Aaron's Hyper IgM Journey

Monday, December 16, 2013

"Doing quite well" Really???

We just got back from another trip to Cincinnati.  Our timing could not have been better.  We arrived the night before a big snow and left the morning before another snow.  We enjoyed the beautiful winter wonderland without having to drive in it too much.  Aaron was not thrilled about the cold and could care less about the snow.  I found it to be pretty and thankful that the car doors did not ice shut this time. 

December is the best time of year to visit the Ronald McDonald House.  The house is so beautiful with thousands of lights and probably 100 Christmas trees.  Every year they have the Christmas train.  Aaron LOVES this train and talks about it year round.  The train town was set up, but unfortunately a note was left for the children.  The note explained that Percy kept derailing and had to be taken back to the island of Sodor for repairs (this means they could not figure out how to run the train).  Hopefully, the train will be fixed and running when we go back in early January.

We met with the doctor and I asked her the same questions I ask each month, "Will my son ever get better?  Will he live?  Will he ever be able to play with other children?"  Her response was "I really think he is doing quite well."  It took everything in me to not get up and shake some sense into her.

My perspective: We did this transplant to give Aaron the immune system he never had.  He is no closer to getting an immune system than the day they started chemo and stripped him of the little bit of immune system that he was born with.  Now, not only does he not have an immune system, he also has deadly GVHD.  He cannot play with other children (in fact he screams at them).  He cannot go to school.  He can't even go outside and enjoy the sunshine (UV light is also deadly).  I really am not a pessimist, but I would like to see my son improve.

The doctor's perspective: He is very stable and on a relative low dose of steroids.  Of course he screams at children.  He spends all his time with adults and is not used to child behavior.  Children run around acting like wild animals and Aaron must think they are crazy.  He will get better someday.  His cells and the donors cells need time to work themselves out.  As far as school, he will be fine.  He is smart and we can keep teaching him at home.

UGH!!!!  There is no new plan.  The Cincinnati Children's hospital approach of watch and wait will continue for a while longer.  I pray his gvhd goes away so he can finally get an immune system.

We are enjoying the holidays.  Serena has spent a bit of time with us.  She is so much fun.  We have gone for walks in the evenings to look at the Christmas decorations.  Serena and I went to a neighborhood holiday party.  She made her favorite gooey gingerbread cookies and was able to meet some of the neighbor kids.  Life is good for us and we are happy.

Btw... Aaron still does not like Santa and does not think he is real.  I love that kid.  He is so funny.

 
Aaron feeding Liz, his lizard friend
Aaron sleeps with his dog covering his face
Looking at the flowers in the neighborhood


Saturday, November 2, 2013

Look who turned 4

I couldn't be happier to have another year to spend with the biggest joy of my life...Aaron.  We spent yet another birthday at the Ronald McDonald House/hospital.  However, he more than made up for it with presents and celebrations that lasted over a week.


 
We stopped by the mall in Kentucky on our way to Cincinnati.  This was Aaron's actual birthday.  He rode on his first train ride ever.  He did not speak one word and I had to force him to smile for the pictures.  He sat completely still the entire trip around the mall.  I believe he was overtaken by amazement.  After the ride, he went to build-a-bear and made his own dog.  He picked out his heart, his barking sound, and helped stuff him. 



 
The next day was spent in the hospital for treatments.  Aaron was lucky to have his favorite nurse Carol to spend the day with.  She brought him presents that he loves (play dough food set and cook books).  Later that morning Child Life stopped by and did a completely ridiculous dance routine that had us all laughing.  They brought more gifts and a beautiful James cake.  We also found out that in the last two weeks Aaron managed to get rid of one of his three viruses.  This was the greatest gift of all!




Once we returned home, we had Aaron's cousins over for a party.  We started off with fresh homemade lemonade.  Everyone gave Aaron a quarter for each cup.  He didn't get rich off the lemonade stand, but he sure did have fun!  Next, he went straight for the cake.  Aaron had been begging me the entire time I was making the cake for a taste.  He just could not wait any longer.  He really enjoyed opening all of his gifts.  By the time all of the presents were done, Aaron was done too. 

