First the great news: Zoe’s ferritin level has decrease from 5000 to 880, a huge and positive response to her medications. Normal ferritin level is ~100 for most people, and high levels are not toxic in and of themselves, but ferritin is our primary indicator of disease activity — a decrease in that is a decrease in disease activity. We’re thrilled and Zoe is beside herself with wiggles at the news.
We talked to Dr. B about temperature reading a bit, given that Zoe is staying around 97º consistently. He indicated that the 98.5ºish temperature that we all know and love is really an average, not an absolute. Many people naturally range higher or lower than that, though not significantly, and as such a slightly lower consistent temp isn’t cause for panic. Zoe’s 97º might be closer to her norm than we had first thought. My first thought at this news was that it explains so much about why I always want the A/C high and Michelle is always cold when I’m comfortable, but that’s a story for another day.
We spent our morning getting blood drawn — myself, Michelle, and Maya. Mom and Dad went first so that we could show off our boo-boos to Maya, who took the news that she was going to be poked much easier as a result. There were tears, but no struggle, and now we are much closer to knowing if she can be a donor for her little sister. The tests will be sent off to Duke Pediatric Bone Marrow Transplant unit for testing along with Zoe’s.