICU this morning, but that doesn’t look likely now.

About midnight Taylor’s pain became uncontrollable, more than we’ve seen since Friday night when this started. He has spent most of this time curled up in the fetal position. In 8 hours he was given 1795mcg of Dilaudid! He was still crying (and awake.)

Today they ended up doing an x-ray to make sure nothing else was going on, it looked pretty good. The one thing it wouldn’t show is an abscess. If things haven’t changed drastically by Saturday (8 days post-op) they will do a CT of his abdomen to check for that. They would do it now, but after surgery the CT wouldn’t clearly show an abscess anyway just a lot of fluid which would be expected.

The pain team opted to try a Lidoderm drip. This ran for an hour & a half. It helped for a very short period of time, but is already wearing off. It looks like we will be doing a Ketamine drip later this afternoon & night. If that doesn’t work we are about out of choices for pain control.

He did have good moments today. It seems like we get control and lose it less than an hour later. I am at my wits end on what to do. It’s 2pm and I haven’t eaten or gotten out of my pajamas yet. I just haven’t had a second where I could leave. Shane is on his way now to relieve me for a few minutes.

I so hope, more than anything else in the world, that we can find a way to make Taylor comfortable. It is breaking my heart to watch this.

Written May 13, 2011 2:45pm

This is one journal entry I am happy to write. I hope I don’t “jinx” it by saying this, but Taylor is having a MUCH better night!!! This afternoon the pain team tried lots of different things like a Lidocaine drip and a Ketamine drip.

Tonight he is finally resting peacefully on his Dilaudid drip, Ketamine drip, and Fentanyl patch. This combination has forced us to stay in the ICU as a safety precaution, but seems to be giving him some relief.

As you may imagine he is needing more oxygen, his blood pressure is a little low, etc., but I am so happy that he is sleeping without all the crazy pain he has been in. As soon as I am finished writing this I plan on resting myself.

Tomorrow Taylor will need to get a PICC Line placed. This is so that they can have better and more access to his veins. He has gone through IVs already and has many meds that aren’t compatible to go through the same tubing. He has had these before so that isn’t a huge deal. The docs will want him out of bed tomorrow too for the sake of his breathing & lungs. He will likely have the catheter pulled too. I know these may be a battle, but much easier when he is rested.

No idea how long we will need to stay in the PICU, but I think it will need to be the whole time he is on Ketamine. As long as we are progressing forward I am happy to be wherever that needs to be. What a difference a few hours makes, right?

Thanks again to all who visited, left messages, brought gifts, etc. Trust me today was one of those days that you all pulled us through. Thank you to United for delivering a package of goodies to help ease Taylor’s vacation disappointment. Thank you to Shane & his company, Time Warner, for leaving early and rescuing me from what was sure to be a complete break down. Taylor’s comfort tonight has given me the strength & hope necessary to push through and encourage him. We sure have wonderful friends & we love you!!!

Written May 13, 2011 10:51pm

Not quite the peaceful night of rest I hoped for, but still pretty good nonetheless. About midnight Taylor woke up from his “nap” and the Ketamine had the reverse effect. He ended up chatting my ears off until about 2:30am when our awesome nurse, Hank, took over and talked to Taylor for the rest of the night so I could sleep. Thankfully he is patient & the PICU was slow!!!

Taylor’s pain went from constant 9-10’s on a 1-10 scale to a constant 7. Considering he is usually a 6-7 at home, we are okay with this. Best night of this stay so far all thing considered.

Written May 15, 2011 12:17am

So sorry to our family & friends that worried when there wasn’t an entry last night. I know I get pretty routine & when that changes it sometimes causes panic. Yesterday was very good, definitely a turn for the better. Taylor finally rested, so Shane & I slept too.

We are still in ICU and will be it looks like until at least Monday. Taylor is going to be on a powerful medication (Ketamine) that is only safe to use in this environment. It, in combination with all his other meds, are helping keep him as comfortable as he has been in weeks, maybe even months.

Here is where we stand. Yesterday they put Taylor under full sedation & placed a PICC line to give easy access to is veins and, hopefully, prevent the need for new IVs all the time. While he was under they also did a wound dressing change. Both went well.

Yesterday they also removed his NG tube that was draining his stomach through his nose & his catheter. Good steps in the right direction! With his catheter out he now has to stand to use the restroom which will get his lungs working more. PT began working with him to strengthen his jello-y legs & he even sat upright in a chair for 4 hours over two stays yesterday. Very positive steps forward.

He is still on IV nutrition & lipids (fats) while they transition him slowly to feeds through his g/j tube (permanent stomach feeding tube). He still hasn’t even asked to eat, so this is important as it’s been 9 days since he’s even had a sip of water by mouth!

His oxygen requirements got higher through the night as he was able to sleep. I am still okay with where we are at (2.5 Liters) considering his normal issues & the medications we are using. I am actually a bit surprised this hasn’t been a significant issue.

Pain. His pain has been way better controlled. He has a pain patch, a PCA (button he can dose himself with), the sedation meds, etc. He is at about a 7 out of 10 when nothing is happening. This spikes to a 9 or 10 out of 10 with movement other than the slightest turn. It seems to settle back down fairly quickly with his button but once in awhile the nurses still need to jump in with a large dose of IV Dilaudid.

Nausea. His nausea is somewhat better and is now being controlled with 2 or 3 meds instead of the 4 he was using. He also has his regular nausea patch that he always wears on. As feeding progresses and his system gets used to working again, I suspect we will see a decrease in his need for meds. Then again this is also pretty normal for him to battle at home.

Mentally. Mentally he is doing far better than I feared. Between the pain and the meds he hasn’t asked too many questions yet about the ostomy, etc. I suspect darker days lay ahead with this as we slowly wean him off things and prepare to go home. Right now I will take his chatty moods happily.

I really don’t see us leaving the hospital any time soon. The PICU part of this visit has gone on much longer than usual. It is going to take time to wean him off things to a safe point to go home on. I am just really happy we are in a better place & have such an amazing hospital so close to home.

Thanks so much for your continued support. He is so strong & his body has seen so much. I know this too will pass. Lots of love!

Written May 16, 2011 11:49am

It has been a really good weekend, all things considered. Taylor has been sitting up for hours at a time, resting, sitting up some more. He’s been feeling well enough to build Legos which is always a good sign.

We have spent the weekend visiting with friends, hanging out, & resting. As the weekend progressed the effects of the Ketamine have slowly worn off, making him less hyper and better able to communicate at a normal rate. His pain has slowly gotten a bit worse too, but that is to be expected with him moving more from the bed to the chair.

I have a feeling we will get one more night of rest & peace before the week starts. The plan is to start weaning Taylor off the Ketamine tomorrow so that we can get out of the ICU. I know that will make him happy because then he can have kid visitors again. He’s been missing his friends a lot.

Thank you for all the support. This has been an emotionally & physically draining 10 days. We will keep you posted as he progresses. Lots of love!!!

Written May 17, 2011 2:12pm

As expected today was not quite as good as the past two have been. As the pain team started weaning the Ketamine Taylor’s pain got worse. They didn’t drop it far & said they would wait 24-48 hrs before making any additional changes. At this rate it looks like our PICU visit will be extended near the two week mark.

Taylor did sit up a little, and chatted with visitors although not nearly as freely as he did all weekend. He did get a short walk in too. I had been talking about all the cute babies in the unit & he was just too tempted. Never in my life have I met a 10 year old boy who loves babies more. He already talks about how he is going to be when he is a dad. Hopefully cancer won’t make that harder. Anyway, we walked around and oodled the babes. It was great that he did that, although he hurt terribly afterwards & slept for about three hours.

Taylor was VERY tired today, sleeping most of the afternoon & evening. He had increased nausea too. We are hoping that this is all due to him trying so hard to be more physical. In addition, he had two ostomy bags leak. There isn’t room to properly secure the bag with the wound vac, so we are playing around with different techniques.

Not much else changed. Just grateful at how far he has come in the past 11 days.

Written May 18, 2011 2:01pm

Today was just as I expected, harder than yesterday. I know it will get worse before it gets better. He had A LOT of pain today. He only was able to take a short walk & sit upright for 2 hours. He used his button a ton and required lots of extra nurse doses.

Taylor has been flirting with fevers again, but so far stayed away. His bag leaked 3 times today, there isn’t enough room to get a good seal on the bag before the wound starts. It burns his skin and leaked all down into his wound. UUGGHH!!! They ended up pealing off an 8×10 adhesive sheet size wound dressing & the ostomy bag. They had to irrigate the wound, which looked terribly painful & stuff it wet wet gauze. This of course had him screaming out in pain and anxiety. The docs ended up giving him a dose of pain meds & an anxiety med that knocked him out for the entire afternoon.

The plan for tomorrow is to turn off the Ketamine & hopefully get him up to a regular floor & out of the PICU. Pain control will be an issue for sure. Until he requires less pain meds & can move around freely on his own we will be in the hospital. I have a feeling that the best case scenario will be a week to ten days after we move. It would be great if he would prove me wrong.

Meanwhile, frustration is setting in. He is mad that we are pushing him to get up, walk, sit in the chair, etc. The surgeons aren’t gonna back down on that though. His lungs finally sound better after breathing treatments every 4 hours, they won’t risk going backwards. He also has had no appetite & what he has tried to eat has hurt so badly that he ends up giving up after a couple bites.

Wound care is gonna be an issue. The docs don’t want to sedate him every time. I get that, but I also know Taylor & how anxious he gets when he knows people will be messing around with his tummy. Not to mention the additional pain.

Time will tell I guess…Just wishing Taylor could catch a break and get out of this hospital permanently. Now we know he will have at least one more major surgery to reattach the ostomy when he is strong enough. Likely months from now.

Tonight we are tired & frustrated. This, as hospital stays always are, is yet another roller coaster ride we are on.

Written May 19, 2011 11:55am

This will be short & to the point so that I can get settled in a new room. Taylor is doing better & has come off the Ketamine, thus we just moved out of the PICU & into room 647.

He is still struggling with pain & exhaustion. Today he took a walk nearly double the size of yesterdays, sat in the chair, took a shower (not as easy as it sounds), & had his wound dressing changed. He has also slept more than usual.

Our surgeon has opted to forget the wound vac for now & do wet to dry dressings. This is easier with the ostomy, but harder because it has to be done everyday. It is what it is & we know plans change. Just this morning it had been decided we would not move out of the PICU & he would go to the OR for sedation & the wound vac placement??? You learn to go with the flow.

Tonight we hope to enjoy our private room, get settled in, & enjoy how quiet it is on a regular floor. Tomorrow they are doing an EKG among other things. My goal is movement & pain control.

Written May 20, 2011 1:43pm

Today was more of the same…lots of movement (yeah) and lots of pain (uugghh). It is very hard to push him so much, even though I know it’s the best thing, when it hurts him. I am very proud of all he was able to do today though.

There was yet another awful dressing change. He had an EKG, but we don’t know the results yet.

Downstairs there is a train display set up for a few days. One is entirely made of Lego. Taylor walked down to take a look and get some “ideas” to build at home, we wheeled him back up in a chair. He also played a little air hockey (sitting down) in the playroom. It was nice to see him be able to do a few things that were more fun.

Tonight he is in tons of pain and very sleepy. We may have over did a little today, but all-in-all I am glad he’s getting up & around.

Written May 23, 2011 2:04am

I’ve been very neglectful with my posting, sorry. Taylor has been doing really well. He’s built a ton of Lego, played in the playroom, took walks, etc. He’s getting way more patient with wound changes too!

The doctors are transitioning him from the pain pump to oral meds with the hope that he can get off the pain pump tomorrow. His pain is still higher than I’d like & med doses are still at levels that cause him to need oxygen during the day as well as at night. We are heading in the right direction though.

I would guess we will be able to go home sometime mid week. It will be nice to get home, this is our 17th day here and it’s between now and the third week that I find particularly hard. After week 4, it gets easier again, but lets hope we don’t ever have to get to that point again.

Our friend Elizabeth came in last night with a kidney infection, so remember her in your prayers if you would.

I really need to vent a little and explain whyy I haven’t written the past couple days. I understand if you stop reading here. This visit has been particularly hard on all of us. There are obvious things like missing our trip to Australia, Mother’s Day, etc. What really has me so depressed though is the eerily similar circumstances this visit has to our first Children’s visit way back in August 2009.

You may remember that we came in with GI issues, intussusception to be exact. The doctors could not explain why it would’ve happened, sent a piece of intestine to pathology-who in turn found no evidence of disease. We ended up going home only to come back a few weeks later and learn that he had cancer. (We also had a vacation planned which we missed that stay as well.)

So here we sit, literally in the room next door to where this all started, wondering why the most recent GI problem occurred, waiting on full pathology reports, missing another vacation. No matter how much you tell yourself not to worry, stay positive…You’re only human and your thoughts drift to awful places. No cancer mom would say otherwise.

Best case scenario we are back to where we were months ago…ostomy bags, round-the-clock meds you have to wake up to give, feeding tubes, IV poles… I feel beat down. I feel frustrated.

Why does my son have to go through so much? Why does ANY child have to go through these things? It is so unfair. Childhood is supposed to be carefree. It is supposed to be about playing, school, innocence… I hate this whole thing. We are tired, it takes all I have some days to get up,get dressed, & put on a smile that shows Taylor we WILL get through this. Some days I feel like a complete fraud.

I don’t want to sound ungrateful. Taylor has survived so many ICU stays, so many what ifs… We have an INCREDIBLE support system. We have great insurance & an AMAZING hospital 30 mins away. I will focus on these things to get me through.

We love you all so very much.

Written May 24, 2011 1:44pm

Today was more of the same…wound dressing change, walks, Foosball with Elizabeth & her sister Jillian, LEGO building…and unfortunately, pain. Things are looking up as far as his surgery is concerned. His wound is healing well and they were able to transition him to his pain patch, oral pills, & occasional IV med doses to keep his pain controlled.

His oxygen stats are still low, day & night. For the first time since this all started he will be going home on 24 hour oxygen. He is very unhappy about this but wants to go home and will do what he needs to do to get there.

Taylor still has lots of pain & anxiety with eating and drinking. He has now been upgraded to 24 hour feeds again through his g/j tube and they are also including all the fluids he needs, in addition to the feeds, to keep him hydrated. We very much hope these things will prevent another failure to thrive hospital stay like we had in the fall.

I finally got the initial results from the EKGs that they have done as well. The tests show a Prolonged QT and skipped beats followed by periods of Tachycardia. What this all means right now is still unclear. We are being added to the Cardiology rotation and should get a better picture tomorrow. For now we know just enough to be concerned.

Thank you for your prayers both for us and Elizabeth!!! We love you all so much!!!

Written May 26, 2011 2:57pm

I keep planning to write, but we have little news to share. Taylor is healing and looks a bit better each day. He has tried hard to eat 3-4 bites a few times a day too. Slowly but surely I guess. A lot is still pending but we hope to go home tomorrow or Friday if all goes well.

Cardiology is still the big question. Taylor has had multiple EKGs, an echo-cardiogram, & an exercise stress test (which he tried his best on.) All are pending with no answers. What we do know is that Taylor has had two EKGs that showed prolonged qt and periods of non-sustained ventricular tachycardia. Fixing these issues can be as simple as changing meds around, adding a beta blocker, or as complicated as putting in a device to control his heart rate. As you can imagine this is really stressful. Heart issues can be a complication of chemo treatments. We are trying not to worry until we know something.

We were both cheered up by visitors today. My friend Jenny drove all the way from Grand Lake just to visit and Reed, a fellow Lego aficionado, came with new Lego treats for Taylor. Taylor also got a cool new Star Wars Lego set he has been wanting from an anonymous donor today.

Our support system is amazing! You guys pull us through every tough day and don’t even know you do it! We are so thankful for you all. Lots of love tonight!!!

Written May 27, 2011 9:24am

Just wanted to let everyone know that we are going home today. I wish we could say that we have lots of great answers, but alas we don’t. I did want to get home while we still had one working day to take care of any issues before the long weekend where our only choice will be ER.

I talked to Cardiology. They basically feel like there isn’t a danger to Taylor leaving the hospital. They are setting us up for a 30 day heart monitor that Taylor will wear. They also set up a follow up EKG, appointment, & genetic testing for the Long QT Syndrome. It is reassuring to know that we are not just wiping this under the rug, but completely looking into it.

The next few days will be challenging as we once again go home on 24-7 feeds, 24-7 fluids, 24-7 oxygen, wound care, ostomy care, and all the other needs…We are looking forward to our own beds, privacy, some peace & comfort of home…

I will update you on how things are going. Please pray for the transition to go smooth for Taylor & us. Lots of Love!!!

Written May 28, 2011 1:02pm

I can’t explain to you what it is like to be home, the best two words for it are wonderful & awful! Taylor hasn’t felt great today & has spent the day laying in bed or on the couch. He must be feeling pretty bad because he didn’t even ask to play Legos or go down to his playroom, always a first when we come home.

I have spent a lot of the day napping myself. Shane has a four day weekend, thankfully, and kept an ear out so I could try & catch up on some much needed rest. A nice comfortable bed is just something I don’t take for granted anymore.

We had many deliveries of supplies-feedings, wound care, oxygen, etc. It is taking more than I expected to get back into the swing of things. It is very emotional to restart 24-hr feedings, do ostomy changes, etc. It just feels like we are starting over at the beginning…trying not to dwell on that. A few days & I know the routine will kick in and things will become habit.

Taylor has seemed very sad & frustrated. I am trying to get him to go say goodbye to his friends at school next week, but he doesn’t want to see anybody right now. I will encourage him to see friends soon, it is what is best for him. His friends love him, they won’t care about all his needs.

We are going to try a movie tomorrow. He really wants to see a bunch of new ones that are out. I hope this goes well and he can enjoy a few hours of fun outside of our home or a hospital room.

Thank you all for your prayers and thoughts. We appreciate all you do! I hope that later this weekend I will journal that things are easier on everyone and Taylor is feeling better. Have a wonderful Memorial Day weekend!!!

Written Jun 2, 2011 5:47am

Memorial Day weekend flew by. We spent most of the time settling into a routine and catching up on sleep, or trying to anyway.

Taylor’s ostomy has presented a few challenges, but all-in-all I think we’ve gotten them figured out as best as possible. We have to use a strong surgery “super” glue to hold it on, due to how close the stoma is to his wound. His skin doesn’t like it that well, so we have been making bag changes last as long as possible. I’m sure you can imagine how bad that hurts to pull off. Also, if it does leak, it runs into the wound that must then be irrigated. Uugghh!!! I do feel like we have a much better handle on this again. It will change, as we know from the past, with his healing and increase in activity.

Feeds are running at a significantly higher rate than he’s ever had. With him not eating or drinking, we have to get all his calories & fluid intake in through his g/j tube. He’s doing well with this and nausea meds. We do have to be careful about the amount of nausea meds we give though, as they can cause heart problems. Each day Taylor tries his absolute best to eat something, yesterday he actually ate 6 bites of chicken!!! I am hopeful that we will be able to reduce feed rates as he starts to eat more by mouth.

Yesterday we were at the hospital from 7am-3:30pm doing a Lidocaine infusion for pain control. This went alright and he seems to have a bit less pain. The doctor said that we may not notice a huge difference in what he says his pain is, but may notice him being able to do more. To me that would be absolutely worth it!!! It would be great to see him having more of a chance to just be a kid.

Pain has definitely been an issue at home. I am making sure he gets his pain meds every 4 hours round-the-clock. He also still has his pain patch and pain suckers he can use in an emergency. Again, I am super careful about dosing and making sure his oxygen level remains good.

Fatigue is something we have definitely been fighting. Taylor & I both. It has been very emotional. Taylor wanted so badly to swim competitively this summer, which will not be able to happen now. Missing the Australia trip, even though it will be rescheduled…we have just been down, as I think anyone would be. We are using this week to get caught up with rest, figure out routines, and enjoy being home. I hope as he heals more and eats a little we will see an increase in stamina.

Still really concerning to me is his crazy sleep sweats. He has no tolerance for cold or hot right now. He either is sweating profusely or covered in a blanket. I am hopeful that we can get him outside a little. I think the fresh air & a touch of sun could do wonders. He loves the Rockies games so we are hoping to take him to one soon, maybe at night so it wouldn’t be crazy hot or burn his crazy fair skin. He always eats like a fiend at the games too, so maybe that could help with that too.

Next week I would love to have a couple short play dates for Taylor. He is embarrassed by all his pumps, etc. but I think it is dangerous to his emotional health to keep letting him avoid his friends. I’d love to get together for a movie either at the theatre or at our house, have a friend build a Lego set with him, or anything else that you can think of that is low key.

We did get to the grocery store and to see “Thor” this weekend. Taylor enjoyed being out a bit, as did I, but was completely worn out. He LOVED the movie though and it was worth all the planning it took to get out. We are going to try and make it to see the new Pirates movie soon too.

As I was typing we just received Taylor’s heart monitor. He will wear it 30 days, 24-7. This will record any “events” and help us determine a plan of attack for his cardiac concerns. We meet with his cardiac team again towards the end of the month. For now we are just watching him closely and watching how much medication we give him, as that can cause funky heart problems.

Many of you have sent messages, cards, etc. full of well wishes. Thank you so much for your support…I honestly don’t know how we’d get through the rough days without you. There are no words to tell you how much we appreciate & love you guys!

Before I sign off I want to tell you about a friend of Taylor’s and ask for prayers. In February we attended an oncology family retreat where we met lots of awesome people. Taylor met two brothers, Myles & Ben. Myles had just relapsed and has been going through chemo treatments and stem cell transplants in an attempt to contain his cancer. Yesterday the doctors told the family that Myles has two tumors on his brain and that the chemo had not worked. Next week Myles will begin Radiation Therapy. Myles, his family, and his little brother Ben really need your prayers. It breaks our hearts to know how much they have all been through. We are praying that the cancer will permanently leave Myle’s body.

Written Jun 2, 2011 6:35am

This picture is Taylor with Myles at the Wapiyapi Family Retreat in February. I thought it might help if you could see the child who needs your prayers so badly!

Written Jun 15, 2011 3:43am

I have no good excuse for not writing…life at home has had it’s fun times & lots of rocky times too. Taylor has not been bouncing back the way we hoped he would. His pain hasn’t gotten much better, he’s so very sad…we are basically at a stand still.

He has appointments tomorrow with his pain docs & also a new primary care that is part of Children’s Special Care Clinic. This clinic sees only patients with chronic issues and my hope is that by being part of Children’s they will be able to make some of the calls/e-mails to get everyone on the same page.

His feeds continue to go well. This weekend Shane’s parents were here for a visit and Taylor even tried to eat some actual food. The Easterbergs helped out a ton with getting our yard in better shape for the summer. Amazing how little chores pileup when you have a hospital stay. Shane’s brother & his family had also sent a lawn care service out to help get things on track. I don’t know what we’d do without all of your help.Thank you doesn’t seem like much, but we sure do appreciate you guys & all you’ve done for us. Hopefully we can have a fun visit in Texas sometime soon.

While I am at it, I need to thank so many people. We have gotten tons of cards, well wishes, etc. My aunt Linda brought a week’s worth of vegetarian meals, Globus (the travel agency that donated Taylor’s trip) brought over a huge bag of toys for Taylor & nice goodies for me too. I can’t possibly thank everyone on here, but I will (one of these days) get proper thank yous out. Just know that through a really depressing, rough time, all of your texts, gifts, cards, thoughts, prayers, etc. are seriously what pulls us through. They remind us that through all of this crap we have met amazing people and discovered wonderful friendships that will last a lot longer than this rough patch.

Taylor was able to see a friend & get out to see a few movies. Our favorite was “X-men First Class.” If you like comic book hero movies, it ROCKS!!! He has spent lots of time building new Lego sets & playing Lego Pirates of the Caribbean. We have been watching the TV show Smallville when he is too sick or tired to do anything else. It’s really fun, we are all the way to season 9-looks like we will need to find a new quiet past time, maybe reading the Hunger Games.

Shane & I got to a movie while my dad took Taylor to acupuncture, and I also have gotten lots of awesome flowers planted. Oh, & I FINALLY, after almost two years, got my room painted & pictures hung. I started this project right about the same time Taylor was diagnosed…needless to say there have been many delays. Thank you to my aunt Linda again for taking the material I bought and turning it into beautiful curtains.

The goal for the next week will be to get Taylor back to a tutoring schedule, try and get him back to some semblance of a regular sleep schedule, and see some friends. We have worked hard to get some things done the past week & now it’s time to have some fun. We’d love to see everybody so let us know what you have going on.

Before I close out for the day, I want to ask for prayers for a few things. Taylor’s ostomy was bleeding pretty badly last night. I have a call into surgery and am hoping it is nothing. Also, Shane’s cousin, Rhett, has been diagnosed with cancer. He is a teenager and things started in his intestines, much like Taylor’s. Our friend Myles just finished a week of radiation. Elizabeth just got home from a week of fun at a camp with other cancer kids. My uncle Dave’s brother, Fred, just had heart surgery & a pace maker put in. A church member & friend of mine that I have known since I was 16 years old, Kay, passed away this week. Seems everywhere we turn is sickness. I would ask you to remember all these families & the many others I haven’t mentioned in your prayers.

I also ask that you remember to be grateful everyday for your health. It is something that so many of us take for granted. Enjoy each day that you are able to do the things you want, be with your family and friends. It really is life’s little things, like swim team practice, that can bring so much enjoyment. We love you all!!!

Written Jun 17, 2011 11:05am

I am an emotional wreck right now… One minute I am happy, the next I am crying. The past couple days have had lots of ups & downs.

Yesterday we spent the day at Children’s. We have decided to change Taylor’s primary care team to Children’s now. It is a lot farther to drive for strep throat or vaccinations, but seems like the place we really need to be. We have been referred to the Special Care Clinic there which deals with children who have many different chronic issues and is well versed in coordinating many different specialty teams. It seems like a perfect fit for us.

Our appointment was over 4 hours long and was extremely thorough. They brought in GI to talk about Taylor’s ostomy & intestinal issues, RT to go over Taylor’s oxygen needs, a nutritionist to discuss feeds, etc. I felt a huge weight off my shoulders that there is now a place we can turn for “whole picture” health issues with him.

We ended up getting x-rays to view his spine since he has been having additional pain there and blood work. His spine looked okay but they did find two things that are a bit concerning. First, he has Atelectasis in his lower left lung. This is relatively common following chest/abdominal surgery due to the inability to breath deeply. This makes sense as RT had to turn Taylor’s oxygen up a half liter yesterday to get his oxygen to a safe level.

The second thing that the x-ray showed was a large amount of stool in his intestine. This stands to reason as his ostomy has not been having output and has had some blood. They had us change some meds around and are hoping that will help. At this point there is NOT a blockage. We haven’t seen any change with the meds, but it has only been 24 hrs.

In light of the results of the x-ray we are going back into the clinic tomorrow for some respiratory treatments and training so that we can continue them at home. (They will also be checking his intestines.) We have been told that if his oxygen needs are greater or they have any concern it is progressing that they would have us go inpatient again. I am praying that does not happen. It sounds really silly but Taylor has been looking forward to seeing Green Lantern this weekend for months and every time we have plans he is really looking forward to they seem to get pushed to the side for medical reasons.

On the flip side, read a poem yesterday that really put things into perspective for me. I want to share it with you.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

This is exactly what I have been thinking, yet unable to articulate. Every time I hear someone say they went to the pool or their kids had a swim meet, a part of my heart breaks. I very much want to hear what is happening in our friends & families life, but I know that Taylor cries himself to sleep at night wanting only to return to swim team.

The one thing this poem pointed out to me, however, was that even though the journey is different, it can be equally amazing. For the entire time Taylor has been sick I have planned for “when things are normal.” I am not giving up hope that he will fully heal, though I am going to try my best to accept that this is normal for now. Instead of longing for the things we can’t do, I will try to refocus my thoughts to all the people we now know, the things we have been lucky enough to do. Our “tulips” if you will.

How many parents are lucky enough to spend as much quality time as I get to spend with Taylor? How many 10 year-olds want to be psychologists, “because they are the doctors who really help”? Life is different than expected, but not necessarily worse.

Before I log out I want to mention that Elizabeth is back in the hospital with kidney stones…poor thing. If you would remember her in your prayers we’d be very grateful.

The picture in the journal today is of Taylor learning to scuba dive. It is there to remind us of all that is to come. Lots of love to you.

Written Jun 18, 2011 2:06pm

It has been a long day, but we get to stay at home!!! Respiratory Therapy instructed us on how to use a vibration breathing technique 3x a day to help prevent Taylor’s lungs from getting worse. He is up to needing 1.5 liters of O2 during the day & 2.5 at night. I hear chemo can weaken your lungs, so we have a referral to follow up with pulmonary asap.

GI/Surgery/PCP conversed and made additional changes to medications for the weekend in hopes of helping Taylor’s intestinal issues. They also want us to increase his overall fluid intake. We will be seen again early next week to see how things are progressing. I’m not gonna lie, I am not at all comfortable with any type of GI bleeding GIven Taylor’s history.

We have a long series of instructions on when to go to the ER this weekend. Basically we go if there is the slightest change for the worse with either his breathing or GI functions.

Overall it was good news, yet an exhausting day. Taylor is very much looking forward to seeing the Green Lantern tomorrow. Hope you have a wonderful weekend!!!

Written Jun 19, 2011 1:55pm

We are still home so don’t worry. Taylor enjoyed a birthday dinner for one of his closest friends today. He didn’t eat, but it was good to see him smiling with his friends.

Tonight I write to ask for prayers for a beautiful little girl whom we have met briefly at the hospital. Raelyn has touched the lives of us, our friends and the amazing staff at Children’s. Her treatment is not working and she has been sent home. Her family faces decisions and days ahead that are unfair & devastating. Here is their site if you wish to leave a message.

http://www.caringbridge.org/visit/raelynkramer

Most of us will spend tomorrow celebrating how wonderful our dads are, not thinking about all those dads who have lost their children far too soon. Please pray for Raelyn & her family. Please also remember tomorrow to say prayers for all the dads who will spend the day yearning for what they miss.

Lots of love!!! Happy Father’s Day to all the dads out there. May you cherish your family celebrations and the joy that only children can bring in our lives!!!

Written Jul 5, 2011 6:57pm

I can’t believe how long it has been since I journal-ed last! I hope that you know I will ALWAYS journal if things aren’t okay. The past couple weeks have been good to us. Taylor is very slowly getting better. He has had more energy which has enabled us to get out more and reconnect with friends. This has really helped Taylor’s depression. It is good to see him playing & smiling.

Even though Taylor has strung together several good days, summer is still a challenge. It has been so hot & Taylor just doesn’t last long in this weather. He played with friends outside (a rare occassion) Sunday night after it cooled down. This meant him sleeping on & off literally all day Monday. It has been an experiment to try and balance fun/energy levels/pain/mental happiness… We have seen lot of movies, nearly anything remotely age appropriate. The movies seem to be that perfect balance to get out of the house without wearing him out too fast. So far Taylor has liked X-Men:First Class the best. He also thinks the critics were way too tough on Green Lantern & Cars 2. (For the record I agree. Neither is Oscar material, but definitely decent summer fun.) He’s counting the days now until the last Harry Potter. We have our tickets for the midnight screening (his first) already.

Taylor is also tutoring again. I find it really difficult to push him some days, it is summer after all. We just want him to be as prepared as possible come the fall. Taylor has started to work with a few computer programs the school has gotten for him that will make homework & classwork faster for him. Both the school & Children’s seem to believe that 5th grade level work is not out of the question for him, but both agree that the amount of work & time it takes him to complete it will be our real challenge. I’m glad we are playing around with things to help now.

Medically July looks to be a bit more challenging than the past two weeks. Taylor has appointments in nearly every department I can think of. This week he has testing in Cardiology and a Lidoderm infusion to help with pain in addition to the weekly pt & acupuncture appointments. We are probably most excited for Tay’s Surgery follow-up the last week of July. This appointment is the next step to (cross your fingers) reversing Taylor’s colostomy.

Many of you have asked for Tay’s general routine so that you know what to pray for. I hope this summary helps.

Wound care-Taylor is still open, though the wound is healing nicely & is only about 2″x1/2″ now. We still are doing a wet to dry packing daily for the remaining deep pocket. ( I find it hard to believe it has been 2 months!!!)

Colostomy-This is still enemy number one. Taylor is VERY embarrassed by the bag now and frustrated that it is looking more & more like he will have to start school with it. We are struggling with leaking problems & getting a good tight fit on the dressing due to his wound. The only way to get staying power on the dressing is to use a surgical super glue which isn’t doing his skin any favors.

Feedings-Tay is trying hard to try eating by mouth, even if it is just bites. Eating with friends or eating out seems to make him more apt to force himself to try. Right now we are still doing 24-7 feeds with all his daily fluid intake as well through the g/j tube. We would like to see more progress here but he’s maintaining his weight this way so I won’t complain. My hunch is that eating is one thing he can control so he is enforcing that. I know from experience that once his ostomy is reversed he will want to get rid of the feeds too. With the constant feeds he has had some skin issues and leaking so we are now putting a paste and “bandage” of sorts around the tube to control pain & irritation.

Oxygen-Taylor was up to 3 liters at night fighting a collapsed portion of his lung just a few weeks ago. He is now back down to 2 liters and 1.5 liters while awake. He continues to do his breathing treatment/exercises three times a day and we are seeing good results. He hates being on oxygen when he is awake only second to the ostomy. He says he feels like he’s on a leash because the oxygen tank is quite heavy for him to carry along with his feed backpack so we usually help with the O2. He really is a tween if the clear nasal cannula is embarrassing him so much he’d rather get rid of that and have pain!!! He would tell you that there is more of a chance his O2 needs would go down than his pain go away to justify this…kids! Anyhow, we see Pulmonary later this month and may get some answers we’ve been seeking.

Cardiac-Tay is still on his 30-day EKG monitoring. This isn’t a big deal, really more of an annoyance. It is more stickers, wires, & leads across an already very congested abdominal/chest area. The important information we hope should be coming this week as he does follow-up tests at Children’s and meets with the Cardiologist.

GI-This is a never ending battle of medication adjustments. It seems we are forever changing things in an attempt to find the “perfect” combination. For now I think finding the Fountain of Youth is more attainable! We see GI later this month so we should have more changes then.

Psychology-Tay has decided to embrace the emotional side of things, things he can control. I am SO proud of him and the way he dedicates an hour every other week to healing the things he can. This isn’t easy for many adults. Definitely his favorite appointment.

PT/Acupuncture-Taylor still attends each of these once a week and each have benefits seen in his pain levels and endurance. Thankfully our insurance is allowing us to continue these treatments afford-ably.

Pain-Saving the best for last, not. This continues to be an Achille’s heel. We are trying the Lidocaine infusion again tomorrow. The infusion didn’t have drastic effects last time, but certainly he saw a change and endurance was slightly higher. I believe we will also be going down on his pain patch tomorrow. It doesn’t seem to be controlling the pain well enough to outweigh the risks of such high home dosing. I suspect this will mean a temporary set back in his desire to be active and that he will use maximum doses of additional pain meds initially…yet I still think this is a move in his best interest. He is still at the same levels he was when he was discharged after surgery so we need to at least try.

Wow! Seems like a ton when I write it all out. I hope this helps those of you who were requesting a complete update. I am so very grateful there are so many of you who care and miss hearing about my amazing son. I will update more this month as we start getting information from all the departments. I hope this finds you all enjoying your summer and taking time to do things you want & enjoy, not just what has to be done. I know many of you are likely smiling at the fact that I’m saying that, when it is something I often forget myself. The past couple weeks though I have done a good job at getting out for an hour here and there on my own or with friends. I notice a huge change in my mental state and my ability to endure the worst nights. Thanks to all who have helped me to learn that lesson!!!

Lots of love!!!

Written Jul 7, 2011 2:35pm

Okay, so we are a little frustrated today…Cardiology did not give us any information at all. Taylor has been wearing a portable EKG for over a month now only to find out that he really needed a different type of monitor, ugh! He usually is a very good sport about things, but today he broke down in tears saying that he is tired of everything. The monitor is not a huge deal on its own, just that on top of the oxygen & feeds he is really over all the connections-I can only imagine.

He had another EKG done at the hospital that also showed the Long QT, just as the previous ones have. We have been changing medications, as they can affect the QT, but none seem to have helped. They took blood to send off for DNA testing, it can possibly help us determine if he has true Long QT Syndrome. These results won’t be back for 6-8 weeks. Taylor will wear the new monitor for 30 days before the Cardiologist will get results on that…so it’s looking like we will see them again in 2 months. Two more months before we have any answers.

The day wasn’t a total waste though. Taylor had his acupuncture & I went with my brother, Mark, to see Hairspray tonight at the Arvada Center. It was an incredible production & the first time we have spent time just the two of us in longer than I can remember. Tonight was the perfect night to change that, as it is the 11th anniversary of my mom’s death. It’s hard to believe that it has been that long. I miss her so much everyday that it hurts. I am lucky to have had such an incredible mom, best friend, & role model.

Written Jul 9, 2011 3:19pm

Today was a great day!!! Taylor did not need a single dose of as needed pain meds, just his pain patch. Grandpa Terry took Tay to the comic book store, lunch, & to Toys R Us. Taylor’s feeds didn’t clog, ostomy didn’t leak…It really is the simple things in life that matter. It only takes one look at this picture above to appreciate how far he has come!

Tay wasn’t the only one who had fun either…I saw my good friend Jenny and went to a double feature of R-rated comedies-Bridesmaids & Horrible Bosses. Horrible Bosses is the most hilarious movie I’ve seen since Little Miss Sunshine.

We also finished The Hunger Games this evening. Tay & I started this book at his drs apts this week & couldn’t put it down it was so good. We have already started the sequel and I have no doubt this trilogy will be under our belt by the end of next week.

Hope that you are all having a wonderful day too! We love you!

Written Jul 12, 2011 2:32pm

I suspect some of you will be very confused to see Halloween decorations on our site, while others of you will totally get it…Harry Potter & the Deathly Hallows Part 2 is upon us!!!

This evening our friend, Sarah, took Taylor & I to a special sneak screening of the final HP installment. We had so much fun!!! (Sarah, you rock & we love you-thanks!) The movie was awesome (but for that stupid epilogue bit.) Taylor & the girls dressed up in costume and looked so cute. I didn’t dress up because we surprised Taylor. He didn’t know anything about it until we showed up at the movie theatre today. We have been in the hospital for the previous two releases and wanted to have this be extra special.

It is very strange how emotional tonight was. There was the sadness of this being the final movie…but for us it was really special. Taylor & I began reading these books together just before he got diagnosed and finished the series in the hospital bed. Almost 6,000 amazing pages we read experiencing the wonders of magic, the joys of reading, & a bond that only quality time together can build. I have said many times that these hours were some of my absolute favorites in my entire life. The older Taylor gets, the more I appreciate these really simple, special times. J.K. Rowling has given us more than she could know!!!

Written Jul 17, 2011 3:06pm

Honestly I cannot begin to tell you what a fun, ridiculously cool night we had tonight. This afternoon we got a call inviting us to a VIP Harry Potter charity party. The party took place in what can only be described as a mansion down in Cherry Creek. Tay was so excited to dress up again, although the fleece robe didn’t last long.

The party started on the red carpet where we were greeted by Aragog (Giant Spider) and Moaning Myrtle. If you don’t know who these people are, you seriously need to read Harry Potter-the world’s best book series, EVER!!! Taylor got to pose by the Flying Car before we entered the party.

Inside they had authentic costumes & props from HP 5-The Order of the Phoenix, & other movies. We got to see Harry’s original invitation to Hogwarts, Bellatrix’s black lace gown, Harry’s wand, and more. It was seriously ridiculous!!!

We then went through the house that was decorated with everything imaginable pertaining to Harry Potter. We got to take pictures with Devon Murray, he plays Seamus Finnegan in the HP movies, & Anna Sophia Robb, Soul Surfer & Charlie & the Chocolate Factory alum. Both were seriously cool and way more beautiful in real life. The picture at the top is of them & Taylor, both autographed it as well.

The party then continued outside. The backyard had been transformed into the Forbidden Forest. Dementors hung from the trees, professional actors were dressed as various HP characters, & the pool house was transformed into Hagrid’s Hut. I’m telling you this was something!!!

All the food was Harry Potter themed as well. We drank Butter Beer & had Butter Beer cupcakes (my new fav flavor). They had Bangers & Mash, Mushy Peas, & at Dobby’s Diner you could get fish & chips. The party then kicked into a fund raising auction for There With Care, an organization that helps families with critically ill children. They had such cool items…one day I am going to have enough money to do something like this & give back. We are so lucky!!! This was an event we will remember our entire life!!!

This week in general continued to be a good one on the for Taylor. His stamina gets better everyday. He did get an eye infection this week and had several dr apts, but on the whole this was an amazing week. Tonight we head to bed tired and happy!!!

Hope you are having a wonderful summer!!!

Written Jul 18, 2011 8:41pm

So I don’t know how to tell you this after the fun week we’ve had…Taylor is in the PICU. We have very little information right now. As we were getting ready for bed Sunday night Taylor became very unsteady, got a fever, & his heart rate got very high. We brought him into the ER at Children’s where he quickly deteriorated.

Taylor is on Dopamine and large boluses of fluid in an attempt to keep his blood pressures in a safe range, they were very low. He has had a CT of his abdomen & head. He also had his first seizure and is non-responsive. Right now all of this is unexplained. We are obviously extremely worried & ask that you keep Taylor in your prayers. I will update as soon as I have any actual information.

Written Jul 19, 2011 3:25am

Still not a lot of news. Taylor is stable and was intubated this morning due to his lack of responsiveness & decrease in exhaling carbon dioxide. His blood pressure has been a roller coaster of lows & highs with no one really understanding this. As I write his pressure is 75/32 and he is needing an increase of Dopamine to control his pressures.

No one really has a good explanation for this. They have just done a EKG, have an EEG scheduled, & we will be talking to Oncology to get their thoughts. The PICU team has also consulted Neurology to weigh in about the seizure.

This morning they attempted to get spinal fluid three times unsuccessfully. They will be making another attempt this afternoon. They really want to get this fluid and test it for Meningitis, which he has a lot of symptoms for. Spinal fluid could also help rule out a relapse. His blood work looks ok, some counts high, some low, but consistent with an infection. I think we are looking at other causes more readily than a relapse, but still would like to rule that out for sure.