Friday, October 11, 2013

Teacher Troubles

Aaron met his teacher Monday. To say that it did not go well is an understatement. He screamed the whole time and did not want to do what she said. The end result was the teacher stating "not all kids go to preschool."
We did not request a teacher for Aaron because we were worried about his education. We wanted a teacher so that Aaron learns that when he is in school, he has to sit and do what the teacher tells him to. He has never been in any kind of structured environment like preschool or daycare.
I know this is going to be hard for him and his teacher. I hope the teacher can figure out how to help him learn this skill. Otherwise, we will have to request a new teacher. This teacher is used to older kids who sit and listen as she teaches. She does not do much with preschool age.
As you can see in the video, Aaron is very good at doing his school work with the nanny. I also wanted to show this video so everyone can see that despite his serious illness, he is a VERY happy child.

YouTube Video


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Monday, October 7, 2013

And Adeno makes three



Playing in the PT room

Getting some OT time while doing photophoresis

 

We just got back from an unplanned, somewhat emergent trip to Cincinnati.  Aaron's gvhd has gotten out of hand over the past month and a half.  The doctor took one look at the pictures I sent her over text message and told us to come back as soon as possible.  And yes, we are on a text message basis with Dr. Davies, the head of the one of the largest BMT programs in the country. 

Aaron was admitted to the hospital since he was being watched closely and had many IV medications and procedures.  This was actually the best inpatient stay we have ever had.  I am becoming a pro at this inpatient stuff and called ahead to have everything set up.  He had his favorite photophoresis nurse, Ms. Carol, as well as PT and OT appointments daily.  We were put on the 7th floor which is a quiet floor with large rooms. Overall, we had plenty to do during the day and were able to sleep during the night.  That is not common in the hospital.

On the second day, Aaron's stool results came back positive for Adenovirus.  Yuck!!!!!  Now Aaron has three virus (norovirus, rhinovirus, adenovirus) that his immune system (or lack of) cannot get rid of.  Dr. Davies believes that this new virus probably aggravated his body and led to the gvhd flare.  Like most viruses, there is no treatment and we will just have to watch and wait. 

Aaron's skin is looking better and his attitude has stayed great during this whole ordeal.  He actually loves going to the hospital because he gets to watch his iPad most of the day and gets to order food from the menu.  He is such a happy little boy!  I thank the Lord for that.  He has no idea that what he is going through is not normal. 



Racing cars with Dad in the hospital

Bundled up in his UV clothing to take a picture with the cow at the rest stop

Thursday, September 26, 2013

Ahead and behind: the IEP

I went to Aaron's IEP (individual education plan) meeting.  Everything went well.  They discussed the results of his assessment.  He is ahead of his age in cognitive and communication skills.  He has fallen behind in the areas of motor functioning and independence.  Neither of these surprise us since the bone marrow transplant basically knocked him off his feet (literally) and he had to start all over again with muscle strength.  His lack of independence means he cannot dress himself, use the potty by himself, or go up and down the stairs by himself.  All of these things are also a result of decreased muscle and bone strength.  The steroids have weakened Aaron's bones to that of a geriatric person and they have weakened his muscle as well.  Fortunately because he is very young, he will be able to recover his bone and muscle strength.  We just need to get him off of these steroids. 

As a result of the IEP, Aaron will qualify for a teacher to come to the home once a week for 45 minutes.  We are looking forward to him starting "school."  Due to his weaknesses, he may qualify for occupational therapy.  However, I didn't think to ask about that during the meeting and I would have to set up an additional meeting to find out.

Friday, September 20, 2013

GVHD lingers on

We left Monday morning for another trip to Cincinnati for Aaron's photophoresis. Such anxiety filled my heart as we got closer and closer. Being home is a bit of an escape from the reality that Aaron suffers from a deadly and difficult to treat complication of his transplant. Driving to Cincinnati is a reminder of this fact. And sadly, Aaron's gvh has flared to cover most of his body since we were here four weeks ago. He is also having watery diarrhea, a very bad sign.




