Monday, July 28, 2014

Days +334 to +341: Got To Keep It Up

Just a quick update to let everyone know that Ezra's counts were once again good this week. Ezra's doctor called his counts "beautiful." His hemoglobin was up and all the other numbers were normal. The only issue, aside from the overarching issue of Ezra needing to grow a new immune system, is his liver function. His liver levels have unfortunately increased again. The doctor believes that it is from the increase in steroids. For now, the plan is to wait and see if the levels decrease as we go down on the steroids. There always has to be something of concern on this crazy journey. 

Ezra also had an eye exam to check his eyes for side effects from his two transplants. They are also going to be watching his eyes closely for cataracts, which can be a side effect of steroids. The doctor said it's too soon to see cataracts from the steroids, but for now, Ezra's eyes got an "A++."

We really, really need a period of calm and good counts to get Ezra off the steroids and immunosuppressant. We went down again by a small amount on the steroids, but it's going to take some time before he's even back to where he was on the wean before this latest flare up. Getting off these drugs is the key to allowing Ezra's donor cells to build him the new immune system he so desperately needs. We know those donor cells are there, waiting to be allowed to grow. We can't wait for them to break Ezra free of his life of isolation, and pray that it is only a matter of time.