Day +183: Things Fall Apart

The latest chimerism studies show that Ezra's donor cells are back down to 3%.  The doctors had ordered a different type of chimerism test that looks at the specific types of cells to see the percentage of donor cells for each type.  This test came back showing the T cells at only 3% donor and the rest of the cells were 1% or zero.  The only bright spot of these results is that all we care about in Ezra's case are healthy T cells, so of all the types of cells, it's best that the T cells are highest.  But 3% will not do much to fix Ezra's immune system.  After these results came in, the doctors ordered another chimerism test using the same method that we've been using.  Unfortunately, this test also showed a drop to 3% donor cells.

Following these results, he has been taken off of the immunosuppressants.  We were still in the process of the slow taper and had been on hold because Ezra had a rash, and they were concerned it was GVHD.  The rash has thankfully cleared up with a prescription cream and with these bad results, they are no longer concerned about GVHD.  The plan is to wait until the immunosuppressants clear his system, which can take some time, and then re-test the chimerism.  It seems like his doctors do not want to discuss next steps until we reach the point where there are no donor cells.  They seem to want to believe there is still a chance the donor cells will grow.  We know they're right in part because it has happened once, maybe it will happen again.  For now, this all seems ok because we already know the back-up options are bad - very bad - and Ezra is doing well enough that there is no rush. 

Maybe the title of this post isn't completely correct.  Only some things are falling apart.  That which is in Ezra's control is going well.  He is thriving and growing.  For the first time since he was 4 months old when he was first diagnosed, his weight is on the growth chart at the 3rd percentile (Dr. G, hope you're reading this - hooray!).  We are trying hard to keep him occupied at home.  Here is Ezra with the wonderful Sasha from Mini Scribblers Art who has been graciously stopping by to get creative with him.  And he is learning to ride his bike so he can one day keep up with his Daddy.  It is so hard to reconcile the strong boy on the outside with the trouble within.