The doctor told us to plan to stay longer than usual. She was planning to admit him after seeing the pictures of his skin. She met with us first thing Wednesday morning. She was not pleased with his progress since the last visit and decided to add influximab. This is a drug we stopped several months ago because the insurance company refuses to pay for it. Each dose is several thousand dollars and they say there is no evidence it works in gvhd. They need to send a representative to the hospital because Aaron made huge improvements overnight after receiving this infusion. We did a second dose today. Aaron is improving enough that the doctor is increasing his steroid and sending us home.




I am overjoyed that we avoided a hospital admission, but I wish Aaron was doing better. This setback means our trips to Cincinnati will be continuing for quite some time longer (probably a year or two) and we have no hopes of an immune system anytime soon.

If anyone can think of some good fundraising ideas or knows of any companies that donate to charities for tax breaks, please let me know. Each trip to Cincinnati costs $800 in gas, hotels, and copays.

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Wednesday, September 4, 2013

Starting school and glasses

We are working with the local school system to get a home schooling plan for Aaron.  Because of his isolation, he has been delayed in certain areas.  His delays are due to exposure rather than lack of ability.  For example, he was delayed in cutting with scissors.  This is completely my fault because I thought I was supposed to keep scissors away from three year olds.

Last week, three teachers came to the house to evaluate Aaron.  There was a speech therapist, vision therapist, and a general teacher.  They spent two hours going through a series of questions and tests and puzzles.  They were amazed at Aaron's ability.  All three of them said that in all years they have taught, Aaron is by far the smartest three year old they have ever seen.

We will have a meeting with the school board at the end of the month to evaluate Aaron's needs and come up with an individual education plan (IEP).  Most likely a teacher will come to the house 1-2 days per week for about an hour to keep Aaron on track.  

I am thrilled Aaron is smart for several reasons.  Chemotherapy affects the brain and drops most people's IQ several points as well as causes some attention problems.  The most critical period in brain development is early childhood and the worst time to expose the brain to chemo is between two and three years of age.  Aaron began his 10 day chemo regimen two months after his second birthday.  Spending a lot of time in the hospital during the first years in life can also greatly reduce stimulation and lead to delays.  Aaron has spent nearly a year and a half of his life either in a hospital room or in a one room suite at the Ronald McDonald House.  Finally, we will soon be put on a 50 year plan to pay back all of Aaron's medical expenses from the hospital.   Our responsibility of the medical expenses  (after insurance has paid) is more than the price of four years of college tuition, room and board.  Aaron will definitely need to use his brain to get a college scholarship. :))) 


Our latest ophthalmology appointment resulted in glasses.  I cried!  The glasses actually turned out to look better than I thought and Aaron doesn't complain a bit about them.  I was temporarily sad because it is just one more thing on our long list of "things" to deal with.  Aaron's cataracts have gotten so severe that his eyesight is compromised.  The doctor said he may or may not need cataract surgery, but he is definitely heading in that direction.  Hopefully the cataracts will slow down because the doctor won't even think of surgery until Aaron has a functioning immune system (which he is not close to having).

On a brighter note, we have enjoyed several months free of overnights in the hospital.  We only head to Cincy every four weeks now.  We are continuing to go down on the steroids with some success.  I feel like we are making two steps forward and one step back with each decrease.  Eventually we will cross the finish line.

Monday, September 2, 2013

Summer in review (part two)



I was fortunate to make it to Spokane, WA for my sister's surprise birthday party.  We had massages, spent time with her beautiful family, and drove to Portland to visit some of her friends.  The weather was beautiful and she was delighted to bring her Porsche out of the garage and drive with the top down for the road trip.  I miss her tons and wish we lived a lot closer.





