Sunday, February 15, 2009

Day +25: Ugh.

I wish I knew how to start this post; I sit here and stare at the screen and will myself to type.

The doctor expressed concern this morning at the trend she's seeing in Zoe's lab reports. Her neutrophil count has been trending downward for several days. Each day it was lower the message was always, "Don't worry, this is part of what happens." But, when today's count logged 150, down from what had been 473 last week, and her WBC's were still staying below 1.0 at today's count of .8, the doc said they needed to look at what was going on.

It's taken several sessions of asking questions today to get this basic outline of what's possibly at issue, so here's the best I can do at outlining the salient points we heard today:

  • Osteopetrotic babies, due to the reduced bone marrow space, take longer to engraft, so it's still possible that what we are seeing in the numbers fluxuation is just an engraftment that's taking its own sweet time.
  • Zoe is on two medications, acyclovir--an antiviral-- and meropenem--a broad antibiotic, that in a very small percentage of patients (we're talking <.1%) have a side effect of neutropenia, that is, the reduction or stunting of neutrophil production. They will take her off of acyclovir for a week and switch her from meropenem to another antibiotic to see if her neutrophil count climbs back up.
  • The doctor will also be putting Zoe on a growth factor drug that stimulates the production of neutrophils. They had held off on this approach prior to now as one of the side effects of the growth factor drug is its role in delaying the production of platelets even further. As the numbers had been going in Zoe's favor, they hadn't seen the growth factor as necessary. Now that her numbers are apparently trending downward, the benefits outweigh the risks.
  • Osteopetrotic babies undergoing transplant have an elevated rate of graft rejection. That is the specter I have been wrestling with all day since word of her lab numbers came through this morning. If her body is rejecting the graft, there is really nothing to be done about it. If that is what is happening, the only course of action is to start the process all over again. The idea of it just floors me. But, the doctor tells me not to go there yet. (Can't help it when I'm this tired and scared.)
  • There are hopeful signs which point to the donor cells taking hold: the fact that her body keeps chewing up the platelets (the donor cells are doing this) and the stabilization of her calcium levels (a possible sign that the needed osteoclasts are present). Also, the fact that her weight has jumped up a couple pounds in just the last week and a half could possibly have caused a dilution of her numbers in relation to the overall fluid volume she's carrying.

Really though, no one knows. We won't know for possibly up to two weeks whether she's rejecting her graft, and the prospect of that just makes me want to collapse into a heap. I thought I was doing a good job of holding it together--and, I will do a good job of that again-- but this is frankly kicking me in the ass right now.

Jeff called me about thirty minutes ago with the "good news" that the latest batch of matched donor platelets kicked her up to 60. I was pleased, until I wrote that damned paragraph outlining hopeful signs that included her body not getting boosts from the platelets. So, I'm sitting here at home at 10pm without a doctor to ask whether this miraculous bump is actually a bad sign that her donor cells are petering out.

See how my mind goes? Somebody just shoot me.

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