What's worse, having no information or having the wrong information?
Today Grace was supposed to have a battery of tests in Boston, so she and Jon left home early this morning. (Heather couldn't go because she was still in the "stay away" window of the hospital's understandably restrictive Covid rules.) But this morning, someone—I don't know where; the rules are different depending on the facility—decided at the last minute that Grace shouldn't come, either. They e-mailed Jon to tell him they had cancelled all her appointments—but not until he and Grace were already on the road; he found out when they were turned away at the reception desk. So that was a three-hour plus trip wasted. :( And more than that—something about hotel cancellations, but that wasn't clear to me.
That's a good reminder to keep in mind that I am doing my best to provide accurate information here, but it's second-, third-, or sometimes even fourth-hand, so take it for what it is. I'll publish any corrections if and when I get better data.
Anyway, stress levels are high today.
The HLA test results are finally in, and Grace's fifteen-year-old sister is a perfect match! One more entry in the list of why having a large family is great. :) Looking at the results makes me want to learn all the more about genetic genealogy.
Also, I learned that even though you can't get on the bone marrow donor registry if you're under 18, the ideal donor is under 10, and 10-20 is also great. So something else must be keeping children off the registry, something that must not apply to family members.
Grace and her sister will have to undergo a series of rigorous health tests, and that was supposed to start today. However...(see above). It turns out that maybe it wasn't such a bad idea to cancel the appointments, as later today Grace herself tested positive for Covid.
Despite that, she starts another round of low-dose, maintenance chemo tomorrow. That's only an hour's drive away instead of 1.5, but it's a long appointment and a major chunk out of the day, and no doubt plays havoc with Covid-recovery for the drivers. The doctors are also talking about giving Grace some other drug or drugs to combat the Covid, so that's another prayer request: wisdom for the doctors and also for Jon and Heather. Being immuno-compromised, does Grace really need more medications, with risky side effects, when her body's already being assaulted by two or three different illnesses and deliberately-toxic drugs? Truly, medicine is as much art as science. So far, she's taking Covid in stride, as she is everything else.
We are most grateful for your prayers and well-wishes.
I’m pretty sure it’s ethics keeping the minors off the registries. They can’t legally give informed consent to be donors, and having parents consent for their children to undergo an operation like that is ethically questionable.
No doubt you are right, and that is the reason. But "age of majority/consent" is a slippery and unpredictable thing, at least in the U.S. For example, 13 is the magic age for many things online. In New Hampshire, an 18-year-old is considered fully adult—but he can't legally drink alcohol. In Connecticut, a 15-year-old and a 13-year-old can have sex without it being considered rape. Parents can do all sorts of things to and for their children, many of them irreversible, from piercing their babies' ears to circumcising their little boys all the way to having their own grandchildren aborted, and now, to dousing small children with strong chemicals to disrupt their sexual maturation, and even removing their normal, healthy sexual organs. An almost any age.
Although bone marrow donation is relatively simple, it does involve anesthesia, a risk one could say is too much for a child to consent to. (Though parents do it all the time for their children—for dental work, for example.) So it does make sense to keep children off the donation registry while encouraging familial donations. It just struck me as archaic, given all of the above.