My brother and his family took a two week vacation and I am super thankful they decided to go to Disney World.  Living in Orlando often means family comes to me.  I can't even remember how long it has been since I have seen Craig and Katie.  We had lunch at the NBA restaurant and afterwards the kids got soaked running around in the water.   Serena enjoyed having three friends listen to her talk and talk and talk. 




With major reluctance, we took Aaron to the community swing set.  Aaron's doctor said it was time to start getting Aaron out of the house a bit and take him to the park.  We went at eight in the morning.  He was loaded up with sunscreen, UV clothing, a hoodie, and his wide rimmed hat.  I was still scared to death.  We stayed outside for maybe 15 minutes.  Aaron really did not have that much fun.  UV light is deadly to him and we have to limit his exposure.  Next time we will try a park with more activities and maybe earlier in the morning.

Wednesday, August 14, 2013

Summer in review (part one)

Summer was fantastic!  Serena was here, we had no hospitalizations, and I got to see my brother and sister.



We threw cousin Aidan a small birthday bash.  Technically his birthday was not this summer, but I am really behind in blogging.  We were fortunate to see Aidan three times this summer.  Aaron is slowly warming up to his "best friend."  I am hoping to have more frequent play dates.  Aidan is the only approved friend the doctors will allow.  We are thankful because he is adorable.


Serena spent the summer with us which always makes life more fun.  She is never without a good story (which often never ends) and so much creativity.  She had a blast with the nannies.  She even put on plays for me when I got home from work.  My favorite moment was one night when she needed to go downstairs to get her stuffed toy.  I was busy and couldn't go down with her.  She is deathly afraid the ghosts are going to come out of the walls and get her.  She armed herself with a flashlight and a baseball bat.  I wish I had a picture. 


Michael was a race car driver for a day at the Walt Disney World of Racing.  He even had to enter the car through the window.  He loved it!


Serena played her violin in a concert and had an excellent performance.  Her daddy also plays the violin and they are both very talented.  A few weeks later she performed a monologue in a theater performance.  This little girl has endless talent.  She also has many goals in life.  Lately she wants to be a professional soccer player and publish children's stories.





Aaron's cooking interests have taken off this summer!  He has gone from playing with his food toys to discovering recipes that he insists I make.  He finds the recipes himself.  His inspirations come from youtube, his books we read and looking through my cookbooks.  Everything he has picked out has turned out well including the Creamed Chicken with Peas on Toast.  I only wish he would eat the things we make.  He does not like to eat.
 



We still travel to Cincinnati regularly for Aaron's treatments.  We were going every three weeks and this month we are trying to go every four weeks.  Having Serena come with us is a blessing.  Everything is better when that girl is around!  The drive was easier with both kids in the back seat and I got to listen to my audiobooks. 

Aaron's health remains unchanged.  We will never lose hope that someday we will win this battle and announce to the world that Aaron has been cured!

Wednesday, July 3, 2013

Little chatterbox

This is a longgggg overdue post. Sorry to those that have supported us along the way and I have left you hanging.



We tried another steroid wean without success and had to go right back up on the meds. That was disappointing, but we are still plugging along. He still has zero immune system and is still just as fragile as ever. We are expecting at least another year and a half before we have any hopes of him entering society in a normal way.



However, there is some good news. Aaron has become quite the talker. I have a feeling his sister has rubbed off on him. Serena has been staying with us this summer and I have never met anyone who can talk and talk the way she does. They have also done a lot of laughing lately which makes me happy.  



Aaron has had the norovirus now for about six months. Without an immune system he has no way to fight it and there is no medicine to help. The doctors have tried an experimental treatment with breast milk supplementation. With only one glass a day (loaded up with strawberry syrup), he has gone from pooping every two hours to only three times a day. This means we are all getting more sleep at night. Yay!!!!



Aaron has lost about six pounds and looks great. His skin looks better than it has in a long while.



We are also enjoying Serena's company. She is a beautiful, fun, and talented little girl.   She enjoyed a week of VBS, had her acting monologue performance, and played her violin in a concert. She is looking forward to soccer starting again soon. She is one of the star performers.






