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TRANSPLANT

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DAY +1
Recover
Thursday, August 29

Simon was notably less comfortable upon waking this morning. His face is puffy, his eyes are dry and itchy and a bit bloodshot, he noticed his first mouth sore (ouch!), and his voice "isn't working" (presumably because the mucositis in his mouth/throat/gastrointestinal system is beginning to set in). Mucositis is the condition that chemo patients can get when the rapidly dividing cells of the mouth, etc. are killed off by the chemo. Unfortunately, chemo agents are too unsophisticated to know if they're disrupting the division of a nasty cancer cell or a healthy mouth-lining cell. So, the body desperately needs to heal. This healing process is complicated by the fact that the patient feels little inclination to nourish himself because it hurts too much to swallow.

Simon's first mini-dose of morphine came around 9:00 am. By mid-afternoon, the Pain Service had sent up a pump to administer the morphine. It is set up to give him a tiny dose on command by pushing the button. When/if his pain gets worse, the pump will be set to provide a steady dose of morphine, with the option of additional "pushes" of the button as needed. We hate to think of Simon needing so much medicine for pain, but we are taking the advice to stay ahead of the pain, rather than try to bring it under control later.

In a day or two, the doctors will put Simon on TPN, which is intravenous nutrition. We would dearly love to get him back on Ambrotose because it is thought to provide the building blocks his body needs to heal itself, and Simon's doctors are supportive. Unfortunately, Simon's nausea (currently controlled with overlapping doses of Ativan and Zofran), his disinclination, and his sore mouth have made it impossible to get the stuff into him yet today.

He's been napping heavily this afternoon. When he woke once to pee, he managed a chipper, whispered comment about how his urination was somehow like the functioning of the wheels of a locomotive, like a piston. He seemed pleased by the thought, and I (Mary) was delighted to see his momentary animation. Then he snuggled back to sleep.


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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TODAY'S COUNTS
WBC: 0.1
Hemoglobin: 10.6
Hemotocrit: 30.9
Platelets: 49
ANC: can't be calculated with such a low WBC
Transfusions: none

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