Monday, June 9, 2014

Days +285 to +291: We'll Take It

Thankfully, Ezra's counts were good this week. His platelets actually made it to the normal range for the first time since February when the auto-antibodies appeared. His hemoglobin and other indicators of red blood cell destruction were good. His IgG level dropped again, but it was not as much of a drastic drop as the prior weeks. The tests looking more closely at Ezra's immune system showed that he has the type of B cells capable of making IgG. Based on these results, his doctor decided to wait on giving him IVIG. She set a threshold number for his IgG level and if he drops below that number, then he will get IVIG. These test results were reassuring because they show that Ezra's immune function has not been completely suppressed by the steroids and immunosuppressant. We were also happy to see that these B cells were still there because Ezra did not have this type of cell prior to transplant, which means that the donor cells are still working on building a new, functioning immune system.

The steroid wean continues, but the rate of decrease has slowed. The wean has to proceed more slowly now because it is more likely to see flare-ups at lower steroid doses. We of course want him off the steroids as fast as possible, but clearly this is going to be a long process. Good thing we have plenty of practice being patient. 

Even Ezra's liver levels, which had jumped up again in the past month or so, improved this week. Ezra's doctor is very pleased with his progress. We don't know if two weeks of good results make a trend. Maybe it does and maybe it doesn't, but either way, we'll take it.

No exciting visits or adventures to report this week, but the memories of Ezra's visit with Big Igi and his day at the ballpark continue to bring smiles to all our faces. We are also so grateful to those of you who continue to make donations to Ezra's Gift of Life donor circle ( and to other organizations in merit of Ezra's complete recovery. We are touched by the continuing support for our little man. We never imagined that so many people would care so much about a little boy's medical challenges. Thank you for sharing Ezra's quest for a cure with us and for helping others along the way.