Lift Up Your Hearts!

With good reason, we have been focusing here on Grace. But there's another half to this bone marror transplant, and that's her sister-donor, Faith. They were a perfect bone-marrow match, and Faith was delighted to be able to provide this life-saving gift to her little sister.

But it has not come without significant sacrifice, and I daresay insufficient preparation. The bone marrow transplant literature makes it out to be a much lighter procedure than it is. The pre-donation testing is rigorous and extensive—Faith fainted at one point—and the donation itself involved forty-seven separate insertions of the needle into her bones! (Possibly twice that many; I don't remember if that number was total, or for each side.) They had made so little of the strenuousness of the procedure that Faith had hoped to be able to join her friends on a ski trip a few days afterwards—not to ski, of course, but to sit in the lodge and enjoy the camaraderie and atmosphere. That was so far from the reality that I question whether "informed consent" was taken seriously.

Here's what happened, and is happening, according to Jon's most recent post:

When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it.

She had 3-4 days of significant pain, and has certainly gotten better since the first week, but at more than 4 months, continues to have 2 out of 10 pain 24 hours a day. And more pain if she exerts herself too hard.

Grace's doctors referred Faith to her primary care, who took some x-rays and referred her to physical therapy. The x-rays didn't show any fractures. The physical therapist didn't really know what to do, in that she didn't know anything about bone marrow donation, but asked a bunch of good questions and gave her some exercises to do daily. She is supposed to go back to her primary care if she is still in pain in a month or two. We did find on Google that 4% of donors are still in pain at 9 months and 1% are in pain at 12 months, but the cancer doctors said that Faith shouldn't be in that class of donors, since she is so young. We do wonder if the "hard time" the doctors had when collecting the bone marrow would result in this extra pain, but we don't know.

Faith wants to play soccer in the fall, but if the pain continues, will not be able to. She would appreciate your prayers as she tries to rest, but also work on getting her body ready for soccer.

I know Faith, and I know that she would have made the donation anyway, even if she had known the consequences. But facilities that do bone marrow transplants should be paying more attention to the donors, who are an absolutely essential part of their cancer treatment process. Shouldn't there be someone on staff who knows about the consequences and complications, and can do more than send her back to a primary care doctor who undoubtedly knows little to none of that? I have great respect for physical therapists, and this one sounds good, but they don't have this specialized knowledge.

When you pray for Grace (thank you!) would you please also pray for Faith?  For wisdom for her, her parents and the doctors; for complete healing; and that she will be able to get fully back to normal life (and soccer!).