Good news is that he was able to answer a couple questions a little bit ago by shaking his head appropriately. This morning they put a catheter in, did the three spinal tap attempts, and intubated him without so much as a twitch, so this gives me hope.

Thanks for all your prayers. I will keep you up to date.

Written Jul 19, 2011 2:39pm

I’m afraid there still isn’t much to tell. Taylor remains in ICU on the ventilator, stable. They have done many blood tests, cultures, swabs, etc. looking for the culprit and remain mostly convinced that it is an infection. They did get spinal fluid which we don’t have a final read on.

The EKG shows Long QT Syndrome, which we were already aware of. Cardiology will likely weigh in on how this effects the picture tomorrow. Taylor has been getting an EEG since this afternoon and will wear it through night to complete the 24 hour study. Then Neurology will weigh in too. Glad there hasn’t been another seizure.

Tonight Taylor was far more responsive and it was a great change. His blood pressure is still being held stable by a support medication. Tomorrow they will likely try to wean that down. He’s been getting a few different heavy duty antibiotics, so maybe we will see a end to the fevers soon too.

Hopefully tomorrow will be more successful for determining what is going on. I have been up since 7am Sunday, so I am going to try and get some rest. I am so grateful for your prayers. We love you all.

Written Jul 19, 2011 10:50pm

It was a very good night! Taylor has come way down on the blood pressure supports and is very alert. He has spent the night writing out all his thoughts, including many thank you notes to the nurses!!!

In a couple hours they are going to take him off the ventilator and get the intubation tube out. He is very excited and used a clip board & markers to ask the doctor when he could have ice cream. We know from experience that cold/wet makes his throat feel better. This is a very good sign.

I suspect that if all goes well we would move to a regular floor tomorrow. Tay will need to be able to maintain his blood pressure w/o support meds, but I still feel like we are only looking at about 24 more hours in ICU.

Things are definitely much better than last night. I’m not gonna lie though, it is super frustrating to think we are without answers as to what is going on. The overwhelming response from the PICU team is that he is septic, though how & what caused it remains a mystery. (Also how to prevent it from happening again.)

For now we are going to focus on the excellent progress Taylor is making!!!

Written Jul 20, 2011 9:50am

Today has been a very good day in the PICU. Taylor is off the ventilator AND blood pressure supports. He is maintaining decent stats on his own and will likely be moved to the floor tomorrow.

The docs still don’t have much to say as to where this infection came from, possibly it is residual pneumonia from a few weeks ago??? We will likely never know. Frustrating, as it seems we never get real answers.

Taylor had an EEG done throughout the night to complete a 24-hr study. The EEG showed an abnormality that can lead to seizures &/or stroke. On request of the neurologist he had a MRI done today. We don’t know the results yet or how things would be treated. This is really scary in light of his seizure the other day, so we are hoping that it doesn’t mean anything major.

There are still some cultures, etc. pending, but so far everything tested has come back negative for infection. Today they also did a test that would show how his immune system/blood cells are working to see if maybe that is why he keeps getting so sick. We should get those results tomorrow.

Just a lot more of the waiting game for us. Taylor did have a much better day though. He was laughing & joking, playing around, & even ate quite a bit. His feeds were also restarted. Overall there is a lot of improvement. Thank you so much for all your kind words & prayers. We love you!!!

Written Jul 21, 2011 2:12am

Okay, so this hospitalization will definitely top the list for weird stays. Taylor is a totally new kid last night & this morning. He is joking with everyone and you would swear this kid had never been sick?!?! Monday morning he was seizing, unresponsive, placed on a ventilator & blood pressure supports. Two days later there is NO hint of that sick kid. We are confused but happy.

We will be moving to the floor shortly and I expect one or two nights of observation will be all he needs before going home. This could actually be our shortest stay ever. I will let you know the room number when we get moved and kids will be able to visit then.

When you are praying today would you please ask for answers. I am happy he is better, but scared to death this will happen again. He has been in this situation way too many times without answers. Maybe the MRI or remaining blood draws will tell us something…

Written Jul 21, 2011 1:36pm

So we are in a regular room now, 837. Basically we are here for observation and to make sure Tay doesn’t spiral back down. We will likely go home in a day or two without answers. I am obviously thrilled he has recovered so quickly & to be going home, but terrified that he has had a seizure, been intubated, & had his blood pressure drop so low that he was unresponsive…all without any explanation why and/or if it will happen again.

EEG/MRI of the brain showed abnormalities but nothing of great concern. So far all the cultures & swabs have come back negative for infection, so he has been taken off of all antibiotics. Heart tests have shown the same question about Long QT Syndrome…

The one item that is still up in the air is a blood test he had done yesterday. He had his immunoglobulins tested. Now I don’t know a whole lot about this, but the test helps diagnosis immune deficiency disorders. Taylor’s test came back at 320, normal range is 685-1620. The drs ordered additional testing to help determine why it is so low and what we need to do, if anything, about it.

It looks like Taylor will get an infusion of IGg replacements tomorrow before we go home. This would help build his white cell’s ability to combat infection. If it is determined that he does have a deficiency he would like get replacement infusions every 3-4 weeks. I guess and immune deficiency seems to make as good a sense as anything else given his incredible number of septic infections, etc.

Anyway, I am feeling very depleted and frustrated tonight. Here’s to hoping we can both get a good night’s sleep and some real answers in the morning.Written Jul 22, 2011 10:31am

I wish I had any news to really give you…alas this has been a very boring & uneventful day. All I know is that we will be staying until tomorrow at least.

Even as I type Taylor is getting his first Immune Globulin infusion. This will help him fight off infections in the future. It is unclear as to whether he is getting this as a one time deal or if the blood tests run yesterday confirm that he has an immune deficiency. Hematology has not been up to talk to us which is a little frustrating to be honest. The general medical team we are under is helpful, but doesn’t really have a lot of knowledge about such a specific blood concern.

Tomorrow morning Taylor will have his G/J tube replaced. This is routine and was supposed to be done Monday, but I asked if we could just take care of it while we were here. Hopefully we will get some news tomorrow as well.

Lots of love & thanks for all your prayers!!!

Written Jul 23, 2011 9:50am

Finally!!! We are getting discharged. I was beginning to think we would be staying the night again, as it is nearing 6pm on a Friday.

So here is what we know…Oncology came down to talk to us about Taylor’s immune system. Taylor is low in IgG and was infused last night. He will need to have monthly checks & infusions for this. They think there is a possibility that Taylor is losing immunoglobulins through his colostomy. If this is the case, he will only need these infusions until he is reversed. If not, he will likely need them forever. GI doesn’t think there is a protein loss from the colostomy, but thinks that is immune deficiency could be leading him to have more intestinal issues…which came first the chicken or the egg, right? I am just anxious to learn more about this condition and talk to an immunolgist.

We will need to come in next week for more blood tests and to get more results on the immune deficiency work-up. For now though we are happy to be going home & hope we are able to stay there. Have a great weekend!!!

Written Jul 28, 2011 7:46am

Well we’ve had a few days at home now and have enjoyed our own beds & the comfort of our own home. There is nothing like hanging out in your pjs & chillin on the couch!!! We’ve seen some friends too, which is always nice. This weekend we got to go out to dinner with Uncles Mark & Randy for Mark’s birthday & see Captain America, which Taylor LOVED!!!

This week has been a return to tutoring & doctor appts. I don’t really have any new news, but we have been referred to immunology. In order to see an immunologist we will have to go to National Jewish, as Children’s doesn’t have one. I’m sure this will take time, but I am anxious to get in so that we can learn about his deficiency.

This evening we are headed up to the mountains with a cancer foundation called Shinning Stars. They are the same foundation that sponsored Taylor’s trip to Aspen last spring. We are in Winter Park until Sunday where we will be taking a short hike, boating, riding a alpine slide, horseback riding, & river rafting. Well, I should say we will be doing whatever Tay is capable of, of those activities.

I am nervous to be so far away from the hospital considering all that happened just over a week ago…there is a phenomenal amount of supplies, etc. we have to bring…but, I KNOW that some fresh mountain air & a break from this craziness could be great for both of us.

Please pray that all goes well. I will update you on all the fun when we get back. Enjoy your summer, we love you!!!

Written Aug 2, 2011 9:13am

What a very nice escape we had to the much cooler temperatures of the Rocky Mountains!!! Thank you Shining Stars for our awesome retreat!!! I have added a few pictures here & lots more you can see on Facebook. Here is a little taste of the fun we and an update on some doctor’s appointments today.

Taylor & I drove up to Winter Park on Wednesday night & met with a good friend of mine from high school, Jenny. He LOVES staying in a hotel!!! Thursday we drove to Grand Lake and walked around the shops, took a very cool boat ride around the lake, & visited with Jenny’s parents, whome we haven’t seen in years. Friday we went to the Winter Park Resort and played miniature golf, did a human maze, & rode the alpine slide. Shane was able to join us Friday night & Saturday we all went white water rafting on the Colorado River outside of Kremling. It was a very low key, just a Level 2 run, but perfect for him & they were okay with him taking his O2. Sunday we had to skip horseback riding (Taylor was VERY disappointed) and head home early because Taylor was starting to get sick.

The trip was full of highlights we haven’t had in a long time-sunshine, fresh air, lots of activity… It was super good to see Taylor trying his best to do every event and have fun. It was also great to get away, a change of pace. I am so grateful that there are so many awesome foundations to provide these trips & vacations. It is simply something that very few families with medical issues can afford, but something that makes a tremendous difference. We got to meet amazing new people, even a fellow Burkitt’s survivor, & also see some old friends, Taylor knew lots of kids from his Aspen camp-including his two roommates Sonny & Preston.

Taylor had some low points too. He took a fairly good spill on the alpine slide (his O2 got caught on the sled & flipped it) and cut his ear open. It turned out to be nothing serious, just a cut that bled pretty good & scared the heck out of me. That same accident also reopened his stomach wound a bit and caused some more pain in his tummy. He did want to get right back on, so that’s a good sign.

Overall Taylor did much better than I anticipated, not having been out of the hospital quite a week at the time. He got very tired and we had to skip evening activities each night so that he could rest up for the next day. He needed more pain meds too, but nothing really unexpected. Saturday night it was clear that he had really maxed out his energy. He could not stay awake & needed lots more meds. He also had issues with his colostomy, so we decided to head home early.

Last night he felt awful, but we were able to get him some meds and help with the colostomy pain. He also was able to sleep a good part of the ride home, etc. Today he is still worn out and has been sleeping most of the day. We did see Oncology today and talked about a plan for his IV-IG infusions. He will get one again on the 16th of this month & each month for 3 months and then we will re-evaluate. We also have been referred to National Jewish for an appointment with their immunologist (Children’s doesn’t have one.) to see if there are other things we should be doing to help with this immune deficiency.

Pulmonary also intervened today (he needed significantly more O2 in the mountains) and will be doing some testing of their own in the weeks to come. For right now they don’t have any idea what is causing Tay’s O2 need, but made very few changes. The tests he did today show that his asthma could be better controlled, so they changed his inhalers and showed us how to gauge his needs better.

It seems that we are slowly finding a balance between all the necessary & frustrating appointments/procedures and enjoying ourselves. We are learning when to push Taylor more and when we’ve pushed too hard, I think he will be sleeping the weekend’s activities off for several more days!!! Thanks for being with us on this journey, the high & low points…we are more thankful than you know.

Written Aug 14, 2011 5:57am

It’s hard to believe that I haven’t written in almost two weeks. The past two weeks have been packed full of doctor’s appointments, school preparations, and, for me, sleepless nights.

Taylor has had some poor days, sleeping all but 5-6 hours most days. His energy has been extremely low. We have seen Oncology & Special Care Clinic, among others. Taylor goes in for his IgG infusion on Tuesday and we all hope that this will boost his energy level. The plan is also to check his blood counts. His red blood counts have been low and he’s been anemic. If they continue to be low, he will also get a blood transfusion.

GI issues also continue to plague Taylor. Yesterday we spent the day at Children’s getting a bowel study. We don’t have results yet, but they were checking for poor motility and/or strictures caused by previous surgeries & disease. Whatever happens I hope that we get some answers from this.

Now on to the good news…

Taylor has been eating more and has gone from 24-7 feedings to feedings 16 hours a day. This will allow him to have 8 hours of freedom from at least one of his tubes and to go to school without the cumbersome feed bag. It is awesome to know he has gained & maintained enough weight to have some flexibility.

Yesterday also marked the 30th and final day of Taylor’s heart monitoring. He has been on a monitor since May (some inpatient and a previous 30-day home test) so he is thrilled to not have 3 sticker leads, wires, & a monitor on his stomach. It will take some time to get the results from this test, but we are hopeful it will provide answers.

Cardiology-wise we are also trying to make a very important decision. Insurance has denied a DNA test that would help determine whether Taylor has Long QT Syndrome. The test cost $5400 and can be financed over 3 years. We are very willing to make this happen, but are waiting to see if these other tests provide us answers such that we wouldn’t need the DNA test.

Right now it seems that we have more questions than answers. Lots of tests hanging out there & hopefully they hold the answers we have been searching for.

I can hardly believe that the summer is up and school starts a week from Monday. Taylor has been granted a 4 hour a day para-professional. This is amazing and I know will make the transition so much smoother. We both have an amazing amount of stress & anxiety surrounding this. Please pray that this goes as well as possible. The plan we have for now is that he will try to attend 4 hours a day the first couple weeks and we will see how his health/stamina holds.

Well, that about catches you up. Thank you so much for remembering to pray for us! Hope you are all having a wonderful summer.

Written Aug 28, 2011 12:58am

The first week of school was a HUGE success. This school year already feels so different from the last two, it’s unbelievable. Taylor went to school everyday this week for a minimum of 3 hours. His goal is 4, so we are right on target!!! I can’t say enough how impressed I am with the staff he has working with him at Prospect Valley. We have a new principal this year who I am already loving. Taylor also has an incredible team of teachers working with him. He qualified for an aide this year which is helping more than we would’ve dare dreamed.

Tay has been in great spirits, playing with his friends and going outside for recess. He comes home everyday just completely wiped, so I am hoping we can build his stamina up sooner than later. Next week this will get into full swing I am sure with much more homework, etc. We know that it won’t always be as good as the first week, but for the moment we are just thrilled with his progress.

The last week of summer was pretty fun. Taylor got to see his friend Destiny, whom he hasn’t seen since she moved in the spring. We got to play around on two different occasions with our little buddy Revin. The photo above is of them by this really cool fountain. Shane took Taylor to a Rockies game & we all went for a quick afternoon visit to see family in Fort Morgan.

On the 16th Taylor received his IgG infusion for the immune deficiency. I didn’t notice a drastic change in stamina, but we have almost gotten through August without an ER visit or hospital stay (knock on wood) so we will be thankful it is working.

His overall health has stayed pretty much the same. Still waiting on news from Cardio & GI. Pain has increased with school which was expected given the increase in activity. This past week has really given us all hope that the worst is behind us & Taylor will be improving everyday. For the first time in a long time he has a spring in his step!

Hope this finds you all well & enjoying the last month of summer (and thankfully this HOT weather). We appreciate all your love & support so much.

Written Sep 4, 2011 4:53am

I can’t tell you that the second week of school was quite as good as the first, but it was still very successful and we are finding a routine that works for us. Taylor attended class everyday again, which is just amazing to me. The addition of homework has presented a challenge, as we expected. After attending class for 4 hours & attending doctors apts, etc. Taylor is just drained. He was able to accomplish all his assignments with help. By Thursday & Friday he was so tired it didn’t take much to set him off, so there has been a lot more tears & frustration this week. I am hopeful that his stamina will catch up to the demands soon.

Taylor is loving spending time with his friends at school. I think recess has been awesome for him. With all those kids playing, it encourages him to push himself physically. This has meant an increase of pain and a need for more meds, but “good” pain if you know what I mean.

He is also really enjoying his teachers. His aide Karla is proving to be a huge help, as I knew she would be. She keeps him focused & explains things when Taylor is confused. It is also a great relief for me to have an adult watching him 24-7. She notices his moods, health concerns, etc.

Taylor has an incredible classroom teacher too! Mr.Tharp makes learning fun and the class is broken up such that Taylor gets the core classes, math, reading, & writing during his 4 hour span. He definitely enjoys having a guy teacher for the first time ever.

There is an amazing support staff watching over Taylor too. He gets help from Ms. Jennings to make adjustments to assignments or ideas on what assistance could help Tay learn better, he also has seen the counselor there so that he knows her if he should need anything while he’s at school. Things continue to go much better than we could have hoped for.

The school nurse, Mrs. Cross, has seen lots of Taylor & probably has me on speed dial by now. Friday I got a call that Taylor’s feeding tube was coming out. So after picking him up early & an unexpected trip to Children’s, he now has a new tube. It’s never dull around here!!!

This week we also met with his surgeon. We are temporarily scheduling his ostomy reversal for December 13th. It should be a 7-10 day stay, including a brief precautionary stay in the PICU. We were, however, warned that this could be extended given Taylor’s history and we risk being in the hospital over Christmas. My response was, “It wouldn’t be the first time.” Taylor’s response, “There couldn’t be a better Christmas present than getting rid of my bag.” All-in-all we know the importance of getting this done and holiday break provides the opportunity to get as much healing as possible without missing class.

Our surgeon also gave us some silver nitrate to try and get Taylor’s abdominal wound sealed. He hates this! The area is pretty good sized and it is clearly painful. He is still wearing a decent size bandage that oozes & creates skin deterioration. Minor things, but after 4 months you’d think he wouldn’t still need a surgical wound dressed. He also suggested an increase in fluid intake to help with dehydration. Since Taylor isn’t drinking much this will mean we will put extra water through his feeding tube. He should still be able to stay of feeds during school hours, which is great.

Cardiology has suggested another test. If I understand it right they give him an infusion of meds and monitor his EKG to see what his heart rate does. They are trying to decide if he needs to be put on beta blockers. Not sure how quickly we can get in to get this done, but it sounds as if it would take the better part of a day to complete.

That’s really all I know. I haven’t felt well myself the past week so we have been playing it low key, school, drs, and not much else. We did finish the final book in the Hunger Games trilogy…awesome!!! That is the best “family” series we have read since Harry Potter. Taylor is already counting down to March 23, 2012…the movie’s release date! Crazy kid!

Hope you are all enjoying the end of summer and, at least in Colorado, a taste of cooler weather. Have an incredible long weekend!!!

Written Sep 7, 2011 5:32am

Well it appears that we have hit a rough patch, hopefully a minor one. The first part of the weekend Taylor spent most of the day sleeping, but he was able to see “Smurfs” Saturday night & Sunday evening had some friends over to play. I really wasn’t concerned about him sleeping the days away, as he has been going to school & in general being far more active.

Monday we let him sleep until 11:30 and then went to the Rockies game. He seemed fine at first, excited because he loves to go to baseball games. Our seats were in the sun and it got quite hot. After about 3 innings he was soaked with sweat and pale. I suggested we go up and walk around the concourse in the shade for awhile. Taylor got up the steps and approximately 20 feet down the concourse before he crumpled and nearly passed out. I was able to catch him and get him seated.

To be safe we took him to the Rockies First Aid Center, which is pretty impressive if you’ve never had the misfortune to use it. I asked that they check his blood pressure, which was only slightly elevated. He laid down for awhile and cooled down, the heat had really drained him. Taylor being Taylor did not want to leave the game so the first aid staff found us seats in the shade very close to them. He gave it a valiant effort but he was spent and feel asleep within 5-10 mins, thus we gave up and came home.

Last night he was extra cranky & tired, but okay. This morning when I got him up to go to school he was in a lot of stomach pain. His ostomy appears to be clogged again. So we are taking the first steps here at home, increasing fluids, running meds through his g/j tube to help, and giving him pain meds as he needs them. He is sad he had to miss school for the first time today, but we are hopeful that by taking these steps to help now we will avoid a worse issue & hospital stay.

Thanks for keeping us in your prayers! Hopefully this will just be a tiny set back and he will return to school tomorrow.

Written Sep 8, 2011 3:13am

Quick update:

The pain has gotten worse and Taylor has needed pain meds every 4 hours + like clock work. He actually starts asking for them around hour 3, but we can’t give them yet. He’s very sad about missing school for a second day.

No fever, etc. but a quick call to his PCP has us going in for an exam and stomach x-rays to make sure he isn’t having any addition GI problems.

I will update you as soon as I know anything. No news is good news. Thanks again for your prayers, love, & support!!!

Written Sep 8, 2011 8:55am

Frustration is the word of the day! Good news is Taylor does not have a blockage or perforation that would require surgical intervention. Bad news is that GI issues seem to be the root of the pain. Taylor is having motility issues in addition to the chronic pain & nerve damage. The docs have given him two new medications & increased a third to try and help manage pain and get him back to school.

Both Taylor & I have had two very long frustrating days/nights. Think about how awful you feel when your stomach hurts & is nauseous with flu, etc. Now multiply that by 700+ days to get to where Tay is! I am struggling to sit back and watch hour by hour, year after year while my son is in pain. On his best day the pain/nausea is controlled only by 30+ pills & 5 patches!!!

I wonder how much pain & suffering one child can take before he breaks. All he even wants from life is to go to school & return to the swim team. I freakin HATE cancer & the treatments that cure it only to leave the body racked with problems.

Okay, sorry about that breakdown. I just needed to vent. I’m exhausted, as I too haven’t slept much the last couple days. This is just a set back, a relatively minor one. In a few days Tay will feel a little better again. His surgery is scheduled in just over 3 months, & we know he does better without ileostomy bags & colostomy bags.

Tonight when you go to bed please do me a favor. When you pray for Taylor, say blessings for all your healthy loved ones, especially your kids. We so often drive by schools, soccer fields, etc. and see loads of kids happy and carefree. That is what they are supposed to look like. Today I spent the better part of the day with children who weren’t so lucky & it breaks my heart.

Thank you for allowing me to get it all out…for caring about not just Taylor’s health, but providing us with strength & support without judgment. We are so lucky & loved, that is what carries us through a particularly rough day like today.

Written Sep 11, 2011 5:07am

I am happy to report that things are looking up. Each day since Taylor started the new meds has been a little better than the last. I am always hesitant to add new meds (let alone 3) to his already horrendous amount of medication. Sometimes it feels like we add pills just to treat symptoms from the other pills. Anyway, this time it worked in our favor and Taylor is back down to his normal pain level. (I just read that sentence and it is so depressing!)

Thursday morning Taylor woke up immediately asking for pain meds. When I told him I was going to call the school first he informed me he was going to school even if it had to be without pain meds. He actually said, “I’m not missing a third day of school. I’m not even hospitalized!” Who says that? I am so very proud of his drive and commitment. I can tell you I would not have gone to school that day if it were me.

Yesterday was so much better! Tay had a half day at school & then went to acupuncture for scar work. This is what the picture above is of. We were also able to have lunch & get pedicures-these are awesome for his neuropathic pain in his legs & feet. He even had enough energy to play video games with Papa Terry while Shane & I got away for a movie.

It is so amazing to me how quickly things turned around this time. I hope this is a sign that things are PERMANENTLY turning around. Tay sure deserves it!!!

This weekend we will be relaxing, getting caught up on his missed class work, and going to the Rascal Flatts concert. Taylor just loves the song Sarabeth, it’s about a cancer kid. All-in-all it should be a really fun weekend, well after he finishes his homework! 🙂

Monday Tay doesn’t have school, but has several doctor’s appointments. He has many tests coming up too, two of which are overnight stays at Children’s. Maybe some of these upcoming appointments/tests will give us the answers we’ve been looking for.

Thank you all for your prayers. They definitely made a difference this week. I want to say a special thank you for supporting me with your kind words this week. Being the primary caregiver for my son is the most challenging job I have ever faced. It is also the most rewarding. I feel like a roller-coaster, literally. I’m up & down more in a single day than one can imagine. This week finished on a up because of your prayers & support. We love you all more than you could possibly know!!! Have an amazing weekend!

Written Sep 21, 2011 3:05am

Friday made one month of school for Taylor!!! During that month he was able to go 4 hours a day & only missed 2 days!!! I am so proud of him. Many of those days he was hurting & exhausted, but he has been so determined to do well in school & regain some semblance of a normal life. To put it in perspective, he hasn’t attended this much school in the last two years combined.

This week his schedule is changing a bit. We are going to try four longer days, with Wednesday’s off. This way he gets more subjects, a little more class time, and hopefully doesn’t over do it. It may take some time to find the best schedule for him, but luckily all who are involved are up for trying new options.

This past weekend wasn’t great, health-wise, for Taylor. He had issues with his ostomy & increased pain again. We spent Friday & Saturday relaxing, or sleeping for Taylor. He is just spent by the time Friday night rolls around. Saturday we did make it out to a Lego event at the mall. He helped build a life size Sponge Bob. As you can imagine, he loved that!

Sunday Tay woke up hurting and very nauseous. He desperately wanted to make the Rockies game, the last we have tickets for this year. We tried to go get him some sunshine & fresh air, but after about 4 innings he was too sick to stay. In hind sight we should have skipped the game, but after years of saying no because of counts & hospital stays…well, it isn’t that easy to continue to be the bad guy.

Yesterday the pain was worse. We did our home remedies, got lots of rest, & ran extra fluids and today he was better enough to go to school. We may need to go back to round the clock fluids, which he will fight-he hates taking them to school. Looks like they are going to do a full GI scope on the 11th of October, maybe that will give us some answers.

That’s about all I know. Hoping his pain can be controlled & school goes well this week. Enjoy the beautiful fall days! Lots of love.

Written Sep 28, 2011 2:07pm

Lots to share. Last week Taylor was having issues Monday again with his ostomy, but we were able to get control over it quick with some increase in meds. He was able to go to school Tues-Fri from 9am-2:45pm!!! By Friday afternoon he was so tired he could barely hold his head up and cranky!!! We will be moving towards four full days (M,T,TH,F) and a day off in the middle of the week (W). This way he will get every subject and with a little luck, be able to keep up with everything without wearing himself out & getting sick.

Thursday we were able to fill in a last minute slot and get Taylor’s “sleep” study done. This turned out to be great timing. He was so tired from three full days of school (minus specials) that he crashed for about 5 hours, enough to get the info we needed I hope. The picture on today’s entry is of the wires he had attached during the sleep study. I doubt seriously I could have slept for 5 mins with that much on my head! Anyway, all I know is that his oxygen dropped as low as 71% at one time and stayed in the high 70’s/low 80’s for most of the study. This is pretty low, even for sleeping. It is good news in that he did drop, last time we did this study he had a fluke night and his stats stayed good. These stats should help us get a better idea of what is going on with his oxygen issues & maybe even an idea for what we can do to help him. I know he would be thrilled to get off the O2 during the day at least.

This weekend we left the house literally once, I took him with some good friends to see Dolphin Tale. He loved it, I got some much needed crying time…it was all good. (There is a subplot about a teenager who is injured and unable to swim on his swim team that really hit home.) Other than that he slept or rested the entire weekend. I too tried to catch up on some sleep as I seem to have come down with a bad cold.

Today we were at the hospital bright and early for his immuno-globulin infusion. This will hopefully keep him healthy and getting stronger everyday in preparation for his surgery in a few months. It was a very long day, but these infusions seem to be working & we have been able to stay away from emergency hospitalizations.

Taylor & I were asked to take part in an interview today that was filmed about ostomys. They asked us questions about how we deal with all the issues, etc. that come up. I hate being filmed but agreed because this will be given to families to help them transition when they first go home with an ostomy. I know Taylor could have benefited greatly from hearing from another kid that has been through what he has. I was able to talk about how you can help tweens and other kids not to be embarrassed & deal with all the emotional frustrations. I really hope that this can help & was so proud of Taylor that he was able to be raw & open with his feelings in able to potentially help someone else who is facing challenges.

The rest of this week should be pretty low key & normal. Next Tues/Weds Taylor will go inpatient to get some cardio testing done. I hope that we are able to solve the question of long QT syndrome once and for all. The not knowing is terrible. This is a disease that takes people’s lives suddenly & without warning. I have been uneasy since he quit breathing 14 months ago. Taylor isn’t excited about missing school to get to the bottom of this, but it needs to be done.

We hope this entry finds you well and enjoying the beautiful fall colors, if not yet the cooler temps. Thank you in joining us with your support of Taylor through sickness and his long road to recovery. We are so proud of him and grateful for all the love & support.

Written Oct 5, 2011 12:09am

Well it was an early start to a busy day for Taylor & I. We are at Children’s hospital and he is having a Cardiac Catherization done even as I type. The procedure will take at least a couple hours, but will hopefully provide us with answers about his heart-specifically, if he has Long QT Syndrome.

He is having sedation and is expected to stay overnight, mostly for observation. I thought he might freak about having to come in, but instead he told me he would be happy to see his nurses & have a rest…”school is exhausting mom,” he told me. I too find that a planned stay isn’t a big deal, especially with it being so short.

If we learn anything I will update, if not just assume all is well. Thanks for keeping us in your prayers.

Written Oct 5, 2011 8:53am

I am excited to tell you that I am typing this entry from the comfort of my own home! Taylor did very well during his cardiac testing & they were able to get enough information without him spending the night. Amazing surprise!!!

We won’t be getting much information until Friday, but I do know that Zofran is not causing his EKG’s to read differently. This is excellent information because it means he can go back to using that medication to treat his nausea and this is the med that has always worked best.

Taylor’s cardiologist & I talked today about placing a loop monitor to help better understand what is going on with his heart. This is a fairly serious step & neither of us feels certain that we need to go this far, but it may be necessary. The monitor is surgically placed and would give us a definitive answer as to what his heart is doing when he gets sick. We are essentially trying to see which came first, the chicken or the egg-in his case the respiratory issues or cardiac issues.

While I hate to have him undergo unnecessary procedures, especially this serious in nature, we still need to know why he quit breathing and have some peace that it won’t happen again. Today’s test likely ruled out that he has the most common form of Long QT, which is commonly aggravated by exercise or physical exertion. The event 14 months ago when he just quit breathing would more likely have been the less common form of Long QT and an implanted monitor may be the only way to know for sure.

I will talk more to the cardiologist Friday, but Long QT patients need to be on beta blockers to prevent their heart from having an extended beat that throws off the rythym and prevents the heart from triggering the next beat. Thus the heart can suddenly stop without warning. Many of these patients end up with a pace maker, but that would happen only after first trying the beta blockers.

Sorry if I am rambling…this stuff makes me crazy. I don’t think I will ever stop worrying again. Fourteen months and I still feel like it was yesterday that I was giving him CPR and waiting for the ambulance. Out of all the crazy, scary moments we’ve had, that is the one that still gives me nightmares. There just aren’t words to describe your child limp & lifeless in your arms, turning gray…I still cry every time I think about how close we came to not having Taylor in our lives. I still wake up a million times a night and check to see his little chest go up & down. I wasn’t this bad when he was a newborn! 🙂

Enough of that! You know I hate to end things on a sad note. I hope I haven’t shared this story already, but forgive me if I have. School pictures were a few weeks ago and Taylor asked me if he had to wear his oxygen. My response was yes for two reasons. First, I don’t want him to be ashamed of how he looks-not for the O2 tubing, the ostomy bag, etc. He did not choose these things and they are medically necessary to keep him alive & healthy. Second, I told him that school pictures were awesome because they show exactly what you look like at that moment. I said that when he reflects back on his life in pictures I want them to accurately portray where he was in life. His response- “So can I wear my hat? I always wear a hat unless I am in class so that would be an accurate picture of how I look most of the time.” You can see by his new school picture that I gave in as a result of a very well thought out argument. I know he wants to be a psychologist, but if that doesn’t work he may have a career in the legal field.

Written Oct 8, 2011 2:09pm

Quick request for prayers. Taylor came home sick from school today for the first time in a long time. He is sad & frustrated. Taylor is having lots of pain and we are back to giving extra pain meds every 4 hours. He also has a low grade fever, is super pale, & has cold symptoms. Of course, that friggin ostomy is giving him fits too. The December reversal surgery cannot come quickly enough for any of us.

He has spent the afternoon & early evening sleeping. He needed some extra oxygen & his heart rate was elevated some, all signs of pain increase. We are running lots of fluids and hoping the weekend can provide some healing rest.

Taylor has lost some weight recently, about 6 pounds. I think his weight is at a good point, but we have to be careful he doesn’t slip because that would affect surgery & possibly even postpone it. He was eating really well, but this past two weeks hasn’t had much of an appetite.

I will let you know if anything changes. Thanks for keeping him in your prayers.

Written Oct 11, 2011 1:00pm

So just a quick update on where things stand and the plans for this week. Taylor is still dealing with an incredible amount of pain which is gut wrenching & heart breaking for me to watch. He continues to sleep an extraordinary amount and in fact was up only 16 hours from 1pm Friday afternoon until I woke him for his doctors appointments at 7am this morning. It is frustrating to say the least.

We are trying so hard to get Taylor’s pain meds down so that he is on the minimum amount possible prior to his surgery in December, when we will obviously need to have as many options as possible at our disposal. Over the past few days Taylor has needed much more pain medication again and even that hasn’t been helping much. Of course all the meds make him even more sleepy…I feel like a cat chasing my tail.

Today Taylor was seen by his pain team with the plan to stay where we are currently (instead of attempting to reduce doses again). Tomorrow Taylor will have his GI scope and we are all hopeful that it will give us some clue as to why he still has such incredible abdominal pain. Please pray for answers!!!

This morning Taylor also had an appointment with his psychologist. He really broke down and expressed his frustrations with not feeling better. Another concern for him was how little time he gets to himself now that school has started. To me this is another sign that he is wearing thin. I know he loves being at school, but it amazes me how exhausted he is when he comes home. I do feel bad that by the time he is done with his homework there is very little time left for him to chill out and rejuvenate. I have been working with his teachers, etc. to figure out a plan for him to stay with the class & have at least 30 mins to an hour to himself everyday. Finding a balance isn’t easy, given that he missed two years of class time.

Tonight we will continue to prepare him for the scope. Taylor has to have massive amounts of fluid through his g/j tube (he can’t hold down this much fluid by mouth). Also, he has had only Jello since dinner last night, which is adding to his overall lack of happiness. With all this fluid, etc. I am preparing myself to get up every few hours to deal with his ostomy, so I will probably be the grumpy one tomorrow.

I am going to try and get rest now as we have an early morning & long day ahead of us. I should mention that they are also doing a skin biopsy tomorrow to test for some genetic diseases. These results won’t come in for months, but it is still nice to get them started.

Written Oct 14, 2011 8:48am

I am happy to report that Taylor was finally able to return to school today. This has been his longest absence since his return to school this year & I know he was very happy to be back with his buddies. Tonight he is tired and has taken extra meds to control pain, but still better than the past week.

Tuesday was Tay’s GI scope. It was a very long day, but fairly successful. The initial findings didn’t show anything extraordinary, but they did take 3 biopsies which we should get results for the first part of next week. I hate to say it, but I was sort of crossing my fingers that there was an area of scar tissue of something minor that we could “fix” to help with his pain. I am very happy that the results are good so far though and am reminding myself daily that we are only 2 months away from his ostomy take down, which should help tremendously.

Yesterday Taylor was interviewed by Channel 31 Fox News as part of a LEGOS for Leukemia segment. This is a great charity that our friends Leann & Christian set up to honor their husband/father and support kids going through cancer treatment. The segment will air tomorrow morning, but I don’t have the exact time. I should be able to post a link after it airs though.

Three straight days at the hospital has worn us out. I am hoping we can have a low key weekend, make-up homework & costume making. Thanks to everyone for hanging in there with us. We really appreciate you guys!

Written Oct 17, 2011 9:30am

We hope you are having a great weekend. Ours has been quiet, as Taylor has been running low on energy. We were able to get some homework done, play some Lego, & watch Green Lantern (It won’t win any awards, but looking at Ryan Reynolds in a tight green unitard was pretty fun!). Taylor also had a playdate with his friends Myles & Ben.

I have been emotional all weekend to say the least. Friday afternoon at 4:45 our GI nurse called. She didn’t have results from Taylor’s biopsies, but she had “concerning” blood work. It appears Taylor’s hematocrit & hemoglobin counts are the lowest they have been since prior to his surgery in May. This is concerning because he has constantly run low, but has been inching up each time. He is currently taking prescription level iron, so anemia should not be the problem.

Tomorrow we will go to Children’s and have his blood panel repeated, possibly even receive a transfusion. This is all stuff he has had before. What is concerning is why are his counts so low? He has not been fighting off infection, etc. I am so frustrated that we get this information at close of business Friday. I have not told Taylor what is going on, there is no need for him to worry. Of course with it being the weekend I just have to wait and try not to worry myself, easier said than done.

For the past few months both Taylor’s special care doctor & I have been concerned about his lack of energy & low counts. These go hand-in-hand so the bright side may be that we end up being able to help his stamina with a transfusion.

Please pray for these results to have been a fluke or something minor and not a sign of something worse or more challenging. Taylor has come so far this fall at school, etc. I just don’t want to have anymore set backs. I will let you know any news as soon as I get it. Lots of love to you all!

Written Oct 18, 2011 9:14am

Just got off the phone with GI. Taylor’s blood work today looked much better. No one knows for sure, but they think it may have been a lab error. There was some issue with his platelet smear that day that I didn’t even know about. We also got word that the biopsies taken during his scope last week are all normal as well. Finally able to breathe!

Written Oct 27, 2011 1:07am

So the last week & a half has had its ups & downs. Taylor had a very good week at school last week. We got to go to our first harp concert for a dear friend of ours, Morgan. I got to reconnect with a friend I hadn’t see in 15 years, which was awesome! Taylor also got to go to Anderson Farms and do a corn maze with his Uncle Randy. They had a great time & I was thrilled Randy took him. Taylor has been wanting to go do a corn maze for sometime, but I am deathly afraid of them. I know, I know…crazy! I blame my brother for making me watch Children of the Corn one too many times when I was a kid. 🙂

Over the weekend Taylor started having lots more pain again, trouble with his ostomy, & was just plain exhausted. This has continued through the first part of the week and for the first time this school year, he has missed three days in a row. I have seen some improvement and hope that he can return tomorrow. The pain is definitely at its worst through the night, which has lead to some long restless evenings for both Taylor & I.

I have talked to GI about the pain and neither or us sees much we can do to help (that we aren’t already trying) prior to his surgery in December. Hopefully we can find some balance that helps him for the next two months. After the surgery we will work with his motility issues, etc.

I am hoping that we will have some luck on our side and that Taylor will be able to really enjoy Halloween. He was in the hospital last year septic from before Halloween until the day before Thanksgiving and the year before he made it to his class party only to end up in the hospital right after with low counts after chemo. I am doing everything I can to make this Halloween very special for him & hope he can enjoy it.

For today we will stay in our jammies and watch the beautiful snow fall. I love the snow and it brings me such peace & fond memories of my mother. I know this is her way of saying this too shall pass and hugging me the only way she can.

We wish you all a peaceful snowy day & a very Happy Halloween!

Written Nov 3, 2011 2:07pm

I can’t believe it is already November! Lots of exciting stuff is happening this month for us. Taylor & I are going to see the Broadway version of the Lion King at the Temple Buell Theatre, Denver International Film Festival starts today, and we are going to spend a week in Texas visiting Shane’s family over Thanksgiving. We are very much trying to keep these very positive things in our thoughts as we face some challenges with Taylor’s health.

I am frustrated to report that Taylor has missed most of the past week and a half of school. He has had his normal issues with pain & GI problems with his ostomy. Monday was a particularly troublesome day. I am happy to report, however, that he was able to make it to his school Halloween party & trick-or-treating for a brief time Monday night.

Taylor had an “episode” on Monday morning that carried with him throughout the day. He woke with severe pain and trouble getting out of bed. I helped him to the bathroom and slowly he regained full use of his legs and was able to walk on his own. Throughout the whole day he was very shaky and unsteady. That morning he was also very confused and could not understand the simplest instructions. This too got better as the day progressed.

I stayed with him at his school party and his paraprofessional was with him through the rest of the school day. He slept most of the afternoon both at school and at home, waking only for an hour and a half in the evening. We used his wheel chair to trick-or-treat, but even at that he was unable to stay awake and was nauseous after a brief time.

In hindsight I should have taken him immediately to the hospital. Instead I listened to him begging me to not let him miss Halloween for the third straight year. I knew he was always with someone one-on-one and gave in to the pleas of a child. Of course, when we were able to get into the doctor today they couldn’t tell us much.

Next Thursday Taylor will go in to see the neurologist for an appointment we already had. There is some concern that he may have had a silent seizure. The appointment was scheduled early last month when two of his doctors and a nurse noticed him having abnormal hand and arm movements prior to a procedure. In light of his seizure in July and the incident the previous July when he lost oxygen to the brain temporarily, everyone feels it best to be careful and have him treated by neurology.

Most of you know that I have blackout episodes with my headaches that are controlled with seizure medication. This, in combination with all that has gone on with Taylor, makes me worry that something more may be going on. Hopefully, we will have better luck getting answers next week.

For now we are trying hard to enjoy life & put these questions & worries aside as much as possible. Halloween weekend brought with it great times with friends and a chance to let go of everything for a little while. We were able to spend time with my aunt, Linda, and have several of our friends over for a Harry Potter themed Halloween party.

Denver has had two good sized snow storms in the past week, one that left us without power for 48 hours. Being without life’s conveniences like heat and lights really can put things in perspective. Taylor and I spent time doing homework & reading by candlelight and talking about how lucky we were to have shelter on a night when it got below 13 degrees. We also had our share of frustrations… missing Survivor and freezing under piles of blankets, among others.

Tonight I pray for answers. I thank God for heat, lights, and an amazing child that I love more than anything.

Written Nov 17, 2011 1:03pm

This has really been a crazy month. For the most part things have gone very well and we have been able to do some super cool things. The Denver Film Fest just finished up & I was able to see an obscene amount of ridiculously good films & docs. Taylor joined me for three environmental documentaries…I love that he has an interest in documentaries!!! Shane & Taylor were given great tickets to a University of Denver Hockey game from some good friends, AND had club seats for an Avalanche game from Shining Stars Foundation.

The best part of the month, thus far anyway, has to be going to see the Broadway performance of The Lion King at the Temple Buell Theatre with Michele & Morgan. It really is incredible. Watching Taylor’s eyes light up like they did was really something to see.

School has been going really well too. Taylor loves being with his friends and learning about different things, especially science! Report cards came out this week and his was so much better than we could have even hoped for. He is at grade level in everything, with some areas that still need improvement. Him having missed nearly 2 full years, I did not expect this at all. I must say that he is putting in the time and effort of ten kids, so these grades are much deserved.

