April 16, 2017 (Scott)
A very happy Easter to you all. We hope you’re enjoying a bright and sunny Sunday with family and friends.
On Wednesday morning we headed back to the infusion clinic for Maya’s quarterly LP and chemo. Things had gone smoothly over the past month– we had a terrific vacation to Arizona and were making final plans to get Lincoln into the WNC Child Development Center. Maya had been feeling good, and we were all starting to enjoy the stability, so Wednesday morning’s labs came as quite a shock.
The initial numbers were so low in WBC, Hgb, and platelets that the request was made for a recheck– super stat. A few minutes later, the numbers were confirmed: white cells at 0.7, platelets at 55, hemoglobin at 5.7, ANC 190. For comparison, the numbers we would expect to see are closer to (3.0, 300, 11, 1200). . . the hemoglobin result on Wednesday morning was even lower than when Maya was diagnosed.
All this news would have been far less shocking had Maya shown any signs of being so low. In particular, her red cell count was in a dangerous range– the threshold for transfusion is 7.0, and she was at 5.7. The rest of the day was spent at the infusion center with extra consultations and ultimately the determination that we’d go ahead with her chemo infusion and lumbar puncture followed by a blood transfusion to stabilize her red cell count.
With Maya’s cell counts were down across the board, the most likely explanation is that we overshot her dose of 6-mp and we’ve over-suppressed her marrow. Of course the unavoidable parent fear-response is laser focused on relapse, but that’s not the most likely explanation at this point. (Numbers at diagnosis were similar in some areas, but her WBC count was 28).
We hope to see a better trend over the next few weeks with her off the 6-mp. Assuming that dosage was the cause, we’ll need to carefully reintroduce the drug and return to monitoring cell counts weekly until we’re more sure the stability is not an illusion.
The rest of the week was a swift return to extreme precautions. We haven’t seen an ANC under 200 in a very long time, so it will be a bit longer before Lincoln is introduced to the school. I suppose it’s a good thing he doesn’t know what he’s missing, but Sara and I agree he’s in need of some new challenges. . . maybe just a few more weeks.
Through it all (and amazingly), Maya has been feeling good, playing, creating, singing, and pushing limits. Kids are truly resilient–I can’t even imagine what a Hgb count of 5.7 would feel like, but I guarantee I wouldn’t be doing much of anything normally. We’ll check numbers again next week, but we won’t expect a recovery by then– the cumulative effects of the 6-mp will take about two weeks to clear, so we’ll be patient and positive– focused on Maya’s bone marrow functioning effectively and recovering as it has done each time since treatment began.
We thank you all for the continued support and understanding. So many people contribute in large and small ways that allow us to consistently make Maya’s health the number one priority in our lives. This week has been a major twist in our story, but we’ll continue to adjust and be vigilant. Together we’ll get past this and every challenge to come.
Thank you, and happy Easter Everyone.