Aaron's Hyper IgM Journey

Tuesday, November 27, 2012

Flares and prayers

Aaron is doing ok.  It is still too soon to tell.  His GVHD started flaring up again last week and I was devastated to say the least.  The rash is on both calves and is very mild.  We have been going down on his steroid every week and he is down about 45% from the highest dose.  He is still on a pretty high dose to be showing signs of a flare.  He is also now on the photophoresis that is supposed to make all of this better.  The doctor said not to worry that all of this can happen and he can still get better.  She is not too concerned at this point.

I will be leaving next week. I have to go home to work and will be leaving Aaron behind.  What a hard thing for a mother to do.  I try to remember that in the long run, this is best for everyone. 

We are still trying to find a location for Aaron to get his treatment that is closer to home.  As expected, nowhere in Florida is capable.  Sometimes I don't get Florida.  Florida is the fourth largest state by population.  Why is it they can't have good specialty programs in medicine?  Why can't they figure out how to tabulate a presidential vote?  Why do they keep increasing the toll road prices, when they budgeted that the tolls should have paid for the price of the roads years ago?  I will stop here. 

We are looking at Atlanta and Birmingham as options for Aaron's treatment.  Michael will take some time off from work in Dec to watch Aaron and he has vacation in January.  After that, Aaron has to come home or else things will start getting extremely hard for us. 

Aaron's GVHD may not resolve for 1-5 years from now.  We need to devise a plan to keep him safe in Florida so we can continue with our lives.  He is not thriving in the Ronald McDonald House.  And we cannot continue to live without working. 

This was a hard week for me.  A 13 year old boy lost his fight.  This boy was an incredible young man.  Mature beyond his age, yet such a fun kid.  He loved to go to the skate park with his friends.  Unfortunately, one day his world was turned upside down and he required a bone marrow transplant.  The 1st one failed and then he had a 2nd transplant.  He was doing really well for a long time.  Like Aaron, he started having complications.  Please pray for his family. 

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