Taylor received quite an honor last week at school. He was chosen to go into the Hall of Fame. This award is given to one student per class that the teacher feels directly reflects the type of students they all strive to be. Taylor was chosen for “overcoming adversity, putting forth his best effort, and being a loyal friend.” He absolutely adores his teacher and was honored to get an award from him. I know this & his report card will encourage him to keep trying as hard as humanly possible. I am so very proud of him!!!

Medically Taylor has had a decent 2 weeks. There was a rough patch, as you know, around Halloween, but he’s hanging in there. I am very hopeful that the week they get off for Thanksgiving will be just the break he needs to push through until his surgery.

In the last week or so we have seen Taylor’s PCP, Pain team, Psychologist, Neurologist, Acupuncturist, Physical Therapist, & he has had his G/J tube replaced. Busy, busy. We are basically at a stand still with most everything until his surgery on December 13th. (Only 28 days until his ostomy reversal!!!)

The neurologist was really the only doctor who gave us new information. He suspects that Taylor did have a mild seizure on Halloween. Taylor is scheduled to have an EEG on Dec. 7th so that we have an accurate baseline test. If at any time we see seizure-like behavior or Taylor becomes extremely confused & unsteady again, we are to take him directly to the ER. Unless he has another episode there really isn’t anyway to be sure what happened.

The other thing that the neurologist said (actually the reason our GI/PCP docs referred us to neurology) is that Taylor quite likely is suffering from a movement disorder. This could be the reason for his restless legs & disrupted sleep, for his inability to sit for long periods and focus on school work or even a movie…I feel awful about this. I have been so impatient with him and assumed he could control the movements, but he may in-fact not be able to. We see a movement specialist on December 12th that will help us get to the bottom of this. Lots of things can cause these disorders to come about, high fevers with extended periods of illness, trauma to the brain, chemotherapy, even some medicines (although they didn’t see any that he was taking)…all of these which have happened to Taylor. Finding out what is really going on could help him concentrate more which I think could really help, especially in class.

As you can see, this really has been a full month already. I am so glad that things are going well, that we have had so many more fun times than frustrations…really things to be grateful for.

Monday we leave for Dallas, Texas. There we will spend Thanksgiving with Shane’s parents, brother & family, aunt & uncle, & grandparents. We haven’t been able to see Shane’s family much since before Taylor got sick and certainly not all together. I know Taylor is very excited to see all of them, specifically his two cousins. I hope that we have a safe journey down and that Taylor can go without any medical intervention. This is by far the farthest & longest time we have been away from Children’s.

I hope to post some pictures while we are away, but if I don’t get to it, know that no news is good news. We really hope you all have an amazing Thanksgiving & are able to enjoy your loved ones. We send lots of love your way!!!

Written Nov 30, 2011 5:51am

Here’s hoping you had a fantastic Thanksgiving!!! For the first time in three years we were able to go visit Shane’s family in Dallas, Texas. It was super fun despite the 15 hour drive & my nerves at being away from Taylor’s doctors. This was a big trip for us. Since Taylor was diagnosed we haven’t gone more than 2 hours away from Children’s. What a giant step in his recovery! (and ours)

We packed all sorts of fun stuff into our trip. Monday we got in so late that unpacking was adventurous in our tired state. Tuesday Taylor, Shane, Grandma “T”, and I went to the Gaylord hotel. This is a huge, fancy hotel in the Grapevine area. Every year from just before Thanksgiving until New Years, they have an ICE event. It takes months and 2 million pounds of ice to create the breathtaking sculptures. This year’s theme is Shrek the Halls. OMG!!! Taylor & I LOVED it! If you are in the Dallas area, this is a MUST see. It is only 9 degrees inside so they give you these gigantic winter coats to put on…it really gets you in the Christmas Spirit.

Wednesday we went to the Grapevine Aquarium. You all know how much Taylor loves the water & sea life, so this was right up his alley. They have a 360 degree tunnel where sharks swim above you & below you. Taylor’s fave was the sea turtle, mine the jelly fish. I think the Nemo characters have made a lasting impression on us!

Thursday we celebrated Thanksgiving with Shane’s family. We were able to see Taylor’s great grandparents, Shane’s aunts & uncles & their families…it was amazing! Most of the relatives we saw haven’t seen Taylor in so long, but have been praying for him from afar. I know it meant a lot to all of us to get together.

To end our stay in Texas we went to Legoland Discovery Center. It is basically a miniature version of Legoland with rides & sculptures made of Lego. Taylor was in heaven. They, of course, had a building center, which was not the easiest place to get Taylor out of.

Saturday we left early to head back to Denver. Our intention was to rest up Sunday so that Tay could attend a field trip with his class Monday. Unfortunately the cold he has been battling since before we left had other ideas. We have been spending the last couple days watching Christmas specials, sleeping, & getting lots of fluids.

Tomorrow Taylor will get his IGG immune system boost. I have a feeling that this will be just what he needs to get over this crud. He is a little overdue for it because we were trying to get it done as close to his surgery as we could. In hindsight, I may have done it before the trip. He was easily tired and took 3-4hour naps each day after our outing. Thankfully we brought his wheelchair, I’m sure that helped his stamina.

All-in-all this was a great break for all of us. We are so grateful to have been able to visit with Shane’s extended family and get away for a vacation. Thank you all for your prayers for a safe trip! Lots of love!

p.s. I have added some new pictures of the trip. Caringbridge cannot hold many, so if you want to see more, check Facebook @ Michelle Carlock. Thanks!

Written Dec 9, 2011 4:14am

The holiday season is in full swing now…beautiful snow, our house is decorated just in case we get the chance to be home on Christmas. Taylor and I are going to see the Nutcracker at the Temple Buell Saturday thanks to my awesome brothers and their thoughtful birthday present. One last weekend of freedom before we journey in for Taylor’s big ostomy reversal surgery on Tuesday.

This week has been full of ups & downs. My friends & family really spoiled me for my birthday and I thank them for making it so special. Taylor bought me a ridiculously thoughtful gift at his school rock fair, a crystal that looked like the kryptonite in Smallville and reminded him of me. (We watched the first 9 seasons when he was sick, snuggled up together.)

In what has become the normal turn of events for us, the partying didn’t last long before more frustrating health news came in. Yesterday I took Taylor in for a hearing test. He has been struggling to hear for awhile now, slowly getting worse. I kept thinking it was these infections/colds, but in the past two months it became obvious it was more. Yesterday’s hearing exam confirmed that he has lost 75% of his hearing in his left ear and his right ear is below normal.

The Ear, Nose, & Throat doctor got him in yesterday afternoon and determined it isn’t nerve damage, which is good. He has a lot of fluid behind his left ear that will need to be surgically drained and he will need to have tubes put in & likely his adenoids taken out. He will then have another hearing test to see how much we were able to help the situation. The next step, if needed, would be to manipulate the ear drums??? I don’t even want to think about that.

We are obviously thrilled that the first step is a fairly minor surgery. That said, it was still a very hard pill to swallow that he in fact needed an additional surgery at all. Taylor made it to the car before he started balling. He asked me why I ever said things would get better, when they don’t. He said that the ostomy reversal was supposed to be it, last fall. How am I to answer that? When will it end? I know it is easy to say be positive, God is there, things will get better, at least this isn’t cancer… All of those are true, valid points. They don’t make a little boy that is so over being poked & prodded feel a bit better.

Of course I told him everything that a mom should and by the time we got home he had stopped crying. It truly breaks my heart though. I remember how scared I was when he was 14 months old and got his first ear tubes put in. We’ve been through so much more since then, but hearing your child needs surgery, even routine surgery, doesn’t get easier. Do you know that he has been under anesthesia around 60 times? Three times every chemo round, every bone marrow aspirate, every surgery-nearing the 20 mark, & countless procedures…What can you do?

Yesterday Taylor also had an EEG done to help set a baseline for any future seizure like activity. We won’t have any results on this for a few days, but hope this is one test that we did as a precaution that is never needed.

This morning Taylor & I met with the surgeon and things look good. He is happy that Taylor has put on weight. We will go in Monday morning to have last minute blood work & get him matched for a transfusion, should he need one. We also meet with the Movement Specialist in Neurology on Monday, really hoping that goes well.

For today we are going to focus on enjoying these last few days at home. I really appreciate all the kind words here & on Facebook. Your support keeps us both going when depression tries to rear its ugly head. I will likely not write again until Tuesday, but will keep you up to date as best as I can these next couple weeks.

Enjoy this magical time of year and make sure to tell everyone around you just how much they mean to you. Lots of Love!

Written Dec 14, 2011 1:53am

Taylor is going into the second hour of his surgery now. Things are going well and as a pleasant surprise they put his tubes in his ears! I am very happy they could do this in one surgery!

Knowing Taylor as well as they do, the doctors have already told me that he will be moved to the PICU after surgery and will likely be on a ketamine drip to manage his pain since that worked the best last time. They did warn me that he may come out intubated and, instead, on different drips if they feel that’s the better choice when they are in the OR.

I am very happy to report that his surgeon, whom we love, agreed to do a central line so that we don’t have to do a ton of IVs this hospital stay. There are SOME benefits to knowing your way around a hospital.

We very much appreciate your cards, texts, e-mails, prayers, & visits. You guys are & have been our rock through this whole mind numbing adventure. If you plan to visit, the PICU has rules against flowers, food, and children under the age of 13. Those are all fine when we get to a regular room.

I will keep you posted, as best I can, how the day goes & when he is out of surgery. Lots of love!

PS-The picture is his new Superman Snuggie that he got last night. As you know, Taylor LOVES super heroes & we hope some of Clark Kent’s ability to heal will rub off on Taylor!

Written Dec 14, 2011 8:17am

Wanted to let you know that Taylor is all settled into his PICU room. The surgery went very well and took less time than they expected. For the first time since his very first surgery the surgeon felt he was well enough to suture his wound. This is exciting, as it will take a lot of time off the healing end.

Taylor will need to remain in the PICU to maintain good pain control with both a Ketamine drip and a Dilaudid PCA button he can push when he needs better coverage. He is already moving around a bit which is huge.

This is really the first time that we have been in a position where things have been planned & gone so smoothly. Here’s hoping it’s a sign this stay will be easier than we thought.

Thanks for all your prayers. I will update you in the morning.

Written Dec 15, 2011 2:21am

Good Morning! Last night went fairly well, at least for a night following a major surgery. Taylor’s pain has gotten worse and he didn’t sleep but two hours. This may also, at least in part, be due to the Ketamine drip. He isn’t talking much and is getting a little aggravated that we are all saying how awesome things are going…He feels awful, so I can see how that could get annoying.

All his numbers were good, blood-pressure, etc. Heart rate has been elevated consistent with being in pain. He did spike a fever for a bit last night, but it came right down. Nausea has been a major issue so for now he will need to keep the NG tube in.

The plan for today is to stay in the PICU for pain management. They are going to increase the amount of Dilaudid he gets when he pushes his button, as well as the amount of Ketamine. He is expected to get up to a chair today, which will be super challenging. We brought along some small Christmas gifts to help “encourage” him. If he is able to move around okay he can get the foley removed, which will please him to no end!

It will still be several days before he can take sips of water & eat anything. For right now he hurts too much to care. The LEGO site has the new comic book LEGOS up for sale early, so I plan on looking at those with him later-if that doesn’t make him smile, nothing will.

Anyway, we are looking at a frustrating day today, so please continue your prayers. Things are going so well, even if he can’t see that right now. We appreciate all the comments & messages!

Written Dec 15, 2011 2:32pm

Today was an interesting one. Medically speaking Taylor is still doing really well. It was a rough day for pain, depression, and especially nausea. We have been alternating 3 separate nausea meds, plus the patch he wears 24-7, and still haven’t really gotten control of it. Tonight got so bad that he was choking and crying trying so hard to control it.

As far as pain goes the docs have upped the Ketamine & Dilaudid, they have also added some other non-narcotic things to try and help. It’s hard to watch him like this…so unlike Taylor, but he has hurt so badly that he maybe said 30 words all day. He hasn’t slept much in the last 48 hours either, so I know that isn’t helping.

On a positive note, Taylor was able to sit up in a chair for a little over an hour. I can’t even imagine how that would feel when you are open from breast bone to pelvic bone. I think we will be in the PICU now until Friday. It is highly unlikely that they will go from increasing meds to discontinuing them in 24 hours.

Big picture is still looking great. This is just a very uncomfortable kink in the road. Thank you all so much for hanging in there with us. Taylor really enjoyed your notes of comfort & his visitors today.

Written Dec 16, 2011 12:32am

Rough night. For those with lots of hospital experience you probably already know that there seems to always be at least one night that is just plain horrendous…

Taylor was as nauseous as I have ever seen him and there just weren’t enough meds to help. He ended up vomiting up his NG tube, which is not uncommon-but definitely miserable. The NG tube used after an abdominal surgery is thick and runs down the nasal cavity to the stomach so that they may suction out secretions and help the patient to be less nauseous. With Taylor being so nauseous there is a very good chance they will have to replace the tube, not fun. For now they are trying him without.

Pain is still the biggest issue…I don’t even have words to tell you how miserable it is for him. Listening to him whimper in his sleep has NEVER gotten easier. A child is just simply not supposed to hurt like this. It does something to a mom to hear & see that, yet be totally helpless to do anything to help.

Sleep continued to evade us last night. It was well after 3am before Taylor could rest at all. It’s just after 7am now & during that time he’s had the NG ordeal and we’ve already had doctor rounds with surgery. The lack of sleep in combination with everything else has made us both, for lack of a better word, sad.

We know from experience that this will get better…that there is always a rough patch. Thank you for all your words of encouragement. When times have been the toughest and we are devoid of strength, we have always been able to muddle through on the love & prayers of friends & family. Lots of love!!!

Written Dec 16, 2011 3:18am

Even rougher morning…

Taylor’s blood pressure has dropped significantly. He is getting readings in the 78/30 neighborhood. It’s been about 2 hours now of low readings. The docs have ordered fluid boluses to try and get the bp up, they seem to be helping a bit.

He has also spiked a fever.

The combination of stats is really worrying me. Every single time his bp has gone this low he has had an infection. These infections have meant intubation and blood pressure supports. Praying that this time is different.

Written Dec 16, 2011 9:49am

It’s been a very long day, but I am happy to say that Taylor’s blood pressure is stable. It isn’t where we’d like it to be, but with many boluses of fluid and a bolus of Albumin (A protein that helps the fluid go straight to the blood) he is in a much better place than this morning.

He still has a low grade fever that we will keep an eye on and issues with pain & nausea are pretty much the same too. Taylor has made it to the chair this afternoon though and even felt up to opening his LEGO advent calendar. This is a bit of progress, so we’ll take it.

Since he has had so much problems sleeping the doctors are discussing giving him something to help him sleep tonight. I really feel like this would help. Don’t we all feel better after a good night’s sleep? He has slept maybe 8 hours total since the surgery, so I know he is exhausted.

Our hope is that tonight is uneventful. I will update in the morning unless something significant happens.

Written Dec 17, 2011 4:20am

You would have to see it to believe it. Last night was a 180 degree turn around from the night before. The doctors finally gave Taylor some Valium at bed time. This served to help his stomach muscles not to spasm, calm his nerves & racing mind, and sedate him enough to sleep. He was asleep by 11pm and slept until 6am, getting up only to use the bathroom (he requested the foley be pulled yesterday, so one more tube gone) & ask for meds.

This morning he is doing well. His blood pressure is back to normal and temp has stabilized too. He is still in a great deal of pain & vomiting. There isn’t much more they can do for him in these regards. The docs did change his pain button to a shortened length of time so that he may use it more frequently.

His stomach is starting to rumble a bit, which is a very good sign. I can’t believe he still hasn’t even asked for a drink! It will likely be Sunday before he can even have sips though, so I’m glad he isn’t wanting anything yet.

Surgery changed his dressing for the first time this morning too. As you can imagine, this was really painful. The wound itself looks amazing for just a few days out though & I am sure that he will heal so much faster than the last time. His surgery in May literally just finished healing two weeks prior to this surgery!

We would like to move out of the PICU to a private room, but will need to be a little patient as his medication doses still make it so that we need to be watched closely. Maybe some time this weekend we can move.

All-in-all the picture looks much brighter today. It never ceases to amaze me what 24 hours here can change. No matter how many times we go through it, you just can’t prepare yourself for some of it. Taylor is up in his chair sitting already and has even wanted to open his Lego advent calendars…healing is in the air!

Written Dec 17, 2011 2:50pm

Today was a long boring day, not a bad thing in the PICU. Taylor sat in the chair for a very long time, most of the day, He also took two short walks.

I feel like pain is in pretty good control or at least as good as it could be considering. Nausea has still been awful…trying aromatherapy oils and meds, not much else they could do.

Looks like we are going to encourage activity & movement over the weekend, but not change much as far as pain control. This has pluses & minuses…obviously our first priority is to have him in the least amount of pain, but it does mean we will need to stay in the ICU versus going up to a private room. Looks like Monday will be moving day now.

With everything stable I will probably switch to updating once a day unless something changes. We appreciate your continued prayers! Lots of love!

Written Dec 18, 2011 12:13pm

More of the same today. Taylor has been very steady and his recovery is truly amazing me. It is hard to believe this is the same kid as in the previous surgeries.

Taylor was in the chair all day and took several good walks. Pain seemed to be much better controlled and even nausea was a bit better.

He started one oral med and was able to do sips n’ chips (ice) today. I assume we will progress to clears tomorrow, maybe food on Monday??? He still isn’t getting a whole lot of tummy rumblings, but it has been normal for him to be a little slower for that.

We are just so pleased with how well he is doing and hopeful that we will get to be in our own home for Christmas morning.

Written Dec 19, 2011 11:59am

Another pretty boring day in the PICU. Taylor did more sitting, walking, Lego building, etc. It seemed like he held stable today, not really making a lot of progress. Still just waiting on his intestines to work.

Tomorrow we will begin to wean down the pain meds, so hopefully that goes well. Wishing you all lots of love!

Written Dec 20, 2011 3:10pm

Today has been…interesting. This morning Taylor’s Ketamine drip started to be weaned down, currently he is at half the dose he has been for the week. The plan is for it to be turned off in the morning.

This afternoon Taylor’s pain increased and it has been worse still this evening. We suspected this would happen, but it doesn’t make it any easier to watch him hurt.

We had great visits today with friends and spent most of the day building & playing with Lego. Our friend who works at Lego even brought several new sets down that we could build for display in the Park Meadows Store.

This evening Taylor has been super quiet & sleepy. I hear his pain button going nearly every eight minutes…ugh. Just as we were getting ready to call it a night we were told there is a room ready for us to move to??? Strange that we’ve been in the PICU for a week because we couldn’t go to floor with Ketamine, yet tonight they decide it is okay??? Whatever, we are happy to be getting a private room even if the timing is less than convenient.

I am hoping that this change of space also brings a new level of comfort and that Taylor’s transition off Ketamine goes well. Taylor has a long way to go pain-wise to get to a place where we can go home. Praying that this can all happen as smoothly as possible.

Written Dec 21, 2011 1:29pm

Today we had a visit from the Colorado Avalanche!!! The Av’s are truly an amazing team & they do so much for Children’s Hospital. Taylor has seen them a couple times, been in their charity fashion show, & had glass seats to games. They really reach out to the sick kids in our community and it is something else. Matt Duchene even remembered Taylor from the fashion show! Thanks Av’s for making our day so exciting!

Last night we ended up switching rooms at midnight and then again at 1am. It was crazy and led to a very short night. We are really hoping to get some quality sleep tonight now that we are settled in for the rest of our stay in room 647. Celebrating four walls & a private bathroom!!!

Today the docs were able to wean Taylor off of Ketamine and also started the first oral pain meds. He is still on his PCA and able to push the button for pain meds as of this evening. He’s still got a a ways to go before he will be able to switch to oral pain & nausea meds entirely. This is a transition that will need to be made before we can go home.

This evening we also cancelled IV nutrition & started giving him feeds through his G/J tube. We had to start really low with him being so nauseous, but hopefully putting a little food in his stomach will help us know the surgery is a success and maybe even stimulate his appetite. He has been able to eat & drink now for a few days, but the few bites he has tried have hurt too much causing him not to eat at all. Once we know for sure his body can process things right, we will be able to go home on full feeds if he still isn’t ready to eat on his own.

Each day we see a lot of progress. Everyone is anxious to get Taylor home for Christmas. I am surely ready to go home as well, but am starting to get worried about pain control. I hope we aren’t pushing him too fast. His pain team doctor recommended a slower transition, but surgery is anxious to see him get off of so much pain control because it slows down his gut…time will tell I guess.

Tonight my prayers are for sleep for both of us and a break from constant pain & nausea for Taylor. We hope this finds you all well.

Written Dec 22, 2011 12:49pm

Another very slow day of progress. Today we continued to progress to oral medications & increase feeds slowly. Pain & nausea continue to plague Taylor as expected. It gets a little worse each day as we transition meds to ones we can use at home.

Sleep has been hard to come by and we are both worn out. I know Shane is exhausted with all the back & forth too. It seems likely that Christmas will be spent at home in our jammies, sounds awesome to me. I am crossing my fingers for Friday so that we actually have a little transition time to get groceries, etc.

I continue to be amazed at the generosity of Children’s Hospital & the incredible things they do. Today all parents of inpatient kids got to go to a “Snow Pile.” There we were able to pick out several Christmas gifts and wrapping paper. I remember doing this two Christmases ago as well…They sure do know how to make holidays in the hospital seem special.

Tonight we again pray for comfort, rest, & healing. Enjoying the beautiful snow fall paint a picturesque Christmas scene out our window.

Written Dec 23, 2011 3:27pm

Well this day will go down in the books as one of the most boring days ever spent in the hospital. With over a foot of amazingly beautiful fresh snow on the ground Taylor & I spent our first ever day in the hospital without a single visitor. More than ever we both want to say thank you to everyone who has ever visited us! We didn’t even know how good we have had it. 🙂

Today he must have been showing signs of improvement because we spent a good part of the afternoon & evening working on homework. I always know it’s a good sign when I start focusing on things other than his health.

Taylor’s pain seemed better controlled with the oral meds today. He walked a bunch and visited nurses all over the hospital. We were able to get his feeds up to a rate where we can ensure decent nutrition this afternoon as well. This evening Taylor even tried a few bites of dinner and we were able to see that his intestines are in working order.

Everything seems to be lining up for a discharge tomorrow. We are very hopeful that this can happen and we will be able to spend all of Christmas Eve & Christmas Day in our own home. I am just so very thrilled with all the good progress Taylor continues to make!

Written Dec 24, 2011 4:48am

MERRY CHRISTMAS!

We just got the best gift anyone could give us…we are headed home! The next couple days we will be relaxing and enjoying the comforts of home.

Thank you for all your prayers. We love you and hope this holiday season brings you immense joy!

Written Dec 28, 2011 10:23am

It has definitely been good to be home. We enjoyed a very low key Christmas Eve, attending my favorite service of the year and going out to dinner. It seemed like such a gift just to be able to do these simple things.

Christmas was amazing. There isn’t anything in the world like seeing the light in Children’s eyes on Christmas morning. Santa was, of course, very good to us. Taylor got a bunch of Lego to build and some exciting new books to read. He was tired quickly so we laid down to rest that afternoon.

Christmas evening we met a couple good friends at the movies, though Taylor was too exhausted to see much more than the first 30 minutes. It was a bit concerning how exhausted he was and confused he was when we woke him up. He had a hard time standing and took a little fall. When we got home all his stats were okay and he seemed to know what was going on, so we just had him go to bed.

Yesterday Taylor woke up seemingly refreshed and energetic. We decided to try the movies again since that was all he really talked about doing in the hospital. He wasn’t able to sustain his energy and fell asleep again before the movie was over.

Today was much of the same, sleeping. He has been awake about two-three hours today total. This evening he has PT, so we hope that helps a little. Tomorrow we have two follow up doctor’s appointments, so he will get a thorough look over. I suspect he is needing more feeds & fluids, so we will go up on those tonight and see how things go. (He gets too nauseous to go up when awake.)

Overall we are enjoying being home. Taylor can rest better here and we are able to keep a good watch on things. He still has a week until school starts so we are planning on letting him get as much recovering done as possible.

Hope you all enjoyed your Christmas. We send you love & wishes of good health & happiness.

Written Jan 1, 2012 12:54pm

Happy New Year!

We are having a very relaxing evening, ordering pizza and hoping Taylor will want to eat. We haven’t done much since his doctor’s appointments on Wednesday. They didn’t really have a lot to add, just that he is still recovering…

Energy has still been lacking and is a bit concerning for me. He seemingly had tons more energy inpatient than he has since we’ve been home. With very few exceptions he has been pale, weak, tired, and lethargic. He also has had a couple nose bleeds, which he hasn’t had since treatment. We have stayed close to home for the most part. Tonight’s plan was to go to the movies, but he said he’s too tired…that is something he NEVER turns down! Weird too because he slept until 11am & took a 2.5 hour nap today.

Thursday night was definitely a highlight of the week. Taylor felt better than he has and we were able to celebrate Christmas with Uncle Randy & Uncle Mark. It was nice to spend time with my brothers outside of the hospital. They made Taylor’s favorite, Orange Chicken, and he ate really well too.

We have been running feeds to maintain caloric intake and fluids to help keep him hydrated. Taylor’s wound looks amazing and is healing ridiculously well. His constant companions, pain & nausea, have still been giving him the most problems. I’m sure that the meds add to his being tired.

We officially have 4 more days until school starts again. We are really hoping he is able to return right away to the previous 4 day week he was managing. Lucky for us his first week will only have 2 days and there is a long weekend soon for MLK day. Taylor is starting to get worried about his make-up work. He has done some of it, but has been too sick to get it all finished. I figure his teachers will be happier to have him in class than making himself sicker trying to get all the work complete.

Really hoping that this entry finds everyone enjoying a very safe and happy New Year’s Eve. We are praying that 2012 brings Taylor a complete and total return to health!

Written Jan 7, 2012 2:47am

It has been a rough week for both Taylor & I. I can see him shut off emotionally and watch the pain drain the sparkle from his eyes. I want to scream ENOUGH!

Things have been a little different over the past week. Taylor has gone from not being able to stay awake to not being able to sleep. It has not been uncommon to find him tossing and turning, crying in pain, still at 3am.

Yesterday we went to see Surgery. This was a routine follow-up, but thought it was as good a time as any to make sure nothing was wrong. They are very happy with the healing Taylor’s done, his wound looks so good.

Pain Team was able to squeeze us in, thank God. They feel like the increase in pain is likely due to an increase in activity levels (from the hospital anyway) and that his disrupted sleep patterns are aggravating everything. I totally agree. Last night we started a new medication to help him sleep better, with the hopes that it will be something short term until he establishes a better pattern naturally.

This should have been Taylor’s second day back to school today. Other than pain, I know Taylor’s primary source of anxiety is school. He has been working so hard to get his make-up work done, but the lack of sleep & pain makes concentration difficult at best. He had a few hours last night where he was able to focus and get quite a bit done.

Depression always gets so much worse with his sleeplessness and increasing levels of pain. He tries to act like everything is fine when everyone is around, but when we are alone he breaks down. I’m glad he can talk to me, but I wish he didn’t feel like he had to pretend so much with everyone else. The good news is that this works well at school, the “Fake it til You Make it.” Eventually he gets caught up with his friends and has some distraction from pain, etc.

Our plan for the moment is to spend the weekend getting him to sleep & his pain somewhat controlled. If this new medication helps, and it looks like it will, I hope he will be back in class Monday. Monday he also sees his psychologist, which works out perfectly. In a couple weeks we are going to try three days of five hour injections of Ketamine to help with his chronic pain. It is a big commitment, but our hope is this will enable him to miss less school in the long run and, eventually, need less narcotics. Research has shown the effects can last from 2-6 months.

As a side note, Taylor did see the ENT doctor & Audiologist. It looks like his hearing is improving. We haven’t noticed a huge change, but likely will as he returns to school, etc. This is great news. We also saw Taylor’s Optometrist over the break, no change there. Taylor’s eyes are still unable to produce a healthy amount of tears due to the chemotherapy. This just means prescription drops & ointment a few times a day, and reading glasses or a magnifying glass when his eyes get too fatigued.

Life is never dull around here. Is it weird that I pray for dull, uneventful days? Thank you so much for all the Christmas cards, gifts, prayers…I could never say enough how much you mean to us. We are carried by your love & support

Written Jan 9, 2012 1:09pm

A little better everyday… Today was better than yesterday, which was better than Friday, etc. Sleep has definitely been a key part to Taylor improving each day. The new medication that they put him on has helped get him rest he really needed (me too) and that seems to have helped put the pain management in our reach once again.

Taylor didn’t do much of anything besides rest and a few pages of homework each day on Friday & Saturday. Today he had a playdate for the second half of the Steelers/Broncos game. It was the first time in longer than I can remember that he went to someone else’s house to play without Shane or I. I know he needed that in a big way. He turns 11 years old in March and has had so little of the independence that kids his age are needing. I hope he doesn’t slide backwards with all the activity of the afternoon, but I also know that mentally this break couldn’t have come at a better time.

Tonight we are doing more homework, that he started this morning, and wallowing in sorrow at our beloved Steeler’s loss. Taylor plans to go to school tomorrow for at least a partial day…here’s hoping that goes well!

Written Jan 27, 2012 2:23pm

I will start by apologizing for the delay in entries. I wish I could say it has been because we have been living it up and were too busy. In fact, January has been a tough month. Taylor has struggled to recover his strength and energy from this most recent surgery. His pain has also been an issue. Of course this lag in progress has caused depression.

Our weeks have mainly consisted of Taylor attempting to go to as much school as possible and us spending the weekends and evenings trying to stay up with school work. We have tried to do something fun a few times a week too, like watch a special movie or build some LEGO. Taylor and I have been working on a 2000+ piece Pet Store with amazing details.

A few of you have asked how I have been feeling. Honestly the stress has caused a lot more headaches, but I am managing. I have finally had time this week to see my neurologist. I have also gotten a chance to escape to the movies some lately, my favorite break away!

On Monday Taylor had an appointment with his GI doc. We are trying a new “diet” to try and curtail some of the pain Taylor has when eating/digesting. We will now be giving Taylor 75% of his calories through his J-tube, bypassing his stomach altogether. He will be able to eat up to 500 calories a day still, they will just be limited to low fat, low fiber foods. I will be keeping a food & activity journal so that we can see if certain foods make his pain worse and if feeding straight through the intestines helps at all. As you can imagine, this isn’t the easiest to implement. I do think we can get really good information from this and think it’s worth trying anything to help with pain.

Speaking of pain…Wednesday night Taylor’s pain got severe. This is a new stabbing type of pain that comes and goes. He was up most of the night and stayed home from school today because of it. I talked to his pain team about it and they think his intestine might be telescoping and sticking. This is a frightening thought to us as our journey began with an intussusecption-the intestine telescoping, sticking, & not being able to unstick itself.

If tonight gets worse, or if he isn’t better tomorrow, I will probably take him in. I will let you know if that happens. Tonight I just ask that you include us in your prayers. I will be specifically praying for Taylor’s mental health and strength & and relief from this pain. Lots of love!

Written Jan 30, 2012 12:57pm

Just a quick update. We have managed to control Taylor’s pain this weekend at home, which is great news. Saturday afternoon he looked like he might be turning a corner, but today he has had a lot more pain and has been super tired.

Tuesday, Wednesday, & Thursday he will be receiving a Ketamine infusion for at least 5 hours each day. The hope is that this will help with pain and enable him to miss less school. We are very much praying this works.

Thank you for all your prayers & messages. Hope you had a fantastic weekend!

Written Mar 8, 2012 12:59am

Well this is a first…over a month since I’ve written!? I would love to tell you that it is because we’ve been so busy doing amazing things. Alas, I cannot lie. Frankly, I haven’t written because I’ve been so depressed that taking care of Taylor requires every ounce of energy I have. For better or worse, I also have trouble writing to all of you when I can’t put an upbeat spin on things.

February was a very tough month for Taylor and I. Taylor has had A LOT of pain, not just his old pain from his long list of past surgeries…a totally new pain. He wakes up from a dead sleep screaming. Taylor describes the feeling that his intestine, where the colostomy bag used to be, is trying to break through his skin, a stabbing pain. It comes on fast and lasts just short bursts. This new pain comes at anytime 24-7 and frequently.

We have consulted Pain Team, GI, & Surgery. First it was thought to be his gall bladder, then kidney stones, maybe a herniated intestine… Ultimately we have done a series of tests and still have no answers. We are awaiting an appointment at National Jewish with an immunologist, can you believe Children’s doesn’t have one? We know that his IGG level in his red blood cells is low at 405, normal is 685-1600. You may remember that he was getting infusions of this every 5 weeks all Fall. Our oncologist won’t give him anymore IGG until we figure out why his levels keep dropping. IGG is part of what makes the red blood cells effective at fighting infections, etc. I am frustrated because when he was getting this regularly his pain was better controlled, he had more energy, and he was able to resume school & some sense of a normal 10 year old’s life. The last dose he was given was shortly before his surgery at Christmas time. Basically he has not felt good and attended minimal school since the surgery.

As you may imagine, Taylor has been super depressed. Between the additional pain, lack of energy, and inability to resume his school schedule, he is just done. We’ve been seeing his therapist more, but she can’t work miracles. No one can convince him that this will be over someday. Who can blame him really? It does seem like we get two steps forward and take three steps back. To be honest, his depression right now concerns me as much as anything. He hasn’t wanted to play LEGO, go to the movies, even get out of bed. I bribe, beg, pray, everything I can think of to get him up and happy.

Taylor’s health and sadness has been a hard thing to watch and cope with. I feel so helpless. What kind of mother can’t help her child? Make her kid smile? That’s my job! I know that I am doing everything I can. I know that my presence makes a difference. I trust that I am a decent mom. All of that goes out the window when you haven’t slept in days and each time your eyes close your son screams in pain, his oxygen drops and the pulse ox beeps, the feed bag mysteriously clogs and beeps…My life is a series of screams, tears, and the ever present beeping. Just when things turn slightly and I am able to see a ray of sun, I open the mail and find bills I am unable to pay. Cancer Sucks! It robs your entire family of every emotional & physical resource you ever had.

Well, that’s enough whining for today. I am sorry that it has taken me this long to find motivation to write. In addition to keeping you all informed I want this journal to be accurate and current. Ten years from now I want to be able to look back at all we were able to get through. More importantly, I want Taylor to be able to see how ridiculously strong he is. Right now he can’t remember a time he wasn’t sick, someday he won’t remember all the pain he has gone through…at least that is my prayer.

Thank you so very much for your support & love. Your prayers will get us through to happier days.

Written Apr 1, 2012 9:14am

Well it looks like Spring is here to stay as well as this unseasonably warm weather. Here’s hoping that the first flowers and blossoms on the trees can pull us out of the funk we are in. I feel so badly that I didn’t post anything on Taylor’s birthday. For those who don’t know, Taylor turned 11 on March 21st. We didn’t do much for his birthday, he was feeling awful and we spent the bulk of the day at the hospital. He did want to eat the Lorax breakfast at I-Hop that he has seen on TV, so we met some friends for a late lunch and he slept the rest of the day/evening. He didn’t want a party, though told me this week that he hoped I would plan a surprise party. Ugh…failing as a mom. I really should have known that he’d like a party. Now my plan is to do an un-birthday themed birthday party in the next few months after when he feels a bit better. Better late than never, or so I’ve heard.

Taylor’s birthday brought up a lot of unexpected emotions. We have been looking at pictures lately and he can’t remember anything much from before he was sick. I know kids forget and he would’ve likely forgotten these things anyway…but can you imagine a life where you cannot remember a day without pain & sickness? I hope he someday can remember good childhood memories without all the medical stuff.

The photo above is my favorite picture of us. (Not JUST because I look leaner, younger, and stress free.) When we came to this picture Taylor said, “One thing I can remember is that we’ve always read together.” He’s right, we have always read together. I read to him in the womb and we still read together almost everyday. It is my favorite part of motherhood. When he’s older I am gonna make him call me on the phone at night to read together. 🙂

This past week was Taylor’s Spring Break. We had great plans of seeing friends, movies, doing crafts, and getting completely caught up on school work. I can tell you that very few of these plans have come to fruition. We have left the house exactly three times, once for fun. We were able to meet friends and see “The Hunger Games.” It was awesome and we loved it!(Though we still love the book more of course!) He has gotten some school work done as well. Taylor has basically been sleeping 16+ hours a day and complaining of severe pain when he is awake. We make the best of it and watch movies, TV programs, play games, and read.

Medically things are at a stand still. We’ve tried med changes, feed changes, everything for pain you can imagine…music, aromatherapy, massage, pictures, distractions, etc. On Monday we will hear whether or not our appointment with an Immunologist can be moved up any from the end of April. If not, I am tempted to take him to the ER and say figure things out because we will not keep living this way, watching him hurt.

He is on oxygen, 17hr+ feeds, ridiculous amounts of medication and once again we see a boy who is losing weight, sleeping entire days, pale skinned, and filled with pain. The doctors at Children’s have not been able to figure out what is causing him to feel like this and have recommended an immunologist at National Jewish. (Children’s doesn’t have one.) So we are taking that route. A fresh set of eyes looking at the whole picture can’t hurt.

The frustrating thing for me is that I believe I know at least partially what is wrong and the doctors won’t listen. Taylor has had one 4-5 month period where he was vastly improved. Last fall Taylor was able to go to school 75% of the time, his energy & weight were both up, and his pain was controlled for the most part except when he was super active. Now he hasn’t been able to bounce back from the reversal surgery in December. The ONLY thing that has changed is that he is not receiving the IV IgG anymore.

Our doctor says that IV IgG will not lessen pain, increase energy, etc. I get that it won’t directly affect those things. I think that indirectly it did, the proof is in the 4 months out of 3 years that he has felt good. IgG is the part of the red blood cell that helps fight off infection. Who is to say that when your body isn’t fighting off things you aren’t left behind feeling lethargic? That actually makes perfect sense. Taylor’s red count has also not fully restored to a normal range at almost two years post chemotherapy. Anyone who has ever received a unit of red blood can attest that it gives you instant energy. Taylor got it all the time on therapy and after an infusion was always the best he felt. I think it is stupid not to think that the IgG/low red counts are at least a part of the problem here.

Anyway, I have vented enough for now. I hope this catches you all up on where we are in life. Seems like things don’t change much anymore. I am so hoping that this new doctor will figure out what’s going on and give Taylor some hope & life again. I have gotten a few requests for our address & Facebook info, so here it is:

Taylor Easterberg

3110 Upham Street

Wheat Ridge, CO 80033

Facebook: Michelle Carlock

Thanks for all that you guys do to make things better. Your prayers, calls, cards, etc do not go unnoticed. We love you all and hope that this entry finds you in good health & spirits!

Written Apr 6, 2012 8:10am

I currently want to scream! I have now spoken with National Jewish. The appointment at the end of the month for Taylor to see an Immunologist, was in fact an intake appointment only. I did manage to get that appointment moved to Monday, but in all reality it looks like it will be summer before he will see an actual immunologist.

I have called his special care primary and oncology and am prepared to beg and/or trade my life for them to give him the IV IgG. I doubt I will hear anything before tomorrow, but please pray that they will do this or have some other amazing suggestion to help him.

Today he has been running a fever and has continued to have lots of pain. He has yet to return to school following Spring Break. The whole ER plan I had won’t work either. Apparently the ER at National Jewish stabilizes pediatric patients and sends them to Childrens…so now what?

Because I don’t like to end postings on a negative note and also because I can’t believe I forgot to update this last time, I will tell you about an awesome evening we had the first part of March. My brothers Mark & Randy bought Taylor tickets to see Beauty & the Beast at The Denver Center for Performing Arts. We all went out to a wonderful dinner first and were able to celebrate Taylor’s birthday a week early. Taylor was so happy & LOVED the show. So thankful for my brothers and the fact that Taylor felt well enough to go. It was especially nice because we had been very disappointed just weeks before we had to give up our tickets to see Peter Pan at the ballet because he was too sick.

I will let you guys know as soon as there is any new news. We love you & are grateful for your continued support. (Why isn’t it greatful???)

Written Apr 11, 2012 3:54pm

All my ranting and hysterical calls to Taylor’s doctors have paid off! Friday we went to see his GI doctor and he was concerned enough to run some tests. He did an x-ray of the abdomen, blood work-ups, electrolyte testing, etc.

I got a call bright and early Monday morning, which I immediately knew was cause for concern-they never call back that fast. First, Taylor’s G/J feeding tube has become dislodged. The J portion should be fairly deep into the intestine, instead it was coiled in his stomach with the end up near his esophagus. This makes sense as to why he has had so much more vomiting and nausea. It also may have been at least a partial cause for the increase in pain. He had this tube replaced & repositioned this morning.

Second, Taylor has a moderately inflamed intestine. This can be an infection, a sign that he needs a higher dose of some meds, or…a sign that a blockage is forming. The x-ray confirmed there is a problem. Tomorrow (Weds) we will be doing a barium study with a small bowel follow through. We know from past studies that the quicker his body completes the test, the better chance it is not scar tissue causing the start of a blockage. We are praying hard that it is not any form of blockage, that would likely mean surgical intervention.

In addition, Taylor also was put under today and received over 40 injections of Botox in his shoulders, neck, & head. These injections are an attempt to control his headaches, which are believed to be the result of stress & tension.

On Monday I was able to complete the intake interview for National Jewish. This will enable Taylor to get in to see a highly recommended immunologist, Dr. Gelfand. It may take several weeks, even months, but I have been told he is THE doctor in this specialty.

As you can tell, we have been very busy with all these appointments, etc. Taylor has been too sick and/or at the hospital and missed school this week. I am very hopeful that he can return at least partial time on Thursday. I am hopeful that these are all steps to better health & quality of life for Taylor. Tonight he is already saying that he feels slightly better than this morning. It has been so long since he has had any relief that this is so very welcomed…baby steps.

We hope you all had an incredible Easter. We were able to celebrate with my brothers. It was a short day for Taylor. I woke him up at 12:30 to go to dinner and he was home and asleep already by 5pm. He got very nauseous after eating and had a lot of pain, but I know he was VERY happy to see his uncles, family, and especially hunt for eggs and look through the Easter baskets he got. I know Shane & I were happy to have a delicious dinner.

I also want to take a minute to thank all my friends at Prospect Valley Elementary. I don’t even know all who were involved, but they helped out with a very generous financial donation to help with expenses, etc. Just when I don’t have a clue how we are going to get by…I am overwhelmed by the amount of support our family, friends, and people we have not even met have given us. It really is unbelievable how incredibly kind people have been to us & how moved they have been by Taylor’s story.

Well, I better get some sleep, we are due back at Children’s bright & early. I will update as soon as I have any news/results on tomorrow’s tests. As always, we thank you for your prayers, love, & support…you’re amazing!

Written Apr 12, 2012 9:00am

I am truly at a loss for words. Today’s testing shows that Taylor has a complete blockage in the small intestine. I have yet to talk to surgery, but anticipate Taylor will be going inpatient in the next 24 hours. It is almost certain that Taylor will need surgery to remove the blockage.

We are all scared of what this blockage means…could it be a tumor that is creating the blockage due to relapse. Is it the hernia that has been mentioned in passing which can cause pieces of intestine to die off due to loss of blood flow, or is it scar tissue build up? At first glance scar tissue sounds best, but if we have to re-enter every time scar tissue builds up will he be having surgery every few months forever? Will this surgery end like all his others, with an ostomy bag? Can you have repeat bags without them at some point deciding that it should be permanent? More questions right now than answers.

As you may imagine, Taylor is devastated…well, we all are. He wonders if he’s bad or if there is something he did to deserve this…it is pure torture to watch him hurt & struggle, helpless to take away his pain emotionally or physically. I am just so angry!

I will keep you all updated as to what is going on. For now we are going to try & get a little rest. We know from past experience that Taylor will need us strong and all hours of the day. We appreciate all your prayers and prayer chains. Sincerely hope that one day very soon I can write about how active Taylor is and how his pain is gone.

Written Apr 13, 2012 7:16am

Hello All,

Heather here… Michelle has asked that I do a quick update for Taylor.

Her recent Facebook update is: We will be checking into the ER momentarily. Talked to the surgeons and they want to do more imaging before a final plan is decided. At least things are moving forward now.

They are currently at the Emergency Room at Children’s. Taylor’s pain level as you can imagine has gone extremely high, and he is not doing well.

As you can see, the surgeons have decided that they want to do some more imaging and will hopefully come up with a plan very soon. I/ or Michelle will do our best to update this as we know more information.

Please pray for some REAL answers to the problems at hand. Pray for a solution that will improve the entire situation. Pray for some rest for Michelle, Shane and Taylor as they go through this tough situation.

Thank you!

Heather

Written Apr 13, 2012 11:52am

Fear…I am so scared for Taylor right now. We have been at the ER now for several hours. Taylor was immediately taken back to a trauma room, as he was fast becoming non-responsive. His blood pressure plummeted and he has been “asleep” now since we came in.

The ER docs have gotten his blood pressure stable through a series of fluid boluses and he will be transferred to the PICU some time this evening. He has had more imaging and we now know that he doesn’t have a blockage. Unfortunately our happiness at the discovery was short lived.

Our GI doctor has told us that Taylor’s intestine has quit working. I’ve never actually heard of this happening and we know very little at this point. What we do know is that he will be unable to process food. Taylor will likely be on IV nutrition for the long term. Many of you will already know that this is hard news to take. He will need to have a new central line placed (hopefully a port) and IV nutrition has lots of major drawbacks when used long term. It causes liver failure and will shut down the rest of his “gut” system.

The other likely scenario is a new ileostomy bag. With his intestines not working he will need to have a place to process stomach fluids, etc. I know he will take this really hard. At the moment I have way more questions than answers and we have no time frame for when anything will occur.

We appreciate all your prayers, calls, e-mails, etc. We know that we will need your support now as much as ever. I will update as soon as I know anything. Lots of love!

Written Apr 13, 2012 7:49pm

We are settled into the PICU tonight for what should be a brief stay before we move to GI and get a plan. Tonight, in what literally was less than a 5 minute span, Taylor went from being unresponsive with low blood pressure to a groggy but alert version of his charming self. His pressures are looking better too. It would seem, knock on wood, that tonight he will be observed and tomorrow to the floor. Great News!!!

So now I need to vent & get some things off my chest. I fully understand if you quit reading here, but I have to get this out & can’t throw things or scream. Because of Taylor’s quick turn around they are once again saying they think he got too sedated from medications. (Altered mental status, low blood pressures, etc. should not have anything to do with his bowel issues.) I don’t believe this! It does not make sense to me that a child who takes the same meds everyday can one day attend 5th grade and participate as if nothing is wrong and the next day wind up in ICU with plummeting blood pressure.

Their answer of course is that he is more dehydrated or my favorite…”it’s the perfect storm.” That is crap! If this were to have happened once I could maybe believe that, but multiple times on various levels of medication is their ego speaking. Why is it that some doctors cannot just say, I DON’T KNOW? It happens to the best of us. NO ONE knows everything!

What I DO know is that I watch Taylor’s medication, fluid intake & his output like a HAWK!!! I do not have other patients. I have not gotten complacent because I have seen sicker kids… I DO know my son. I DO know that he had no more or less medication today than he did the last two months. I DO know that I, Michelle Carlock, have been at every procedure, have cleaned up every vomiting episode, have spent countless nights awake watching my son take each breath for fear that I would watch him turn grey and stop breathing again. After that episode, after watching the life literally drain from my child, after struggling with him over every homework assignment for a year because his brain was damaged due to loss of oxygen…I am nothing if not diligent in his care.

If the doctors cannot figure out what is going on and do not even want to try one friggin dose of IV IgG to SEE if it helps, I will take him somewhere else. This is not right. I have bent over backwards dragging Taylor to and from appointment after appointment, trying this med change & that med change…all without many answers. Enough is enough.

If these medications are so dangerous, why send kids home with so much pain that they have to use them? Here’s a novel idea…why not fix the pain? Why not run tests in the two months prior that their parents have been begging you, pleading with you? Do they think we like spending hours driving back & forth waiting, getting no answers, and to top it off paying yet another co-pay each time? Don’t they take an oath to help these kids??? Uugghh!!!

Do you know I have called Taylor’s oncology doctor 5 times since spring break? I have begged and grovelled, crying, telling them that I would give my life for one lousy dose of IV IgG. Could they even have the courtesy to call back and say they stood by their initial decision not to give it to him? No. Yet here we sit, as I predicted, in the ICU via the ER at the mercy of oncology. Why do they get to make a decision about a kid that they have wanted zero to do with since he became “all better?” Remission is fantastic, I know that. But for some people it isn’t the end all and be all. I truly could care less what you label my son’s illness. Cancer, immune deficiency, whatever…I don’t claim to know how it is for everyone else, but for Taylor sick has been sick. Not being able to eat and process your food, to the point where you will be fed through your veins is pretty significant. Anyone who is still reading at this point knows that the pain Taylor has endured and his overall quality of life hasn’t changed much with the label of remission.

Do you know what I want? To be wrong. I want my 11 year old son to not need or use narcotics for crazy pain, there’s a thought. I want a chewable Flintstone vitamin to be all he knows of medication. I want Taylor to go to school more days than he is home sick…for make-up work to be a rare occasion instead of the norm.

To be fair we have some AMAZING doctors and I think we’ve had a small handful of nurses in thee years that haven’t been EXCEPTIONAL. How I wish we could clone these people and place them in each and every department we utilize.

I’m sorry, this is crazy. I don’t mean to take all this aggression out on our supporters. To be honest though, this is what we need. People are always asking what they can do. You can listen without judgment. You can cry with us, hug us, and love us even when we seem straight jacket crazy. You can bring your I-Pad along when you visit and let Taylor play Angry Birds. I know many of you feel helpless, but you do a lot. Tonight I am grateful for each and everyone of you who had the patience to read this entire entry. I am thankful that Taylor is alert and feisty. It is not merely words when I say I love each and every one of you for the dedication you put into following Taylor’s story…for supporting and praying for us everyday.

Written Apr 14, 2012 9:39am

A positive turn…

Taylor is doing well and has moved to the 8th floor to be followed by GI. I spent much of last night and today researching long term TPN, intestine transplants, immune deficiencies, etc. It is without a doubt very scary to know all the “could happens” but I find it immensely helpful in asking educated questions and not just going along with whatever doctors tell you to do.

Tonight our prayers were heard and we were given a GI doctor who REALLY listened to me. He answered my millions of questions without ever once making me feel insignificant. He agreed with our regular GI doc that we need to be very aggressive with Taylor’s bowel regimen, however, he is of the belief that we can get some idea of how well Taylor’s bowels would do on a few days or a week of IV fluid, rather than 3 months. This is a FAR safer option. For those of you who don’t know, you are not able to live long term on IV nutrition. After a short time your liver and gall bladder will fail, etc. It isn’t pretty.

So the plan we have come up with is to TRY IV nutrition for the next few days and see what it does for Taylor’s pain ,etc. They will be checking his liver functioning daily and making sure that he is tolerating things well. Meanwhile, we will be working to get Taylor on the lowest possible doses of pain meds needed to keep him comfortable. There is still a good chance we will need to go home on TPN and keep Taylor without food by mouth, but this seems like a much better plan over all.

In addition, Dr. Kramer (the new GI doc) is wanting other imaging studies to see if there is scar tissue, etc in the intestines. Because they are so long & coiled, it is often hard to tell the difference between blockage & extremely low motility.

The best part though is that he believes Taylor’s issues are all interrelated. He said there is a good chance, given how well Taylor did on IgG, that he does have an immune deficiency. He is going to try and get an immunologist here from another hospital to see Taylor before we go home. He said he wants a total picture on Taylor, which is all I ever really wanted anyone to give us.

Tonight we have a plan, someone who is listening to us, and a quiet room. I am hopeful that means a night of sleep for us both. This weekend we will be monitoring and I am doubtful there will be a large change in the course of action.

We likely still face tough choices. Do we operate to get scar tissue out, in th process creating more scar tissue? Are we left with only long-term nutrition as our answer? Will he need another Ileosotmy? Only time Will tell. I am praying for no suffering and God’s will.

Today we were given a reason to hope things will get better. We were surrounded by friends and Taylor was happy to receive an amazing gift from wonderful friends that bought a huge smile to his face. Hopefully this lucky start to the weekend will bring God’s will. I know only that I wish Taylor not suffer the way he has been. Quality vs quantity…greedy for both!

Written Apr 15, 2012 6:42pm

A huge thank you to all our visitors today! You kept both of us busy, occupied, & laughing. Taylor spent the day playing Angry Birds and building Lego. It never ceases to amaze me how fast he bounces from scary ER/PICU nights to that incredible boy who is smiling and making the best of each minute. Thank God for giving him such amazing strength & drive!

The picture on today’s entry is of him with the entire collection of new Marvel Comic Lego. Taylor saved a good deal of his Christmas gift cards and combined them with his birthday cards for these sets. I know he will enjoy building them and playing with them in anticipation of the new Avengers movie.

I am super glad we had such a good day because tonight has been a bit rougher. Taylor has blown through 3 IVs in the 48 hours we’ve been inpatient. Tonight’s goal was to get IV nutrition going, which won’t be happening. They had 3 separate nurses attempt 6 different IVs tonight all to no avail, including one in each foot. Taylor’s veins are very fragile with all the IVs and blood draws he has had. I tried to tell the docs that he needed a central line prior to the weekend, but it was determined he could make it until Monday. We will see what today brings, but the on call doc & nurses are trying to push for them to do it today. It has been 6 days now since Taylor has had any amount of food, feedings, etc. Here’s hoping we can get a line today!

Written Apr 16, 2012 12:47pm

Today was fairly relaxing. We were up very early & after such a late night, it was nice to have a calm day. Taylor played chess with some of our guests and I was able to take a much needed nap.

This morning when the doctors came around I expressed my concern over Taylor’s veins and his lack of nutrition. I really don’t want him losing any more weight and worry about dehydration since he seems so prone to it. We certainly do not need any more episodes like the one we came in through the ER with. The docs basically told me that there was no way that they were going to give Taylor a port (basically a device you can access like an IV under the skin). They wanted to go with a short term PI-CC line that is above the skin and limits activity, etc.

I strongly advocated that the port had worked well in the past and the length of time we would be using it to both the morning and afternoon teams. They finally gave in and we were supposed to go to the OR for placement at 6:30. A trauma came in and we have now been bumped until 10pm. I am happy that he will be getting the appropriate tool to make life less painful for him, and even more happy that he was not the trauma case. Praying that that surgery goes well, no one ever wants to be in emergency surgery.

We very much hope that Taylor will be able to receive nutrition tonight so that we can see how his guts do and hopefully so that he doesn’t have to feel the hunger pains. Taylor’s pain has been pretty stable and seems to be doing better with the intestinal rest. It looks like we will be going home on full nutrition and that he will be able to reduce the amount of pain suffered and pain meds needed. It will be interesting to talk to the immunologist and see what, if any, role his low blood counts could have in the overall picture.

Considering we have been in the hospital, the weekend was surprisingly good. Many wonderful friends and lots of positive baby steps. Praying tonight’s surgery goes well and that we continue to get good news and results for Taylor. Lots of Love!!!

Written Apr 17, 2012 1:11am

It was another long night, but Taylor did well & he is now the proud new owner of a port. No more pokes! It isn’t a long surgery but with recoup time & delays it was still nearly 3am when we got back to the room, 4am before we were able to sleep. I’m hoping we can both find a time to nap this afternoon.

The only somewhat new issue is an increase in pain. We have been trying to get his doses significantly decreased to help aid in the digestion process. We may have gone a bit too far, but his normal pain docs will be around today & we can get their opinion.

Praying for a slow, pain free day. Lots of love!

Written May 7, 2012 9:42am

Exhausted…isn’t there a stronger word? I feel like I am so far beyond exhausted. This has been a frustrating weekend. Last night at bed time Taylor’s port decided to be difficult. After two hours, several pump changes, and complete frustration it was finally determined that I needed to de-access the left side of Taylor’ port and re-access the right. So very glad that I learned how to do this and we escaped having to wait around for a nurse to come at midnight. Everything went smoothly with me accessing him and his TPN went in without issue after that.

This morning Taylor woke up with right side pain & weakness. He was unable to sit up, get out of bed, or take off his jammies. There were signs that he had had some sort of seizure or stroke. After a visit to the ER, we now know that they believe he had another seizure. Because of the number of questionable seizures and the physical effect of this particular one, they have now put him on Keppra. Keppra is the same seizure medication I have been on for years so we are very familiar with it.

We are now back home and hoping to get some rest. Taylor is very tired and weak this evening and our prayers are for a very uneventful, peaceful night. We could use prayers and positive messages of support right now. Lots of love!

Written May 15, 2012 3:03pm

What a week! Lots of ups and downs…why does this still surprise me? Taylor has been VERY tired, pale, & weak. He hasn’t made it to school lately, seems like staying awake was hard to do most of the week. Friday he had a fever of 101.8, almost had to take him in. It went away on its own thankfully. (Anything over 102 his blood needs to be cultured because of his port.)

Friday morning we took Shane to the airport bright and early. He’s in Mexico diving with a good friend. I talked to him tonight and he said he’s having a blast.

Taylor & I have been busy since he left. We had a graduation party to go to on Saturday for our incredibly talented friend, Ben Reitz. He got his BA and had a book published this month! We love you Ben & are grateful to have you in our lives. My dad also helped watch Taylor so I could go to a going away dinner for another friend, Stephen, who is moving away.

For Mother’s Day my brother Mark & Taylor took me to see Avengers, which was a lovely relaxing way to spend the day. Taylor wrote me a card that said, “You may not be a purfect mom, but you are a purfect mom 4 me.” Who knew he could out-do any Hallmark writer? It has also been fun sharing movie nights & game nights with friends this weekend. You guys are amazing, thank you for being there for me during this incredibly hard & lonely time. I always miss my mom so much at Mother’s Day…you all made it so much better!

Today was a rough one. I feel run over, defeated. My dad took Taylor in for his x-rays and before they were even able to get home from the hospital, our GI doctor called. Taylor’s bowel is as bad as he feared. The pills Taylor was taking had not traveled far. This means that he will be scheduled to get a third ostomy bag. It will be an ileostomy, which is the bag that leaked and wrecked his skin constantly…and it is almost positively a permanent addition. (Which he doesn’t yet know.) The surgery will be soon, this week or next. The doctors will get together and figure everything out and we should hear soon.

After the surgery they may let him have sips or trickle feeds, but they will be very minimal and he will still likely get his nutrition from the IV. It has been 40 days or more now and he lives for dessert flavors of gum. Tonight he cried more than I’ve seen in a long time. He doesn’t want an ileostomy, any ostomy, again. We prayed together and he asked God to end his pain, “even if that means I go to heaven.” How am I supposed to handle that??? I cried with him, prayed with him, and promised him that I wouldn’t “save him again” as he asked. (Referring to when I did CPR when he stopped breathing.)

Tonight I come to you again asking for prayers. Prayers for comfort and answers that don’t involve more surgery, more pain,,,

Written May 22, 2012 5:22pm

Another week, another crazy adventure. I brought Taylor into the ER early Monday afternoon with a fever that quickly escalated to 105.6. He has had blood tests, a CT of the brain, a spinal tap, x-rays, etc. As usual, nothing of note has come back and the theory as of the moment is that he has a bacterial blood infection. We are hoping that his new port is NOT the source of the infection, but may not have definitive answers for a few days.

We just got settled in the PICU where he is being monitored for low blood pressure, 85/39; fevers, still around 104.5; altered mental status, he is very confused about where he is (as of just a few hours ago) & unsteady; he is also getting massive doses of antibiotics. Our hope is that we can get him stable and moved to a regular room in a hurry. The flu season is over so kids can visit when he gets to a regular room.

I will keep you updated as I know things. For now we appreciate your support & love.

Written May 23, 2012 2:05pm

I don’t really know where to start tonight. I have surely felt every last emotion known to man today. I have cried, laughed, yelled…and slept very little.

Taylor’s fever peaked at 106.3 last night and he has now had four blood cultures come back positive for a bacterial blood infection. The theory is that Taylor likely has a Staph infection and we are very much hoping that the mega doses of antibiotics we are giving him will clear the infection without having to remove his port. We should have more blood culture results in the morning.

Today Taylor has remained up & down fever wise with doses of Tylenol & Motrin being rotated as often as possible. His blood pressure also keeps dropping only to be boosted by boluses of fluid. He is “stable” so we have moved to the floor and it is my sincere hope that nothing drastic changes overnight. He has been very sleepy and had high levels of pain.

The doctors also discovered a heart murmur for the first time today. They did an echo-cardiogram and believe that the murmur is nothing to worry about, but are watching closely to make sure that this isn’t a strange new piece to the puzzle.

Many of you have wondered what this does to Taylor’s ileostomy surgery which was supposed to take place Tuesday. Frustratingly, it will likely have to be postponed. We haven’t completely given up hope that things can still change before then, but want to be super safe about operating so soon after such a serious septic infection.

Tonight we are happy to be in a private room and have a nice shower. We are hoping that the night goes smoothly (issues with his port & needles kept us up until 5am) and peacefully. I am thankful that Taylor seems to once again be fighting hard to get better. I pray for his fevers to subside, his pain to get better, and the infection to clear without any complications.

Written May 24, 2012 1:58pm

Instead of the picture getting clearer, today it got cloudier. Taylor had a rough night. He had trouble getting to sleep, problems with his akathisia (uncontrolled movements), and de-stated to 68 percent (norm is in the 90’s) on his oxygen monitor while awake and on 3 liters of oxygen. Let’s not forget his port had issues and we had to stop all infusions and put a de-clotting medicine through. It was easily 3am again before we found sleep.

This morning Taylor’s blood-work was very concerning. His red blood count had plummeted for no apparent reason and he required a blood transfusion. Some of his other counts are concerning enough to at least question Oncology and make sure that this isn’t a sign of worse. Obviously this is upsetting & worrisome, but at this point we are ruling things out only.

Taylor had another chest x-ray, an EEG, and pulmonary was consulted today as well. To be honest I think we will have several days of worrying before we have any answers at all. These are the hardest for me. News of any kind, even bad, is something we can manage…get a plan for. Not knowing is so bloody frustrating!

With regards to Taylor’s infection, his blood pressures have remained on the low side, but on their own & without fluid boluses which is an improvement. His fevers subsided last night, but came back today. As of this moment his doesn’t have a fever and we are hoping it stays that way. His heart rate & pain have been elevated today. We aren’t able to aggressively treat the pain because of all his other issues. His entire body/skin is so sensitive that he can’t even stand to be kissed on the forehead. Hugs, kisses…touch of any kind is usually so calming & comforting to him, this is especially concerning.

Taylor’s blood cultures once again came back positive. This is not good news. We likely have one, maybe two more days, of waiting to see if antibiotics clear his infection. If they don’t, we will have to surgically remove his port, place a PICC line, wait for the infection to resolve, and surgically place the port again. If nothing else, this seems like something that really should be avoidable.

Today was such an emotional one…well the last couple have been that way. Thank you to all those who have visited and brought smiles & comfort to both Taylor & I. Taylor’s class made special cards & treats for him. You guys cannot possibly imagine how happy things like that make him. He is so sad that school will likely end without him getting to say goodbye for the summer. I know he feels so disconnected from things at times and want everyone to know just how much your efforts make a difference. We love you guys so much & couldn’t do this without you.

Written May 25, 2012 8:19am

I wanted to get this out as soon as I found out just in case it could prevent someone from coming out to the hospital and not getting to visit Taylor, he will be in an MRI this evening from 6:30 on. The MRI will help us to see if there is anything going on in the brain that could account for the drop in red blood cells and/or the neurological changes we’ve seen in the last few months.

Today we learned that Taylor is beginning to get pneumonia, not surprising with all that is going on. They will continue breathing treatments and encourage him to get up and move around.

We got good news that even though the blood cultures are still positive, they have found the exact strain of staph and will start treating it with a more specific antibiotic. The doctors have decided to leave his port in until at least Tuesday, given that the long weekend would make surgery & PICC lines a logistics nightmare. This would only change in the event that things got drastically worse than they predict.

Overall I have to say that the blood transfusion has been super good for Taylor. He is more awake, alert, and in general has more color & energy. Taylor’s pain continues to be an issue, although we have seen some baby steps of progression there as well. We don’t have many answers yet and are obviously still worried about Taylor’s blood work especially…but at least for the moment we will celebrate the fact that he is doing so much better than earlier this week.

I won’t write again until tomorrow unless we get important news. Thanks so much for your uplifting messages!

Written May 26, 2012 2:19pm

We got some results back today. The MRI & EEG both look normal which is great news! The blood cultures are STILL positive…not great news. Taylor looks better than he has in a long time so I am happy that the blood transfusion is fueling him.

We have had tons of amazing visitors filling our days and making this stay much more pleasant. Taylor is building Legos and I am working on the staff end of the year gifts for the PTA, so we are passing the time well.

Big questions still pending are 1) what is going on with Taylor’s blood work? 2) will this Staph infection clear without port removal? Both are wait and see things…ugh. I will keep you posted as we know anything. For now we are just happy to see a smiling sarcastic Taylor that we know and love. Realistically we will likely be here until mid to end of the week next week. We will then go home for about 10 days before coming back in for a week or so to get his ileostomy.

We are so very grateful for your love & support through this seemingly endless battle. Have an incredible Memorial Day weekend!

Written May 28, 2012 12:20am

First, I need to say sorry for not updating yesterday. There was literally no news & it was a very boring drab day that reminded me how very tired I was. I was just sort of in a funk. I’ve rested a bit now and I have news. Taylor’s blood cultures are still coming back positive so his port will be removed. 😦

I don’t have a time for the surgery yet, so if you are thinking of visiting today text me, call, or you can gamble. My guess is since Taylor is stable they will squeeze him in between traumas with very little notice to us. While in the OR they will place a PICC line. This is similar to a port, but the access is outside the body and lots more annoying. This will be a short term solution so that he can still get IV nutrition & antibiotics.

After surgery Taylor will need to have 2 sets of cultures come back negative at 48 hours after withdrawal. This puts us here until Thursday at least. We will go home on several more weeks of IV antibiotics, in addition to our normal stuff.

Taylor was a little quiet yesterday. I think he’s sad about missing the end of school and the chance to say goodbye, which is understandable. All his vitals are good, which is a relief. We are hoping that we can get this infection under control asap, right now he is on precautions and cannot leave the room. Hopefully soon we can get him to the playroom to play some air hockey, a favorite of his.

Hope you are all enjoying the long weekend. Lots of love!

Written May 28, 2012 11:44am

Taylor’s port was surgically removed today around lunch time. Things went well and he was able to get a PICC line that will get us through the next month or so until he can get another port placed. This afternoon he has been very sleepy from the anesthesia. It has been a quiet, fairly uneventful day overall.

Tay’s lungs are sounding much better and pneumonia is clearing. They did send another culture down and we are waiting for results on a C-Diff test. The current antibiotics are not helping the abdominal/gi pain as you can imagine. We should get results from this soon.

Looks like the at home antibiotic regimen will be IV 3x daily for 4 weeks. That sounds like a lot to add to our crazy at home schedule already, but we will both be so glad to get out of here.

Thanks for all your thoughts and prayers!

Written May 30, 2012 10:49am

The last couple of days have been so BORING! I guess that is good for day 9 of a hospital stay. Taylor has built tons of Lego & I am nearly finished with my PTA crafts. It has been a productive few days.

Taylor is improving everyday. He has had less pain & more energy each day too. We have one negative blood culture, still waiting for one more before we can go home. Looks like it could be tomorrow, which would be great. Taylor is happy that it seems he will get to say goodbye to his classmates after all.

Last night Taylor had some funky heart beats and they ended up doing an EKG. It came back mostly normal. I’m not gonna lie, it bothers me tremendously that every inpatient stay there is a question about his heart. I was taught that where there is smoke there is usually fire. We still have a few questions about blood work too. Seems they are willing to chalk everything they can’t answer or strange up to the staph infection. For the millionth time I wish I had gone to medical school.

All-in-all we are just biding our time waiting to make a break for it. Taylor is still on precautions, so he hasn’t even been outside the room since we came in except for tests. When you are saying prayers for Taylor tonight I would ask that you include my father, Terry. He had an MRI on Saturday that showed some enlarged lymph-nodes. We pray that it is nothing, but lymph-node is a dirty word at our house. Thank you for always remembering us in your prayers! We love you!

Written May 31, 2012 3:08am

Going Home!!!

We should be able to leave here shortly and go home. Ten days is too long without a decent bed. The next 24 hours are going to be busy as we get everything ready to turn in at school, get settled at home, and begin our new home schedule. I am sure IV meds won’t be an issue, even though it has been awhile since I’ve done theem. I am also hoping that I can get a few good nights of sleep.

Taylor seems like a new kid with the infection in check & the blood transfusion. We are both excited to get to say our own goodbyes at school tomorrow and see the kids & staff one more time before break. I am so thankful we are able to get out today, I know the doctors worked hard to make this happen for him.

We hope to see many of you over the next week or so before we come in for his Ileostomy surgery the week of thee12th. I may be quiet for a few days as I get caught up at home, but rest assured that no news is good news.

Taylor has several appointments coming up before surgery. Most importantly, he will see the National Jewish Immunologist. I haven’t pushed many issues on this stay simply because I really believe in my heart that we will get answers from the immunologist. Taylor has been studied by so many different teams only to come up empty handed. I have to believe that whatever is causing the funky blood work, oxygen needs, and heart concerns is all related. Time will tell. We are also still in the process of getting to Ohio to see the GI specialist.

For today though we will celebrate going home, feeling better, and the opportunity to go to school one last time before summer. It is really the little things in life that go the furthest. Thank you for all your prayers, visits, thoughts, & cards. I know that we are where we are because you’ve been standing beside us strong in prayer.

Lots of Love!!!

Written Jun 2, 2012 8:46am

The first few days at home have gone well. Taylor has been in pretty good spirits and was super excited to be able to say goodbye to everybody at school yesterday. He got his yearbook and had friends sign. It also seemed like the kids were thrilled to see him before heading into the summer months.

We came home after school for a brief rest and then went to see “Battleship.” The previews are in no way as BAD as the movie…yikes, it was awful. It was awesome that he had the energy to go see a movie after being at school for 2 hours though. Definitely a successful day!

I on the other hand am wiped. I got all the crafting I was doing done & delivered, they turned out great! I haven’t been able to sleep for any decent amount of time though. These antibiotics every 6 hours, on top of all our other stuff, are nuts. They take about an hour to infuse, so by the time I have been up an hour…well let’s just say it is hard to go back to sleep. Thus, I have been taking short naps throughout the day and not getting much done other than his care. In a couple days I am sure that we will have settled in to a routine. I’m always kind of in a fog when we first come home from the hospital anyway.

This weekend we hope to just chill out and have some fun. We are going to see some friends, take naps, and likely go see “Snow White & the Huntsman.” I want him to get some real living done before we go back inpatient. I know it will take awhile to get used to the ostomy again as well, so this is really the best time to indulge.

We hope you have a fantastic weekend! As always, we love you & appreciate your prayers and support!

Written Jun 6, 2012 11:43pm

We have settled into home now. Taylor had a pretty good weekend, even played miniature golf with Uncle Mark & Randy. He was so happy to be up playing around, spending time away from us, and hanging with two of his favorite guys.Taylor also got to play a coma victim in a friends movie that is being filmed. He had been taking acting classes before he got cancer & loves “hamming it up.” Tay was thrilled to be involved in a real movie. Overall, it has been pretty low key around here.

I have been so tired. Getting up for the antibiotics is proving to be tougher than I thought it would be, well not the getting up part really-the getting back to sleep after the infusion. Thus, there have been a lot of naps for the both of us.

Last night his pain started getting much higher again, it’s been in great control since we’ve gotten home. It was so bad that he opted to lay down and take meds & a nap instead of going to the Lego build! That doesn’t happen often. It was a rough night with him having so much pain and waking up so much. He didn’t get a lot of sleep & I got maybe two hours total in 20 minute increments. So we are going to go back to sleep this morning for awhile in hopes of getting his pain down.

I have some prayer requests for you guys. They still don’t know what is going on with my dad, so please remember him. Also, a friend & classmate of Taylor’s, Kati, has been diagnosed with Lymphoma in addition to her fight with A-T. Please pray for her & her family, those first weeks are some of the hardest. We did get to visit them Monday when Taylor had his check-up. Kati seemed in good spirits and we got a nice chat in. Two other friends we have met along our journey have relapsed, please pray for Zerrian & Sinjin and their families as they face their battle for the second time. I will add their links on my next entry for those who want to drop an encouraging note or follow their progress.

Well we have a lot of plans this week to see friends before Taylor’s surgery on the 19th. It will be a two week stay, possibly 3 weeks. Praying that we get his pain under control and he is still able to have some fun prior to going back inpatient.

Hoping you are all having an awesome start to the summer. Remember the we love you & are so grateful for your support!

Written Jun 13, 2012 5:15pm

Anxiety…tonight I am filled with it. In twelve hours we meet with Taylor’s new immunologist. It seems that we have been waiting forever for this appointment & the answers we hope it will provide. Now the time is here and I am so nervous to hear what they have to say. I am so very hopeful that they can shed some light on Taylor’s overall health.

This week has been a good one. Taylor has had ups & downs as always, but we’ve managed to stay away from the hospital and used minimal medication to control pain. Taylor & I have both had a chance to visit with lots of friends and have some fun in preparation of his surgery next week. Shane was able to get away for the weekend and participate in a golf tournament in Kansas.

Best of all, our AMAZING home-care pharmacist, Susan, was able to change Taylor’s antibiotics to a continuous pump. This meant that I have been able to transition from dosing meds every 6 hours & getting up in the middle of the night (even more than usual), to hooking him up to his antibiotic at the same time I do his nutrition once a day. We are both so much more rested and less cranky…Susan, you ROCK!

We still don’t know what is going on with my dad, or why he has these enlarged lymph-nodes. He has had an MRI & CT that have not helped provide us with answers. Tomorrow he goes in for some blood work, maybe we can get some answers from these results. Thank you for keeping him in your prayers.

Our friend Elizabeth is back in the hospital with kidney stones. Poor thing, she has had these so many times since treatment. If you want to drop her a note, here is her site.

http://www.caringbridge.org/visit/elizabethbluenorton/journal

I promised I would add the links for our friends that have relapsed. Here they are. Any support you can give them is great. I cannot imagine how scary it is to face cancer a second time, but I know these boys are crazy strong.

http://www.caringbridge.org/visit/sinjinandrukates/journal

http://www.caringbridge.org/visit/zerrianstone/journal

I also told you about a little girl that goes to school with Taylor, Kati. She has been diagnosed with B-Cell Lymphoma and has just completed her first chemo round. I know she & her family can use all the prayers & support they can get. Here is a link to her site.

http://www.caringbridge.org/visit/kaitlynleasure/journal

It is so unfair that these kids have to go through any of this. Thank you for supporting our friends and for supporting us as we continue this journey. Never doubt that we could not do this without you guys & we love you all so very much.

Written Jun 19, 2012 5:44pm

This is going to be a long entry and may at times seem to be written by multiple people, I assure you that it is just me going through all the emotional phases known to man. Over the last week I have been known to break down into fits of laughter or tears, sometimes both, at the drop of a hat. I will try to catch you up.

Many of you have been wondering what happened at the immunologist. I am sorry for the delay in getting information out. My computer decided to have a melt down, thus so did I, as I was trying to update after our visit. Thanks to a wonderful new friend, it is working again and didn’t cost a dime to get it to that point. In all honesty, there isn’t as much to tell about that visit as I hoped there would be.

Dr. Gelfand is our new immunologist at National Jewish. He seems to be a lovely guy and promises a slew of answers in the future. For the moment we discussed that Taylor does indeed have immunogammugobulinemia…not gonna promise to EVER spell that right. Essentially it means that his IgG levels are low. They do not have a good reason for why his are low, possibly chemo or treatment, but think that he is losing them. The tests they have run show that Taylor’s body mounts a response to vaccinations like it should, but that the gammo globulins diminish without reason. They have checked to see if he is losing them from urine or stool, the two most common places, to no avail. Dr. Gelfand thinks that he may be losing them somewhere along the GI tract. He doesn’t know why this would happen, but I agree that this seems to be the logical place given his history of GI issues.

The best news we received, however, is that Dr. Gelfand doesn’t really care why Taylor needs the IV IgG. He said that given Taylor’s blood counts and most especially the therapeutic response Tay had to the IV IgG, he thinks that we should be giving his infusions once a month for a minimum of a year. This is music to my ears because Taylor did so very well with the infusions, attending nearly 75% of school when he was on them and staying completely away from inpatient hospital stays. Better news, he pushed them to do the infusion before surgery and Taylor was able to get it today!!! If anything can aid in the healing process, I truly believe this is it.

While we were at National Jewish they also did a series of skin allergies and some breathing tests. It very much concerned our new doctors that Tay is on 24-7 oxygen with little explanation as to why. Obviously I agree and have given them permission to take over Taylor’s primary pulmonary needs. They already made changes to his asthma medication that has improved his breathing by 16% on one test! National Jewish is ranked very high in respiratory care, so why not see what a fresh set of eyes can do. They want to redo all Taylor’s previous pulmonary functions tests, etc as soon as Taylor is able to following surgery.

National Jewish also brought up a bubble saline test they would like to do for his heart, repeating sleep studies, etc. I am super hopeful that a fresh set or sets of eyes will give us some answers & hopefully some progress can be made in Tay’s health. I am, however, not anxious to repeat tests & have more hospital visits. I have seen a drastic change in Taylor with regards to hospitals lately. He gets so frustrated that he “checks out.” What I mean by this is that he is so over being “listened to”, poked, prodded, etc. that he gets very quiet, borderline rude-which is so unlike him. Lately I have noticed him become withdrawn even on the drive to the hospital and he does little more than answer direct questions he is presented with. If you haven’t spent much time around hospitals, say a prayer of thanks right this very minute.

Summers have been tough the past few years. While Taylor’s friends are swimming everyday (the thing he wants to do most in the world) and taking vacations, he is heading to appointment after appointment. When a very lovely person innocently asks to buy him an ice cream cone, he must say no thank you as he has now endured 11 weeks without eating or drinking anything without an end in sight. It truly is the smallest thing that causes either Taylor or I to cry these days. Of course we want to hear all that our friends are doing and want so much for them to have amazing summers, but envy is a hard pill to swallow.

Many fun things have happened the past few days too. Taylor was able to get together with Destiny, a friend that moved away and he misses dearly. We have seen movies, family, friends, and Taylor even talked me into taking him to Comic Con. If you haven’t heard of this, you are not alone. My adorably geeky, comic book loving son talked me into going to a convention for other geeky, slightly less adorable, comic book loving people. He was in seventh heaven and was able to meet & get his picture taken with James Marsters or Brainiac from Smallville. I will admit to being “a little” star struck myself when we met Kristen Bauer, a favorite of mine from True Blood. I will post pictures soon-promise. The best part of the day was that Taylor & I were able to laugh, get in some of the best people watching ever, and spend the day just bonding. It is easier said than done to escape medical realities while in a wheel chair, attached to IV nutrition, lugging around oxygen bottles, all while smelling popcorn & cotton candy you are forbidden from having, but we did it!!!

I have also spent a lot of time preparing to move. Taylor & I have found a lovely place close to school that is more affordable. It sort of fell into our laps at a time when I have been most worried and prayerful. It is sad to say goodbye to home that we’ve lived in for 7 years and has been the place where so many things, good & bad, have happened. We don’t have an official move date yet since we don’t know how long this next surgery stay will be, but are hopeful that we can make everything happen by August first. I think Shane has found a place a few blocks away, just waiting on final confirmation…I know we will all be overjoyed to get the move over and resume life without boxes underfoot. We are planning on doing a large garage sale, probably in August, to purge the stuff we don’t need at either house. On that note, if you come across things this summer that you are wanting to part with, we are glad to take them off your hands. It is our hope to use a community garage sale to fund the trip to Ohio so that Taylor can see a GI specialist. Thank you in advance for anything you can donate for the sale.

So this brings us to today. Taylor will be having a new ileostomy placed at 12:30. Thankfully, he will also be getting a new port as we both HATE the PICC line. This surgery is ripe with emotions. No parent ever wants to see their child endure surgery. It doesn’t make much sense, but for me planned surgeries are harder. I am great in crisis mode, not so much in wait & see mode.

Taylor is extremely worried. If you don’t have knowledge of ostomy bags, etc, thank God right now for the fact that your intestines work. I can honestly say that I never gave a seconds thought to how my intestines worked before Taylor’s cancer diagnosis…how is that possible? We take for granted the very things we need the most. Taylor will get his third ostomy in a few hours. He knows by now that it means finding “family” bathrooms, leaks, painful skin deterioration, and less independence at a time when he craves it most. I know several people who have lived their lives with an ostomy and I know that Taylor will persevere as they have…I don’t have to like it. Taylor does not know, and you may disagree with me on this, that this ileostomy is likely permanent. I am a firm believer that our attitudes can make a huge difference in our healing abilities. Taylor knows that this bag will be for a longer period of time, but I do not want him to lose hope of once again being without it. Everyone is very different, but for Tay the ostomy(s) has been the most challenging, at least emotionally.

The surgery itself has been a hard conclusion to come to. Our GI doctor & surgeon both have serious doubts that this will enable Taylor to resume eating. In fact, I am praying for the surgery to enable us to resume even a minimal amount of g-tube feedings. I swore that we would not “gamble” with Taylor’s health, but that feels a great deal like what we are doing. Both doctors used the term 50-50 when describing the odds of Taylor eating again. What we know to be fact is that most people can not live on IV nutrition alone long term. When we stop using the body as it is designed the organs, typically the liver & gallbladder, are likely to fail. This surgery is Taylor’s best chance to be able to eat on his own. Even if we can trickle small amounts of formula through his g-tube it is a success. We are also hoping that taking some of the pressure off the intestine to process things will help control some of his pain. What the next few weeks may bring we don’t know, but we do know that we will do whatever it takes to get Taylor into the GI specialty hospital in Ohio. I pray that they have the answers we’ve been waiting for.

I am going to try and rest for awhile. It is anticipated that Taylor will have a PICU stay following the surgery, remember that children under 13 cannot visit in the PICU. We have been given a range of 2-3 weeks for the anticipated duration of this stay. We welcome any & all visitors and I will update both Facebook & Caringbridge as I have information. Thank you so much for your prayers & love!

Written Jun 20, 2012 10:51am

Quick update, surgery got started late and Taylor is still in the OR. He has been back for four hours now. He is doing well and so far they haven’t had to open his entire abdomen. Tay got a new power port, which is what we hoped for. It has been a long day of waiting, but I will update when he is out of surgery.

Sent from CaringBridge iPhone app

Written Jun 20, 2012 1:52pm

We are finally settled into the PICU after what seemed like the longest day in history. Taylor’s surgery was pushed back a couple hours and then things took longer than they hoped. Good news is that the surgeon did not have to open his entire abdominal wound. Taylor’s surgeon was able to cut away adhesions and push through four inch incisions, in addition to the actual stoma that was placed, which is the best we could have hoped for.

Tonight Taylor remains intubated which is bittersweet. He was so talkative this morning and it was clear the IgG he was given yesterday had given him a boost, now this extreme quiet seems…well, extreme. I am happy though that at this moment they have his pain controlled & he is able to rest. He is on ketamine & fentanyl drips which may keep him in the PICU for a little while. As he wakes up and they extubate him they will add other meds, primarily a Dilaudid pain button (PCA) that he can control.

Taylor’s blood counts were low today & that coupled with blood loss due to surgery meant another transfusion. They are running more blood work now and may need to do another transfusion through the night to get him back up to speed. Frankly, I hope that he is out for rest of the evening. If he can sleep through this initial intubation period & let his body have a few hours to rest I think that would be great.

I will update on things as I know what is going on. Thank you so much for all your support today & always.

Written Jun 20, 2012 10:48pm

I really don’t want to jinx anything, and I know that pain control will be a struggle in the next few days/weeks, but last night went far better than I suspected it might. Everyone was content to let Taylor start waking up with the intubation tube in and this morning about 6 am he woke up & very calmly gestured to remove the tube. They extubated him about 10 minutes later and he is stating around 90-92 percent on his regular 1 liter of oxygen.

