Kris took Haven in to the doctor on Friday to have her levels checked again. I honestly didn't know what high levels meant or what we were even looking at. After having her levels checked Kris met with Dr. Paz-Priel to review everything.
Haven is now scheduled to be in the hospital to have her levels checked three times a week - Monday, Wednesday, and Friday. She still takes the chemo two times a day (8am and 8pm) with her other medication. We just lowered the dose temporarily. Once she is stable they will again increase the dose.
Normal levels on this chemo (which I just found out on Friday) are at 150. Haven was at 300. So double the normal. I haven't listed the name of her chemo because it's too confusing when you read on it. Usually this chemo is given to bone marrow cancer patients or Leukemia patients. So it doesn't make sense to the normal person when they check Wikipedia or something. But we understand why she is on it and how they came to decide to use this one.
This week:
Bloodwork - Monday
Full day chemo - Tuesday
Bloodwork - Wednesday
Pulmonology - Thursday
Blood work/Dr. Paz-Priel - Friday
Kris will take Haven every day and I will meet with him on Thursday at the hospital. I have never met the Pulmonology doctor and have a list of questions for him.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Sunday, January 11, 2009
Haven's Schedule
Labels:
bone marrow,
Cancer,
Haven,
leukemia,
Neuroblastoma,
ROHHAD
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