Thursday, November 21, 2013

Days +87 to +90: The Silver Lining

If every cloud has a silver lining, then we found the silver lining of Ezra's GVHD. He now has a very small number of T cells. Although the T cells are causing the GVHD, if we can get it under control, then having T cells is exactly where we want to be. The steroids prevent T cells from growing, so the sooner Ezra is off the steroids, the better. Once he is off the steroids, the expectation is that the T cells will continue to grow and Ezra will be on his way to a functioning immune system. IF he can get off the steroids.

We have thankfully started to wean the steroids. The rash is completely gone. The dose has been cut in half and will remain that way for a week. If there is no sign of GVHD, we will cut the dose again and go from there. If the rash comes back, he will go back on the higher dose. We are anxiously watching and trying not to obsessively check his skin.

The other piece of good news is that the higher level chimerism test showed that all cell lines that Ezra has (not including T cells) are 100% donor. Yes, it is still possible that Ezra's T cells can end up being mixed chimerism, despite the fact that all other cell lines are 100% donor. T cell chimerism will be checked once he has more T cells.

The wean couldn't come soon enough. The steroids are wrecking havoc on Ezra's stomach. We are already seeing improvement in how he feels since cutting the dose. We've been struggling to figure out ways to help Ezra deal with his pain. Fortunately, Ezra has figured out his own way to deal with the pain - with "pain rockets." He pretends that one of his rockets is a pain rocket and he launches it into space where it hits an asteroid and all the pain disappears into space where it can never hurt anyone again. It's working for him, at least for now. 

The super-sized menorah is back on our front lawn ready to light up our Hanukkah! For those of you who have noticed compared to last year's picture, yes, he is most definitely taller! Here's to hoping that the holiday of miracles brings the miracle of no GVHD and a growing immune system.