After an intubation tube is pulled Taylor often won’t speak for a few days and is complaining of a sore throat. He has a little of that going on today too, but overall is upbeat. His first question was where is my pain button…it is here now & being set up as I type. Second comment was, “Since I don’t have my button can I at least play my DS as a distraction?” Needless to say he is playing now. Yesterday, as luck would have it, a new Lego Batman video game came out and we were able to stop and buy it on the way in…distraction is working better than ever this morning.

A few other things to fill you in on…Around 4am Taylor spiked a fever & is now on antibiotics once again & Tylenol. His blood work is spotty and platelets are low so they won’t be using ibuprofen. Taylor will likely require another transfusion in the next day or so, but as of this moment is sitting just a smidgen higher than what they like to transfuse at. Blood pressures have been somewhat low & heart rate is elevated, both expected results given his pain level & drug use.

It depends who you ask & when you ask what answer you get, but as of now Taylor will stay in the PICU because of his drips and pain management. Nothing would surprise me with this & I am sure we will hear something completely different within the hour. For the moment the PICU seems as good a place as any.

Here is hoping the entire stay progresses as it has thus far. Taylor is expected to get to a recliner today, never an easy feat those first few days after surgery. We brought some nice incentives though! Have a great day!

Written Jun 21, 2012 11:16am

Wow! This is an incredible day. We have easily seen more progress in Taylor in the last 12 hours than in any previous hospital stay. Taylor was extubated without problem & was on a pain button (PCA) shortly thereafter. They increased his pain dose three times and finally he was able to rest from about 1-3pm this afternoon.

At 3pm Taylor moved to the recliner where he is still sitting. He has been reading his new comics, playing Lego Batman on DS, and in general being his chatty self. I really can’t believe this, but he was able to circle the entire PICU floor as well. It usually takes a couple days in the chair before he is able to walk much, this was truly inspiring.

There were some issues early with him destating and his oxygen levels being low, but those seem to be much improved. Taylor has run a fever on & off all day, but it has been controlled with Tylenol & without it getting crazy high like it has in the past. They did do blood cultures just to be safe & also to make sure that he isn’t having an issue with the infection he just got over. Heart rate & blood pressures are still off, indicative of the pain increase. Overall this picture looks very different from where we feared we would be this week.

As of right this moment we are being told that he cannot go to the floor with Ketamine and thus needs to be in the PICU. They also started another medication that they want to keep a close eye on. I certainly don’t want to insinuate that his pain is not high, it clearly is, just am so thankful that after so many surgeries we seem to know exactly where to be to keep him comfortable. It may sound horrible, but I just keep waiting for this to get really hard. He inevitably will have to come down off the pain meds, I am just hopeful that we wean slowly & allow him to heal as much as possible without any set backs.

We would love to see anyone who is interested in coming down. PICU rules allow any healthy person, 13 years & older, to come between 9am-6:45pm & 7:45pm on. If you are in the room by 6:45pm you can stay, they just can’t have anyone walking around the unit during that hour long shift change. Thank you so much for all your kind words & prayers!

Written Jun 22, 2012 12:12am

It never ceases to amaze me just how insane the PICU can get & in a hurry! Just before shift change last night they moved us across the hall so that we could share a nurse since Taylor was doing so well. We had no sooner moved than the kiddo we were partnered with took a downward spiral and needed crazy amounts of staff. Around 11pm they ended up moving us into the exact same room we had come from, inconvenient but unavoidable.

I cannot explain to you the emotional turmoil that comes with events like this. My first thought is of course we will move, thank God it isn’t us trending downward. That is almost immediately replaced with thoughts like, did I really just say that? Does that mean I want the other child to be sick? It isn’t rational at all, but every parent I know who has been through this has had those moments…almost like a survivor’s guilt.

For me, last night took me back to a dark place. It was strangely reminiscent of Christmas 2009 when Taylor WAS the emergency case. That Christmas everyone had their doubts that Taylor would be able to pull through. This was also the stay when Taylor got his first ileostomy, the same thing he had repeated this week. I had a hard time getting to sleep last night, needless to say.

Taylor had a few struggles of his own last night. His fever got higher, 103. Not as bad as some of his prior fevers, and likely just a result of the surgery & stress to the body, but not headed the direction we would hope for either. He has been able to stay around 100-101 with Tylenol, so for now we will just keep an eye on it and pray that nothing is causing the fever.

Yesterday afternoon they took Taylor’s catheter out and nearly 10 hours later he still had not urinated. Considering the amounts of fluid he is getting, this isn’t great. They did a bladder scan and determined he was holding onto more than 500ml. Just as we were about to place a new Foley, Taylor was able to go. I pray that he isn’t getting too dehydrated & that we won’t have to put the Foley back in. He doesn’t need an extra source of infection risk.

Around 4am Taylor’s pain spiked again. We were able to get it back under control with several clinician boluses. (A large dose that nurses can give.) It is always a benefit to have the PCA button you can push for immediate relief, but hard to manage pain when they finally are able to rest and thus aren’t pushing the button. It seems like we often are chasing our tail for awhile in the morning.

I spoke with the surgeon this morning who expressed a couple potential reasons for concern. Apparently Taylor’s new ileostomy isn’t as “strong” as his previous ostomy. Though I had never thought of this before, abdominal muscle very much aids in keeping a stoma (the part of the intestine that rises above the skin) in place. Taylor’s initial muscle tone was great since he had previously been swimming 6 days a week. The second stoma, slightly weaker. Now his abdomen has little to no muscle tone so there is a greater risk that the intestine will “break out” or retract inward. This isn’t happening right now, and may never happen, but it is a concern that the surgeon wanted us to be aware of, as it happens quickly & is life threatening.

We also talked to GI and discussed the eating/feeding scenario. Their belief, & I tend to agree even if I don’t like it, is that we should NOT try to feed either via mouth or g/j tube until Taylor is back to a pain/activity baseline he was prior to the surgery. Their fear is that we would cause more pain by starting too early and while the bowel is still working so hard to heal. Makes sense. If he had extreme pain with eating how would we know whether it was as a result of the surgery or the act of feeding through the gut. Taylor is less than thrilled to hear it could be a month or so before we try any type of nutrition other than IV.

I want to reiterate that things are progressing well. Each stay, surgery, procedure, etc brings us one more baby step closer…even if it doesn’t seem so.

Just need to quick vent about one thing before I get on with the day. So this morning a surgical resident came in about 6 am and told Taylor he thought he would be able to eat today. What? What kind of doctor says that off the cuff to a kid who hasn’t eaten in three months. It is a learning hospital & I intend to teach him a lesson in making promises he can’t keep! This may not seem like a big deal, but I am very protective of giving Taylor any more emotional distress than he already has. I keep thinking about how I have spent my entire life dieting unsuccessfully. We all know how hard it can be to say no to that yummy looking cupcake…can you imagine a glass of water being a temptation?

Anyway, you can’t change the past & I am grateful that Taylor’s doing well. A few tears over an insensitive resident’s comment will not be the worst thing Taylor will endure. It is nice to get out the frustration & release it to the world. We are now hoping & praying for another really good day. The pain plan is to keep him as active as yesterday and make no changes with regards to med dosing etc. There has been great debate over whether or not we could move up to a normal surgical room on the current medications & doses. It wouldn’t surprise me if we move up today or wait several days until his meds are no longer needed. Today our goal is to keep going with the flow.

Written Jun 22, 2012 1:47pm

So we are in a private room, thank God for small things! I have been a very cranky witch today and am thrilled we will be out of the lights, noise, & stress of the ICU. The best part of being on the floor is that Taylor can now have kid visitors so long as they are healthy. I think having friends to encourage walks or trips to the play room will help tremendously.

Today was not as smooth as the last few. They went up on the PCA dose and the Ketamine, but pain has still been bad today. After another surgery you always expect pain to be bad, but nothing emotionally prepares you to see your child hurting no matter how many times you’ve been through it.

Taylor sat in the chair today and took one walk. He again spiked fevers and they are doing blood cultures every 24 hours. He was way more quiet than usual, pain does that to him. Hoping to see friends tomorrow and maybe build some Lego. Shane’s boss got Taylor the Lego VW Van and it is calling out for us to build. Not sure who is more excited about the set, I mean it is a hippie wagon!

While Taylor took a nap this afternoon I was able to get down to Oncology and visit with our friend Kati & her mom. It reminded me a little of when Elizabeth & Taylor used to be inpatient together. It is always so nice to talk with another parent that has been through things. (Carla, I don’t think I could have made it through treatment without our daily breakfasts. You kept me sane & crying together was always better than alone.) Kati seemed in good spirits with her sassy bright pink hair. Taylor was very jealous that I got to see Kati and he didn’t.

We are praying hard for a peaceful rest tonight. Thank you for all your love, we feel surrounded by your prayers!

Written Jun 23, 2012 2:57am

It was a better night. Taylor & I were both able to sleep a little better, not nearly enough but better. He has been very restless and his pain has been up & down. Our goal for today will be to try and even out meds so that there aren’t so many highs & lows. We will also need to increase Taylor’s activity level with more walks.

We have now had our first ostomy leaks…ugh. This has made anxiety sky rocket and added lots of tears. These are some of the times where I feel least able to help Tay. I guess it is best sometimes to just admit things suck & cry WITH him instead of trying to always make things better.

I promised to add pictures from Comic Con, so I hope you enjoy the few I was able to add. There are a couple more I need my scanner for, but man this pic with him in Thor’s helmet makes me happy!

Enjoy your day and know that we are full of love for you all!

Written Jun 23, 2012 1:35pm

It was a relatively quiet day today. We enjoyed lots of visitors, including Taylor’s friend Emma who is in this picture. It was nice to have friends here to break up the monotony of the day. Tay took two walks, both when he had company to impress. 🙂

Taylor’s pain remained the key issue today. We started weaning him down off the Ketamine now, but ramped up his pain patches. The goal will be to take off the Ketamine drip tomorrow. He has still been pushing his PCA button fervently. Nausea was also a frustrating companion today. Taylor has been interchanging 4 antiemetics and is still struggling with it.

Thankfully we haven’t had anymore ostomy leaks. He did spike a fever again tonight and once again we’ve given him Tylenol. I can’t stand the fevers, they make everything else much worse. Still praying these fevers aren’t anything to worry about and that they will be gone for good soon.

Praying for a peaceful, reduced pain weekend. Sweet Dreams!

Written Jun 24, 2012 2:52pm

Today was more of the same. Taylor was really frustrated and cranky, though I am guessing not as much as I would be if I hurt the way he does. It took many reminders to use our manners & lots of patience to get through the day.

We fiddled around more with pain meds today & took the Ketamine completely off. His pain patch is now 4x what it was when we came in and over the next day or two I am sure they will want to discontinue the PCA. I am hoping I can talk them into going down of the rate & frequency before we lose that altogether. The day the PCA goes away is ALWAYS rough. Taylor has very clearly let us know that the button is the only time he has any control over pain in his life & it is a hard step.

We had some wonderful friends come up & visit with us to help the day pass quicker. Taylor also sat up & built Lego as he could. We are having a hard time finding the balance between too much pain & too much sleepiness. He spent a lot of the day just trying to stay awake. I am super proud that he was able to walk all the way down stairs to the gift shop! He looked pale, weak, & very tired after walking down so we wheeled him up in a chair. What an attempt though!!!

Thanks to the Reitz family I was able to get my car fixed (104 degree weather is NOT when you want to be without a/c) while we have been inpatient. With their help I left the guys for a bit and went out to look at a bed for Taylor’s new superhero bedroom. It is nice to have my own car here too in case we get to break free from this joint any time soon.

Speaking of getting out…I don’t want to jinx it, but it is looking like the anticipated 2-3 weeks we were supposed to be inpatient may be significantly shorter. We haven’t been fever free yet for 24 hours, but he is working on it. We will also need to have better pain control, but I am thinking mid week maybe. Tay would be thrilled if we were out in time to see the Spiderman movie at the midnight showing, he really thinks that is a treat! Hey, it’s the little things right?

Well, I need to try & rest tonight as well. Hoping for the playroom tomorrow! Have a fantastic weekend!

Hey, before I forget…CaringBridge has this new feature (honestly I don’t know when it started, maybe I have just been blind to it) that lets you leave hearts much like you would leave a “like” on Facebook. I LOVE this! What a great way to let people know you are checking in on them & sending loves/prayers even when you cannot think of anything to say. I thought I would write about this because I often visit other kid’s sites and find myself just wanting to send a hug. If you are the same way & cannot find the right words, leave Taylor a heart at the bottom of the journal entries…he would like that!

Written Jun 25, 2012 9:50am

Ugh! Today is a rough one. Pain has been high & nausea even higher. Taylor’s oxygen needs have doubled and he is very pale & weak. His red counts are low, but not transfusion low-just low enough to decrease energy & add to the sleepiness.

The main issue however is that Taylor has had zero ostomy output since last night. We have now vented his g-tube to gravity and it is puring out a forest green substance. If you have not ever had any sort of intestinal blockages you may not know that green is BAD. This in combination with the lack of output causes them to think that something is blocking the ostomy. The plan for the moment is to do a roto-rooter type “fix”. This sounds awful, but they say it isn’t too bad. If we can get the intestines to flow right theoretically they can stop backing up in the stomach & should reduce nausea, and thus pain.

I am guessing that this could be a long night. I am praying with my whole heart that this can be fixed easy without surgical intervention. I cannot lie & say I’m not worried though. Anything intestinal just scares the life out of me.

On a good note, Taylor is thrilled that he got so many hearts today! I knew that he would be happy to hear about & feel all your love.

Written Jun 26, 2012 12:54pm

First, I am so sorry that this message has taken so long to get to you. Things have been a little chaotic around here. Taylor is in the exact same spot that he was at this time yesterday I am sorry to report.

Last night the plan was to roto-rooter. That quickly became a “watch & see” approach, ugh. Basically Taylor’s g-tube in his stomach is being “vented” to gravity. They place a baby bottle on the end and allow gravity to pull out contents to help ease nausea. Tay has been using round the clock nausea meds and has not had very good luck. The worst part of all the nausea is that it increases the pain, more pain meds = more nausea…we are chasing our tail. Today they pretty much kept pain medications the same, not wanting to cause more nausea. It was great to see him more alert today & awake a lot more than yesterday.

One thing that has been tossed around a lot earlier today & this evening is the term “bile leak.” I am not familiar with this term and am waiting to talk to the surgery team about this. I did do a little glancing at WebMD, but try not to take much to heart until I have the facts. All these intestinal questions have us all on high alert, as you can imagine. One thing we know for sure is that Taylor’s ostomy is not flowing as it was the days following surgery & the two previous times he has had ostomys. Tonight I guess it is more of my favorite “wait & see.”

I need to issue HUGE thank yous to my dear friend Heather, my brother Mark, &, of course, Shane. Between the three of them Taylor was not without an advocate today as I had to leave the hospital for a doctor’s visit myself. Thank you all for helping to make my time away a smooth one.

Tonight I am massively overwhelmed with emotion. We had so many amazing visitors today that came and helped Taylor pass the time or stopped by to give us hugs of support. Tomorrow we should get some information about this “bile leak” I would hope, but the waiting is making us all edgy. Tomorrow we hope to hear the results of my father’s PET Scan as well. So many “up in the airs.” As you know, I am an admitted control freak & have the most anxiety when I feel so helpless.

It has been a rough week for so many…our friend Kati is losing her hair after her first few chemos, so many of you know first hand how rough that can be-and on a little girl no less. Tonight when I look around I see other Oncology families going through hell, a police officer’s kids & family going to sleep missing their mother because of senseless violence…I pray for those families who have lost their homes in these crazy wildfires we are having & the fire fighters who risk their lives to try and keep the rest of us safe, just to name a few.

It is easy to see so many in need of prayer tonight. As we get ready for bed tonight we will hold a special cross that was given to Taylor a few weeks ago and give prayers of gratitude that, although frustrated, we are in a safe place. Thank you all so much for helping in anyway you possibly can. Thank you for your love & the “hearts” on this page that let us feel your love so readily. Thank you God for the blessings you’ve given us. We love you all!!!

Written Jun 27, 2012 1:43pm

It has been hard to find words tonight to talk about our family when so many are fleeing their homes for safety all around Colorado. It is frightening to look at the maps of all these wildfires, our beautiful state looks aglow. Please pray for all those working hard to prevent and contain the fires tonight, the families who have lost or fear they are losing their homes, those who have been displaced…so very sad.

Today we spent a lot of time thinking about how precious life is and how it can turn of a dime without warning. Today Taylor & I did our best to get out of the room & “live a little.” He talked me into a game of Life and played air hockey with Shane, little things that in the scheme of things seem pretty significant right now.

Taylor’s pain remained steady today and they weaned him down a little. I think that tomorrow they will really want him to try orals & discontinue the PCA button. I am not too worried about this step, it seems like things have gone slow & steady towards this over the past couple days.

Tonight my main concerns remain this awful nausea that has him gagging with the slightest movement and the ostomy drainage or lack there of. It was implied today that the surgery may not have done much to help things along GI-wise. We knew there was a risk that it would all be for not, but I hope & pray that it is just time his system needs. We hope to see GI tomorrow and get their thoughts. We did learn that there is not a Bile Leak!

Taylor’s blood work has once again dropped below where you would expect him to be off therapy. Our doctor thinks it is possible he has Chronic Illness Anemia. This would seem realistic given the fact that he was just transfused last week & he’s once again low. This is usually a disease in elderly people, but Tay’s chronic issues leave him susceptible. Hematology will be consulted on this.

Taylor very much enjoyed seeing some Prospect Valley teachers today, as did I. We are just plain lucky to have such amazing school support. God has blessed us with incredible teachers that have encouraged Taylor to thrive & spent many hours of their own free time visiting & prepping for Taylor’s needs. He is really looking forward to 6th grade next year.

As I say goodnight I am very aware of so much tragedy tonight in Colorado…we are filled with prayer.

Written Jun 28, 2012 11:04pm

I want to apologize for not writing last night. I was so worn out, everything slowed down early, & we had a nurse I very much trust, so I decided to attempt to get a good night’s sleep. All things considered (you know, like being in a hospital room)…I did!

I want to start off with this amazing blessing I was given yesterday. Taylor & I were in the playroom with friends when we met one of the most incredible women. Her name is Fifi and she is 87. She is the volunteer in the playroom Wednesday mornings on the 8th floor. I soon found out that she shifts to the 9th floor playroom after a lunch break. She also delivers Meals-on-Wheels one day a week. Oh, and spends one day a week doing church ministry work for her church volunteering time & resources to needy families in the area. Did you read the part about her being 87? Well, the ironic part is that I have been missing my grandma so much lately. Those of you who are on Facebook with me have probably seen me writing about her this hospitalization. It is usually my mom that I talk about & miss so much, not that I don’t usually miss my grandma too. However, this stay I have though a lot about Taylor’s Gigi, as he called her.

My brothers & I got the chance to take care of Gigi the last 6 months of her life. During the many trips to Loveland to care for her and take her back & forth to doctor’s appointments we forged a tight bond that we didn’t share much of our life. We always loved each other, but it was during this time that we became close friends too. I have always been so grateful that we were given this chance to really get to know each other, to see each other in different lights. This stay I have reflected a lot about that time. I think it may have been a gift from God for so many reasons, only one of which was that I would need to know how to be a proper caregiver just a couple years later. Every wound I tended, doctor I spoke to, pain I saw in her eye…they would all become perfect practice for what my life would later be. In so many ways my Gigi taught me everything I know and is still here looking after us today. This morning I say a special thank you to my grandma, Grandma Gigi, for making me a strong, capable woman with a compassionate heart. I want to say a special thank you to Fifi too. A woman so much in stature like my grandma, so kind, so strong, so giving. Fifi you are so special & I am so thankful to have met you, may our paths cross again.

Yesterday we spoke with GI & Hematology. Hematology got involved to try & start getting to the bottom of Taylor’s down trending red blood counts and lowering platelet levels. They haven’t said too much yet, just gathered information from me. I expect we will hear something from them today. As you might have guessed, I am very anxious to hear what they have to say. Taylor’s unexplained blood changes have made me nervous from the first strange lab result.

GI wanted to add additional fluids & for Taylor to have a blood transfusion to boost him up. Fluids increased yesterday and Taylor did seem to be doing better. He stayed awake longer, had a little more energy to play, his lips aren’t AS dry…I’m frustrated about this. I wanted our docs to add an extra bag of saline this weekend, but everyone kept saying no, the numbers were ok. Folks, a mother doesn’t need a number to tell her when her kid is not hydrated. I know when his lips get dry & he isn’t using the bathroom like normal. Anyhow, it is fixed now. The blood transfusion part of their recommendation is on hold for the moment while Hematology runs a few more lab tests, but I am hopeful he can get this before they discharge him.

Another blessing from yesterday was that the pain team was able to get an acupuncturist from Taylor’s office to stop by. This has proven VERY successful for him in helping to control pain & nausea in the past. You really could see changes immediately following last night’s appointment. Taylor was complaining of leg & feet pain. Now that may not seem like a success, but if he feels “good enough” to feel the neuropathic pain then we are making strides. It does not escape me how truly sad that statement is to make…

I am happy to report that Taylor’s ostomy has started to work, at least minimally. There are still way more questions than answers regarding Tay’s motility, but even the little amount that we are seeing has made a drastic change in what is being drained from the stomach. We have been able to close the g-tube & use only 2 out 4 antiemetics to keep his nausea down. (Plus the acupuncture.) This is a HUGE improvement!!! Nausea has been the biggest concern I have had the past few days. If we couldn’t control it here, how would we control it at home?

So the plan for the moment is to go home Friday…yes, tomorrow! We are thrilled to be heading home, although a little nervous too. We will be heading home with the normal stuff-oxygen, iv nutrition, port care, meds, etc. New to our list of duties is IV Zofran(nausea med), Extra fluids-also IV, and ostomy care. I am ECSTATIC not to need to write wound care. The surgical sites all look great and are sealed needing NO care!

I’m not gonna lie, I am scared to go home this time too. With Taylor’s ostomy working so well the first week, taking a hiatus the second, I just don’t know what to expect. I anticipate we will have lots of questions and lots of follow ups until we get some routine down with it. I am already praying for patience for all of us as we chart out a new course.

If I get any answers or information I will write again tonight. If I don’t, I will just wait until we have the final word we are going home. I write it so often, but assure you the feeling is just as strong…THANK YOU! The support & love that we get & feel from all of you is truly amazing! Your prayers enable us to get through each hospitalization, each poke & prod. We love you so much!!!

Written Jun 30, 2012 4:22am

Count down: 2 hours!

We should be leaving here in the next couple hours. Taylor is getting the rest of his IV doses here and then we will head off for HOME!!! I can’t wait to sleep in my own bed.

Nerves are high going home this time for sure. We leave with so much more home-care than we had and Taylor’s pain & nausea are teetering a fine line between controlled & not controlled. He has gone almost 24 hours without IV pain intervention, but not without IV anxiety meds & nausea meds we won’t have available at home. I am betting that being home will be a happy change and hoping that it pushes him firmly into the controlled section. Please say prayers & cross your fingers that I made the right choice here. (Everyone-doctors, Taylor, etc. left it entirely up to me when we should go home this time…no pressure!)

There is so much to do when we get home…exciting things. We are painting & redecorating Taylor’s new room in comic book stuff. (Taylor told me, “Mom, I can’t possibly decide between Marvel & DC, let alone one character…it will need to just be superheroes.”) We have lots of packing, cleaning, & painting to do this weekend and in the weeks to come. Trying to focus on all the positives instead of the anxiety we are feeling.

I will likely not update tonight as we get home and settled in. I will update tomorrow sometime in the afternoon or evening and let you all know how Tay is doing at home. Do not worry if it gets quiet here, I promise to let you know if there is anything wrong or we come back to the hospital. Thank you so very much for continuing to support us through all these crazy years! We sure love you!

Written Jul 1, 2012 5:38pm

It has been a BUSY 24 hours at home! Taylor & I usually spend the first couple days at home relaxing…not true this time. We got home early evening last night and were welcomed home by large boxes of all Tay’s home-care supplies. We quickly set to work getting him hooked up and things set up for the evening. I hope that we are able to set into a routine quickly, because it was a little insane how long things took to get done last night.

Taylor was happy to spend the evening playing his new Lego Batman 2 game on the Wii and I met up with some awesome women (10!) for a ladies night at the movies followed by drinks. It was the perfect way for us to both celebrate our hospital break out! Thank you to all my friends for joining me for some fun before reality sets back in. I am so glad we both got some “play” time before a VERY LONG night. I was up every two hours dosing meds and fixing an ostomy leak.

Taylor slept until 1pm this afternoon, just plain wiped from having to be up so much throughout the night. We quickly went over to the new house and set to work cleaning up a bit and getting a feel for the new place. Taylor had yet to see our new house and is excited to see that his room is so large. He struggled to get up the stairs he was so weak and lasted only 2 hours before he needed a nap.

On our way back to the old house Taylor’s port infiltrated and we ended up having to pull his needles. It was nice for him to get to take a shower without being hooked up, but having to re-access him already was a drag. It also meant yet another new bag change. UGH!!!

The evening picked up for both of us and turned out to be a pretty good day overall. Taylor got to go see the musical “The Addams Family” at the Temple Buell with Uncle Mark as a last minute replacement for Uncle Randy when he got sick. They both had fun and even ran into our wonderful nurse, Tony & his mother. I was able to go pick up Taylor’s new bed with my friends Michele & Tim. Thank you guys so much…not thinking the old Kia would’ve been ideal for that & it is always more fun to shop with friends like you.

Well, it is time for another med & then my block of sleep so I better take advantage of the break while I can. Here’s hoping for no more “surprises” tomorrow & at least a little sleep tonight. Lots of love!

Written Jul 2, 2012 3:02pm

Still trucking along trying to find a groove. Taylor is doing better every day, even if VERY slowly. He has been needing a lot of sleep still, likely meds, heat, and the toll of the last 3 years on his little body. Being home with the bag has been a challenge. Taylor is once again plagued with sadness and frustration.

Shane & I too need your prayers. We are tired and full of the helplessness a parent feels when they see their child suffer endlessly. I normally don’t like to sound so discouraged and negative in a post, but today we have all been challenged.

We love you all so much and are so thankful that we are able to lay these sorrows out to you and ask for you to pray for us & with us, that Taylor may feel his pain ease and his worries dissipate…that we may feel our burdens lifted with the rise of the morning sun.

Written Jul 3, 2012 7:28pm

You probably all know this from reading this journal about Taylor, but one of the greatest things about him is his ability to make the best of things. Perhaps never has this been more true than over the past couple days. Life at home has been challenging and exhausting. All three of us have been completely run down. Sunday Taylor was so weak that he barely got out of bed.

Today though was a new day and Taylor was bound and determined to make the best of it. We had a nice surprise visit from Taylor’s para to start the day off right. We then went to the Children’s Wheat Ridge satellite for his Monday blood work. Afterwards we were off to meet two of Taylor’s friends from school, Emma & Morgan (and families), to see Brave. The movie was great, the ostomy bag leak that followed not so great.

After the movies we got a call from Taylor’s PCP asking that we go to urgent care. I had called to ask about a vaccination site that was “growing.” By afternoon today Taylor had a grapefruit size swollen rash on his thigh from a shot given to him Friday. It started off as a small circular reaction, nothing significant, but doubled in size daily. Given his medical history & the appearance of Cellulitis Taylor was put on a course of antibiotics.

This would’ve been a long enough day for most, but Taylor was really looking forward to the midnight showing of Spiderman. So instead of ending the day with a bag leak & hospital run, we took a quick nap and went to the movies for the second time in 24 hours. It may sound crazy to some of you…we certainly could’ve seen the movie 12 hours later at a more convenient time. I can’t explain to you though the thrill it gives Taylor to escape for two hours from the tubes, pain, & frustration…to stay up and see a movie when it is way past bed time and feels like a special treat…The sparkle in his eye is enough to make me wish there were a new superhero movie every night of the week. It rejuvenates me in a way no sleep ever could. Tonight was no exception. Just the two of us and a quality comic book movie, who could ask for more? Oh, and a very nice guy gave Taylor a limited edition action figure that the theatre gave away to twelve lucky winners. This stranger made Taylor’s whole day!

Our lives have more ups & downs than a roller coaster, but the one thing I know for sure is that so long as Taylor wants me & needs me I am along for the ride.

Written Jul 5, 2012 4:28am

Happy 4th of July!

I want to share with you that today Taylor went 24 hours without any medical craziness! No ostomy leaks, no allergic reactions, no IV infiltrations!!! Today Taylor rested well, his pain was fairly well controlled with the meds, and even his nausea has calmed down some. It is kind of pathetic, but that is what I call an incredible day!

I want to thank my dad for hanging with Tay today and playing video games while I went over to the new house and got some painting done. It is absolutely amazing what can get done in a day when there are no medical issues. I got a bathroom painted, a pantry painted, and some other odds & ends done. So happy to see some progress.

Taylor was thrilled to enjoy some Lego time with dad tonight. They went to the free monthly mini build and also built a new set at home. Dare I say that we might be finding a groove here at home. It is impressive to see Tay’s home care at night. I have now learned how to run TPN, Lipids, Fluids, & IV Zofran through the same line. We are y-ing in tubing even the PICU would appreciate. 🙂 All our wonderful nurses have taught me well!

So many of you ask if there is anything you can do to help us. I have always preferred to be the helper bee, but there are some things this month that I need to call on your help for. You already know that we are moving…what an endeavor to undertake at this time I know. For the next week we will be deep cleaning and painting Taylor’s & my new place. If you have a free afternoon or evening & would like to help we would be so very grateful. My goal is to get all the cleaning & painting done by Sunday night, so that the following weekend we can actually move in. I have listed the dates & times below when I plan to be at the new house. Just call me or text me for the address & to let me know you are coming. My number is 303-668-2327.

Weds. 7/4, 9am-evening

Thurs. 7/5, 1:30pm-evening

Fri. 7/6, noon-evening (possibly morning too)

Sat. 7/7, 9am-evening

Sun. 7/8, 9am-5pm

Actual Move:

Sat/Sun 7/14-7/15, 9am-evening

Please know that we are so very thankful for any help you can give. It isn’t easy to ask for help, but I am so afraid that I will try and do everything myself & run out of time or an unexpected hospital stay will throw a wrench in everything.

We hope you know how much we love you all & how very special each one of you are to us. Today in the mail I received a lovely package from a friend. Inside were beautiful words of support and a gorgeous wooden angel of serenity. Thank you Suzette for such an unexpected gift of encouragement. You guys make all the difference! When we are weak and in danger of faltering, you always know exactly what to do to pick us up. We hope that your 4th of July is a wonderful opportunity to gather with friends or family and enjoy a sunny summer day.

Written Jul 6, 2012 3:31pm

It has been a busy couple of days. Taylor has been feeling okay. The IV nausea meds are keeping his nausea controlled for the most part. Pain has been slowly getting better. He has still been extremely tired, but I guess that is to be expected after all he has been through.

I want to thank all of you who have helped paint and get the new house ready. Michele, Tim, Morgan, Heather, Spencer, Alfredo, Ben, Mark, Randy, Jen, & James, we appreciate all the help you have given us and especially giving your time on the 4th when I am sure you had much more fun things to do. Thank you to my dad, Shane, & Mrs. C for watching Taylor so that he didn’t have to be toted back & forth. We are getting a lot done, but there seems like so much more to do. Several more days of painting coming up and several more awesome friends coming to my rescue…LOVE you guys!

If I have been off recently, I am sorry. This week is always a rough one for me. Twelve years ago tomorrow my mother passed away after a four day hospital stay. I miss her so much. It seems so unfair that she never got to meet Taylor and see what a great kid he is. There is not a second of the day that goes by that I don’t miss her so much. She was more than a mom, she was my best friend. I feel her with us though…when I suddenly get the strength to do things I don’t think I can do, when it rains or snows, when I wake minutes before I am needed to perform life saving CPR on my son. If only I could just have one more hug…one more day.

Tonight I go to sleep in hopes of seeing my mother the only way possible…in my dreams.

Written Jul 9, 2012 4:53am

Still trying to find our groove. Taylor is definitely making progress, but it is painfully slow. Nausea & pain are still constant companions. Fatigue is also huge. We have one more week without a lot of appointments and then he is due for his IgG infusion and a slew of additional appointments, including GI where we will determine a plan for eating, Ohio, etc.

It has now been 14 weeks without Taylor being able to eat or drink. He has been miserable! Tonight he had a 30 minute break down after seeing a commercial for Olive Garden. Poor thing…if you mention popcorn, pizza, or ice cream it is almost a sure bet tears will fall. Between still not eating & the addition of the ostomy (and leaks) he has been pretty depressed again. Doing our best to focus on games, friends, movies…things that he can do.

There has been an enormous amount of progress made at our new place. We have gone through something like 25 gallons of paint and have only trim work, doors, & two bathrooms to finish. I could never have gotten all of this done without the incredible help of my friends: Michele, Morgan, & Tim; Heather & Nate, and boys, Alfredo, Kim, Debbie, Jen, James, & boys, Jess & Davis, Ben, and Shane. Hopefully I didn’t miss anyone, so many people were there working and I am so tired I’m losing my mind a bit. Thank you all so much for working so hard & putting up with my crazy mood swings.

So the biggest reason we have gotten as far as we have is Beth & Roger Wood and their company Mosaic. I don’t know how they found out about our needs, but Roger brought a crew of 4 guys out Saturday and got an amazing amount of painting done. Beth supplied everyone with food and beverages, so thoughtful. The Wood family lost a young son to Leukemia and set up a foundation to honor him & help other families in need. This is so inspiring! I don’t know how many hours it would’ve taken us to paint what they got done in 4 hours!!! The work they did was outstanding! If you are looking to do some home remodeling, etc., I would encourage you to look them up.

We have been so very blessed with all the help & support of friends, family…even strangers. Because of all this help it looks like we will be able to move this upcoming Saturday & Sunday. I am so happy things are running smoothly and anxious to get this move under our belts and our lives back to a normal stress level.

Quick update for those who were wondering about my father. His PET Scan showed an area of concern near the pancreas. There is talk of benign lymphoma? My dad & I are meeting with the oncologist that his doctor recommended Wednesday. That same afternoon I have some testing done as well, get all the yucky stuff done at once.

Anyway, I am wiped out and there is a ton to do this week. Thanks for all your help & support. We will keep moving forward even if they are baby steps! Good Night!

Written Jul 10, 2012 5:20pm

Best laid plans…try as I might, and as everyone else might, there are just too few hours in the day to accomplish all that I need to get done before moving. As such, I have decided to give myself, and friends, an extra week to get the new house ready before moving…there was just too much pressure. So now the plan is to continue getting the new place ready with intentions of moving furniture & large items on Saturday, July 21st. Sorry if this causes problems for anyone, I just need to slow down a little as my body doesn’t quite want to keep up with my desire to get things done.

Taylor has had a very roller-coastery day. He woke this morning very pale and weak, needing significant help to get out of bed and dressed. We went to Children’s to get his Monday blood panel (I will be curious to get the results in the morning.) and I had them check his blood pressure which was a little low, 80/50. Around noon he asked for pain meds and nausea meds, but was determined to keep a scheduled play-date with Emma, Morgan, & Sam. By all accounts he had a fabulous time playing Hunger Games and building bow & arrows with sticks & string. I know he had a sparkle in his eye when I picked him up and a little color in his cheeks from being active.

Taylor no sooner walked in the door than he requested more pain meds & nausea meds. He immediately went to bed and has been asleep practically ever since, which was like 4-4:30 this afternoon! He woke briefly with a leak for a shower around 7, then back to bed. His color is once again nonexistent and he has been very weak when getting up to shower or use the bathroom. Although I am concerned, I am THRILLED he got in some fun time with his friends.

Tonight I ask for prayers for our friend, Kati, who is in the hospital after having surgery today and our friend, Myles, who had to have his port removed this weekend due to infection. I ask for prayers of strength & patience for myself as we face this upcoming move during a time when so many things are happening. We have seen first hand how powerful prayer can be. Thank you so much for continuing to hold us in your thoughts…we love you so much.

Written Jul 12, 2012 1:17pm

Good News/Bad News

I seriously question how much more this family can take. I know we will get through everything, but REALLY? As you all know my father & I met with his oncologist today to go over some test results. I am so sorry to have to report that my father has been diagnosed with Lymphoma. We don’t know much more than that right now, only that he will have a bone marrow aspirate, echo cardiogram, & lymphnode biopsy done early next week. The best guess for treatment will be 6 months of once a week outpatient chemotherapy.

My plan is to tell Taylor in the next day or so. I dread this as he is so close to his papa and he knows just how awful chemo can be. Please pray for us all as we face this next challenge.

The good news seems very overshadowed today but I say a prayer of thanks that all my tests came back clear. This is awesome because I clearly do not have time to be sick right now…my family needs their “psuedo-nurse.”

I don’t have it in me to write anymore tonight. I love you all so much & appreciate everything you do!

Written Jul 21, 2012 2:34pm

I will do a complete update Sunday, but wanted to let everyone who is calling, texting, and e-mailing know that Taylor & I were not at the Batman screening in Aurora. We did go to the midnight movie as many of you know & are very sorry that we worried everyone. Please continue your prayers for all the victims, families, and law enforcement personnel left to pick up the pieces of this awful tragedy.

We are moving to our new house tomorrow and are very grateful for all the help our friends & family have given us this month & continue to give us while we get situated in a new place. Change is never easy, but we are excited to take the next step.

We have had many appointments this week and have many more next week. I am sorry that I have been neglectful in my updates. Life has been busy and challenging. Tonight we remember just how lucky we are to still be fighting! Lots of love!

Written Jul 31, 2012 5:39pm

So obviously Sunday came & went without an entry from me. As you know, I am a tech-idiot and couldn’t get my Internet set-up for the new house. Thanks to Heather & Nate Graf I am now on-line!

Wow, so much to say. This will likely be a long entry, please bear with me. I am SO happy that July 2012 is coming to an end. This has been one of the most challenging months in our lives. I hope our new landlord loves us, because I NEVER want to move again. I have moved many times in my life, but never with a special needs child. Taylor & I are both so incredibly energy deficient right now. I am not sure why it didn’t occur to me that drs appointments, med needs, bag leaks, pain, etc, would not take a vacation while we were trying to get settled in.

Good news is the old house is all but empty & almost all cleaned. Settling into the new house is going to take awhile, but it is always fun to decorate a freshly painted, new home. Taylor LOVES his new room. It is much bigger than the old one, he even is able to have a couch & the Wii in his room! A dear friend of ours bought him an awesome new platform bed that makes it easy for him to get in & out of and much easier for me to make when leaks happen. We will post pictures just as soon as we get things put together.

I too love my new digs. It is lovely to have my own bathroom. All our over sized furniture fits well and this place is fast feeling like home. It is so much more than we need and once again we are only here because of incredible friends.

The very best thing about the new house isn’t the large rooms, or separate baths…it is that EVERYONE we know is here. Whether it is our friends Michele, Tim, & Morgan who took charge of Tay’s room…Alfredo who built cabinets & painted our fireplace, Mark & Randy who hung the most amazing panels over the sliding glass door, Nate who built me a reading nook around my window seat, James who put in new floors in the LEGO room, Heather who put together my kitchen…there are far too many to name them all, but there quite literally isn’t an inch of this place that hasn’t been touched by our friends and family. We cannot possibly feel anything but overwhelming love everywhere we look. Thank you to everyone who helped us paint, build, move, keep our sanity…we don’t deserve all you do, but are so grateful that God put you into our lives.

Now for the medical. Things have been beyond frustrating. Taylor has had more ups & downs than a yo-yo these past few weeks. Sleep has been a never ending battle, either he is so tired he is sleeping for 17 straight hours, or pain is so great he is up for 32 hours straight. We are working with his pain team to get to a “happy place” with this.

As of this week Taylor has gone a full 4 months without eating or drinking. The IV nutrition gives him just enough, but you can see him getting weaker and needing more help. GI has given us the go ahead to begin trickling feeds through his G/J tube. We tried last week to start at 5mls an hour, which is next to nothing, and had to stop after 10 hours because he was screaming in pain and gagging even with the IV nausea meds. It took two days to get him off maximum doses of Dilaudid and back to his current baseline.

Taylor is anxious to get this going because he knows that this is the path to being able to have an ice cream cone, the food he dreams about. He wanted to try it again last night and we have had a “successful” 24 hours. I say “successful” because he has once again been on max doses of Dilaudid and pain kept him pretty blah today. He said, “I just have to push through it mom, I want to have ice cream.” I’m not gonna lie, I am concerned about this pain and nervous. His ostomy has had less out, when more is going in, and he can’t keep taking this much Dilaudid and go to school…also, pain meds slow the gut down & we don’t want that. Baby steps…if this goes okay we will go to 10mls next week then 20mls, etc until we are at his goal. The doctors will decrease the IV nutrition if we are successful in getting through a couple weeks of 24-7 feeds.

Taylor’s blood work is staying consistently low, but not low enough for transfusions which leaves him with this chronic fatigue. They call this Anemia of Chronic Disease. The way to get rid of it is to get better, helpful right? He gets blood work every Monday to keep an eye on his liver & electrolytes. It is comforting to know that they are watching things so closely.

We had a “port scare” for the past few weeks as well. Thanks to all who prayed, everything seems to be going well now. Several nurses and myself were not able to access him and unable to get blood return when we did. It seems his port has settled and after some meds to keep clots from forming, we now get good blood return. Tonight was my first night having to access the port again after his “repair” and I was super nervous. Thank God I was able to get it first try with great blood return. I can’t explain how frustrating it is to stick a needle in your child’s chest and fail having to repeat the process…so glad that has only happened on two occasions. He forgives me, but it is painful when you miss the port. (The new port is tricky, I never once missed on the other port. Three actual nurses missed too, making me feel a little less pathetic.)

Today we saw neurology. They feel like the seizure meds we have Tay on are working well and had some suggestions to help Tay’s bowel motility without the neuro side effects. It means yet another med several times a day through the g-tube, but we will try anything to help at this point.

Tomorrow Tay sees his psychologist. He has been down lately. I know he is sad that the ostomy bag has not made his pain any less, but instead just added another source for problems. He had a leak when one of his friends was here a couple days ago and spent an hour crying in embarrassment when his friend left. It is so hard to see him suffer and not be able to help. This is a time when so many of his friends are becoming very independent and he gets more dependent every day. I will keep supporting him every way possible and surrounding him with love.

