Tuesday, December 3, 2013

Days +91 to +102: Adventures in Steroid Land

Life with Ezra on steroids has been interesting. First, the good news is that the rash has not re-appeared. We have been able to reduce the steroid dose twice, and will be starting a third reduction. The rate of the wean starts to slow down now, so Ezra will be on steroids for at least another month, depending on how things go. It is frustrating because the steroids suppress T cell growth, but we will do whatever gives him the best chance of overcoming the GVHD.

Despite the reductions in steroid dose, Ezra is still dealing with the side effects. The steroids have caused his appetite to increase, which right now is a good thing because he is still regaining the weight he lost during transplant. The problem is that his appetite is mainly for chips. Steroids effect the salt-water balance in the body and can cause bloating and an increase in blood pressure (and blood sugar and many other bad things), so the doctors want us to watch his sodium intake. We have now gone from desperately wanting Ezra to eat and encouraging him to eat whatever he wants as long as he eats, to gently pulling back on the one food he wants more than anything else. Poor little dude must think we are crazy. He also has been experiencing the drastic highs and lows from the steroids. He goes from hyperactive to completely exhausted. Ezra is not a hyper child, so the last two weeks have been interesting. We are hoping that as we go down on the steroid dose, the side effects will subside.

Ezra has reached the Day 100 milestone. Day 100 is often touted as a marker of survival. Studies show that patients reaching day 100 post-transplant are more likely to survive in the long run. In Ezra's case with the type of transplant he had, Day 100 isn't all that significant. The more important milestone will be when he has a strong number of functioning T cells and is able to be free of the steroids without GVHD re-appearing. That will be cause to celebrate.

Ezra has been basking in the light of Hanukkah. Candles, songs, a gigantic menorah, and presents - what's not to love about Hanukkah when you're four years old? This year, the unspeakable thoughts that have tainted every joyous moment since Ezra was diagnosed seem to be a bit more subdued. Ezra's health is still in a very precarious state with so much of the path ahead unknown, but the progress he has made so far is huge. So, maybe day 100 is indeed a moment for feeling a little triumphant in the long fight for a cure. 

Happy Hanukkah! Love, Robin, Evan and Ezra

P. S. Ezra wanted to make a YouTube video of one of his model rocket launches "for other little kids." He likes asking how many views his video is getting, so if you have a few minutes, check out his video at