Things are well! I feel guilty I haven’t updated here. Jila responded well to immunotherapy after all (all the way back in May 2013), and the farther we got away from having to think about a bone marrow transplant, the more I wanted to put it behind me. It was really traumatizing to face the possibility that she would not respond to the ATG and the fact that there was no match. It is still traumatizing, but I’ve got my sea legs now.
Today Jila is in remission, and her counts are strong, but still on cyclosporine. Her counts dipped when trying to wean last summer so the docs want to keep her on it for at least a few more months. Some patients are on this drug on and off for years. Some relapse. Some put the whole thing behind them as an isolated episode. We are hoping for this last outcome, naturally.
We’ve had a chance to catch our breath and get our lives together after 2013 threw us totally off the rails. And now I feel ready to start advocating and helping organize and develop resources for those needing bone marrow transplants. Obviously I hope Jila will never need one, but I want to do what I can to try to find one just in case. The worry that she will need one will probably never go away. So I’ll feel better if I keep myself busy trying to find a match for her, and the wonderful side benefit of this is that along the way this should help get matches for other patients.
I have no idea how to do this (i.e. organize a campaign and/or swabbing drives) and honestly have been blown away by what I’ve seen other parents accomplish, under unfathomable stress. I would like to help make a difference, especially because I feel so incredibly thankful and lucky that our outcome has been good so far. So I’m going to see what I can do. Stay tuned.