Finally, a major source for Taylor’s & my worry has been my dad. My dad, Terry, has been diagnosed with Stage 4 Mantle Cell Lymphoma. He begins his first of several inpatient chemotherapy rounds Thursday. Once they are successful in getting him into remission he will need to have a Stem Cell Transplant and more chemo. All of this brings back awful memories & worries. We don’t want to see my dad suffer or go through so much. Taylor especially is struggling knowing that my dad is going on a very similar chemo regimen to his. He is concerned that his papa will “end up like him.”

We are determined to support my dad and pray for the best possible outcome. We know that he is very willful and will do everything in his power to get through this. We appreciate your support of Grandpa Terry as well.

Here it is 1:30am and I feel my eyes getting heavier. I promise to be better about shorter more frequent entries. With any luck life should be slowing down ever so slightly. Thanks again for getting us through the challenging times and celebrating the amazing days too! We send lots of love your way!

Prayers for Michelle

Written Aug 5, 2012 11:21am

Hello Everyone,

Heather here to do a quick update, with more information to follow soon…

Michelle needs prayers for quick healing. She has been admitted to the hospital this afternoon, she apparently had a stroke. I am going down to the hospital right now and will do a better update after I get more information.

Thanks for your prayers!

Update on Michelle

Written Aug 5, 2012 2:17pm

Hello All,

Heather updating again…

Went and saw Michelle this evening. She seems to be doing a LOT better than before she went to the hospital.

She did have a small stroke, but it was caught very quickly and she seems to be recovering well.

She does not have her computer at the hospital (for now) so I will do my best for the next couple of days to keep everyone updated.

Here is her recent facebook post: “Thanks for all your prayers. It was a scary day, but tonight I’ve recovered 80% movement in my right side. It was a small stroke & I got to the hospital quickly…thanks to amazing friends who stepped in & took care of Tay & got me to the ER. Thanking God things went as well as they did.”

Keep those prayers coming so that everything will go well overnight and that they can allow her to go home tomorrow!

-Heather

Written Aug 6, 2012 3:26pm

Well, it has been an exciting weekend. I am so sorry to have worried everyone & I am so happy that I had awesome friends with me who knew exactly what to do in a crisis.

It is unclear what happened & many theories were pondered, as seems to be the norm at hospitals. Lutheran was able to speak to my neurology team this morning & that combined with family history and a “suspicious” clotting event 10 years ago has us thinking it was a VERY mild stroke caused by Cerebral Vein Thrombosis. Basically, I am fine but will need to be kinder to my body including taking my blood thinner regularly. I have promised to start a pill box for myself next to Taylor’s and we can take them at the same time for accountability.

Thank you for all your prayers and messages, I truly do feel very loved. Word of warning that if you ever have numbness and weakening in your limbs, it can be very serious. The ER doctor said they only have 4 hours to dose the blood thinner they gave me??? Crazy, I didn’t know that. One day a CT shows ischemia, the next it is clear…but only 4 hours? Sounds like a movie. So very, very thankful that I was with Heather & Michele who were able to get me treated and Taylor taken care of until Shane was there.

Shane was awesome this weekend & deserves major credit too. Friday Taylor had Botox injections in his head & face for headaches. I think they were a little heavy handed on the sedation and it left him unable to stay awake (except 2-3hours) all day and struggling to walk so badly Uncle Mark & I both had to help him to the car. Shane stayed with Taylor that evening, while I went to visit my dad at the hospital getting chemo, because I didn’t want him too far off the pulse ox machine. The next morning he was back bright & early helping me move a shed that was at the old house (what we were doing when the numbness started) and stayed over night with Taylor bringing him to the hospital Saturday evening & Sunday morning to see me. He also stayed after I got home today so I could rest a bit, given the “neuro” checks I had to do every 30 mins throughout the night didn’t provide a very restful environment. We are so thankful that Shane could just step right in. A few phone instructions and he got all Taylor’s med stuff done last night…it really means a lot to know that everyone got things “covered.”

Most of you know that in the past three years I have struggled in my relationship with God. I know there are some that don’t think you are a good Christian if you admit that. There are some that question, but would NEVER admit that. Maybe I’m wrong or just weird, but I look at my relationship with God like I do my parents, family, & friends. I ALWAYS love them, but sometimes can be so disappointed with them I could scream. I’ve always thought that if God were real, if He were my Father, than he could surely take me being mad, hurt, angry, or upset with him. This past week especially I have been extremely angry with God, reaching out to many Christian friends for direction. I have questioned why my dad has to have Cancer, hasn’t our family been hit enough? I have questioned why Taylor can’t have a few drops of formula through his j-tube without so much more pain, will he ever be able to eat? I can’t say that I am not still hurt and wishing that I had answers for at least some of the questions in our lives right now, but for tonight I just want to say Thank You to God. He has taken a lot of slack from me lately, demanding answers without a lot of gratitude for all the things He does. So tonight, while I know we may never have definitive answers for what happened this weekend, I am home grateful to be laying beside my adorable child…which will always be the best medicine I can ask for.

Written Aug 9, 2012 2:58pm

Today was school registration. I can’t believe school starts in a week & a half, seems like we didn’t get much of a summer break this year. It was exciting to be on school grounds and see some friends. Could Taylor really be going into the 6th grade this year??? Doesn’t seem right…he got cancer in the summer following second grade!

We had literally been at school 10 mins when Taylor had a bag leak. Praying hard that this is not a sign of how the year is going to go! He was sort of “off” all day today with increased pain & nausea. When we got home Taylor slept for a 5 hour block. He gets his IV IgG on Monday just in time for an energy boost to start the year.

We have been trying feeds through the j-tube every few days, always to increased pain & always ultimately needing to be stopped. I hope to hear from GI tomorrow with a new plan.

Hoping to spend the rest of the week unpacking and taking it easy. With Tay & I neither one 100% things have been very slow going. We hope that this entry finds you all enjoying the last weeks of summer in complete health. Wishing you lots of love!

Written Aug 17, 2012 2:32pm

Today we met with Taylor’s new teacher & principal to talk about next week and expectations for the school year. We both have a lot of anxiety over the upcoming year. It is so hard to believe that Taylor will start the 6th grade! The plan is to start Taylor off on the schedule that worked the best last year, M/T/TH/F 9-2:45 (or however long he can make it.) We will mostly focus on getting him to school and socialization, working on homework as he is able.

Speaking of school, this year I hope Taylor will be well enough to attend Outdoor Lab. He is selling Entertainment Coupon Books to fund his way. If you are interested, let me know. Outdoor Lab was one of my favorite school activities and I know he would love it…here’s hoping he is strong enough at the time.

We have had several appointments this week trying to get things done prior to the school year. Friday he had acupuncture, which seemed to help with nausea & neuropathic pain quite well. Monday was his infusion of IV IgG at National Jewish. Today he saw his psychologist & pain team, as well as a follow up with GI. We have seen fairly good results from last week’s Botox injections for his headaches.

The big news that has come out of all these appointments is that we have decided to stop attempting to feed Taylor’s gut. The feedings through the g/j tube have not gone well, so this isn’t a big surprise. Taylor has seen an increase in pain and needs more pain meds to get a very minimal amount of formula in. We will reevaluate whether it is worth trying again in a month.

This is such an emotional decision. It is so much better to feed through the intestines, but his just don’t seem to want to cooperate on any level. All our hopes pretty much lay with the GI specialist in Ohio now. They have received Taylor’s records and are reviewing them. It could be another 3-6 months before we have an appointment. Taylor has been so upset about food lately that anything sets him off…commercials for Dairy Queen, the smell of popcorn at the movies. It has been nearly 5 months now without eating…poor guy.

Tonight we are both exhausted and have spent the evening cuddling & watching a movie…well for about 20 mins before we both fell asleep. Hoping that a good night’s sleep gives us new hope & perspective tomorrow.

Written Aug 23, 2012 10:01am

This has been an excellent start to Taylor’s sixth grade year! He has been to school both Monday & Tuesday for the entire expected time frame. Taylor loves his new teacher and is enjoying school so far. Each day he has come home so tired that he didn’t even make it home, a 5 minute car ride, before giving in and sleeping.

It is a huge relief to have the year start out so successfully. Taylor and I both had a lot of anxiety coming into it and have both felt relieved. Last night he was given his first homework, which went off without a hitch and he was able to complete it in short order on his own. We both know that things are bound to get harder, but are taking this moment to enjoy these little successes.

Today he was able to sleep in and have a very low key day to regroup and recharge for the rest of the week. We have decided to follow last year’s schedule and have him scheduled to be home Wednesdays. We found that he got sick less and attended more school overall when we did this. It also gives us a day to try and schedule appointments and infusions. I stress the word TRY because not all of his doctors have office hours on Wednesday, etc. but at least it is a start.

My dad will begin round B tomorrow of his chemo regimen. He goes inpatient for the next five days and any prayers you can send him are much appreciated.

We are getting settled into our new house more & more each day. We still have a plethora of boxes around, but we also have hung pictures to offset them. I am not so patiently awaiting the day when we are without any trace of cardboard!

We are looking at September 14th & 15th as yard sale days. I am trying to find a place to hold it and will let you know for sure. If you are looking to get rid of stuff around your house and haven’t made it to Goodwill yet we would love to have your donations. Anything we make from the sale will go towards getting Taylor to his GI specialist in Ohio.

Thank you all so very much for your love, support, and constant prayers for us. Taylor has had such a good week and I am just so happy to be able to share it with you.

Written Aug 25, 2012 3:27pm

Admittedly I am a movie snob. I like the big screen, the super-sized picture that shows each and every freckle on the actor, the surround sound experience. I love the smell of popcorn, the reclining chairs…even the sticky floor. Going to the movies makes me giddy with excitement. Tonight we “went to the movies” a little differently.

You see today is my father’s 68th birthday. He is inpatient receiving his second chemo round. Taylor & I have spent enough holidays in the hospital to know that it isn’t much fun and we decided to try and make this one memorable for my dad.

Today’s movie was seen on a small screen, with muffled sound. It was interrupted many times by pumps beeping, nurse visits, & bathroom breaks. Instead of soft velvety cushions and arm rests we had vinyl mattresses and scratchy hospital blankets. Today’s movie was perfect.

My dad rested comfortably in his bed while Tay & I snuggled on the couch bed. We exchanged many smiles as we watched Jennifer Lawrence volunteer as tribute. With Taylor curled up next to me and chemo running through my dad’s veins I thought only of how fragile life can be. Whether you are 68 or 11, you never know how much longer you have.

This has been a great week. Taylor has gone to school everyday for the whole day. We are surrounded by family & friends who continue to help though they have been called upon way too much. Today it didn’t matter where the movie was playing, or even that it was the delightful Hunger Games. Today it was so much more than that, it was a family in crisis stopping to enjoy each moment.

Tonight when I lay down I do so peacefully & with a full heart. I am so very grateful for this night and the joy it brought us all. Hoping you can all “go to the movies” this weekend with the ones you love!

Written Aug 27, 2012 5:08am

This is hard to believe but we have just been admitted to the PICU. Taylor got sick yesterday afternoon with chills, increased pain, etc. I checked his temp every hour through the night and finally it reached the magic 101 at 9am.

By the time we got here (about 45 mins later) his temp was 106, BP was 88/19, and we were taken immediately to the trauma room in the ER. His oxygen was only at 77% and he is now on 3 liters of oxygen as well.

Blood cultures have been taken and we know this is a septic infection. Waiting to see what grows and PRAYING it has not reached the port. We really do not want another line infection.

Taylor is pretty incoherent right now, talking about zip lining today and strange things. He hasn’t made a lot of sense for the last couple hours. The one thing he did say on the drive in was that he was very sad he would be missing school. It breaks my heart that after such an amazing first week of class we are already back in the hospital. I was hoping that this year would be different…

Thank you so much for your prayers. I will update when I know something or this evening before bed.

Written Aug 27, 2012 3:15pm

This has been an exhausting evening. Things took a turn for the worse early evening and Taylor was intubated just a little while ago. I know it was just protocol, but for the first time they asked if I wanted him to have the intervention. I said yes immediately, but keep thinking about how many times Taylor has asked me not save him anymore.

His blood pressure dropped all the way to 64/27, which is the lowest it has ever been I believe. He is now on two blood pressure support medications and an arterial line is being placed as I type so that we know exactly where the blood pressure is.

Taylor’s temperature is hanging around 101 tonight with Tylenol. It too reached an all time high this afternoon at 106.6. The doctors know that they are facing a bacterial infection and have him on three antibiotics until we see what grows.

It never gets easier to see him fade so quickly. This time I am scared out of my mind. Just how many times does one recover from such extreme infections? I have to believe that he will pull through, but anyone in my position would be worried how many times is too many.

Tonight I pray that Taylor will recover as fast as he has in the past. I’ve always said that he comes back up as fast as he goes down…hope he proves that tonight.

My dad is just across the street from us getting his final chemo dose of the round…and I am mad tonight…mad! I cannot be two places at once. I cannot take all this suffering. My heart is broken.

I will write in the morning sometime and let you know how things are going. We appreciate so much your prayers. Lots of love.

Written Aug 28, 2012 12:23am

The doctors finally finished messing with Taylor and the nurses got him settled in about 1:30 a.m. He is now on 10 pumps! The IV pole once again looks like a Christmas Tree all lit up. They are keeping him relatively sedated, but he will squeeze your hand and opened his eyes when I said I love you and wiggled his hand that is strapped to the bed. I know from past stays that this means he wanted to write and if I had to guess, I would bet money he would’ve written I love you too.

He is stable on all the medications and the combination of blood pressure supports has kept his blood pressure right about 95/35. His fever has stayed low grade, at times even disappearing after Tylenol.

There isn’t a whole lot more they can do for him right now. The plan is to keep him stable with this set up until the antibiotics work their magic and his body is able to recover. More waiting & praying…

I will update tonight, or if anything drastic happens in either direction. Thank you so very much for your prayers and messages. It helps to know that there are so many people out there supporting us. Visitors are welcome in the PICU if they are over 12, healthy, and between the hours of 8 a.m.-9 p.m. If you are visiting in the evening you cannot get in between 6:45-7:45, shift change. You can be in the room with us during that time but you must be here before 6:45 p.m. to do so.

We love you all lots!

Written Aug 28, 2012 4:06am

Things haven’t taken a drastic turn, but I do have quite a bit of information so I thought I would update. We have so many family & friends that are filled with worry right now.

We now know that Taylor has a Gram Negative Bacteria. This didn’t mean much to me at first, but after speaking to the doctors I know that this is a far more serious and concerning sepsis than most, if not all, of his previous infections. This may be why I have had such a different feel about this stay from the start.

Taylor’s blood is not coagulating either and his platelets have dropped to 45,000 (normal is 150-500,000). If they drop further, he will receive platelets. They are also discussing the need for an FFP transfusion. I know very little about this but understand that it is blood plasma that is given to those with severe vitamin K deficiency and problems clotting.

Another new issue for Taylor is high blood sugar levels. We have been asked to participate in a research study in this regard. The packet for the research study really hit me hard. The title line says Heart & Lung Failure. Obviously I knew he was on pressors, thus having blood pressure/cardiac issues, and is on a ventilator-lung issues. Something in that black & write simplistic statement just hit me though. Taylor is much sicker than he has been in years, maybe ever. The next 24-48 hours are critical.

I am leaning towards participating in the study. He and I have had many conversations about how little they know about so many pediatric issues. I think about how great it would be if they knew how to “fix” his intestine. He ALWAYS says he wants to help. He has even stated that when he is gone he wants his body to go to science. I can hear his little voice saying, “What good will it do to bury me? If they can learn something to help someone else, that’s awesome.” Each & every time we have had this conversation my heart breaks further. Who wants to know what their child wants done with their body? Why does an 8 year old then, or 11 year old now, even have to think about such issues?

My mind is a racing mess of thoughts right now. I am consumed with worry and praying that the hours go fast. All we can do is wait and pray that his body responds to the antibiotics. Do you know how long one hour is when you are in a room with only the sound of a ventilator and pumps? When you are helpless to do anything but stare at the love of your life lying so still with so many tubes and pumps? The walls of the PICU and the quiet of the room are closing in on me fast.

I am rambling now…really I just wanted to get you all the latest. Thank you for your prayers, we desperately need them.

Written Aug 28, 2012 1:34pm

Things are starting to look a little brighter tonight. Taylor’s blood pressures have come up a little with the help of the supports. He has been more alert and has answered us when we asked questions and I got him to smile twice too, once with a message from last year’s teacher, Mr. Tharp, and once talking about his friend, Emma.

Of course the bummer part of him being alert while intubated is that he gets so very frustrated when we can not guess what he needs or figure out his hand gestures. He is still very medicated and very sick, so he loses his train of thought and gets discouraged before we figure things out most of the time. Child Life brought him an Etch-a-Scetch to write on, but he isn’t able to do so yet.

Right now he is more sedated and resting once again with his 12 pumps…up 2 from my last posting. (See the picture from today’s post.) I am hopeful that tonight is a sign that he is getting better, but have been warned that Gram Negative Bacteria can be an up & down process. Maybe tomorrow we can come down on vent settings and/or the pressure supports. That will be the true test of whether or not the antibiotics are doing their job.

Thank you to everyone who came up to visit today, Michele, Mark, Randy, Jen, Reed, Shane, Jeff, & Katja. It was a very hard day and having the distraction of visitors kept me sane.

I am hoping we are done with any drama the day has to offer and that Taylor & I both can get some sleep. Thank you so very much for all your prayers. Each hour here is a new adventure and a new emotion…so glad that you are here to take this crazy ride with us.

Written Aug 29, 2012 5:43am

It has been a busy morning with visitors and I wanted to hear rounds before I updated. There have been a few changes to tell you about. Taylor’s bacteria is a coliform called Klebsiella Pneumoniae. This is relatively good news as this bacteria is not “sticky” so there is hope that we can clear it off his port and not have to remove it. Knowing the type also lets us discontinue two of the antibiotics. This makes me happy. He has been on antibiotics so many times that we all fear he will become too resistant.

Today Taylor has been much more comfortable, barely waking when we try to move him. We will be working on weaning down blood support meds through the day/night with the hopes that he can maintain his pressures on his own.

We have also discussed going down on his ventilator settings with the hopes of trying support trials (seeing if he can breathe without the ventilator while the tube is still in) tonight or tomorrow morning. This is always a scary thing, but I sure would love to hear Taylor laugh.

The biggest concern I have right now is that he has continued to have fevers. His temperature right now is 102 degrees.

For now we are focusing on the small steps that show us he is doing better. I will update later if there is any news. Thank you so much for your support. We love you!

PS-Check out this wiring!

Written Aug 29, 2012 3:25pm

Today has been pretty good. We have had so many visitors and I very much appreciate each and every one of you. The PICU can be such a depressing place and I know that I would be a mess right now if I were left alone long enough to let my mind wander. Thank you Shari, Suzette, LeAnn, Jeff, Dana, Jared, Mr. Tharp, Ms. Duncan, Lori, and all the others who have stopped by today to squeeze Taylor’s hand and give me a hug.

Tonight Taylor is on a lower dose of blood pressure support medications and is holding his own. His lungs sound worse and he is still running a fever. They may still try the trials on the ventilator tonight, but want to get an x-ray of his chest to see if there is any cause for concern. All-in-all I think we made some progress today.

Thanks to incredible nurses both today and tonight I am hopeful that I will get some rest tonight. Taylor has seemed much more comfortable today. He did have a brief time this evening when he got frustrated again with the tube. We tried a dry erase board, an etch a sketch, having him text what he wanted…he just isn’t strong enough to do those things right now. It did my heart good though to see him so visibly happy to see his guests during the brief time he was awake. He so obviously feels the love that surrounds him.

Written Aug 30, 2012 7:10am

I have the best little boy in the whole world! Taylor was awake for just a little while today, still on the ventilator. While he was awake he was pointing to me and making a “napping” sign. I asked if he wanted me to sleep and he gave the thumbs up. He also signaled for me to eat. The nurse reassured him that he would make sure I was taking care of myself and Taylor smiled. Seriously??? He is in the ICU, intubated, and sick as a dog! What a wonderful, compassionate kid! Not sure how I got so lucky but I thank God many times daily that I am.

Today has been good & bad. Taylor has been weaned off all the blood pressure support meds for a couple hours now and holding his pressures on his own. This is great news. Hoping he is able to maintain this.

Now for the bad…the trials off the vent have gone great and it is looking like he may not be able to be extubated today as originally planned. We want to be safe about it, so if we have to wait we will. Also, his blood cultures are still coming back positive so they are starting to pressure me to get the port out. I think we should be somewhat more patient, but not sure how much time we can really buy.

Anyway, that is all for now. I will write more tonight.

Written Aug 30, 2012 1:59pm

This evening has been a frustrating one! Taylor’s vent settings are unfortunately going backwards. He has been awake all evening and let me tell you that trying to communicate when he cannot talk and/or write is just plain awful. He did so well the first couple hours being awake, but as the evening wore on they ended up adding more pain meds, more sedation…all of which means worse breathing. The worst part is that he is STILL awake, still irritated, and I cannot help him. I am now trying to ignore him so that he will rest. I can’t explain to you how terrible it makes you feel to sit across from your sick child and ignore their plea for help. It is just plain wrong, but how else am I supposed to not rile him up further?

He has now been on antibiotics for four days. We are still crossing our fingers, praying, standing on our heads, whatever it takes, just plain hoping with all we have that the blood cultures drawn today will come back negative. The last thing that we need is another surgery to remove a port that he NEEDS, only to return in 4-6 weeks to have a fourth port placed. Since he still has fevers I am worried.

Today has just plain been emotional. Once again I am grateful, more than grateful, that we were surrounded by a steady stream of visitors. Every hour alone in the PICU feels like a lifetime and I am so very happy that I haven’t had to face many by myself.

I think of how hard it must be to be our friend right now. Am I calling to ask you to go to the movies or to tell you that we are back in the hospital? I thank you for not giving up on us. I thank you for coming each and every time we are inpatient, when you’ve been out here a trillion times in the past three plus years. I thank you for sitting with us whether we are crying, laughing, sick, or healthy. We love you so very much.

Because I cannot bear to end this entry on such a down note I want to share a letter one of Taylor’s friends sent from school.

Dear Taylor,

You are one of my heroes because you always work hard to make everyone happy. You are also my hero because you have fought through many things since the third grade. You are my hero and the only hero that is the greatest friend I have ever had.

Written Aug 30, 2012 2:39pm

The lab just called and Taylor’s cultures are still positive. I am so mad I could scream!

Written Aug 31, 2012 12:09am

It was a long night. They ended up going up yet again on Taylor’s vent settings and his CO2 level in his blood was 79, normal is 35. He did stay off pressure supports all night which is positive.

This mornings blood work has him lower yet, now just 0.1 away from a sure transfusion. If I was a betting woman, I would bet they will just transfuse him now. A unit or two of blood could be just the perk he needs considering it is what carries oxygen through the body. Platelets are still low too at 45,000 (normal is 150,000-500,000). They aren’t at a sure transfusion level, but if we go to surgery they will almost certainly want them boosted.

With blood cultures remaining positive there will be a big push to get that port out. I was prepared to argue for 24 more hours, but now I am not so sure. After increases on the vent, there may be too big of a risk waiting anymore. I am sure we will discuss everything in rounds.

I am so sad that we are once again going backwards. It is frustrating that we didn’t even get to be excited about the blood pressure supports being able to stay off all night. I am hoping, praying, begging that we see drastic improvement today. I remind myself that the PICU is a place where things change on a dime, not just for the worst but also for the better. Praying for that to be true for my Taylor today.

Written Aug 31, 2012 1:40pm

In typical Taylor fashion the roller coaster ride is still going. Today was an improvement over yesterday and we have seen signs that he is getting better. Taylor has been fever free now for more than 24 hours and he has remained off blood pressure support medications.

The port removal was a hotly debated topic today. The initial plan was to remove it, but after much conversing he still has it. 🙂 Yeah! In all actuality we have only bought a day, two at the most. So we are still praying hard for negative blood cultures. The PICU doctors involved the Infectious Disease Team (ID) in this decision which made us all feel better about leaving it longer. It was also nice because we got to pick their brain about what happens next.

The hard truth is that it is not IF Taylor gets another infection, it is WHEN. With him not being able to eat by mouth, Taylor will need to have central line access (now it is a port) for the foreseeable future. This presents an increased infection risk. Also, kids with bowel issues like Taylor have many more infections from their bacteria in their bowel. They don’t know why but the bacteria we all have in our intestines gets out of control with kids like Taylor.

In the short run we will give IV antibiotics for sometime at home. Following that course we are likely to start a proactive routine of a 10-day course of antibiotics every 30 days. I think this will help him significantly, but the worry then will be him getting too resistant to antibiotics and us limiting what we have in our arsenal. It is a lot to consider. For now ID thinks we are safe to leave the port in another day or two & has asked that we add an additional antibiotic to the mix.

This evening Taylor was put on a pressure support trial for extubation. The past couple of days these haven’t gone so well, but tonight’s showed improvement. They were on the fence about pulling the tube tonight, however, and have now ordered one more trial in the early morning to be safe. We are hoping he will be extubated sometime tomorrow.

The PICU team was also on the fence about whether or not to give blood today. (I am exhausted from all the discussions with doctors today.) Their concern is always a reaction. With a little prodding and discussion about his oxygen levels and hoping to get off the vent Taylor did get two units of blood this evening. He has always shown such improvement with transfusions that I am happy we went this route.

With Taylor’s cultures still coming back positive there is concern that the infection is in his heart or brain. The ID team has ordered an echo-cardiogram to check Taylor’s heart. I am not too worried about this since he has been able to stay of the blood pressure supports. They also have ordered an MRI of the brain. I am much more concerned about this possibility for two reasons. First, with Taylor needing to be on the vent there is always the question if his brain isn’t triggering the lungs. Second, Taylor has been having spells, for about a week to ten days prior to being admitted, where he gets a wicked headache and loses his vision for several minutes. I still think the likelihood of a brain infection is small, but am happy that they are covering their bases and hope that it may shed some light on the “spells.” Both tests will happen tomorrow.

Wow! This has been a LONG five day span. It feels like a lifetime ago that Taylor was celebrating a complete week of school. Tonight he got a delivery of e-mail cards from his classmates & teachers at Prospect Valley at least an inch thick. (You can send these from the hospital website.) I go to sleep tonight thinking of us reading them together tomorrow and seeing him smile without the vent tube in his mouth! Lots of love!

Written Sep 1, 2012 12:59pm

You really wouldn’t believe the difference in Taylor within the last 24 hours if you didn’t see it with your own eyes. I am thrilled to tell you that Taylor is off the ventilator!!! It is so amazingly good to hear his voice again. He is very sassy too. The first thing he said was “Where’s the remote?” Shane was so proud.

Taylor also has much more color this evening and a little gleam in his eyes that was not there a day ago. I think giving him two units of blood made all the difference in the world. I’m just so happy I could burst.

We still have another 24 hours, maybe more, in the PICU. His cultures are still positive so we are likely going to surgery tomorrow for port removal. There is a long way to go to get him out of here, but tonight we are celebrating!

Written Sep 2, 2012 1:06pm

Last night was a long one. Taylor had blood pressures of 148/90, heart rates up to 180, and fevers again. This all started the same uncontrolled shaking fits that he had last weekend. Tylenol brought the fever down and the rest of the numbers followed slowly. We finally got to sleep around 3am.

Today has been improved. He has been fever free since 5am, had his MRI of the brain, and we were even moved up to the floor! He has been very nauseous and we have been rotating 3 meds, plus his patch, without being able to get control.

He has now been put on a PCA. He loves these because it gives him some control as to when he gets pain meds. This fever and the sedation/pain meds given when he was intubated have caused him to need more pain meds than usual. The additional meds coupled with being intubated 6 days have left him groggy and tired too.

As far as infection goes his blood cultures remain positive and it looks like we will remove his port in the near future. There was confusion with his draw yesterday so another sample was taken last night and we don’t have results from that yet.

I am hoping for a super quiet night. The fatigue of a week in the PICU, lack of sleep, and stress of ventilators has left me exhausted. We both really need a quiet night. Something about the dark brings out the worst in illness though. I no sooner got in the shower in attempt to try for an early evening when Tay’s nose started bleeding…that was an hour ago and it is still bleeding. While this doesn’t seem like a big deal, the blood he swallows reeks havoc on his already upset stomach.

Again we appreciate all the e-mail cards sent to the hospital, visits, and cards. We love you guys and are so thankful we don’t have to face this craziness alone.

Written Sep 4, 2012 12:33am

Sorry I didn’t do an update last night. It was the first really quiet day. With the long holiday weekend the hospital is on a skeleton crew, so not much happened at all. I don’t know what is with us and being in the hospital on holidays, but we spent Memorial Day here, now Labor Day and both Easter & 4th of July were narrow misses that had us released mere days before the holiday. This time wasn’t a bad deal though. We have the suite at the end of the hall that is both bigger and has windows on two sides. Last night we were able to watch (well, I did, Taylor didn’t really care) fireworks that were simply a delightful surprise.

The best news I have to report is that Taylor’s cultures have now been negative for 48+ hours!!! This means we will NOT have to remove the port. I am so happy that we asked tons of questions and that the doctors listened to our concerns. This time it appears that being a little patient has allowed the antibiotics to do their job. It ultimately means 2 less surgeries for Taylor.

We are finally to a point where we can start talking about going home. Taylor will need to have better pain control and be off the PCA, but I think it is reasonable to think the end of the week. While we are in here we are going to do some house cleaning type things, like getting his g/j tube replaced & playing around with some new supplies.

Both Taylor’s MRI & Echo-cardiogram look good, as we expected. The blood transfusion has pushed his counts closer to that of a healthy 11 year old boy. We know they will drop as his chronic anemia sets back in, but for now he has a boost that I pray will give him just the fuel to heal. The only statistic that is still concerning the docs is his elevated liver enzymes. They are going to do a review of meds and get back with us later today.

The big thing nagging at me and putting a damper on us celebrating too much is Taylor’s demeanor. He is very quiet, too quiet. It is unlike him to have guests and not want to talk to them…to have new Lego and not be jonesing to put it together. I’ve been asking how he feels, if he wants to talk, but he just says fine. I don’t know if you can fully appreciate how very strange & different this is for Taylor. I will be so happy tomorrow when his psychologist is back in the hospital, if she can’t get him out of this funk I’m not sure who could.

For today we plan to rest and chill. The past 9 days have been so long and emotional, it is nice to just relax & let our guards down. Maybe seeing some of his friends can help him out of this. Again, we just can’t thank you enough for all your love & support. It blows my mind that you all still visit, write, call, and pray. It means the world to us. We sincerely hope you enjoy this Labor Day!

Written Sep 4, 2012 12:24pm

It has been a MUCH better day today!!!

Taylor was talkative, built Legos, and played UNO with a new friend, Cameron. The world felt right again. I think you are all right, this infection hit a little harder-both emotionally & physically. It only makes sense that he may take a little longer to come out of things given the length of time his body has been fighting off disease, to come back from surgeries, & clear infections. I also think that IV nutrition, while absolutely necessary, doesn’t provide him with the strength that regular food does.

We again had lots of visitors. Thank you all for making our days so seem so much shorter & happier. I have added some new pictures that our friend Jen took so that you can see for yourself the turnaround.

We are on 70+ straight hours of clean blood cultures and I suspect Taylor will come off the pain pump tomorrow. A few more days and we will get to return home to our wonderful new house.

Hope you enjoyed the long weekend! Thank you again to all who included a stop by Children’s to see us. Lots of love!

Written Sep 5, 2012 3:24pm

I will start by saying that Taylor has had a very good day overall. He has been outside for the first time since we came in the hospital, done a homework worksheet, and built lots of Lego. He also enjoyed hanging out with our visitors today.

Basically nothing much happened today. It was actually a little frustrating. The two things that need to happen in order for us to get home are 1) Convert Taylor from the PCA to a home pain regimen and 2) Reduce Taylor (if we can) to a 16 hour TPN (IV nutrition) from the current 24 hour TPN. Neither of these things has even begun to happen.

I don’t think we will have any trouble converting the pain meds, as we have done this so many times in the past. The TPN may be more tricky. Taylor has had some elevated blood sugars, which is why they spread his TPN over 24 hours to begin with. I don’t think Taylor will be overly sad to remain on 24 hour nutrition, at this point he is so used to carrying around oxygen so it isn’t that different. The big deal is with school. He is unable to be connected to IV fluids at school and it was suggested to me that homebound tutoring would be the best solution. I am hoping it doesn’t even become an issue, but there is NO way that I will agree to this right now. Anyone who saw Taylor during the first week of school can attest to the fact that he thrives in that environment. He absolutely NEEDS to be with kids his own age. Trying for the moment to set that aside and pray that we get down to 16 hour days without problem, thus making everyone happy.

It has just been one of those days though…also, found out that Make-A-Wish has to back out of the Australia trip. Taylor is going to be devastated. Until we know more about this I am not going to tell him. Praying I wake up tomorrow and find out that all this “bad news” is just a bad dream.

I guess the real issue is that I am just MAD! For more than three years we have been promising Taylor he will get better, yet unable to keep that promise. Oncology promised Taylor it would be one year then he would be back to normal…we all see how well that promise was able to be kept. Now, I get to tell my son that the thing that he has been looking forward to for more than two years, the trip he was promised…well, that too is gone. When we were four days away from going Taylor ended up in the hospital. He cried and was so sad. The one things we did? Promise him that he would be able to go, it was just postponed. I am not criticizing anyone. I am not mad at any one person. I am FURIOUS at the circumstances that have Taylor the one who is constantly hurting and disappointed. How will we ever get him to believe anything at all? I don’t even believe what we are told anymore.

Forgive the venting, it is day 10 of what has proven to be one of the harder hospital stays thus far. Taylor has once again been quiet, perhaps playing off my general malaise today…though most of this news I just now found out myself. Tonight I just feel knocked around by life. Hoping that a night of sleep will perk me back up. Sending all our love…

Written Sep 6, 2012 2:46pm

Exhaustion is the word of the day. Taylor is exhausted, I am exhausted, Shane is exhausted, and we have about exhausted all our options for making Taylor better…not for this stay, but REALLY better.

Taylor’s pain has been high today. He has been tired and very sad. I hate to tell you that he was back to the quiet Taylor from a few days ago for much of the day/night. It is painful seeing him this way and having zero way to fix it in the short run.

Today we had a new doctor added to our entourage, a liver specialist. Taylor’s liver enzymes (ast/alt for those for know more than I do) are elevated and have been on the rise even as he gets better. The main concern is that kids that are on TPN (IV nutrition) often have issues with their liver & can even have liver failure. I have so little knowledge of the liver that this truly scares me. I am trying very hard to push aside worries & concerns until we have more information. The liver doc ordered further blood testing and an ultrasound of the liver/gall bladder, all of which will occur tomorrow.

Until we have more answers we wait…and wait some more. We are working on getting Taylor’s nutrition & pain control to reasonable levels so that he can at least be home. It is looking more like Saturday at this point, but still hoping for Friday.

I also wanted to clarify things in case my last post was confusing. Make-a-Wish did NOT take Taylor’s wish away. Taylor’s doctors have decided that he has reached a point where he is no longer able to travel, at least at that distance. He will get a wish & I feel terrible that anyone thought for a moment than Make-a-Wish was at fault. We will be meeting next week to figure things out. We have been so loved and treated so well by MAW and are so grateful that organizations like this exist!

Many of you have also asked about my dad. He has completed the second round of his chemo plan and is home now with a mild case of pneumonia to go with his neutropenic state. If all goes as planned his counts will steadily rise and he will be ready for the third round a week from Friday. I am hoping to get out of here soon and be able to help him out. It feels awful to be able to do so little for him right now & (not for the first time) I wish so much that I could just be in two places at one time.

Tonight as I get ready to sleep I pray for peace from the anger, frustration, and exhaustion. It is so hard to have so many emotions running rampant, yet no one and nothing to direct them at. There is no where to place any blame, everything that is happening is beyond a single person’s control. I try to take a deep breath and remind myself that we are surrounded by love and people who just want to make everything better. It is then that I am grateful that we do not have to face any of this alone.

Written Sep 7, 2012 2:02pm

Taylor went down for his ultra sound bright and early this morning. The ultra sound showed mildly enlarged kidneys, liver, and spleen. It also showed sludge in the gall bladder. These findings coupled with elevated liver enzymes likely mean that the TPN he has been receiving is beginning to cause his liver to deteriorate. There isn’t any other choice but to keep Taylor on the TPN since he is unable to eat. Tomorrow the doctors plan on running another series of blood work, some of which will take a week to get results. As of tonight, they do not plan on getting a liver biopsy, but may do so after we get the results of these other tests.

We have been able to come down off Taylor’s PCA a bit, but he is still on the constant IV pain meds so it isn’t looking good for us going home tomorrow. If he can tolerate the decrease through the night, Saturday may be the day we break free. They think that the enlarged organs are causing him more pain so it will be a balance.

Today we were able to get Taylor’s nutrition down from 24 hours to 20 hours without too much change in his blood sugars. Tomorrow we will try to go back to the 16 hours it has run at home in the past and pray that works well.

Taylor was able to talk to his psychologist today and I think that helped some. He is just very down from fighting the infection, missing school, and general hospital fatigue. He has had two amazing Lego sets delivered anonymously which has made the days pass faster and perked him up. Thank you to whoever did that and got my son to light up like Christmas morning.

Right now we don’t know very much in the way of a plan. The liver issues are probably going to be a long term wait and see kind of thing. I understand there may be a medication that will prolong any liver disease, but the only way to reverse these effects is to stop the TPN which isn’t an option. For now we are focusing on getting out of the hospital and being in our new home. Praying hard that this can happen over the weekend. Taylor is anxious to return to school and see his friends.

Written Sep 8, 2012 3:40pm

I should totally be sleeping right now, but am so happy that Taylor had a better day that I had to share. After school today Taylor’s friend Emma came up to the hospital and spent time building Lego with him, helping him with homework, and even getting him to play outside. I have posted a bunch of new pictures of them playing together and am just elated that for awhile he forgot about meds and tubes and liver enzymes.

I am not going to even post about the fear in our hearts and the lab work today. I want only to celebrate that Taylor was an 11 year old boy playing with his friend. Tonight as we drift off to sleep we pray for no surprises as we rest and we give thanks for our amazing friends & family who visited today. Mark, Randy, Jen C., Jen K., Emma, and Dana, you brightened our day more than you could know.

We hope to go home tomorrow, late afternoon. I will post more on everything before we go.

Written Sep 8, 2012 11:50pm

I really want to scream expletives, but will settle for…Crap! Taylor had the best time with Emma last night, even sneaking his oxygen off for a few pictures…around midnight/one o’clock things took a turn for the worse again. Over night he spiked a fever, was vomiting, and had a drastic, sudden onset of increased pain.

The doctors are running blood cultures and we have already been down to x-ray. Waiting to see what comes back. Needless to say, we will not be going home. I am super glad we stayed an extra night just to be safe.

Written Sep 9, 2012 12:52pm

Between the vomiting, fevers, and pain this has been a very rough night/day. Neither Taylor nor I were able to sleep much last night, so we are hoping to call it an early night tonight. The surgery team got involved this morning and there was concern that Taylor had another intestinal blockage. After a day of worrying about more abdominal surgery & of fighting to get 1000 ml of contrast into a child who cannot have food or fluids, I am very happy to report that the surgeon just came in to inform me the CT Scan was clear. No blockage or perforation!!! Fantastic news!

The Infectious Disease team came by and ordered a series of blood work & cultures. They are certain this is an infection and feel strongly that this is a new infection. Taylor’s white blood cell count quadrupled in 14 hours and he has been started on two more broad spectrum antibiotics. Once again we are waiting for cultures to grow so that we know what we are dealing with.

Taylor’s pain is mostly controlled again with a PCA and he is at least happy to have the button back. He was able to rest some and I did A LOT of laundry trying to keep up with dirty clothes & blankets today. So very thankful that they have washing machines here to wash his special superhero snuggies, they make the pain & vomiting a little better at least.

All-in-all it was a very long, boring, uneventful wait and see day. I am so thankful for Derrick whose visit broke up the monotony and fear the day was full of. Thank you for hanging with me for a little while and letting me vent.

I doubt we will hear anything else tonight. Taylor and I are planning on snuggling and watching Batman Begins. I will update again in the morning, by then we should have positive cultures and know what we are up against.

Written Sep 10, 2012 2:18am

Last night was much improved. As usual, Taylor has thrown everyone for a loop and there aren’t a lot of answers. The theory is that he has a gut related bacteremia. This morning his nausea seems to be controlled with just two meds, his fever is down with Tylenol-we are trying without it now, and his tummy is not distended anymore. They are still looking for the culprit and cultures are negative at 24 hours, great news but strange. Pain is once again the worst issue. It is being pretty well controlled though with a PCA.

Since I don’t have a lot of information on the health front I wanted to take a minute to address a question I have gotten a bunch lately. Many people have asked me why we don’t choose to do home schooling or at least home-bound tutoring. I know that everyone has Taylor’s best interest and wants what is best for him. We have spent an enormous amount of time considering all options for him and, in the end, we know that the social elements of school just can’t be replaced in our current lifestyle.

Home-bound tutoring used to be the perfect solution for us. Taylor was able to have a tutor come out when he was hospitalized, be at home when he needed, and attend class at school as he was able. This option no longer makes good sense. With budget cuts, etc. the program has had to make changes and tutors are no longer allowed to come to the hospital. The program has also changed it’s rules on going to physical school when you are able. The parameters are so that he would only be getting tutoring when he is well enough to be home, but not go to class. This is hardly ever the case for Taylor. It also only provides 5 hours of instructional time…not a lot.

Home schooling…I don’t know where to begin with this. First, I am not qualified to be a teacher. Anyone who reads my entries frequently will see that spelling and grammar waved bye-bye to me once I finished my own school. I don’t even pretend to think that I could take the place of Mr. Tharp or Mrs. Duncan. For starters, I don’t know the first thing about creating a lesson plan. Second, Taylor & I are together 99% of the time. What preteen child wants to be with their parent every second of every day? He absolutely NEEDS to have whatever opportunities, no matter how small, to have some independence. Third, so do I (NEED my independence). I am “on-call” 24-7. I have slept with a monitor by my head (at a minimum) for the last 3.5 years. If you have never had a child that has special needs like that, you cannot possibly know the stress that entails. His being in school allows me to have time to go to my own doctors, see my own psychologist, and be a woman, not just a mom. Lastly, we are home schooling. The hours he is able to attend school are not near enough to help him move up with his class. Taylor & I spend 3-4 hour blocks several times a week on school work to keep him where he is.

