Sunday, December 22, 2013

Days +111 to +121: How Far We've Come

One year ago, we announced on this blog that Ezra's transplant had officially failed. We had just received the news that he had only 1% donor cells. Faced with dismal options, we wrote "It may be that the right decision is to not do anything. To let him be. To let him live. And to hope that someday soon that long sought after match appears." A few months later our hopes and prayers were answered when Ezra's donor appeared on the registry. After much anguish, we decided that it was not better to let him be and that a chance at a cure was better than life with a sword hanging over his head. And now here we are one year later. The verdict on this transplant is still out, but things are moving in the right direction and so far we are in a much better place than last year at this time. There is much to be grateful for.

The latest round of testing on his T cells is back. There are multiple types of T cells. The type of T cell that he had a small amount of last month is down slightly, but basically the same, which is likely due to the steroids. The good news is that a small amount of another type of T cell has appeared! One step back, one step forward. 

There's been another good sign: Ezra has been able to go longer in between infusions of his immunoglobulin replacement therapy (IVIG). This is the treatment that Ezra has received every four weeks since he was diagnosed. It is what has kept him alive for the past four years. Ezra does not make an immunoglobulin called IgG, or at least he didn't before this second transplant. This was the level that came back drastically low when Ezra was sick with pneumonia at four months old and our first indication that there was something terribly wrong with his immune system. Each week, his levels of IgG are checked to see if he needs the treatment. The level has been dropping, but more slowly than his usual rate. He is now more than 7 weeks without IVIG, the longest he has gone without it. He may need it soon, but the doctors tell us that the fact that he is holding longer means that maybe, just maybe his body is starting to make IgG and his new immune system may be starting to function.

Ezra remains on a low dose of steroids. The wean is going very slowly. Thankfully, there is still no sign of the rash.

Ezra was loving the snowfalls of last week. He had been waiting for the first good snow basically since we got home from the hospital. He ran around yelling "snow angel!" and dropping backward into the snow. Seeing the snowflakes glittering on his newly re-grown eyelashes was a breathtaking sight. A little snow angel indeed.

Happy Holidays!