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Monday, August 26
Simon was feeling mostly much better today, with the chemo no longer pumping into him.
We are still trying to figure out a better way to give him the glutamine that is so highly recommended by other parents to prevent mouth sores. His dose is four pretty big capsules (way too big to swallow) . So, we empty out the gritty powder inside and try to come up with new things to mix it into.
His appetite was returning, and he asked his Grann for humous, guacamole, and chips. It took a little while to get the right kind of anti-nausea medicine into him. In fact, he kept eating away, and spitting up now and then. (And it smelled amazingly like what he was eating...
In the evening, Simon and Miriam's lovely daycare provider, Linda Britt, came by to watch a video with Simon. Miriam and Grann also visited briefly. The secondary purpose of Linda's visit was to enable Mary and Markus to take a much needed break together, which they spent over tempura, teriyaki, and Sapporo beer at a local restaurant called Miki.
QUOTE
[as Linda was leaving, Simon said to her, with the quiet gratitude of a deserving honoree]:
"My mom is pausing her work."
GLOSSARY
BLOOD COUNTS
WBC (white blood cells; infection-fighters) normal range: 4.5-13.5 K/MM3
Hemoglobin (carries oxygen in blood, low=anemic) normal range: 12.5-16.0 g/dl
Hematocrit (not totally sure, but related to red blood cells) normal range: 36.0-49.0%
Platelets (blood clotters; low means risk of internal/external bleeding) normal range: 150-450 K/MM3
ANC (absolute neutrophil count; basic measure of immune system) normal range: 1.8-10.1 K/MM3
GLUTAMINE an aminio acid that can reduce mouth sores after intensive chemotherapy. Not commonly used at UM Hospitals, but hightly recommended by other parents in our Neuroblastoma listserv community. Dr. Yanik said it would be OK to try it and ordered it for Simon.
MYEOLOABLATIVE destroying of bone marrow. Pre-transplant chemotherapy is designed to kill off all bone marrow in the body. The transplant introduces new cells to create new marrow.
NEUPOGEN white blood cell production stimulating agent; injected subcutaneously while WBC is low.
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