Many of you might wonder about infection risks and if not going to school would help him stay healthy for longer periods. Some would argue yes. In Taylor’s case Infectious Disease told us that if he were in an actual bubble he would have gotten the infections he keeps having. These infections are caused by an overgrowth of his own bacteria (which we all have & need to have) in an unhealthy intestine. We do recognize that there is an increased risk going to school, but the benefits so out weigh the costs for us.

The bottom line is that Taylor is a highly social kid. He NEEDS to have friends around, be independent from me, and have some semblance of normalcy. He has often gone through periods of depression during the hospital stays and I know from the bottom of my heart that he would suffer from far worse depression if I kept him more secluded than he already is. For us life has always been about quality vs. quantity. None of us know how long we have, but we all have the right to really live the time we do have.

I want to say thank you to you all. You care so deeply about my son and want what is best. I know that when you make suggestions about school, meds, going to other doctors, your heart is in the right place and you are being genuine. I LOVE that my Taylor has touched your lives so much that you feel compelled to help. That is truly an inspiration to me. I hope that you all know that I appreciate your ideas and they encourage me to question my decisions. I pray daily that the decisions I make are the best ones for Taylor. In the end I can only say that I have given 110% and always done what I truly felt was best.

Written Sep 10, 2012 3:38pm

Not much to report tonight. Taylor is sleeping well and everything seems to be stable for the moment. The only thing that is “new” is that he has a sore throat tonight. Hoping, praying, begging for a good night’s rest without any fevers, increase in pain, or general craziness. It is getting more and more frustrating not having answers to all that Taylor endures.

Taylor got to visit with his friends Jordyn & Sydney from school and they worked on a new Star Wars Lego ship a bit while I chatted with their mom, Jen. Mark & Randy came up and got me out of the hospital for a stolen hour away at Target. Believe it or not, it was wonderful. Shane was feeling well enough to come up today and we spent the evening watching the Bronco game. Taylor & I were very sad that the Steelers lost, but it was a good game for the most part.

Well, since there is little to report, I am going to try and rest awhile. We are desperate to get home and sleep in our own beds. Tonight’s prayers are that we are able to do just that very soon.

Again?

Written Sep 10, 2012 11:43pm

What the??? I no sooner ended my last entry and laid down to sleep, not kidding it wasn’t even 15 mins, before Taylor was vomiting and had increased pain. He also had abdominal distention between the belly button and the lower left rib that was significant. This is exactly like Saturday morning, minus the fever.

Surgery was in here, along with many other docs, most of the night pushing on his belly and messing with his stoma. Their concerned about a hernia or blockage that got mildly better with all the contrast he had to tolerate Saturday.

Today will be a lot of wait and see, probably blood work & possibly more imaging. I am begging & pleading for answers and a plan to help Taylor get better. Selfishly if that plan could include a little sleep for me I would be even more grateful.

Written Sep 11, 2012 12:42pm

There is very little to share tonight, but I know you are all worried and praying for answers. Taylor has been able to rest more today and they have increased the dosing on his PCA so that his pain is better controlled.

The doctors are at an impasse. Some of Taylor’s issues point towards an infection, but the cultures are coming back negative. Some of Taylor’s concerns point to some sort of intestinal issue (a hernia, etc), but the CT Scan came back fairly benign. The issue really is that Taylor never presents the way anyone would expect & that he has had so many surgeries on his intestine that imaging doesn’t give you the clearest picture.

There was talk of removing the port “in case” it was causing an infection, but after speaking to Infectious Disease (ID) I feel safe that we don’t need to go that route without better evidence that there actually is a line infection. ID has opted to leave him on the high dose, broad spectrum antibiotics (Meropenem & Vancomycin) for at least another 24 hours.

The plan right now is my favorite old stand by…wait and see. I agree it is our best option, even though I don’t like it. Imaging is ordered if Taylor’s stomach pain increases or his distention gets worse again. I am hoping that if we are patient Taylor’s body will be able to tell us exactly what it needs.

Thank you all so much for your Facebook messages, texts, visits, etc. I can hardly believe that there are over 9000 personal messages of support on this site alone!!! I hope you know how much that helps us to dig a little deeper, to find the extra bit of energy when we are so depleted.

I hope you enjoy tonight’s picture as much as I do. My friend from high school, Katja, and her lovely children brought Taylor the biggest bear I have ever seen. Taylor has had a rough day, but his eyes lit up when they saw this bear. He immediately began snuggling with it and in no time at all was sound asleep. In this picture I see the fragile & innocent little boy that I love so much.

Written Sep 12, 2012 12:15pm

Still not much to report. Today was an uneventful watch and pray for no excitement kind of day. Taylor’s pain was controlled most of the day and he even got up to build some Star Wars Lego and visit with our visitors. He wore out quickly and feel asleep as we were starting to watch Snow White & the Huntsman.

I was able to rest more last night and even got a quick nap in this afternoon too. The sleep has helped my headaches greatly and I am very thankful.

Tonight we are hoping that Taylor will remain fever free and sleeping. Providing that there isn’t any drama tonight, we will begin the PCA wean down process and, hopefully, work towards an end of the week discharge. It is nerve wracking thinking that we might go home without any answers to what these last two “episodes” have been about, but I know Taylor NEEDS to get a break from here. (As do I.) Tonight will be the true test since the last two episodes have been 48 hours apart. We also stopped two of the three antibiotics today as sort of a test if you will. Praying for a calm night!

Written Sep 13, 2012 1:20pm

Well, it would seem that whatever these last couple “episodes” were, they are gone??? It is hard to have any confidence in that statement when they came on so fast and so dramatically. It doesn’t look like we will be getting a lot of answers though.

The good news is there seems to be progress made in Taylor’s overall health. While pain is still increased and fatigue is still a challenge, we are going to start making plans towards getting home. It doesn’t seem to be doing him any good to be here for sure. Home is always the best medicine.

Tonight they have moved Taylor from the PCA steady dose to a higher pain patch. He does get to keep the button for as needed pain and has clinician boluses he can get too. (An IV amount the nurse can give immediately.) Tomorrow late afternoon/evening we will try to transition to oral meds for break-through pain and get rid of the PCA all together.

If all goes well, we should be getting out of here Friday afternoon/early evening. That would be great because it would give him the weekend to chill out before returning to school. I know there are two things he is really wanting to do- get a pedicure & see Finding Nemo in 3D. I am praying that we are able to do both of those things for him.

It is hard to believe, but my dad is being admitted tomorrow for his third round of chemo tomorrow. I am truly thankful that my aunt is taking him and that the hospital is just across the street from us. I can walk over for visits after Shane gets off work until we are released.

Hoping that tonight is as quiet as last night. We very much enjoyed watching the beautiful rainstorm out our windows today. It made for a perfect cuddling day!

Written Sep 14, 2012 11:31am

I decided to write a little early tonight in an attempt to get some serious sleep in anticipation of GOING HOME!!! Can you tell I am excited? It has been three weeks and we are just dying to spend the night in our own beds, see our own stuff, (Toys for him, plants for me) and have some privacy. It isn’t clear if it can actually happen tomorrow, but I am keeping my fingers crossed.

Taylor had a pretty good day today. He was even a little sassy…always a sign that he is feeling better enough to be irritated by the hospital. We took a walk today and he played Lego a bit, as well as messed around on the computer. We tried homework this afternoon, but he had a really hard time focusing.

Taylor is getting his IV IgG that he normally gets at National Jewish tonight. I am very grateful that this was able to happen and save us another afternoon in the hospital next week. We will already have two days of follow up appointments & I am really trying to keep him away from the hospital setting and enjoying normal 11 year old stuff as much as possible.

Please, please, please, no surprises tonight! Praying everything goes as planned and we can get home safely for Taylor.

Written Sep 15, 2012 4:47am

Decisions…When you dream of being a parent you think that you are going to have to make lots of decisions. What school do you choose? How strict should you be? Does he have time for swim team and football? I never have been one to shy away from making decisions for Taylor, always knowing I had his best interests in mind. That said, I never in a million years thought that I would be making the difficult choices we are faced with everyday, let alone the sheer volume. Today is no different-once again I have a lot of decisions to make.

Last night was a little bumpy. Taylor’s oxygen levels dropped and pain got worse. We were up much of the night. He is currently on a lot more pain meds than he was when we were admitted. I spoke with our GI doctor and he, along with our surgeons & primary, feels that the increase in pain is due to Taylor’s gallbladder. The gallbladder helps to process the fat in the foods we eat, or are given. When it isn’t working well it fills with sludge and causes pain. The long & short of it is that Taylor’s gallbladder needs to be removed.

During the surgery to remove Taylor’s gallbladder our doctors also want to biopsy Taylor’s intestines, biopsy his liver to see how far his liver disease has gotten, and take a look at his enlarged spleen. We are hoping that the spleen doesn’t need to be removed, as it it plays a role in keeping our immune system up. The decision becomes when do we do this surgery?

Taylor’s surgeon who we know, love, & trust is out of the country for two weeks. It would be ideal for him to perform the surgery since he has the most knowledge about Taylor and could do a comparison. The down side to waiting is that Taylor will have increased pain until we can remove the gallbladder. At this point Taylor is on the max amount of pain meds he can be on and still go home safely. It makes me very nervous to go home without a back up plan for pain. Taylor & I have discussed this though and he wants to take the risk. So at the moment it looks like we will try to schedule the surgery for the week our surgeon returns and pray that we are able to keep Taylor’s pain in check.

The other possible hang up in going home is Taylor’s blood work. Taylor’s white cell count has dropped very suddenly, his red count & platelets are down too. No one quite knows what to make of this and is nervous to allow him to go home with little ability to fight anything that comes his way. Our team here is currently trying to get a hold of Taylor’s immunologist at National Jewish to see what they think.

Nerves are super high and we know there are risks in going home too soon. However, I do think that we will be discharged tonight or tomorrow and given the chance to have a break from the hospital before returning for surgery. Taylor & I both want so badly to go home & pray that it is what is best. We also are both willing to accept & trust if our prayers for home are not yet answered.

Written Sep 15, 2012 10:10am

The doctors have decided to keep Taylor another night. He has been in a lot of pain today and very tired. They want to make sure that finishing off the antibiotics doesn’t cause problems. They also want to recheck his counts in the morning. We are now hoping to go home tomorrow.

Written Sep 16, 2012 3:52am

We are going home. I just got the final okay. I am happy to be getting out of here, but this is scary too. Today for the first time in two years I have figured Taylor’s ANC after looking at his blood work. His ANC (Ability to fight infection) is 500, down from 900 yesterday (which I promptly figured after seeing it so low). That was the number in which oncology would be barely letting a kid go home-if they were on their way back up. Our doctors were concerned enough to ask oncology if there was anything else they should do, before even talking to me. This number, in connection with the CT scan showing swollen lymphnodes in the abdomen, scares the hell out of me. I cannot understand why his counts would be dropping if nothing was happening.

The doctors are letting us go home and come back for counts Monday. We will see if things have improved by then. They are hoping that this is just a reaction to his septic infection. This could be a result of his liver/gallbladder issues getting worse. Bottom line is that at this point there isn’t anything they would be doing & we can do nothing at home.

I probably won’t write again today. I hope we can get home and chill out in our jammies. Know that if there is something to report I will do so. Lots of love.

Written Sep 18, 2012 9:43am

Well we have been home two days now. It is nice to have some privacy & sleep in a real bed. Taylor really wanted to go to the Lego store & I am very glad we did that first thing Saturday night.

It should’ve been so obvious this stay at home was going to be hard when we got to my car after being released only to find it wouldn’t start. Thanks to incredible friends it is running now. Our garbage disposal and fridge also picked this weekend to have issues…when it rains it pours. Happy that we are renters and our awesome landlord has rescued us.

Sunday we spent some time with friends and were even able to get a hot tub that we’ve been given over to our house. We are hoping to get it set up & running soon in hopes that it will help Taylor’s pain and at least let him get in the water-he still misses swimming.

Sunday afternoon Taylor started getting very tired & his pain increased. He is already getting pain meds every 4 hours and is now using a heating pad to try and make things somewhat more comfortable. He woke up screaming this morning at 4am & I thought for sure we would need to go in to the hospital. He still wants to try and wait for his surgeon (surgery to remove his gallbladder is scheduled for next Tuesday morning) and we will continue trying to help his pain any way we can at home.

Taylor was very sad that he couldn’t make it to school today, but it is all he can do to sit up, let alone stand up. His pain is so bad that I have to help him get to the bathroom. We did make it to the Children’s satellite office and get his blood work back. His liver enzymes have gone up drastically. This was not the news we were hoping for. I’m very scared of what all this might mean. The numbers in combination with the pain & enlarged spleen, liver, & kidneys don’t paint a pretty picture. Our prayers are that his liver is not as far gone as it may seem.

Taylor has 5 doctors appointments on Thursday. We will be at Children’s from 9am-3pm. We hope that we are able to get some answers and a plan then, should his pain allow us to stay home that long. We very much appreciate all your love & support. I will post if anything changes or Thursday following our appointments.

Written Sep 20, 2012 11:25am

Many of you have already heard, Taylor came into the hospital again this morning through the ER. He had a fever of 106 degrees, increased pain & heart rate, and low blood pressures.

Currently we are in the ICU on blood pressure support medications. They drew blood cultures which came back in less than 5 hours (record time) showing positive for yeast. Since this was an infection I had heard of & could pronounce, I was happy. That was short lived when I found out that yeast is a very aggressive, very dangerous infection that can cause organ failure.

Taylor will soon be heading into the OR to get his port removed. Then he will have a brain CT, CT of the abdomen, and chest CT. He also will have an echo-cardiogram. Apparently yeast likes to shed in other organs.

The doctors will be using peripheral IVs to get Taylor’s medications & nutrition in. This is a less than ideal situation because Taylor has terrible IV access, they usually blow in 12-24 hours. It also means that he will not be able to get complete nutrition, but a lower calorie “diet” nutrition if you will.

It looks to be a long night. I will update as soon as I know anything.

Written Sep 21, 2012 1:26am

So, I had no sooner posted the last entry before different doctors were here to discuss the port situation. It seems one of the PICU docs that has had Taylor many times before remembered (as I had already told the resident) what a difficult stick Taylor is & that his IVs were very short lived. His concern was that we would have no access to Taylor’s veins and be unable to give the antibiotics, medications, nutrition, and most important the blood pressure med that is keeping Taylor stable. These were my exact concerns as well and I knew from experience we would always need to have at least three IVs due to the compatibility, or lack there of, of what we needed to put into him.

The major concern of leaving the port in is that he can have pieces of yeast/blood clot and go to his brain. This is a small risk, but a scary one. I am always so liberal about keeping the port, but this is a different type of infection and it sticks to the port mercilessly. We will need to surgically remove the port in the next day or so. I am praying that we wait long enough to get Taylor’s blood pressure stable without meds and not too long enough that it is dangerous. I HATE having to make these decisions!

Over night Taylor required a little more Dopamine to keep his blood pressures stable. His fever spiked again at 104. He is stable, but miserable.

Today we are going to be getting all his CTs and Echo to make sure that the yeast has not affected any of his organs. We will also be discussing his poor blood work & when to pull the port. For the moment I am praying that the yeast has only made it’s home on the port and no where else.

Thank you so much for your love & support. I will update whenever there is anything to tell.

Written Sep 21, 2012 1:28pm

It has been a very long day. Taylor has been sleeping the bulk of the day, waking only when he was asked to. His mental state has been slightly altered. When he tried to talk words came out slow and slurred at times, other times his responses were inappropriate. The ICU team is on top of this and ordering appropriate testing.

Taylor had his echo-cardiogram today, though results are not yet back. He also had a CT of the head and abdomen, both of which appeared normal and are waiting final reads. These are good signs.

This evening Taylor had a PICC line placed and his port surgically removed in an attempt to gain control of the infection. He came back from the OR intubated on a ventilator and on a Ketamine drip for pain. We are hoping that both of those will be short lived.

It is good to see him resting comfortably, all day he looked like he was struggling to breathe. We are hoping that the night is quiet and restful. He has not had a fever now for 12+ hours and his blood pressures have remained steady, although he is still on pressure meds to keep them that way.

The next few days will be spent waiting for negative blood cultures and trying to get ahead of the infection. Right now he is on four different broad coverage antibiotics/anti-fungals. We hope that as we learn certain strains, etc. we can get those down so as to limit his antibiotic use and keep them in our arsenal. (You can build a tolerance which only encourages super bugs.)

Thank you for your continued support & love. I will do my best to keep you all informed.

Written Sep 22, 2012 5:06am

Not much to report. Things were stable over night. Taylor’s blood work is a hot mess right now. I am trying to chat with the liver team to figure out how to help him and what to do about the gall bladder that is causing so much pain.

The PICU team has ordered a spinal tap to search for yeast in the spinal fluid. That will happen this afternoon. We hope that later this evening we can try some pressure support trials to see if he can come off the ventilator.

He has been flirting with a temp again all morning and still needs the blood pressure supports. Overall he does seem more “with it” right now though.

As usual there are most questions than answers.

Written Sep 22, 2012 10:15am

He is off the ventilator!!! 🙂

Written Sep 22, 2012 12:33pm

As you know, today we made progress. This evening Taylor came off the vent and is maintaining on his own. This is a huge step and it makes me so happy to see him smile & hear his voice. We are still having low grade fevers, low blood pressures requiring Dopamine support, and positive blood cultures…one step at a time.

Taylor is off the Ketamine drip and now on a PCA for pain. It makes him much happier to have the pain button…something he has some control over. He also had a spinal tap today. It didn’t go very smoothly, in fact they ended up trying twice before they got him. They are checking his spinal fluid for yeast. In addition, his eyes were checked out by an ophthalmologist for the same reason.

For tonight we are grateful for the progress made and will let that fill our hearts with peace…hopefully enough so that we can rest. Sleep well my friends!

Written Sep 23, 2012 1:00am

I haven’t been sleeping well this hospital stay and as a result have had a lot of time for reflection. I have thought a lot about how many doctors, nurses, support staff, cleaning staff, kitchen staff, volunteers, etc. that we have come to know, actually KNOW. We know their names, their children’s names, where they are from. We have seen clinical assistant’s go to to school & become nurses, residents become fellows, and in one case, a resident is now an attending.

I have learned to take 15 minutes for breakfast after the resident has done morning rounds, but before the team rounds together, otherwise you may have missed your chance. I know that during those 15 minutes, if you are lucky and the phone doesn’t ring, you can sit on the patio and stare out at the gardens. For just a little while I can pretend we are in the mountains on a “getaway” and Taylor’s just inside the cabin still sleeping peacefully.

I have realised that around 8:00 at night the hospital goes quiet for about an hour before night meds, etc. I like to shower during that time. I know that I can cry without upsetting anyone, no one needs to know because the water drowns out my tears. I can pretend it is a waterfall in Tahiti and Taylor is resting peacefully on the sand banks.

We have learned to make lemonade out of lemons…to never take an air mattress and other “essentials” out of the trunk of my car. What I have NOT learned is how to make it any easier to watch Taylor hurt. There is nothing anyone can say or do to take away the excruciating pain in my heart as I watch him suffer through pokes, tests, surgeries, disease, or infection. No matter how much I can pretend the patio is a veranda in Vail, I CANNOT pretend that Taylor isn’t suffering.

You all know how much I love my son. I also love how much he has touched all of you. I know that he is doing something very special here and I am proud of that. I do desperately wish that he didn’t have to suffer so much to do it.

I am rambling now…

I know you all want to know how the night went and it was fairly good. He is now able to be back on his home oxygen levels and has been fever free for the night. We have stopped the Dopamine and he has maintained pressures of 90/40 on his own, not great but far better. They have been able to narrow down the antibiotics now after getting exact strains of yeast. I just got a report of clear spinal fluid and they didn’t see anything on the echo-cardiogram. He is looking much better and has been much more alert.

Pain control has been the main problem as of the moment. I think they will be putting him back on the Ketamine drip (they stopped it last night) to try and save narcotic use. With him, hopefully, getting his gall bladder removed on Tuesday we need to save the narcotics for after his surgery if we can. I won’t let him be miserable, nor will his pain doctors.

Before I sign off this morning I want to ask a favor. We have been locked in a hospital room for more than a third of our lives during the past three + years. We have missed special events at school, weddings, vacations, and much more. Please if you have even 15 minutes to spare today, do something for just you. Take 15 minutes from the things you HAVE to do and do something you WANT to do. You never know when you won’t be able to make decisions like that, and I promise the dishes will still need to be washed in 15 minutes.

Written Sep 23, 2012 1:47pm

My period of reflection carried into the day while Taylor rested. I read all of your words of love and encouragement. As I did so I wondered about the past three years through your eyes. What it must be like to be a friend of ours??? I imagine it is a very hard position to be in. Every phone call, post, or visit must bring an anxiety. You will never know…will this make me sad to hear this or is this good news.

I imagine that each time you have something wonderful happen you wonder, “Should we tell them or will this be rubbing it in?” Worse yet I KNOW that some of you don’t share your struggles for fear that they will further burden us. I really hate how one sided my relationships have become.

What I want to tell each and every one of you is that we love you more than you could know. We appreciate the millions of trips you’ve made clear across town just to make sure we are alright or bring us something from our house. We cannot describe how thankful we are for all the help you give us…watering plants, moving, painting, helping with our car, and so much more. There are no words for the gratitude we feel for your tremendous generosity of your time, your fund-raising, your money, your gifts, cards, and support. There is absolutely NO way we would have gotten this far in our journey without your love, your friendship. Tonight as we go to sleep in the 8th floor suite (that’s right, we are out of the PICU!!!) we are filled with gratitude & love for each and every one of you.

Today has shown improvement for Taylor. He is doing well enough to be in a regular room. Taylor has been fever free for close to 24 hours. We are still working on controlling the pain issues, but have both Ketamine & a PCA to help him through. Taylor’s platelets and red blood counts are both extremely low and will likely need to be transfused tomorrow barring some drastic changes.

We don’t know what the next days will bring, let alone weeks or months. What we do know if that we absolutely could not have a better support system to help us through, and for tonight that is enough.

Written Sep 24, 2012 11:40am

There is little to report tonight. Taylor has had a very uneventful 24 hours. He has remained stable, holding decent blood pressures & fever free. Pain has once again been the biggest hurdle.

Today he has been VERY sleepy and has spent most of the day in and out of sleep. His blood counts were lower still today and tonight he is getting a transfusion of whole blood. Platelets will likely need to be given if he is indeed able to have surgery as scheduled Tuesday morning.

This has been a crazy boring weekend. With Taylor sleeping and Shane having to work, I have twiddled my thumbs a lot. My mind has been racing and I have found it hard to focus long enough to read. (Maybe the new J.K. Rowling book that comes out this Tuesday will change that!) When Shane got here tonight I did take a little break downstairs for an hour and a long shower.

Tomorrow we will find out if Taylor will be able to have his gallbladder removed. We are praying this can happen, as it is the source of his increased pain. It doesn’t look like we will be able to put a new port in, so he will likely need another surgery next month…I don’t even know what to say anymore, it is all so overwhelming and unfair.

We hope that you enjoyed the first weekend of Fall. Wishing you lots of love!

Written Sep 26, 2012 2:52am

This should have been sent out 3 hours ago, but I keep getting interrupted or timed out of the site, ugh! So sorry that I didn’t write last night. We had a Care Conference with all of Taylor’s doctors to plan what our next available steps are. It is very hard to hear that we are quickly running out of options, but we are hopeful that something will work soon.

Taylor will NOT be having surgery today. Everyone agrees that he is too sick to be operated on. Taylor’s cultures from the end of last week are growing yeast after 4 days, which means we aren’t getting a hold of the infection quite as well as we thought. I feared this was happening since Taylor has been so tired and weak. It literally took all he had to move to the chair yesterday for a couple hours of sitting up…or rather, laying down, in the recliner. He has been awfully quiet too.

The biggest concern with the yeast still growing so late is that it is hiding somewhere. We checked all the organs and places it likes to lurk, but I have been told it is very sneaky. Most likely it is still growing positive as a result of the PICC line that was placed. If this is the case, it too will need to be removed.

Central Line access is fast becoming a problem. Taylor has had trouble with infections and had to have many lines removed. At this rate the surgeon fears we are going to run out of places to put them. This is extremely important with him needing his IV nutrition and often times life saving medications, like blood pressure meds.

We talked at length about Taylor’s intestines. We are still hoping, praying, and begging to get into Nationwide in Ohio. The staff here is working with them on any recommendations that can be done here as well. The fact is that there are not many more testing options they know to do either. There is always the transplant option if, in fact, Taylor is a good candidate. What we know about bowel transplants, while limited, is that they are not incredibly successful. The bigger problem may be that his intestine is leaking bacteria/fungus. The past two, maybe more, infections were thought to have been cause by his own gut and there is no good way to control that. (There isn’t actually a hole it leaks out of, it is absorbed or transferred through the blood/tissue.)

During the meeting we discussed many “out of the box” options and what may or may not be worth trying. We discussed inserting a catheter into Taylor’s ostomy and “flushing” his remaining intestines. This MIGHT help flush some of the bacteria and lessen the infection frequency. It MIGHT also cause extraordinary amounts of pain since we believe that his large intestine has completely shut down. It would be something that I would do at home for him once a week or maybe daily if things went well.

Ultimately I expressed concern that I do NOT want Taylor in the hospital more than he is home. We expressed concern for his comfort and pain and how to balance that with hospitalizations and procedures that we think will truly get us good information that can help Taylor. There aren’t a lot of definitive answers after our meeting, but I think everyone has gotten on the same page now.

It is looking more and more like Taylor will be in the hospital for a pretty lengthy amount of time this stay. We already have one week gone and we are likely looking at another week just for infection purposes. Then we are looking at a possible “trial” epidural/pain pump implantation. This would be a permanent (12-18 mo life span) pain pump that is placed in his spine. The goal is to get him off of narcotics, while controlling his pain in an attempt to help “wake-up” his bowels. Narcotics are notorious for causing the intestines to slow & while we know it isn’t the complete problem, it certainly may add to the issue. The risky downside is that he will be much more susceptible to meningitis and with his infection history that is a HUGE concern.

After the pain is controlled with the pump and the GI tract given a chance to “wake-up” we would once again try pushing feeds slowly through his feeding tube. If this could work we would be able to get him off of the TPN and hopefully his liver disease would be reversible. We would likely still need to remove his gallbladder then, but it would be a much safer time to do so & also replace his central line and get his liver biopsy. That biopsy would let us know how far gone the liver is.

There are too many what-ifs to speculate right now. We just know that we need a lot of prayer.

Written Sep 27, 2012 1:53pm

Tonight we are sitting in the 8th floor suite watching an incredible thunderstorm with beautiful lightening. It is AMAZING! You all know by now that the snow & rain always bring new joy for Taylor and I, we are surrounded by the love of my mother…kisses from heaven. Today the rain came and washed away so much of the awful emotional stuff that has gone with this long journey.

Taylor and I enjoyed visitors from 9 am-9 pm!!! It was great to be so surrounded with love. My aunt & grandma came up from eastern Colorado to visit and brought me homemade food!!! Another friend from Minnesota came in today JUST to visit US!!! We also got visits from local friends & my dad…it was lovely. All of the guests brought a new energy and it just changed the whole mood around here. I even got to leave the hospital for a sit down dinner tonight, not once interrupted by the phone!

The biggest news though was that Taylor was awake almost all day! He was talking and built Lego, talked comic books and overall just seemed so much better. This really made me feel like we have a hold on this infection finally. He was joking and being his normal sweet, if not a little sensitive, self. It has been a long time since I have seen this.

Today was also the day of gifts. Taylor got a seriously cool new snuggie…it is of Wonder Woman’s costume, which he thinks is greatly amusing. We got a picture and will post it tomorrow so you can see just how happy he looks. He also got new Lego sets, movies, cards from school & in the mail…we were so spoiled.

The most amazing gift, however, is that once again Taylor’s school staff & students have done a fundraiser for both he and his classmate who just finished her treatment. The timing of this couldn’t be better, and I know I say that every time. I have been down to the last dollar trying to figure out where to go so many times in this journey. It is so humbling. I promised my self when we first started down this path years ago that I would try my best to not worry about the “small” things. (Small being anything I could not control that did not mean life or death.) It often feels like God is ignoring us or refusing to answer our prayers, but He so clearly is there. This money will get us medications through the year or aid in the Ohio trip…it will save us once again. Thank you hardly seems enough.

To continue the good news…We may get to go home for a break between hospitalizations. It took A LOT of discussion and preparation, but if Taylor can keep steadily improving and we don’t get anymore positive blood cultures we may get to go home Monday or Tuesday. This won’t be easy but we have some unique pain measures and a plan…one that might buy us 2 whole weeks on the outside. Weeks we plan on enjoying to the fullest.There is too much to explain but the plan is still the same, just needed to be pushed back to allow this infection to completely clear and give him the best chance to heal.

Tonight we both go to bed feeling joy. Once again our friends & family have provided companionship, entertainment, and support! I’m not sure how we got so lucky, but I am so very thankful. Lots of love.

Written Sep 29, 2012 1:28am

Please forgive me for slacking with the update again yesterday. It has been busy around here in very positive ways. Everyone sees how precious time is for us right now, especially out of the hospital, and AMAZING things are happening. I will tell you all about them after a quick “medical” update.

Taylor has had ups and downs the past couple days primarily with pain. I don’t really see we have many ways around this, but do feel like we have the best possible plan in place. Infection-wise we are in a good place now. We have a culture negative after 5 days and are hoping to make that two cultures this afternoon. It is looking VERY good for our goal discharge date of Monday.

Emotionally things have been all over the board. Taylor has been the highest of highs and the lowest of lows in a matter of minutes. Depression is awful right now & we know the best cure for him will be his own home. He always flourishes at home, so we will get him there.

You would not believe the magic that is happening around us. Taylor is getting visits, cards, gifts, etc. from the most unlikely places. We have reconnected with friends I haven’t seen since Taylor was born. You all NEED to know that it is these incredible things that are keeping him afloat right now. My gratitude to you is immeasurable!

Yesterday Taylor was able to take his first walk, first real shower, and sit up long enough to build Lego for the first time in almost two weeks. He has been steadily regaining some of his stamina too. I am so very proud of him and his fight. He constantly gives his best to push through.

I left for awhile last night with my friend Mary that is here visiting us from Minnesota. We were able to go home and get the first half of Taylor’s Lego room done. The Lego room was low on the priority after our move, I am only one person and somethings just seemed more important… I really want to be able to surprise him when we go home and have it all set up just right for him to play and see all his special creations. I am also hoping to put the finishing decorative touches on his room while he is in the hospital. Shane is off this weekend so he will hang with Taylor and get some special one-on-one guy time while I am home finishing the projects. Hoping to get it done in about 6-8 hours. I just can’t wait to see his face light up!!! He thinks something is up I am sure, but he doesn’t know why I will be gone.

You may have heard me say this before, but we have the most AMAZING friends around us!!! The hot tub is happening!!! Taylor has wanted SO badly to be in the water. For those of you who don’t know, Taylor used to swim 5-6 days a week on a swim team. He LOVED being in the water. The ostomy bag makes it inconvenient and embarrasses him to the point he will not swim in a public pool. Obviously, living in Colorado without any Donald Trump type funding prevents us from installing a pool…BUT not a hot tub! He will be able to get wet AND get some therapeutic benefits for his pain! All of this has been donated by friends and/or their connections, and in record time. We LOVE it!!!

Also yesterday, the mother, Lori, of one of high school friends stopped in to visit. I haven’t seen her in years. She brought Taylor a ridiculously cool Lego set. She is also a consultant for Thirty-One, they carry nice tote bags, etc. Lori is putting together a party with all proceeds going to Taylor’s medical fund. I am having technical difficulties at the moment, but will put the link (along with the Wonder Woman snuggie picture) up as soon as I can. I just can’t believe we were able to reconnect after such a long time.

Another good friend is putting together a silent auction to help us pay for the crazy expenses and also make sure we get to Ohio without financial constraints. I am in awe of all the generous, wonderful things happening. She asked that I let people know she was doing this in case anyone had a donation for the auction that they wanted to do. On this note, does anyone know how we would get a charity tax ID??? That is my homework so that the restaurant that is helping can get a tax break for their willingness to help out…awesome!

There is just this crazy energy surrounding us right now. All these wonderful things taking seed. How can we even say thank you to all our friends and family? How will we ever repay all the generosity we have been granted? I am moved to tears constantly by everyone’s desire to make this awful, awful time as terrific as it can be. Thank you, from the bottom of our hearts…thank you! We love you!

Written Sep 29, 2012 11:59pm

The last 24 hours has had more excitement! We have seen so many wonderful people and had lovely visits. Yesterday was a half day so we saw teachers and kids from school. The kids brought Taylor ANOTHER wonderful Lego set. It was incredible because they pooled together their own money to do so! There are just so many levels of awesome things happening.

We also has visits with some of my church friends, my dad, and a meeting with Make-a-Wish (LOVE our grantor) to start getting that ball rolling again. Thankfully we had lots of people to occupy Taylor so that Shane & I could start planning with her. Timing worked out perfect!

Yesterday we were able to come down on meds a little and prepare for going home Monday. I was able to post Snuggie pictures. The site is weird though, so to see the full length picture you need to go to photos and click on the picture. I LOVE that you can see Taylor’s AMAZING sense of humor shine right through.

Today everything is coming into place for Taylor’s surprises. I have friends getting the concrete pad for the hot tub done today, some will be helping me get the Lego room ready, others are helping get his curtains hung and decorative paint done to complete his bedroom…It is going to be a joyous homecoming on Monday or Tuesday! I will post some pictures as soon as I can. (I am not gonna lie…I am nervous about leaving the hospital for the WHOLE day. I haven’t ever done that before.)

Taylor & Shane will be hanging at the hospital having some father/son if anyone was planning on visiting. I hope to be back late afternoon & early evening, shower & have jammie time with Taylor & a friend while we watch Hunger Games. (She hasn’t seen it!) It is gonna be another great day!

Written Oct 1, 2012 2:28am

Everything is looking good for discharge tomorrow afternoon. Taylor has been doing well on his wean down of pain meds & will be off the PCA entirely today. I feel like we have a good plan in place to control pain for the two weeks we are home. All Taylor’s doctors are on board with the plan that we won’t be coming in during those two weeks for appointments, just Monday blood draws at the satellite office by our house so that they can make any nutritional changes.

Yesterday was AMAZING!!! It was like an episode of Extreme Home Makeover around our house. About 15 friends of mine showed up and worked their tails off in order to make Taylor’s surprises come to fruition. You would never believe the amount of stuff we got accomplished!

The concrete was poured for the hot tub foundation and there was even enough to make a sidewalk from the deck to the pad. On Tuesday night while Taylor is at physical therapy we hope to place the tub on the pad and fill it. Should be usable and warm enough by the end of the week! It brings tears to my eyes to think that he will be able to get wet! I hope it works wonders for his pain.

We got decorative painting done in Taylor’s room, making red, blue, and green “frames” around these cool vinatge-looking metal super hero signs I found. Today some of Taylor’s good friends and their families are working on a mural in his Batman bathroom of the Bat Symbol! Another friend of ours with movie theatre connections got giant Avengers stand ups they were able to affix to his walls in his bedroom. It looks so awesome!!! Iron Man literally looks like he is going to fly out of the corner of his wall!

The Lego room is done too! A few of my friends & I went through 9 cans of spray air (like the stuff you clean computer keyboards with) yesterday and “dusted” all Taylor’s Lego creations. There are book cases literally floor to ceiling (vaulted on one side), wall to wall full of Lego! All we need now is a library ladder! We spray painted an old table to give it new life and put it in the center of the room as a work station. I can’t wait to see his face when he sees what we were able to do.

Last night I returned to the hospital exhausted, filthy, and happier than I have been in a long time. My friends surrounded me with love & laughter yesterday brightening my day more than they could ever know. We pulled together to accomplish these tasks in monumental fashion. I am so very grateful for EVERYTHING that everyone did to make this possible.

When I got back to the hospital Taylor’s friend Emma came up for the night and we all chilled out taking in a low key movie night. The kids snuggled together in their jammies and super hero snuggies (see above picture) for The Hunger Games and for a few hours everything was just perfect.

Full of love & gratitude for you all!

Written Oct 2, 2012 12:43am

About an hour ago the last medication that needed to be weaned down before we got to go home was turned off. So far so good. If everything goes as planned his pain will stay controlled and his nutrition will finish up late this afternoon around 3pm.

Yesterday we had a bit of a surprise (Why things still surprise us is probably the real question?) when Infectious Disease decided that Taylor would need a new PICC line before we were able to go home. There is concern that the line he has now was placed when he still had positive blood cultures and with yeast being a devilish thing to treat they want to play it safe even though his cultures have since been negative…I seem to remember asking this VERY question when it was done. Anyway, that puts us at the PICC nurse’s mercy. Monday’s are often jammed packed due to the fact that no one is here to place a PICC on the weekend…just really hoping this doesn’t delay us getting out of here today. As of this moment it could happen at 10:30am, but they are hunting for an anesthesiologist that can work that slot.

We are still hopeful that he will be able to be discharged today and go home to see his surprises. I probably won’t post again until tomorrow if we are in fact able to go home. If we end up staying overnight again I will post so that you know we are still inpatient.

I know you are praying so hard for us right now. I always find it very helpful to know specific things to pray for and thought I would let you know what we are hoping right now, in case you too would find that helpful. The first thing that we are praying for is that Taylor can remain healthy for these two weeks between hospital stays. We really want to be able to give him some fun times before the next stay which will be unpleasant. I am praying that infections stay far away from him and that his pain may be controlled with measures we are able to take at home.

The other thing that has been high on my prayer list for Taylor is that he be healthy enough to take his Make-A-Wish trip. We have been working on getting things set up for November just after the next hospitalization. I am praying that he will be able to get his Australia wish and that if that is not possible that he is able to think of something equally wonderful to ask for. We have only once been on a “real” vacation that involved airplane travel and hotel stays. Taylor was 6 years old then and Shane’s parents flew us down to Mexico for a week. To this day it is a top of all three of our “most fun” lists for things we did as a family. I pray that we are able to enjoy one more of those vacations with Taylor.

Well, we have been inpatient for 5 weeks now, minus the three day blip at home. There is A LOT of packing to do for us to go home so I better get started. You guys are so wonderful…thank you for always being there for us in happy times and sad times. Thank you for being present in this extremely heart wrenching journey with us and never turning your backs. We love you all so much!

Written Oct 2, 2012 11:34am

Well, we have another “first” under our belt…first time we ever got 15 minutes from leaving and spiked a fever. I wish I was kidding. We already had all our stuff out in the car and were simply waiting for his last few minutes of anti-fungal to go in before we went home….I don’t even know what to say I am so mad right now.

Taylor’s pain got worse just before the fever spiked and we got some IV pain meds for belly pain and ibuprofen for his headache about 30 mins before his fever hit 102.5. It is early, so hopefully that means we can get a hold of whatever it is quickly. No matter what, this fever bought us at least another 48 hours for blood cultures to be clear.

What really worries me is that Taylor had a brand new PICC line placed this afternoon at 2pm. If this is a new infection, or even a comeback of the yeast, will he need to have it removed again???

I know I should be happy we didn’t get home before this happened, but right now I am just plain furious!

Written Oct 2, 2012 3:54pm

Okay, this is getting ridiculous. The day has gone from bad to worse. We are now in the PICU. Taylor’s blood pressures have dropped, heart rate is way elevated…they think it is bacterial this time. What???

How will we ever get him home if we can’t even get out of the hospital before he gets another infection? It is looking likely to be a very long night.

Written Oct 3, 2012 12:14am

I wanted to do a quick update to let everyone know that Taylor is doing okay. We settled into the PICU about 1am this morning. Taylor has been very unresponsive, but we did get him to open his eyes this morning. His breathing hit a rough patch last night and he is currently on a BiPAP machine to assist him. We are hopeful that he can stay away from the ventilator this go around.

The cultures are still pending, so we have no idea what we are up against at the moment. It is my belief, and as I understand the doctor’s belief as well, that it will come back a new bacterial bug. In anticipation of that, the doctors have started 2 gram negative rod antibiotics and a gram positive rod antibiotic. All that really means is that he is on a boat load of antibiotics and we also are still giving him the anti-fungal for the yeast.

This has been a long hard night. We have faced so many tough decisions. We have accepted that Taylor may not get the “big miracle” everyone has been praying for. All I wanted was to give my son two weeks! Two lousy weeks! I wanted him to see all the cool stuff we did for him in his room & Lego room. I wanted to take him to see Finding Nemo in 3D. I wasn’t asking to move mountains, just two weeks away from the hospital.

I don’t even know what to say anymore…I will update as I know things.

Written Oct 3, 2012 6:15am

I can’t believe I am typing this, but what a difference a few hours makes. Taylor has come off the BiPAP machine and is awake watching cartoons telling the PICU doctors he feels good enough to go home! I still haven’t quite wrapped my head around this, but am so very happy.

I think realistically they would want us to spend another night in the PICU, but I am pushing for a move back to the floor where Taylor is most comfortable. All of his stats are looking normal…it is almost as if the last 24 hours was just some horrible dream.

I just wanted you to all hear the good news that he is looking so very much better.

Written Oct 3, 2012 2:20pm

It has been a very long 24 hours during which I had a couple of brief naps at best. We have just now been moved from the PICU back to the 8th floor. This turned out to be our briefest stint in the PICU ever.

My emotions don’t quite recover as fast as Taylor does and I am very worn down tonight. Begging for a peaceful, restful evening with NO surprises.

Blood Cultures are still coming back negative after 24 hours which has everyone totally stunned. Not exactly sure what this means for discharge or our overall plan, but hoping for Thursday to be the day we break free. My dad goes back inpatient for his 4th round of chemo that day and I would like to be able to see him some too.

Thank you for all the love & support you’ve shown us always, and especially through this last awful day. We are so very thankful.

Written Oct 4, 2012 2:06am

Thought for the day:

If you slept uninterrupted in your own bed at home last night, do me a favor please and take a moment to appreciate that seemingly small detail in life.

Okay, so we are now settled into a regular room biding our time until we are free. Taylor is building a Lego castle a friend brought him last week and I hope to read some of the new J.K. Rowling novel. Uneventful is our only wish for the day. Taylor’s blood cultures are still coming back negative which is great, except that it leaves you on edge wondering when he will take a turn like that again.

Once again we are turning our energy and focus towards home and all the luxuries being in your own home has to offer…for Taylor the chance to be alone in a room for more than 5 minutes and his Lego…for me, my own bed and my plants. It sounds like our hot tub will be up and running when we get home too, which is simply AMAZING!

I just heard that Taylor & I were given opening night tickets to see Sleeping Beauty at the Colorado Ballet! We get to go with great friends and it is going to be awesome! Taylor has loved the theatre since I first took him to see the Nutcracker when he was 6 years old. I am not telling him what we are doing that night, just that it is dressy and with his friend Emma. I can’t wait to see his face!

Praying, praying, praying that this week ends up being a minor set back and we are able to get home and give Taylor all his wonderful surprises.

Written Oct 5, 2012 1:45am

It was a very uneventful night, just the way we like them! The plan is to go home when all his nutrition is in-around noon/1pm. Taylor is so happy to be going home and can’t wait to see all his friends and his surprises.

The plan is for us to have 11 days at home. He is still sicker than he has been at any other point leaving the hospital so nerves are high. We are going home on a boat load of IV medications, but the doctors are very supportive of us requesting this break and have sent us home with the arsenal we need to get it. We are all hopeful that we can stay out the entire break.

Our wish is to be able to spend time with family & friends and do some of the things that Taylor has been wanting to do. He wants to get to school for a few hours each day he is able. I know he will still need lots of rest and with all his new meds, etc. planning is going to be key. I know that just being home will do a world of good for us both.

Thank you for all your prayers. Please don’t worry if you don’t hear from us, no news is good news. I do plan on updating with all the fun things we are doing and pictures of Taylor grinning ear to ear!

Written Oct 6, 2012 6:01pm

Things are GREAT!

I don’t even know where to begin…the past 24 hours have been AMAZING! Taylor & I came home Thursday afternoon and several friends were waiting to welcome us. Taylor LOVED his Lego room and his comic book bedroom. I will be adding pictures soon and am hoping to even upload a link so you can see how Taylor reacted to all his surprises. I didn’t think I would ever see Taylor stunned silent! He was so excited to see the hot tub that he tried to get in without it being heated. Should be ready very soon to get in and soak. 🙂

We spent Thursday night in our jammies content to enjoy the comforts of our own home. There is absolutely nothing as wonderful as being home, sleeping in our own beds.

Friday…wow, where to even begin. Friday morning we pampered ourselves with manicures and pedicures in preparation of a big night out on the town. In the afternoon Taylor was able to spend some time playing video games with Grandpa Terry (His chemo was delayed until Monday). I was pampered more by one of the girls who works with my brother, Kerri, who so kindly colored and styled my hair.

Taylor & I had so much fun getting all dolled up in fancy clothes. It is so rare that we do anything like this…it was very dream like. I cannot even tell you how ADORABLE Taylor looked in his tux! He and Emma looked sooooo cute. I have added a couple pictures, but there will be tons more coming.

The evening started with pictures. A local photographer donated her services ALL night. She even came with us to the ballet so that we wouldn’t have to miss a single moment! I cannot wait to see pictures of Taylor putting Emma’s corsage on and vice versa.

We were then whisked off in a ridiculously cool limo. This limo held 20 people and had disco lights and even a “starry night” ceiling. As if that isn’t cool enough, we had a police motorcade complete with lights and sirens escorting us to the Center for Performing Arts. Taylor had his own body guard with him for the night too! Taylor & Emma laughed and smiled the entire way! It was awesome seeing them goofing around and playing “air guitar” to the music. Once we got into the city police motorcycles blocked intersections as if we were the president’s entourage.

When the limo pulled up outside the theatre there were “paparazzi.” About a hundred people were snapping photos, chanting Taylor’s name, and holding signs saying “We love you Taylor” and “Taylor Rocks.” One woman even asked for his autograph! We were given the rock star treatment for sure! It brought tears to my eyes to see the love & support at every turn. Perfect strangers seeing the strength in Taylor and showing him love…still in awe. Several of these wonderful “fans” were local photographers and I understand that they will be sending all the photos to us. We will have every angle, every shot of this special night.

The night continued with us being ushered to the Mayor’s box for what have to be the most incredible seats at Ellie Culkins. Everyone associated with the Colorado Ballet went above & beyond anything we could have ever imagined. Sleeping Beauty was incredibly beautiful.

That would have been more then enough right? Not quite yet! During intermission we were treated to a backstage tour…seriously! We were able to see the costumes & props…we got to meet the dancers. Honestly, it was too much. I still cannot believe how perfect the night was…how many people did everything in their power to give Taylor the best possible evening.

During the final act we were once again taken backstage where we were able to watch the dancing from a perspective I can only imagine very few are fortunate enough to see. Taylor & Emma were then taken onto the stage where they gave the dancers flowers and got to take a bow. I am not joking, they were actually standing on stage after opening night bowing with the dancers while the audience applauded…incredible. The whole cast gathered around for pictures and everyone had a tear in their eye.

The night was so magical. Tonight was every bit a fairy tale as Sleeping Beauty ever was. Taylor & Emma, Jen & I, adored every second of this night. A giant Thank You to every single person who made tonight possible. You will never know what a night like this means to us…so very grateful and blessed.

Written Oct 9, 2012 11:33am

We are still in awe over the events of Friday night. I just added some pictures so be sure to check them out. I am trying to add video of his arrival too…be patient, I am not so great with computers. If you are on Facebook check out Taylor Easterberg’s Adventures for even more photos & video that were added by all the paparazzi.

Things have slowed down a little, but we are still very much enjoying our down time. Saturday morning we saw Hotel Transylvania with several of Tay’s friends (and mine too.) Saturday night Tay had two friends spend the night and they did a mini Harry Potter marathon.

Sunday we went to church…it had been way too long. In the afternoon we built Lego with Uncle Mark & Uncle Randy. We also got down to the Lego store to spend some gift cards Taylor had received. It was very low key and relaxing. Taylor fell asleep at 5:30 last night and I had to wake him for the day around 11:30 this morning! We have worn him out.

Today Taylor went in for his blood draw and was able to go to school for a couple hours. It was great for him to get a chance to see all his friends. The teacher had him give details of his night on the town so that everyone could hear. After school he tutored with Mr. Tharp and was able to get a few worksheets done. It was a very successful day.

The rest of the week he will be trying to get to school a bit in the afternoons and we are doing some more fun things as well. Being home has put a smile on his face and a spring in his step for the first time in quite awhile. I must admit that it has worn me out. In order to be here we are giving a lot of IV meds, etc and he has something due nearly every two hours. I will do it though for however long he needs me…the gleam in his eye is worth every ounce of energy I can muster up.

Mostly I just wanted to update you that things are running fairly smoothly and share with you some more pictures. We love you all so much and are so very grateful for your prayers & support.

Written Oct 10, 2012 2:31pm

Well, we knew Taylor wouldn’t be able to keep up the pace he was at for long…Today was very low key. Tay didn’t feel well enough to go to school and we ended up spending the day chillin around the house. Taylor’s pain was high today and he slept more than he was awake. We did manage to get some quality snuggle time in and catch up on some TiVO’d shows.

I absolutely hate watching him hurt so much! Over the past couple days the pain in his legs has gotten pretty severe. I am hopeful that he will be able to do some more of the fun things we have planned, even if he needs his wheelchair to do them. There are a few more things he really wanted to do before we go back in on Tuesday…already just one more week of life at home. 😦

Tonight I am praying for pain relief…

Because I don’t like to end entries on a sad note…

Last night Taylor was able to get into the hot tub for the first time. This was the first time he has been in the water for well over a year! He smiled ear to ear and played around for about an hour. Taylor even begged me to let him sleep in there! Our friend, Michele, had bought him fish that “swim” around in order to create our own backyard Great Barrier Reef…perfection! He said the warm water felt so good on his stomach and literally got tears in his eyes. Thank You to everyone who made this possible. Our amazing friends moved the tub, laid a cement pad, wired the electrical, and got the tub up and running with the proper chemicals. This is a dream I could NEVER have fulfilled on my own. Here is hoping we have many more smile filled evenings soaking in the tub!

Written Oct 11, 2012 2:24pm

Today has been an emotional one to say the least. Taylor and I have received so many messages of love and support since his release from the hospital…I am moved well beyond what any words can say. In the last few weeks we have faced fears and heard words that no family should ever need to hear.

This morning Taylor, accompanied by his friends Morgan & Emma, were very lucky to have a “behind the scenes” visit at the Denver Aquarium. I probably should give you a little background so that you can understand how emotional this was…

When Taylor was 2 years old he & I went to see Finding Nemo for his first movie in a theatre. Unlike most kids he did not have trouble sitting or any fear of the theatre, instead he was mesmerized. Taylor was so clearly in awe of the beauty underwater life had to offer. When the movie ended he cried because we couldn’t stay and watch it again.

Fast forward to age 5 and Taylor was joining his first swim team. He was never a particularly fast swimmer, but he LOVED the water. He quickly progressed to swimming 5-6 days a week in the years before diagnosis. Not being able to get in the water and swim has been one of the most upsetting elements of his illness.

Shortly after diagnosis Taylor was presented with a Make-A-Wish. He immediately said he wanted to swim on the Great Barrier Reef in Australia. This was no surprise, he had been saying that he would someday “see what Nemo saw” for the better part of his life. His wish was granted and we were less than a week from boarding a plane when his intestine perforated and we instead spent several weeks in ICU.

Taylor has yet to make it to see Australia. He took all of his scuba diving courses, but got too sick to complete his certification. His dreams of swimming with sea turtles seemed to be more like a nightmare.

Today, however, we were given an amazing opportunity. The staff at the Denver Aquarium heard about Taylor and his fight from a good friend of ours and he was able to feed sea turtles! It was AWESOME! We were sitting on the pool deck feeding lettuce leaves to these huge, beautiful turtles. Taylor lit up like a Christmas tree. I half expected him to jump right in with them. For the millionth time this week I was in tears. The Great Barrier Reef is looking further away from us everyday, but for a little while today Taylor was right there. It didn’t matter that he couldn’t swim with them, that it was a pool & not the ocean…he was so thrilled.

In addition to turtles, we were also given the chance to feed an adorable sloth…seriously, who knew how cute sloths were? He also got to hold a strange, but cool, lizard. I think the girl’s favorite part of the day was feeding the tigers…yes, I said tigers! I have no idea why tigers live at an aquarium, but they are gorgeous! We got to put raw meat (ick…vegetarian here) on a metal rod and give it to the tiger. Who gets to do this cool stuff?

As we walked through the aquarium it was so bitter sweet. I saw Taylor’s eyes grow large when a shark swam above us in the water tunnel…saw his smile when a sting ray would flip. I also wished more than anything that he could be swimming with them. I flashed back to precancer days of swim meets, to a trip to Mexico when we swam with dolphins. He has always belonged in the water. He once told me that he loved the water so much because it cleared his mind and let him be free. I cannot think of a time when he could use that ability more than now.

We left the aquarium worn out. Truth be told Taylor had been dragging much of the day anyway. Never have I been more thankful for our wheelchair than today. He came home and rested a few hours.

Tonight he is having a really good friend, Spencer, spend the night. It is a “school night” and some may frown upon that but these boys needed this. Sometimes mental health is more important. I worry about Taylor’s friends. What do they think when he is gone for weeks on end? How can anyone ease their minds and fears when we adults cannot fully grasp the situation? I am just so very glad to have friends that really grasp the need for these boys to have a few hours together at any cost.

You can see just in this post how emotional things are at home right now. We have been riding the highest waves of fun all the while knowing that we are still waiting for the tsunami to strike again. Once again I thank everyone who has stuck with us day in and day out, through tears and laughter. We are so blessed to have had this wonderful day and cherish every second we get together.

PS-I will post pictures of today’s adventures very soon. Also working on video of Taylor from the ballet & of him seeing his new bedroom/playroom last week. It has truly been an amazing, beautiful week.

Written Oct 14, 2012 2:34pm

It is hard to believe that our time at home is almost up. We go back inpatient on Tuesday…time has flown. The end of this week has been fun & exhausting, even if it wasn’t exactly what we had planned.

Taylor has gotten more and more tired by the day and we have gone from barely being home to barely being away from home. I’m not gonna lie, I have enjoyed a little more down time. Today Taylor got his last doses of antibiotics so I am hoping he doesn’t have any funny business between now & Tuesday.

We have been able to get two big things crossed off our lists. We saw Finding Nemo 3D and got family photos taken. Taylor has also been visited by a bunch of friends from school and guests over the last couple days. On Thursday we attempted a tour of the capitol, but Taylor could not stay awake in the wheel chair so we hope to reschedule that for after this hospital stay.

Yesterday we got to visit with my grandma, Melba, my aunt, Linda, (Tay calls her Grandma Lightyear) and my dad. It was nice to have everybody out of the hospital for a change.

Today we went to a friend’s birthday party (Michele) with Uncle Mark & Randy and were lucky to see lots of good friends there. Taylor crashed almost immediately when we got home and I am hoping for a peaceful night.

Shane’s parents, Grandma & Grandpa “T” got into town today from Texas. We spent a little bit of time with them today and hope to spend lots more with them over the next few days. Taylor would really like to go to the pumpkin patch and we might be able to do that tomorrow.

Overall we are still wound up from the adventures the last week has held for us. I have added a few new pictures, so be sure to take a peek. Enjoying every minute of freedom we have and are so grateful for everyone who has made this time at home something to cherish forever.

Written Oct 16, 2012 1:25pm

I love my son. I adore him with all my heart and soul. Tonight my heart is breaking a little as the past few days have not gone as we hoped. Each day Taylor is getting a little weaker… It hurts to watch him be unable to stay awake for any amount of time. It is excruciatingly painful to watch him try to crawl up the stairs or to the bathroom because he is so weak & there is so much pain.

We have done very little the past few days because Taylor has just been too tired to do much. He has slept a minimum of 16 hours the past few nights and napped on & off during the day. His mood is still good though and I am so very thankful for all the friends & family who come by each day to make him smile and perk him up. Today we saw Grandma & Grandpa “T”, Shane, Emma & Jen, and Mr. Tharp.

Today also brought more line issues for Taylor. This morning we went to get Tay’s Monday blood work and during the blood draw one side of Taylor’s PICC failed. Calls were made to the doctors and it was decided that we could get by with only one lumen for 24 hours. We got home and about an hour later the other side of the PICC failed. After more doctor calls and packing for a hospital stay frantically, we were back at the urgent care center having a peripheral IV placed. This will allow us to have one more night of sleep in our own home. We can give all the IV meds he needs and fluids. The only down side is that he can’t get his nutrition without a central line.

Tomorrow we go back inpatient for, I’m guessing, about two weeks. Taylor will have a new port/broviac (not sure which yet) placed first, then a pain pump/epidural. The plan is to spend the first few days trying to get decent pain coverage with the pump. Once we get control of Taylor’s pain we will attempt to trickle feeds through Taylor’s G/J tube. This sounds easy, but with Taylor’s intestinal issues it is anything but a sure thing.

Also, during this hospital stay we will be addressing Taylor’s presumed liver disease. There is talk of a biopsy, but they need a decent sized piece which may require too much surgery to get. There is also talk of removing his gall bladder. This cannot be done laparoscopically, so it may be too much risk infection-wise. It would be a substantial abdominal wound, his last of which took 6 months to heal (when he was not solely on IV nutrition.) A wound like this may be more pain than the gall bladder issues themselves.

We are praying for a miracle. Hoping that the doctors find a way to substantially reduce Taylor’s pain, protect him from infection, encourage his body to accept feeds/food, and increase quality of life.

The past 10 days have been wonderful on the whole. So many people rallied to boost Taylor’s spirits and heal his soul. He has smiled and laughed so very much. When the next few days get long and hard we will go back to the ballet, the aquarium, slumber parties, hot tub soaks, and visits with family & friends. Thank you to everyone who supports us in every possible way.

Before I close for the night I want to thank Uncle Mark. He took Taylor last night for a few hours and gave him some freedom. He allowed Taylor some independence and me some time with friends. For a little while I wasn’t thinking of anything medical, I was just enjoying the season finale of True Blood with my friends. (Two months after it actually aired!) For a little while Taylor was an 11 year old boy enjoying time away from his mom. We love you!

Written Oct 17, 2012 4:48am

Just a quick update. Tay is in surgery right now getting his new central line, a broviac. The rest of our procedures are being delayed a week…I will fill you in on everything later tonight. It looks like we will stay over night today as a precaution given Taylor’s surgery and then go home for a little longer. Happy & sad about that…

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Written Oct 17, 2012 10:48am

Well, as seems to be the norm for Taylor things did not go as planned. Our doctors decided not to put the pain pump in today. The whole reason behind placing the epidural is to try and control pain well enough to start feeds through Taylor’s G/J tube. The concern today was that we needed to give Tay enough anesthesia to place a central line (Broviac this time) which they feared would slow down his GI tract further. In order to get the best possible information and give Taylor the best chance at healing, we will wait a week and come back in.

So tonight we are settling in for a one night stay just as a precaution given Taylor’s history. If everything goes as planned we will get out at some point tomorrow afternoon and come back next Tuesday for the longer stay. Even though I feel this is the right thing to do it still is very frustrating.

Tonight Taylor is feeling slightly better and is finally awake after sleeping for 6 hours after propofol. Hoping this is a very uneventful night.

Written Oct 18, 2012 2:28am

I am not really sure what is going on but emotions are out of whack today. Taylor & I are both really disappointed that he has to wait until next week to get his pain pump. So very much rides on whether or not we will be able to restart any type of feeding that isn’t through his IV and we won’t know that until after the pain pump is placed. He has finished his course of antibiotics and had the last dose of antifungals now too, so just staying infection free until Tuesday seems like it will take nothing short of a miracle. If you aren’t familiar with the long term hospital world it is very hard to explain the ups & downs of having plans change so much.

Taylor had a long night last night. With all the sedation given yesterday the doctors didn’t want to risk breathing difficulties. As such, Taylor didn’t get pain meds for a little more than 12 hours, so we played catch up with his pain. We finally got him comfortable around 4 a.m. and he got a few hours of sleep.

While we are in for this quick stay I asked for Taylor’s monthly IV IgG ( a blood product given to help his immune system) and they are giving that now. It runs over 4 hours so we hope to go home late afternoon.

This morning we have had A LOT of nurses come in to talk about & look at pictures/video of Taylor’s recent adventures. I am so proud that so many people have come to love him and want only the best for my son. It has made me teary and happy at the same time. Thank you again to everyone who played a role in making Taylor’s time at home so wonderful. You may understand what you were able to do for him, but I don’t know if you can appreciate what you gave me. You gave me back my son…my smiling, happy, carefree son. You gave me pictures and memories that I will be able to hold on to during the rough roads ahead. I cannot say thank you enough for such a special gift.

I will close with a You Tube video link. If you haven’t seen it already, this is Taylor’s arrival at the ballet. It is so beautiful…I still cannot watch it without a Kleenex handy! Lots of Love!

Written Oct 20, 2012 6:13am

Well we have been home now for just shy of 48 hours. Taylor has slept more than 40 of them, waking only for medications and due to pain. I am happy to report that I have gotten him to come downstairs for the first time this afternoon and that he has been up for a couple hours. I am praying this is a sign that he is getting a bit better.

I have enjoyed a little down time. This is the first time since we moved into our new place that I haven’t had a project going or company over. It has been a nice break having a little privacy and being able to chill out in my jammies. Although a couple of days of this much quiet is A LOT for such social people. I am happy to say that my aunt is coming to spend the night with us tonight and visit! We both adore her and are looking forward to having time outside of the hospital with her.

Taylor & I want to take a minute to say thank you for the card shower. He LOVES getting all the fun mail and each one makes him smile. Thank you too to everyone who included a gift and/or check to help cheer him up or help with out with his medical expenses. I have heard that Shane’s hometown of Goodland, Kansas has another fundraiser in the works too…so much love we are feeling, thank you so very much! If you were interested in the Thirty-One fundraiser the party runs through October and the link is below: (Special thank you to Lori for suggesting this, doing this, and giving her commission.)

http://www.mythirtyone.com/LoriB

I have finally posted some pictures of Taylor’s room & Lego room. Both are much more impressive in person, but you will get the gist. Thank you to everyone who has supported his 6 year obsession. I swear your gifts of Lego have kept him sane during the days & weeks stuck in a hospital room. My favorite part of Taylor’s room (the whole house really) is that there is so much love everywhere. My grandma’s love seat that we inherited when she passed, a new bed that our friend’s the Sannes bought, posters from the Hooks, painting done by EVERY friend we have ever had, repair/electrical by even more friends…it seems everywhere we look we are blessed. We know how very loved and supported we are and are more than grateful. You are always carrying us through the tough times.

Before I sign off today I would ask for prayers for my dad. Grandpa Terry has been getting weaker and more worn down with each chemo round and I hate that he lives alone. Next week he will have more tests run to see if his cancer is in remission. If it is, he will get a stem cell transplant. Please pray that he is able to heal fast, that he has achieved remission and will be eligible for the transplant. I am so very torn that I have not been able to help as much as I would have liked…praying that Taylor takes a turn for the better and I can be there more during the stem cell part of his journey.

Sending you lots of love this weekend and always!

Written Oct 24, 2012 7:52am

Three words that are way too familiar in our life…change of plans. Instead of coming in to have his pain pump placed, Taylor is now resting in the PICU. Yesterday I noticed some mottled skin on his hands and forearms, this is a very early sign that Taylor is heading down a bad path. I watched very carefully last night and around 2:30am his heart rate began to increase…fast forward to 6:15am and he had a fever of 102. Luckily for us our bags were already packed and we quickly got to the ER.

By the time we got back to the ER trauma room Taylor’s blood pressures had plummeted and his fever was 105. This is such a familiar sight for us… He was given boluses of fluid and started on two pressure support medications.

Taylor’s belly also had a hard, “mass like” protrusion. He was taken to CT for abdominal imaging and they also grabbed x-rays of his chest as well. We were already in the ICU by 10 am getting 2 broad spectrum antibiotics and boat loads of fluids.

We do not know much right now. The x-ray showed that Taylor does have pneumonia. The CT didn’t show any mass in Taylor’s abdomen. The swelling has gone down and it is thought that it may just be a uniquely Taylor symptom of the pneumonia. We are awaiting blood culture results to know what else we are up against. The interventions that they have already done have put him in a stable place where we are backing off all pressor supports. One bright-side to these traumatic turns is that his little body responds very well to antibiotics.

Right now we are praying for healing and the opportunity to get him well enough that he may be able to get the pain pump. We are also hoping & begging that this is not a line infection stemming from the Broviac that was placed exactly one week ago.

More questions than answers right now, but very grateful he is in a stable place.

Written Oct 25, 2012 7:34am

This has already been a depressing stay. At times it feels like we are watching Taylor get more sick by the moment. We have now gotten the complete report from the CT Scan done yesterday and the reports are frustrating. The scan confirms the presence of pneumonia, but it also shows “significantly increased bowel wall thickening.” We aren’t sure what is causing this…could be infection, prior surgeries, or signs of other issues. Anything complicating issues in Taylor’s intestine are going to make it more tough, if not impossible, to get Taylor to tolerate any type of feeds. The word significant is also worrisome given that the prior CT was less than a month ago. The CT also shows more signs of liver disease and worsening distention of his kidneys, gall bladder, spleen, etc.

On a lighter note, Taylor’s body has responded well to the antibiotics and we were able to leave the ICU just a bit ago. We are getting settled into our new room and enjoying the privacy.

We are still working to find the culprit of the latest issues. For now we are treating Taylor with antibiotics and breathing treatments. Hoping that every minute allows affords him more comfort. I will update you as we know things.

Written Oct 26, 2012 12:52am

What a difference a fresh coating of snow makes! It is beautiful looking out our window towards the city & beyond that the mountains. We are blanketed in warm thoughts of my mother sending us love from heaven. We were both able to actually get some sleep last night (well as much as you can in a hospital anyway) as well. Taylor especially needed it, as he had gone more than 30 hours without sleeping.

Yesterday was such an emotional roller coaster. The stress of the hospital, the angst of waiting for answers, the steroids…well, it makes for moments of chaos. I am hoping that as we get rest, answers, and he gets weaned down from the roids, a peaceful calm will take hold of the room.

This morning Taylor’s temperature is climbing once again, even as we get word that the first cultures grew nothing at 48 hours. He has been getting Tylenol as pretreatment for his antibiotic, which he is allergic to, so we can’t really know if he has truly been fever free at all. In rounds I am going to suggest pretreating with only Benadryl so that we can culture his blood again.

I am hoping to talk with our GI doctor today about the results of Tay’s CT Scan and what the findings mean for the future plans. I also hope to talk to our pain doctor and see if we might possibly get Tay’s pain pump this stay, of course presuming that we are able to keep a handle on the pneumonia and that nothing else creeps up. The combination of breathing treatments every 4 hours and antibiotics seem to be doing the trick respiratory-wise. As I have mentioned, with Taylor’s blood pressures being stable now on their own, I think we can start slowly weaning down the steroids (used to keep blood pressure up) which will help with his mood, sleep patterns, and overall “puffiness.”

In the next day or two I also think it is necessary to consult Infectious Disease. Taylor has had only 9 days total in nearly 3 months where he was off antibiotics AND infection-free. Going forward we have to know what we are dealing with and get a handle on treating things before they require a ICU stay, even of short duration.

My head is swimming now with all this information, as I am sure yours is too. Hoping that today is a much better day…one look outside at the sparkling snow and I know it will be!

***Update on my dad: He is having a PET Scan across the street even as I type. This week he has also had a Bone Marrow Aspirate, and many other tests. Please pray that they all show him cancer free. If he is in remission they will be able to proceed with the Stem Cell Transplant in November. Huge thank yous to my Aunt Linda who has taken my dad to nearly all his appointments and is taking care of him in her home now. It is a huge relief to me to know he is well taken care of and takes some of the guilt away from my not being able to do it myself. We will get all results and a future plan for him on November 2nd.

Written Oct 26, 2012 2:52pm

I have been sitting here for a long time trying to figure out how to journal the events of the day…such high highs and low lows. First off I will start by telling you that Taylor was in a great mood all day! For the most part all of his stats are holding steady and he appears to be once again on the road to recovery.

Taylor definitely has pneumonia and is still doing breathing treatments every 4 hours. That said, no one believes that it is what caused his fevers or low blood pressures from a few days ago. Taylor’s negative blood cultures and rapid turn around on antibiotics further confuse the picture. Because of Taylor’s recent long-term antibiotic usage and the negative cultures, the doctors felt we should discontinue this course of antibiotics and watch to see what happens. If his fever spikes (it has been hanging steadily around 100) or his stats change we will reevaluate.

Shortly after making this decision I finally heard from Nationwide Children’s Hospital in Columbus, Ohio. We have been trying since April to get Taylor in to see their GI Motility Specialist. We finally have an appointment and will be in Ohio from December 17-21 for testing. This is awesome news, as we have hoped all along that this specialist may see something that our doctors here haven’t been able to find. (We are trying to pull together a yard sale/bake sale at our church in November to fund the trip there and back. PLEASE let me know if you have items saved up for that. I will get you the details when I have them.) We got a couple hours to enjoy this wonderful news…

Late afternoon we got news that the plan to do the epidural/pain pump and subsequent feeding trials has to be put on hold indefinitely. The attending on service had reviewed the CT Scan from Tuesday to a CT Scan Tay had done last month. The bowel wall thickening was seen on the CT from September, but was minimal. Now that it has substantially increased, there is concern that the thickening is tumor.

The plan as of this moment, and trust me it is changing by the minute, is to try and biopsy the intestine via his ostomy. Taylor’s blood work and history of infection/immune suppression make it hard to diagnose without a biopsy. The one kink to this plan would be if they are unable to get a good sample without opening him up significantly. No one wants Taylor to undergo another abdominal surgery if there is ANY way around it. He simply isn’t in a place to recover from that.

Tomorrow afternoon we are meeting for another Care Conference, this time called by the doctors. We are hoping that this meeting brings about answers rather than more questions. We are desperate for some sort of plan going forward. Ultimately, it may not even matter what is causing the bowel wall to thicken in the long run. The thickening will most certainly make feeding more painful, if not impossible. We have been banking on Tay being able to restart some sort of feeds through his GI tract. If we cannot get that to happen there is no way to reverse his liver disease, etc. It is a vicious circle.

I hate cancer! I hate the lives it takes, the pain it causes, the havoc it wreaks even on those lucky enough to beat it. Our family has been victim to it’s fury so many times. In addition to Taylor and my dad, we are currently awaiting news from an upcoming mammogram for my cousin, Tami, whose doctors just found a lump. Please add her to our ever growing list who are desperately needing your prayers.

Tonight as we try to rest we say prayers for healing and comfort for Taylor, my dad, Tami, and all the others out there suffering as a result of this beast. We also say prayers of gratitude for the appointment in Ohio. This gives us a focus and a hope for Taylor…may God lead him to a path of peace, a path without pain.

Written Oct 28, 2012 1:20am

Sorry that I didn’t journal last night. I know that many of you are waiting to hear news from the care conference. I needed to have some time to process the information myself first.

Shane & I met with 8 or 9 doctors, both doctors Taylor already is familiar with and members of the Ethics Board & other hospital programs, to discuss Taylor’s care. No one is able to explain why Taylor’s immune system is still compromised, why he cannot go a week off antibiotics, and what exactly is going on with his bowel.

We discussed at length the intestinal wall thickening. The potential for relapse from his Burkitt’s is almost nonexistent this far out. He has, however, reached the time frame where they see a lot of secondary cancers. There is concern that this is a tumor. None of the doctors feel like it is worth doing the biopsy at this moment. The biopsy would require a big enough piece of tissue (similar to the issues we had with the liver biopsy and removing the gall bladder) that we just can’t perform the surgery to get it.

The pain pump placement has also been put on hold. With the intestine the way it is, no one believes he could tolerate feeds anyway and thus it is just too much of an infection risk. We have not placed anything foriegn into Taylor’s body that has not caused an infection in several months. The pump will likely be placed later down the road when the need for better pain control outweighs the risk of infection.

So many parts of Taylor’s body are fighting right now. With his liver, his intestine, the inability to feed (It has been more than 7 months now sine he has eaten), the constant infections…The doctors have told us that we need to use Taylor’s Make-A-Wish asap. They have agreed to sign off on Australia which is amazing. We all know that it is what Taylor has wanted more than anything since he was 2 years old. He just simply “wants to see what Nemo saw.” We discussed what safety measures need to be in place for the trip to happen…a boatload of IV meds, etc, basically the same things that were done to give us the incredible 10 day stay at home for the ballet.

Assuming we are able to make the trip happen, we would get another CT Scan upon our return. We are thinking this should be around a month time frame. This CT will either show growth and pretty much confirm a tumor, or it won’t. Taylor’s liver, etc cannot take chemotherapy right now so we aren’t risking anything by waiting.

Taylor has continued to show improvement from the pneumonia, etc. He has remained goofy from the steroids, they are weaning them super slowly because he has had a few low blood pressures. It is great to see him smiling and happy. He got a package from the Aquarium yesterday with a card & a huge stuffed sea turtle he LOVES! He also got a painting done by a turtle there, some pictures, and a cool book about the ocean. This made his day. He has been getting tons of cards too which we have posted all over the hospital room.

We hope to go home Tuesday or Wednesday now. We will go home on IV antibiotics and antifungals. We will have all the things he is getting here at our disposal, yet be able to have the comfort of our own home. Taylor so much wants to be home playing in his Lego room and relaxing in the hot tub. I am not gonna lie, I could use a soak and my own bed too. There is something about your own home that makes your worries more easily tolerated.

We very much appreciate all the support and positive comments. This is an unbelievably hard time for us right now as we face decisions no parent should need to face and hear news that seems like a bad dream. It is our goal to make Taylor’s life, whether it is 12 years or 112 years, the best it can be. We will do everything in our power to see him happy and take away the pain. Thank you so much for supporting us during this journey and especially right now.

Written Oct 30, 2012 1:08pm

I didn’t mean to worry anyone by not writing. Things have been very emotional and frankly there hasn’t been much to tell on the health front. Taylor is now fully recovered from the pneumonia and we are mostly still inpatient to get some other odds & ends finished up.

On Saturday Taylor had leg x-rays to make sure there were not any stress fractures with all the additional leg pain. The x-rays show malnutrition and bone loss. This is not a surprise finding, but let me tell you it doesn’t get any easier to keep finding more things that are wrong with very little that we can change to help.

We are still weaning down off the stress dose steroids. Taylor is very emotional as a result of these can go from his normal sweet self to full on sobbing or anger in seconds. It will be several more days until he is able to come down significantly on these and I am praying that his emotional state improves each day. There is talk now of Taylor going on lower doses of steroids to keep his blood pressure up preventatively…not even sure what to think of this option.

Tomorrow Taylor will undergo another CT Scan, this time with contrast through his lower intestine. It is our hope that this gives us more/better information about what is going on in his bowels. We have a few docs that are very concerned this is tumor and will create a full blockage and lots of pain, while other doctors think that this isn’t as big of a deal. Praying that this helps aid in our progress and doesn’t further confuse the picture.

It is looking like we are going to go home tomorrow or, more likely, Wednesday. Taylor is really ready to be at home and we are more than capable of doing all his meds and care at home as well. Shane’s brother and his family are coming out tomorrow and we are very much looking forward to visiting with them…Tay LOVES his cousins.

This weekend was very busy with visitors that helped keep us smiling and our minds off the current situation. Taylor’s friends Morgan, Sam, Emma, Spencer, & Trenton all came up for movie night and to carve pumpkins. You can see new pictures and their creations in the photo section. My friends Jen, Jess, & Heather were here to do Halloween PTA gifts with me. They turned out adorable and I can’t wait to hand them out to teachers & staff at Tay’s school. We also saw lots more friends, Uncle Mark & Randy, my dad, my aunt Linda, Taylor’s para Karla & her husband…I know I am forgetting to list people. This place was CRAZY! It was just what we needed. At times there were 12-14 people in our room, breaking the 4 visitor maximum-what rebels we are!

Taylor has literally gotten hundreds of cards & drawings. His whole room is covered in love sent from all over the world & Halloween decorations. THANK YOU for everything! The visits, cards, gifts, letters…it is making this time so much happier.

On Saturday we also had a very special visit from several students from Rock Canyon High School. Two years ago Taylor was their Make-A-Wish kid and they raised over $46,000 in a week, sponsoring Tay’s trip and 7 others. I am simply in awe that high school kids and college kids were moved by Taylor enough to do so very much. They came bearing so many cards, letters, and a huge banner with Taylor’s name that is signed on nearly every inch. It really made me proud to see how Taylor has changed them.

Before I close I want to add part of a letter we received from one of the RCHS students. The words this young man wrote will forever be etched in my heart and have helped me so much to understand the impact Taylor has had.

Ms. Hartline told all of us kids who are off at college that you were back in the hospital and we were all very sad to hear this. You are a trooper though and we know that you will keep fighting! When I first met you at the Make-A-Wish office I thought you were going to be shy with a bunch of high school kids around, because I know I would be. But you weren’t, you were telling jokes, rapping, and even hugging all the girls! That is pretty amazing and it says something about the kind of kid you are, and that is a remarkable one! You have so much confidence and pride in who you are which inspires me and many others to be better ourselves. You have a great sense of humor, a brilliant mind, and so many goals at such a young age. All of that tells me that you are going to be a very important person, someone who changes lives and inspires others to do the same. I have a lot of respect for you because I cannot think of a time when I was with you when you did not make everyone smile. I am proud to say that you were the first Wish Kid I was able to be part of because you were top of the line! I learned more from you in that week than I did in all of high school! But don’t tell Ms. Hartline that!

When I was applying for college this past year I was required to write many essays about things I have learned or events I have been through. I cannot lie about this, for at least 8 of my 10 applications, I wrote about you. I told them about the week, you, your dreams, your attitude, and your ability to cheer anyone up in a split second! I told them about how I was a different person after the first time I met you! I could have written a million pages but they limited me to one so it was difficult to get everything in. Sometimes around campus people will ask me if I work for Make-A-Wish when I wear the shirt from Wish Week, and I “wish” that I could say yes! Instead I tell them about the week and how cool you are and every time the response is that they wish their school did that! With a response like that it makes me think how fortunate Rock Canyon is to be part of such a unique, amazing, and powerful thing like Make-A-Wish. Not meeting you and not having Wish Week would be awful!

Thank you so much Sean for the gift you have given us through this letter and to RCHS for loving my son so very much!

Written Nov 1, 2012 7:33am

Happy Halloween!!!

Just a quick note to let everyone know that Taylor is getting discharged this afternoon. We are going to the Lego Store tonight for a Halloween treat since he can’t eat anything & isn’t going Trick or Treating. He thinks that is better anyway.

That isn’t even the best news though…

We just got word that Taylor’s Make-A-Wish trip to Australia has been granted and we will be going in the next couple weeks!!! So very excited!!! Can’t wait to start packing.

I will write more later about all the details. These are a few pictures taken last night of all Tay’s friends who came down in costume to wish him Happy Halloween.

Written Nov 1, 2012 5:16pm

Home Sweet Home!

We are so happy to be in our own home tonight! We came home to beautiful flowers and a clean home (Thank You Heather), not to mention another stack of cards. I don’t think it is possible for you to imagine how loved we feel right now. I wonder what our mail man thinks of all these cards…surely, he thinks there is a celebrity living at our house.

We have very much enjoyed spending the last two days with Shane’s brother, Adam, and his wife, Tara. Taylor has been overjoyed to see his cousins Baily & Ayden as well. Tonight we all went to get a little Halloween Lego fix at the Lego Store. They even were in the room when our friends from Make-A-Wish came in to tell us the amazing news about Australia…something that was so awesome to share!

Taylor got a special visit tonight from Captain America & Thor, aka Coach Brent & Coach Sarah. They stopped by to see Taylor and he LOVED their costumes! He was also happy to show off his Green Arrow superhero costume to them. Taylor is very proud of the costume we put together because Green Arrow is “just obscure enough…people who really like comic books will totally get it.” I’m just happy he likes it and got to be his favorite superhero. He likes Green Arrow because he doesn’t have any real powers, just lots of gadgets and money. Taylor LOVES that he uses his power & wealth to help the less fortunate! I LOVE that boy!

On Tuesday night after school Taylor’s friends came down to surprise him. Taylor, his pals, & his cousins did Halloween crafts and enjoyed throwing parachute men off the 4th floor of the hospital and trying to catch them in the atrium. Several even came dressed as superheroes, just for him. Morgan was Catwoman, Jordyn was Wonder Woman, and Emma was Black Canary…Taylor was so happy! I don’t know how we got so lucky, but we are so very grateful to have such amazing friends!

Taylor has had a few very good days, both with all the fun/exciting things and health-wise. We came home on a slew of antibiotics and antifungals, steroids and all his previous meds. Hopefully we are in a very good position to stay out of the hospital and enjoy some time at home before our trip down under. All the visits, cards, and positivity have without a doubt given him an emotional boost he really needed. We have spent a lot of time inpatient this fall, which is always hard on his depression-BUT we have also had absolutely amazing things happening that keep him pushing through.

Tomorrow we get to spend the whole day away from the hospital with Shane’s family. I suspect there will be some Lego building in our future before they head back to Texas tomorrow night. Tomorrow also is the first night of the Film Festival. Taylor and I plan on seeing a few films and I hope to get a couple grownup nights at the movies with friends too. We have some pretty spectacular things coming up to look forward to.

Thank you all for the prayers and encouragement. Our lives are so full of amazing blessings and we are sincerely grateful for each and every minute!

Written Nov 4, 2012 4:02am

Well we haven’t even been home three full days yet and we are already exhausted from all the fun happening around our house. Taylor is doing quite well, though he has very little energy and is tired all the time. He is happy to be home and have his Legos and “real” TV…meaning cable. We have been able to keep a good hold on his pain with the extra meds they sent us home with. This time is nice too because after I finish dosing the midnight meds there isn’t anything scheduled until 6am. This is allowing me to get a good solid 4.5 hours of sleep.

Thursday was a very fun day. Taylor played with his cousins, Baily & Ayden, all day. The kids haven’t all been together since last Thanksgiving so it was nice just to have a relaxing visit with them. Shane’s family had to leave Thursday night but we are so very grateful that we got 3 whole days with them!

Taylor also got a special visit from all the 6th grade teachers this year. They had wanted to come on Halloween and show him their superhero costumes, but we didn’t get out of the hospital until late. So they donned their capes and came to visit after school bringing goodies. Taylor immediately wanted to put Green Arrow back in action too and changed into costumes for pictures! See the above picture for the whole Justice League!

Thursday night we were fortunate enough to be given tickets to the Starz Denver Film Festival Opening Night at the Ellie Culkins. Taylor was so very excited to walk the RED CARPET! He has dreamed of working in film and the summer he got sick he was doing some acting classes with a local theatre group. Even though he wasn’t feeling good he went on and on about how cool “the walk” was. The movie we saw was A Late Quartet. It was AMAZING! Taylor unfortunately was so tired he didn’t even make it through opening announcements before he was fast asleep. It all turned out great though because the Red Carpet was the important part for him. You can see our picture from the event at this link:

Starz Denver Film Festival 2012

Friday Taylor spent the day relaxing around the house. He slept late, played Lego, watched cartoons…just didn’t have a lot of energy at all. He got to hang out with his two favorite physical therapists, Lori & Katie. They came to check out his new rooms and allow me to go to my dad’s oncology appointment. Thank you, thank you, thank you!!! Taylor had a blast watching movies & building even MORE Lego with them.

We got good news, well the best possible news anyway, at my dad’s appointment today. He is in remission and able to start the stem cell transplant. It will be a series of steps that will result in the stem cell transplant occurring sometime mid December. We are so happy for him and thankful that the doctors have him on the road to complete health.

After the appointment I brought my dad home to spend the weekend with us. No big plans, but with our trip coming up and his medical needs, it seemed like a good time for some quality time with Grandpa Terry.

Things are going well at home. We are enjoying seeing our friends, sleeping in our own beds, reading all the cool cards everyone has sent… Taylor has gotten so many cool gifts of hand made art, poems, of course Lego…we are spoiling him with LOVE! Thank you all so much for embracing us and making our world a better place.

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