Yesterday I emailed the doctor at U of M who is doing the transplants for EB kids.
Here's what I know:
- They are opening up the transplants to Junctional kids. Only seven have been done so far, and those just on RDEB patients.
- Bone marrow transplants are risky, especially without an exact (sibling) match
- They recommend that, since Jonah is doing so well, we hold off for now, although they've offered to evaluate him at any time.
There is so much to think about, and I've looked at the sites of all the transplant kids that I could find. I'll tell you - these transplants are no joke. There is lots of risk involved, and right now, for us, it's just not worth the risk. And by risk I mean that he could die. They would do chemo and I think radiation as well to kill off his immune system. THEN, he would get the transplant, and from what I've seen on these other kids' sites, it gets worse before it gets better... high fevers, worse sores than ever before (temporary but excruciating nonetheless), painful sores in the mouth, isolation for a long time.
Matt and I will be pursuing all the preliminary tests etc that we need. HLA typing (to determine who might be a good match... The doctor said that it's unlikely we'll find a good match among our relatives), genetic testing to determine where, exactly, his deficiency lies, and any other tests they require. If he gets in a more urgent situation or it becomes less risky, we want to have our ducks in a row.
But we may NEVER choose this option for Jonah. That will depend on how well he continues to do. If it becomes this option or death or this option or a much more severe state than he's in now, we may choose this. But right now, we just don't consider the risk worth it... especially since NONE have been done successfully without sibling donors (I don't think, at least). If we thought he had Herlitz, it would be a totally different situation.
If you'd like to follow a couple of kids with me, you can follow:
Samantha - seven days post-transplant, having a rough time right now
Hannah - about 140 days post-transplant, doing well
Keric - about 260 days post-transplant, doing well
*For Samantha and Keric, you'll have to register with Caring Bridge... it only takes a minute.*
Please be in prayer for these kids, as well as kids in a more severe and urgent situation than Jonah's and their parents who are having to struggle with this decision NOW. It's a big one and a hard one, and I can't imagine having to make it. Unfortunately for a "cure" to become a "cure," someone has to go first. These families are so brave and strong for choosing this. I know it is so hard. But Faith in God has been a recurring theme I've found with these BMT kids and other EB kids in general. For the most part, they're still praising in the storm. I'm amazed at their faith and strength.