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

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.

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: