Today was our second clinic visit. Last week were were scheduled at 7am which was great, we didn't have to worry about food or water for 8 hours before since he was asleep. But this time his appointment was at NOON so we woke him up at 3am for breakfast so he might make it through. He screamed at us in frustration all morning and could not figure out why we were withholding the goodies like Cheerios, milk, cheese sticks and noodle dishes (his new main food groups).
As I posted earlier Charlie has been constipated and throwing up. When we mentioned this and the fact that he isn't hungry or eating to the oncologist, she immediately ordered additional blood work and looked over his x-rays from Saturday night. Charlie had his bone marrow biopsy and while he was sleeping it off in the recovery room Dr. Albano brought in her diagnosis that read, "Patient is full of poop. Administer Miralax and Ex lax alternating every 6 hours until relieved." With a smile she said the technical term for what is going on with the little guy is FOS, I'll let you figure that one out ;)
Due to the extreme constipation Charlie did not get his IV chemo since constipation is a side effect of the Vincristine. Instead he got a bag of saline and sugar water to even out his salt and low blood sugar. Our quick 2 hour visit turned into almost 5 hours so he could get enough fluid in him.
The best part of the visit... Based on the blood and bone marrow samples taken today Charlie has NO VISIBLE CANCER CELLS!!! I wouldn't say he is in remission or cancer free, there are billions of cells in his little body and the sample sizes aren't great enough to make that statement yet. At the end of this month he will have another sample taken and sent to a lab where they will do an in depth look and tell us for sure. Dr. Albano was VERY excited about his numbers. Even the nurses said they haven't seen her that pleased with day 14 labs in a long time. Charlie's ANC, or his number that determines his ability to fight off infection and remain social was 700. It was lower than last week (1330) but still high enough (greater than 500) that we can say go to the grocery store and not worry. In comparison, one of the other kids on Day 14 treatment, Bella's ANC was 2. Scary.
We will head back to the Clinic after Mt. Charlie erupts his blockage for the dose of chemo we missed. It doesnt sound like we will be too off track as long as that happens in the next day or so. They left his "tubies" in place so that when we do go in we don't have to traumatize him with another port access at the next visit. More on "Tubies" to follow...
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