Sunday, January 4, 2015


The past two weeks have been great fun for Ezra, and he has enjoyed the holidays and the new year celebrations. We don't have the best news to report on the medical front, unfortunately. We got the results back on the vaccine antibodies. Unfortunately, Ezra has not responded to the vaccines. It does look like he has responded to polio, one of several vaccines he received, but the doctor wants to see him mount more of an antibody response before we breathe any sigh of relief or make any changes to his treatment/situation. There is no real explanation for why he responded to one vaccine and not the others. The plan is to give him another shot in a month and see if he responds then. 

We are of course disappointed and worried that he did not respond to the vaccines. Ezra's doctor, while also disappointed, is confident that with time and lower doses of the immune suppressing drugs, he will be able to have a proper antibody response. Bottom line is that we continue to need to be patient. We've been patiently waiting for a cure for the past five years, and we can certainly stay the course. We always say that as long as things don't go in the wrong direction, we can be as patient as can be. 

In the meantime, he needs to get onto a lower dose of the immune suppressant to have proper immune system function. The dose has been going down by very small increments each week. So far, so good. His counts are not showing any signs of autoantibodies. The only other lingering issue at the moment is his iron levels, which are dipping again. At least that issue is easily remedied with IV iron, as long as we keep a close eye on the levels. 

We are prepared to hunker down for the germy winter. Our number one goal, as always, is to keep Ezra safe, healthy and happy, and hope that his immune system gets its act together soon. If we don't blog as often, please don't worry - it means that all is status quo, at least for the most part. Here's to hoping for some quiet times as we start 2015!

P.S. For those of you who do not follow Ezra's Facebook page, here is the link to an article I wrote about Ezra and the Gift of Life Bone Marrow Foundation for the New York Times parenting blog: