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Saturday, September 14
After two nights at home, Simon was scheduled for a blood draw on the 7th floor of Mott (normally this would be a clinic visit, but it was Saturday). Mary and Simon arrived about 10:30 am. Simon's primary nurse Susan was quick to draw the blood samples to send them off to the lab.
Simon has been receiving platelets every other day, so we were expecting a transfusion. His hemoglobin was also dropping when he was discharged on Thursday, so we were aware that might happen, too. It takes about an hour to get blood count results. Then it takes an hour or two to order a blood product. After that, platelets are infused over about 30 minutes. A red cell transfusion runs for 2 hours.
Simon and Mary settled into a room and started watching Saturday morning cartoons. Weren't we happily surprised when Susan arrived about 11:45 to say we could go home! Simon is "holding his own" with his blood counts. Today's platelet count is 23, barely above the outpatient threshold of 20, but good enough until his next clinic appointment on Monday.
Platelets recover the slowest of all blood cell types after transplant. Remember, the low end of the normal range is 150. Simon's current count of 23 is extremely low. (When it was 5 a few days ago it was harrowingly low.) Dr. Yanik expects Simon to be monitored and given transfusions for weeks to come.
Simon's below-normal hemoglobin/hematocrit levels indicate anemia, but do not necessitate a transfusion. They have been transfusing at a hemoglobin of 8. However, the low count does present challenges for all of us, especially Simon. He has mood swings, bursts of desperate frustration, headaches. It's hard for us to get along with him when he's like this, especially when he acts pretty unreasonable.
One good antidote is his endless fascination with entertaining stories and films. His current favorite author/illustrator pair is Jon Scziecka/Lane Smith. We first came to know the book "Squids Will Be Squids" at the library. We have recently acquired "The Stinky Cheese Man and other Fairly Stupid Tales" and "The Real Story of the 3 Little Pigs". On the TV screen at home, he's enjoying the extra features on his new DVDs (Toy Story, Bug's Life).
QUOTE
"DVDs are great because you don't have to rewind them!"
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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