Day +86: Falling

Originally, Ezra's doctor had said that she wanted to wait a while before re-testing his chimerism. She changed her mind and re-ran the test at the end of last week. The results now show that Ezra has only 3% donor cells.

The plan for now is to slowly taper off his immunosuppressive drugs. These drugs are used to prevent graft versus host disease, but they work by suppressing the immune system. The thinking is that the donor cells may be able to grow without these drugs interfering. But the same is true for his old immune system that is right now winning this battle. Ezra's old cells will also enjoy the benefit of no immunospressive drugs.

If there is a battle going on inside him, the underdog is struggling. His doctor says that until the tests say he has no donor cells, she believes the donor cells can still grow. She says she has seen this happen with other patients. But we don't need medical degrees to know this is highly unlikely. If these donor cells are going to win, it will take a miracle. They will re-test the chimerism after the immunosuppressive drugs are tapered off

Words don't do justice to how we feel. Susan, a friend whose little boy also went through transplant for Hyper IgM, gave us this wise advice: Deal with what is happening today as that is the only thing that is real. We are trying to do that, but at some point soon, Plan B, if there is a Plan B, is going to have to be figured out. So many of you constantly ask what you can do. For now, all that can be done is to pray and send positive thoughts for those few donor cells to grow.

One positive note: Ezra was negative for parainfluenza virus today. So some part of that broken immune system is doing something.