just getting lots of rest
AnonymousNovember 1, 2009 at 7:34 pm
Alice has been “neutropenic” for a few days now, which basically means she has no immune system – as we wait for the new system to build up. Every day we get a report of her blood cell counts, and we expect her new immune system to start building up in 3 to 5 days.
They say as soon as the blood counts start going up, even slightly, it feels like life coming back into you.
Until then Alice rests as much as possible, knowing that it’s just a question of getting past these days.
She has had some fever, but the doctor said this is absolutely normal and she hasn’t had as much as expected. This morning she had muscle aches (flu-like pains), but the meds took care of that. So basically these days are all about resting, and managing any pain or fever.
She had a hard morning the day after stem cell reinfusion, because of the preservative used with the stem cells – but got through that under the attentive care of (great) nurses.. They have a pill for everything now, and their approach is there’s no reason to be in pain or nauseous – that she’s in a safe environment here so that even if she needs a strong medication to get past something, that she can have it, under nurse supervision. They have at least 4 medications against nausea and vomiting – so that if one doesn’t work they can try another. But basically whatever the pain may be, they have a medication for it. The nurse even offered Alice a pill against her hiccuping the other day !
It felt like it took about 24 hours to get that stem cell preservative out of her body (she felt it was just coming out of her pores), but once past she felt like that was the hardest hurdle.
Tomorrow (day +5) she will start neupogen shots again, to encourage stem cell grafting and rebuilding of her immune system.
She just woke up and said “i can’t believe how much i’m sleeping” (and is falling back asleep now..) 🙂 i’m just glad she’s getting all this rest
The doctors say that she is really doing very well and shouldn’t worry about these aches and fevers… that she should just listen to her body, and get lots of rest.
and in a few days, those numbers will start coming up again..
AnonymousNovember 1, 2009 at 8:13 pm
in all likelihood? A BLESSING!!! I think of sleeping as ‘healing time’. Often needed, more often tho, than I’d like. Nor, I bet you. I now call them ‘Power naps!’ And, if you dream during these naps? ALL the BETTER!
I would liken it to having a body seeking the perfect RESET button?
And yes! Docs ‘say’ don’t worry, but? DUH? It does sound tho that they are doing more than everything to be sure Alice is as comfy as possible given the cirumstances. Actually they sound pretty super sensitive to such issues as she’s experiencing. That gets gold stars in my estimation, for sure.
Got my fingers, legs and eyes [occasionally] crossed – can’t do toes? And sending you BOTH over the ‘ether’ lots of extra warm fuzzies [I prefer red for such occasions?] and BIG hugs!
Remember you both are at the forefront of RESEARCH! I have faith that Alice can and WILL succeed because she’s got WILL to do so! That makes such a difference, and at times it’ll seem too slow? Give it all the time it needs to work!
GUMPTION is the only good word I have that can describe what’s needed to get thru this all. And, I sense that you, Sophie and Alice have lots! with some to spare!
AnonymousNovember 1, 2009 at 8:50 pm
I’m curious about what happens next. I mean, after her immune system rebuilds. Is there any medication she needs to be on? Does she get released & is allowed to go back home? What kind of monitoring will be done?
I’m glad to hear she’s holding up reasonably well. I’m sure her body is going through some crazy things right now & really needs the rest.
November 1, 2009 at 9:30 pm
I am ecstatic to hear the doctors excellent reports and that Alice is bearing with the bumps and hurdles. It seems like the days ahead will be smoother.
You can count on me all the good souls in the universe for positive energy galore to be sent your way.
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