Aaron's Hyper IgM Journey

Thursday, February 23, 2012

Liver GVHD

I went home for four days to work and check on the house.  I left Michael with his hands full.  Because Aaron's central line broke, he had a temporary IV in his hand.  The IV had popped out and Mike found Aaron in a pool of his own blood Thursday night.  He said it was something out of a horror movie.  Even his nurse shreiked in terror.  Thankfully that resolved easily and the next day Aaron had a new central line placed.  The major risk of the surgery was a possible infection.  However, enough days have passed that an infection would have likely shown up by now.

Then  Saturday there was a horrible smell of sewage coming from the bathroom in Aaron's room.  Mike had to pack up everything and change rooms.  There were no rooms available on the BMT unit.  They had to move to the overflow unit on the 6th floor.  This turns out to be a much nicer area and we are happy here!  The nurses are nicer, the floor is quieter and we have three windows to look outside.  We will stay here as long as they will let us.

Sunday and Monday were good.  Aaron was in a good mood and played with Michael and walked a lot.  When I got back Tuesday, I was pleasantly surprised to see a huge improvement in Aaron's walking and stability. 

Unfortunately, it is not all good news to report.  Aaron's skin is looking better and better every day.  In fact, the doctor said he is no longer concerned about his skin.  The rash is resolving.  They are concerned with Aaron's liver.  His liver enzymes continue to go up and up.  The doctors are concerned about the liver.  They increased his steroids again and it does not seem to be making a difference in his liver numbers.  They have also tried the t-cell depletion without success.  They have more treatments they can try, but these treatments are not preferred.  We will see what they say today.


  1. I am praying for Aaron's liver. Always thinking of you all. Natalie

  2. Sweetheart...You all just keep hanging in there, I am sure his good health is just around the corner. Our love to all.

    Nancy/Dennis O'Brien

  3. I had liver GVHD too - it took longer than the skin, but it resolved as well. My liver enzymes are normal now - PLEASE keep your chin up and have faith. It is a difficult walk, but you are strong in HIM!