We even got to have another visit with cousin Aidan. We love when he gets to visit.




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Sunday, May 5, 2013

Don't eat my cupcake!

We just got back from another three days in Cincinnati.  Aaron has been doing so well with his steroid wean until now.  GVHD is spreading over most of his body.  He is also having signs of gut GVHD.  We had to go back up on steroids again.  Even with the increased steroid, his skin is getting worse.  The doctor also said that Aaron will have to keep coming every three weeks (we were suppose to start going every four weeks now).

I really don't know what will happen now.  The doctor will have to come up with a new plan.  They say GVHD will burn out in five years in most people.  I was hoping we wouldn't have to wait that long.  Until Aaron can get passed GVHD, he cannot get his new immune system.  I am trying to stay positive, but it is really hard.

One day during his photophoresis, Aaron asked me to order him a cupcake and then he fell asleep.  I completely forgot to order the cupcake.  When he woke up it was time to leave the hospital.  I felt bad.  We had to leave our room since they needed it for the next patient.  However, I ordered the cupcake and we waited near the clinic until it came.  The doctor kept teasing Aaron that he was going to eat his cupcake.  Aaron was mad!!!  He yelled at the doctor, "don't eat my cupcake."  When someone says hi to him, he usually yells, "don't say hi to me."  However, the rest of that day when someone said hi, he yelled "don't eat my cupcake!"

Thursday, April 18, 2013

Sailing








Sailing


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Thursday, April 11, 2013

Photo is working!!!!






Aaron is doing amazing! I couldn't be happier. We have weaned really low on Aaron's steroid with no gvhd complications. Last time when he got this low on steroids, Aaron was so bad off he ended up being air flighted from hospital to hospital. He should be off the steroid in a month. This is the biggest milestone we will hit post transplant. Starting in May, we will be going to Cincy only once a month. Thank you Marsha for being the reason we are getting photo and doing great.

He still has norovirus which causes him (and me) to still be up all night with trips to the potty. Since he still has zero immune system, he can't fight this off. He has had it for three months now. He also still has the huge tummy that is not getting better. Hoping this resolves itself soon. His energy level is great, but his tummy gets in the way of his progress. He could benefit from PT and OT, but we haven't been able to work that in our schedule yet.

We have been enjoying life. My sister came for a visit over Easter and we all went to the coast. Michael is interested in sailing. We found a super cool sailing instructor for him that guarantees he will be on his own in the water after an hour.

Serena has visited numerous times. She is always a delight. We can't get enough of her and look forward to her staying with us for the summer.




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Sunday, March 3, 2013

Shaking his tailfeathers

video


Aaron was excited for Mom to get home.  He was having a good time with Tabi, his nanny.  This video made my day, my week, my month, my life!!!!  Times like this remind me that this was all worth it.  Glad Aaron has made it so far and brings a smile to those who know him.

Thursday, February 28, 2013

A Good Trip to Cincy

Finally we had a trip to Cincinnati without any problems. Aaron's treatment went well and he spent a lot of time with his favorite nurse Carol.

We found out Aaron's belly problem is pneumotosis. Gas is trapped in the walls of the intestines. They will not treat him and it should go away on its own in a few weeks or months. We just hope the gas bubbles don't burst or else we would have a huge problem (sepsis).

My heart was lifted higher than ever Tuesday evening. My BMT Mom friend, Kasi, was also at the RMH with her son Kohen. The boys were transplanted a couple of weeks apart. Aaron saw Kohen and smiled and laughed. They compared what was on their clothes (Aaron had a train shirt he was showing off and Elmo pants). Then Aaron chased Kohen around the RMH. He referred to Kohen as his little friend. This is Aaron's first friend and playmate besides his sister and cousin. This is also the first time he has seen a child without screaming at him.



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Sunday, February 24, 2013

We made it

I had no doubt we would find a way to get to Cincinnati.  I can't think of anything that would stop me from getting Aaron his treatment.  However, I didn't know how we would make it...

