Lift Up Your Hearts!

It's wonderful to spend time with Grace in person and see what a bright, capable, and happy three-year-old she is! And apparently healthy, though the knowledge that appearances can be deceiving is always in the background. Her new medication appears to be proceeding with only minor side effects, though it's still too early to see any noticeable good effects. She takes her pills like a champ: not only has she learned to swallow them, but she does so without any help, not even a drink. (The single Tic Tac given afterwards is still an important part of the routine, however!) She is adjusting well to her cute multi-colored hearing aid.

However, the background concerns are poking into the foreground, after Jon (Jon, not the doctors!) noticed something strange in her last bone marrow aspirate results. The communication between Boston and Dartmouth is STILL horrendous. (Boston is where the bone marrow transplant was done, and where all those records are, despite them officially having handed her care off to Dartmouth.) As a friend who has had plenty of her own experience with childhood medical issues, wrote, "You want to trust that [the doctors are] doing everything, but the reality is that no one will pay attention to the details and care for her health as much as you."

The upshot is that the results showed evidence of something called the JAK3 mutation, which apparently is related to but not the same as the mutation that causes her NF1. Maybe; I'm not clear about that. But it's in the bone marrow and was supposed to have disappeared in the transplant along with everything else about her original marrow. So the urgent question is: Is this an error (they happen) or a sign that her old bone marrow is still lurking in her system? This coming Thursday the doctors will take another aspirate (with all that comes with it, including general anesthesia) to check the results. As Heather said, Please pray that Grace has no trace of her old marrow and for peace.

Below are more details taken from the Daleys' post.

Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant.

Dartmouth doctors can't see her Boston results to compare [insert eye-roll emoji here] so they contacted the head transplant doctor there. She said that seemed odd given the good chimerism results, but she wants another aspirate as soon as possible to make sure. So that is scheduled for June 12. We aren't clear as to why no one noticed that before. We think the Dartmouth doctors thought it was expected, and I guess the Boston doctors didn't see the results? It does make us wonder if we need to be paying more attention - we try to read all of the medical records, but don't always read through everything, and sometimes it gets pretty technical.

Please pray that Grace has no trace of her old marrow and for peace. We know a boy who had a relapse and had to go through the whole transplant process a second time and we really don't want to follow in his footsteps.

I'm letting the Cares Chorus be an earworm in my head.

Thank you, as always, for your love, your concern, and your prayers.