Aaron's Hyper IgM Journey

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:

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