My car has been in the shop three times in the last week for three different issues.  I feel like every time you bring a car to be fixed, you end up with another problem (or two or three).  Friday my car gave me trouble again and the mechanic said I needed a new computer and the closest one available was in California.  There was no way they could fix the car for awhile.  I tried so hard to be strong, but I broke down in front of the mechanic.  We were supposed to leave the next morning to drive to Cincinnati.  The mechanic was so sweet and even offered to drive me home, but that didn't help with getting Aaron to Cincy.

Michael and I looked at all options including renting a car and buying a car.  We finally settled on buying a cover for the bed of Mike's truck and taking our chances with his clutch that needed to be replaced two years ago.

We made it!!!!!  Aaron will get his treatment and I pray we make it home safe.

Aaron's gvhd has been great.  Slight flares and gone the next day.  His bigger issue right now is that his belly is so swollen, he looks like a he is carrying a basketball under his shirt.   I am a bit concerned and have emailed the doctor.  I am anxious to get to the doctor tomorrow.  As always, his spirits are great and he is a perfect sweetheart.  Barely made a fuss the whole ride up.  His only complaint was that he doesn't like when Mom drives because he wants Mom to sit in the back with him.

Monday, February 11, 2013

Fainting, car problems, line infection

Just when things were looking so good, we got knocked down again.

Friday, we were supposed to leave Cincinnati by 11am to head home after his treatment.  However, he fainted during photophoresis and the nurse pressed the staff emergency button.  I have never seen so many doctors and nurses gather in one room before.  Aaron was completely white with plummeting blood pressures.  He recovered well after some time.  I was not overly concerned, but they took blood cultures and gave him an antibiotic for good measure.  When finally hit the road at 2:30 to go home to Orlando.

Just before getting to Atlanta, we were stopped on the interstate due to an accident for two hours.  During that time, my car decides to rebel on us and stops working.  Michael pulled over on the side of the road at 9pm and  checks it out.  Thankfully, he got it working well enough to continue driving. 

The next morning we got a call at 9am from Aaron's doctor saying that the blood cultures are growing a bacteria and that we need to head straight to the ED for more testing.  For the 6 hours it took us to drive home to the local hospital, I was a mess.  Panic, fear, sadness, anger...  Thankfully I had an audiobook to listen to for some distraction. 

Aaron is now admitted to Nemours hospital where he is fighting a line infection that has spread to his blood stream and a low hemoglobin.  He may require a blood transfusion in the next day or two if things don't straighten out. 

So much for my long awaited one day off every two weeks.  The good news amongst all the bad is that the doctor says of all the infections he could get, this one is the best.  It is very responsive to antibiotics.  Hopefully the infection clears soon.  Otherwise, he will undergo surgery to have his lines removed. 

I think this is the scariest thing that has happened (accept when he almost died of PCP pneumonia).   The problem is the potential of a blood infection to turn to septic shock is terrifying.  Unfortunately, I do not have enough energy to worry as much as I should. 

I must stress that Aaron is truly a gift from God.  He is so happy and funny and loving.  NOTHING gets him down.  As long as he has his trains and his iPad, he could be anywhere in the world.  He laughs and plays.  He does not scream or get angry.  No matter what life throws our way, this kid is happy and his strength pulls me through.

Wednesday, February 6, 2013

Just don't have time

We started a new chapter in our lives when we brought Aaron home last month. The drive home was great. My Dad flew up from Arizona and drove with me to Orlando. He wouldn't let me drive at all. I sat in the back with Aaron. We read books and laughed and played. What a treat for us. Thanks Dad!!!!!

Aaron has been thriving at home. He is getting accustomed to having a nanny while Mom and Dad are working. Tabi, the nanny is wonderful. She is doing crafts with him every day (something mom is not good at).

The two things that I feel Aaron is lacking are preschool activities and socialization with other kids. Tabi is doing a great job with the preschool activities. We got the green light to let Aaron play with his cousin. Hopefully Aaron will play nice.

Lately Aaron is too busy. He no longer screams at people "I DON'T SAY HI!". Now he is slightly more politely and lets everyone know "I am too busy to say hi!".

So far we have made two trips back to Cincinnati. Aaron's skin looks better than ever since transplant. He has lost two pounds which is also great. He did contract norovirus and C. Diff. this past month. He has had some vomiting and diarrhea. We had to switch from oral to IV meds but are now back to oral.

Although Aaron has been thriving, his parents have been suffering. We also contracted norovirus. With the driving to Cincinnati every other week, we are working almost every day we are home. We are exhausted!!! The doctor just told me today that Aaron can come back every three weeks instead of every two. I also found out from work my schedule will be changing and I won't be working six days in a row anymore. This will help a ton and maybe we can enjoy being home more as a family.
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Thursday, January 10, 2013

My Little Brit

We were at occupational therapy yesterday. Aaron was having a blast. The therapist was happy. She has never seen him with such energy and enthusiasm. He swung on the swing by himself, he cut paper, and he put together a cookie puzzle. Then she pulled out something new. Shaving cream. He was not having it. He did not want to spray the cream and definitely did not want to get any on his hands. He had enough. He looked at her and said "I'm really cross!"

Neither of us could contain the laughter. Someone has been watching a lot of Thomas the Train. For those of you that don't know, it is a British series and the fat controller often gets "cross" with the trains.


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Location:My Little Brit

Monday, January 7, 2013

Cataracts

I am already counting the days to 2014 (358 days to go).  One of these years just has to get better.  We found out today that Aaron has developed cataracts from the prolong steroids.  He will need surgery.  He cannot have surgery now because the risk of infection is too high.  However, if he goes too long without surgery, he can go blind.  As his vision gets worse from the cataracts, his brain will process vision less and less and begin to shut down its visual response.  Even with cataract surgery, if the brain has shut off vision, he will be blind. 

His kidneys are also still spilling huge amounts of protein into the urine which means they are still being hit hard from the medication.

Aaron's GVHD has to get better and really soon.  He has to get off these medications. 

I try to stay positive with all that happens, but I don't feel like it today.  Today I am going to be angry.  Tomorrow I will be positive again.

Friday, January 4, 2013

Day +366 Happy Cell Day

Aaron made it one year post-transplant!  Happy Cell Day little buddy.  I love you love you love you!


This last year has been with MANY ups and downs, but we survived.  One year post-transplant is a huge milestone.  The next milestone is 5 years post BMT.  After 5 years, most people survive.  I already know Aaron will be a survivor.  I think (and hope) that we are finally over the hump and he will start healing.

Aaron spent the whole day in the day hospital receiving IVIG and infliximab two of his regular infusions.  Child life made him a sign and brought his favorite toy cake to play with.  He also got a new toy.  What a lucky kiddo.


I had too high hopes for the new year.  I hoped for complete healing with no bumps in the road.  Our first bump hit Dec 31st when Aaron's GVHD got a little worse.  He was itching all over for days and was not comfortable.  The rash was very slight, but started appearing all over his body.  We had to go up on the steroids for the first time since he started photophoresis.  Then on Jan 1st he came back positive for CMV, a virus.  I was in panic mode.  Most people get this virus in their life and never know.  However, in immunocompromised patients, it can be nasty.  The range is from fevers and aches to permanent loss of vision to death.  Not the way I wanted to start my New Year!!!!  Thankfully, since his first positive test, the virus has been quiet.  Once you get this virus, it never goes away but lays dormant in your body.  I pray this virus never shows its face again.

We will be bringing Aaron home this next weekend.  We will drive back to Cincy every other week to continue his photophoresis treatment.  We don't know how long we will continue photo.  It depends on Aaron and how quickly he can get off of steroids.  I am guessing anywhere from 3 months to a year.  The drive takes 2 days up, be in Cincy for 3 days, and drive 2 days back home.  Whatever it takes to heal this kid.  

Here is Aaron a year ago getting his transplant: