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.
