Day 37 For Real
Usually I am up much later writing these posts, but because both daughters are sleeping, I suppose I could start to write about their day.
Well, that is it, they did nothing today. With our grocery budget replenished we went shopping. It will be one of the last times that Isa will be able to go out. And her visitors to the house will be even more restricted. Her ANC went from 1100 to 600 and is on the way down. We could see 0 to 200 range next week.
The Ara-C or Cytarabine works within about 7 days. With the three doses she’s getting at home, that is about 10 days from this past Thursday that she will likely be at the lowest, so, next Sunday. We’ve been through all of this before in Consolidation. Now, add on top of that, within those 10 days she will be getting another dose of Vincristine and two shots of Peg-Asparaginase. Both of those have their own effect on the body as well.
The Doc there has a reassuring way about him. Even though I am SUPER-SO concerned about mold, he suggested that if her ANC is upwards of 1000, even now at 600, she is less likely to be infested with mold. BUT if her counts drop and stay there, then the likelihood increases. He also stated that there was NOTHING we could look for that would indicate a mold issue in her lungs.
I am resting a little easier. BUT that does not mean that I am gonna reduce the precautions.
Yesterday, Isa came out from the bathroom without her dress off to ask me why she had a band-aid on her back. She doesn’t remember the spinal tap. We had two, one last week and one this week.
They send away the spinal fluid to check for hidden blasts. Ideally, there will never be any, but they check and inject methotrexate to kill any there.
When she took off her band-aid I noticed some redness smaller than a dime but likely the size of a big pea. This doesn’t usually happen. Most of the time it is just a pin-prick. I felt some concern, but nothing was oozing out and it appeared to be okay. Besides, her platelets were down to around 96k, which could have contributed to more bleeding at the site. Still want the NP to check out when we go back on Thursday.
Her lips are looking a bit more pale, but she still seems to have energy. Her hemoglobin was down to 8.9 and we are getting closer to the 8 which is where the docs recommend a transfusion. The nurse practitioner ordered packed red blood cells (packed RBC) and platelets for her. If she needs those then we will add an extra 4 to 5 hours to our day. Next week will likely be a long one.
- weights and measures
- port accession
- blood drawn and to lab
- preliminary counts come back
- then blood typing sent to lab if needed
- then blood comes back and we start transfusion if needed.
So items 1-6 are pretty normal, which takes about 2-3 hours then add the 3-4 for blood transfusion. The time adds up quickly.
Yesterday, G. got a port. Not a real port, but we used some of the home kit extras to allow her to have one for a while. It was sort of weird, because she seemed to like it. At times she found it uncomfortable, but oddly, she was glad to have it.