1095 days ago

This is what I wrote 1095 days ago:

We’re on day -7. Andy will receive Sofia’s cells in 7 days. Andy’s weight today was 17.3 kg. He’s still constipated and will get some Miralax today. His hematocrit this morning was 24, the minimum allowed before a transfusion is 25, so he’s getting a blood transfusion as soon as there’s a time slot to do it. The chemo, antiviral, gammaglobulin anti-nausea and anti-seizure meds take all the time available during the day for his 2 lumen central line. Seems that the only central line availability is at 2:00 am. He’s getting one unit of blood that is around 200 ml. Andy has received 11 doses of chemo (Busulfan); we still don’t see any side effects other than a little bit of nausea in the morning around 11:00 am. He’s still drinking all of his Pediatric EO28 Formula. There are 5 more doses of Busulfan to go, then one day of rest and then 4 more days of the other type of chemo. Andy gets a medication to prevent seizures (convulsions) that are a side effect of the chemo (Busulfan), the name of the medication is Fosphenytoin. Turns out that every time he gets the medication at night his bottom starts itching. We prefer the itchiness to the seizures, final answer. Andy’s ANC (Absolute Neutrophil Count) today is 2,220 There’s a very high risk of infection when the ANC is lower than 500. Andy will most likely be around ANC=0 when he receives Sofiass cells. Wesre taking a lot of precautions on his room to prevent infections. We’re more or less used to detect infectious disease sources because of the primary immune deficiency. We use a lot of Purell, and we do our own floor cleaning, we have our own Clorox Ready Mop (website) and I use it about 3 times a day to clean the floor of room 613. Dr. Sung-Yun Pai (website), called today to ask if Andy could donate 2ml. of blood for research under the supervision of Dr. Raif S. Geha. This sample will help another boy who has gastrointestinal related problems. Sofia had a rough day today. I have to say that Sofia is as brave as his brother, she has all of our love and admiration for doing this. And this is for a very good cause. Turns out that by law all bone marrow donors need some screening blood tests prior to the transplant. I asked Robin the nurse at Jimmy Fund Clinic if they could break the law but she said they couldn’t. We did the tests prior to Andy’s hospitalization, but by ‘state requirement’ those test expire in 30 days. So we had to do them all over again. Phlebotomists at Children’s tried 6 times to get the blood samples needed with no luck. It was then that they called George R. from the CAT/CR. I don’t know why we didnt think about George in the first place. George made our day! It was on his first try that he was able to get the samples needed. George has an incredible ability, and I’ve asked him how he does it and his only response has been “I let gravity do the job”. George deserves a statue! I told him that, and he said he’d rather have a house on an island. Thank you again George! Sofia weight today was 8.3 and her hematocrit 38. ATF

 

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The Absolut Neutrophil Count or ANC is the total number of neutrophils in your white blood cell count. The lower the ANC the higher the risk of infection. When the ANC drops below 500 the risk of infection is very high.

The ANC is an important number for two reasons:

1) The ANC determines when chemotherapy can be given
2) The ANC determines when you are neutropenic and at risk of infections.

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