New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Wednesday, September 30, 2009

The Tiger Woods of Bone Marrow Transplants

Today was d-day and by d I mean the first doctor's appointment. This was the day that we met with the physician who will be managing Nathanael's treatment, otherwise known as the Tiger Woods of bone marrow transplants. I say that because she is considered the world's expert in treating children with Wiskott-Aldrich Syndrome and has performed more transplants on Wiskott kids than anyone else ever.

It's always a little anticlimactic when you meet someone of that level of expertise. She walked into the room and I thought, "So this is her." Truth is she looks like everyone else and honestly I don't really know what it means to be the best there is at treating a certain disease. I've actually seen Tiger Woods up close. I've seen what sets him apart when it comes to driving a golf ball or making a difficult approach shot. I don't know if she has some kind of wicked technique for finessing a match between a donor and a recipient. I think what we'll find is that should complications arise, we'll be grateful that the "clubs" are in her hands.

One thing is for sure, the place exudes confidence. From the nurses to the different doctors we saw, from the chief through to the members of her team, it quickly became clear that we were in the right place. They treated us with respect, answered our questions, and took great care of Nathanael.

Over the next week or so, we'll get the schedule for his pre-transplant testing. They will need to thoroughly check him for infections and some of the tests, like his endoscopy/colonoscopy, will require sedation. He'll get an EKG and an MRI and lots and lots of blood draws. Once they give the green light, the preparatory regimen of chemotherapy will begin most likely in early November with a transplant goal of mid-November.

Many folks have asked something akin to, "So you've found a donor?" They way they describe it, Nathanael is fortunate in that we have many donors. It's more a matter of choosing one than finding one. We were told today that one potential donor had completed their screening lab tests and if the doctors want to use that person, we are good to go. I don't know what will make them want to choose one over another but they do.

So now we wait to get a schedule for his tests. We can't really go to public places because we need to minimize the risk to Jamison getting sick but I think we can go for some drives and anyone who is around here, if you haven't been sick or around someone who's sick, and don't mind using hand sanitizer when you walk in the door, come on over for a visit.

Once again, you can contact us by email, cell or Facebook.

No comments:

Post a Comment