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Saturday, September 7
Well, today is Day 10. The doctors have said days 4-10 are the worst. And guess what? After a morning of sleeping, Simon actually felt significantly better this afternoon!
He no longer has a fever (no Tylenol required). His mouth seems to be bothering him less now. His ears are still causing pain, but they are relieved somewhat by a numbing ear drop. Dr. Yanik has warned that Simon's ears may actually hurt more for a little while once his counts come in. Why? Because once he has white blood cells, his body will be able to make puss. Presumably there is a colony of germs behind Simon's eardrums, along with the swollen and somewhat chemo-destroyed eustacean tubes. The white cells will head there to fight off the infection and heal his wounds, and the pressure might be worse, causing more pain.
Well, Simon's ear pain has been worse for a couple of days now. And, perhaps the most encouraging sign of all, his white blood cell count was 0.4 this morning. He's still in the neutropenic range, but it's looking like an "uptrend". We are very relieved and encouraged.
To top it off, Simon spent time this afternoon doing many of the things he has barely had the energy for: coloring, playing on the Internet, playing with his Thomas trains on the floor, and playing the "Bug's Life" CD-Rom game. He isn't ready to eat yet, but he did start thinking about humous again this evening.
QUOTE
Relaxing after his busy spurt of activity this afternoon, Simon was in a pleasant mood and commented on the lights we have strung in his room.
Simon: "The Christmas lights look pretty in the dark."
Simon: "I can feel the power of my life."
Mary: "Where?"
Simon: "In my body."
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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