Sunday, January 19, 2014

Days +144 to +150: The Good, the Bad, and the Ugly

It has been a heck of a week.  Let's start with the good news. Ezra's liver numbers started to go down this week. They are still way too high, but what matters is that they are decreasing. Second piece of good news, Ezra's whole blood chimerism this month is 99.8% donor. Cell line chimerism will be done this week. Next fabulous news - T cells have increased! One line by just a smidge, but another by a lot. To top it all off, his IgG level increased for the first time ever without treatment and it went up by a lot! We could barely believe this last piece of news. Can this really be happening? No denying it, his immune system, at least in part, is starting to work! 

Our happy dancing came to an abrupt halt when Ezra broke out in a rash that quickly spread all over his body. Total panic time as everyone was thinking his GVHD was back and the doctor was already talking about putting him back on high-dose steroids. By the time we got to clinic the next day, the rash was gone. Ezra is on what should have been his last week of steroids and the dose is very small, so the doctor decided that we would use topical steroids and see what happens. The rash then returned this weekend, but it clearly looked like hives. We gave Benadryl and it quickly went away. Based on pictures of the rash and the fact that it is responding to Benadryl, the doctor thinks that it is either from the parainfluenza virus, another virus or an allergic reaction, and not GVHD. We are giving him Benadryl around the clock for now and so far it is controlling the rash. The question is now what is causing the rash? No doubt this week will be spent figuring this out. We are just praying it does not end up being GVHD because then all this progress will be for nothing and we will be nowhere again. 

Ezra is still coughing, but it is not terrible. The doctor is concerned with the lingering congestion because it can turn into a bacterial infection. He had another chest x-ray and all was clear. Hopefully, his new baby immune system will figure out how to kick the virus soon. 

This coming week will no doubt be crazy as we try to figure out this rash. We are anxious for this latest challenge to resolve (and for some kind of assurance that this is not GVHD) so we can get back to celebrating the good news. 

P.S. If you're wondering what Ezra is doing in this picture, he was filming a "news show" with one of his amazing teachers! The top story was the construction of the new Tappan Zee Bridge :)