Sunday, December 7, 2014

Living In Limbo, But It's Ok

We had a chance to speak with Ezra's primary transplant doctor this week at clinic about the state of Ezra's immune system. As we wrote in the last blog post, we have been feeling very unsettled by the fact that the part of Ezra's immune system that isn't working right now (the ability to make antibodies) is exactly the main part that wasn't working prior to transplant. We got back the results on the vaccine antibodies test from a couple of weeks ago. He may have responded to the polio part of the vaccine, but for complicated reasons, the results are not clear. He definitely did not yet respond to the other viruses/bacteria in the vaccine. Ezra's doctor believes it is too soon. They will check again in two weeks. 

If he still has not responded, Ezra's doctor assured us that she does not think that it is because of Hyper IgM Syndrome. She said that the communication between the T cells and B cells that is needed for B cells to make antibodies (and what Ezra's immune system was not able to do prior to transplant) is the last function to come back post-transplant, especially in T cell depleted transplants. She is optimistic that if we can get him off the immune suppressant, then with time the ability to make antibodies will come. His IgG also stayed the same for the past two weeks. It would be reassuring to all if we can see an increase in IgG, but we will certainly take stability - and it buys us another two weeks without IVIG. 

Ezra's doctor also explained that Ezra is in a safer place in terms of handling an infection now that he has more T cells and their function is improving. They are most concerned when there are low numbers of T cells and they aren't functioning. We obviously don't want to test this out, but it was very good to hear that he is making progress. Another T cell check is cooking in the lab and we should have the results in a couple of weeks. 

Thankfully, we have started weaning the immune suppressant. The wean will be slow over several months. He is still on a very low dose of steroids and we will hold him on this dose for now while we wean the immune suppressant. We are praying that he doesn't have an auto antibody flare up while we are weaning. 

Despite all the uncertainty, we are starting to feel like there are slivers of hope for the future. For the first time, I bought a shirt for Ezra during the holiday sales to put away for next year. I had never before allowed myself to buy something in advance for him. It always seemed presumptuous to think there would be a next year. Throughout this journey we've learned the hard way to never think ahead and to take each day at a time. We are starting to allow ourselves little glimmers of a healthy future, and we so hope we aren't proved wrong.