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Thursday, September 5
The best news today was that Simon appears to be out of the window when a severe liver problem called "Venal Occlusive Disorder" can arise for patients undergoing transplant. His liver and kidneys seems to be doing just fine.
Simon continues to be in significant pain in his mouth, esophogus, stomach, intenstine. His dose of hydromorphone (a cousin of morphine) was decreased slightly to help him have fewer side effects, such as itching and halucinations. Most of his "halucinating" has been in the form of semi-coherent mumblings in his sleep. The itching has been torturous. Benedryl helps only somewhat. This afternoon Simon was having his nails painted with rainbows by art therapist Adrienne. He was unable to use his own fingers to scratch. He called desperately, frequently for help with itching, preferring Mary to do the task. At one point he turned Markus away and said, "Mommy, you're my itch girl!" Markus felt rebuffed. He said Simon had only called him "my scratcher" earlier in the day.
We find Simon sweet, funny, and pathetic in his discomfort. Poor guy.
It's time to start rooting in earnest for a rising trend in Simon's blood counts. The white blood cell count is the first that will rise. We'd like to see it clear 0.5 to get Simon out of the neutropenia range and start heading much higher. 2.0 to 4.0 would be fantastic.
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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