Sunday, March 3, 2013

Gaining context....

Brain cancer is not good.  I think we can all agree to that.

But ya know what?  There's always something worse.

I was talking to my Assistant Principal the other day and he quoted "The Phantom Menace", Star Wars Episode I.  In general, I hate Episode I, but that's for a different blog (NERD BIAS!).

Anyway, his comment was that "There's always a bigger fish", and it totally made me connect back to so many comments we get from all over.

(I swear to you, if I offend anyone, I really, really don't mean to with any of this)

Amelie has almost no hair right now, and her cranial scars are really, REALLY apparent.  People look at her and wince sometimes.  But then she charms the living hell out of them.  I can't tell you how much she charms them....the nurses line up to be Amie's caregivers.

We know inside of the pool of the damned that we are living in at the moment, that we are at the top of the heap.    She is learning so much so fast, when others have these cognitive delays. She's totally in control of her emotions, when other kids are having really big problems controlling themselves.  We know she's doing badly, compared to all the kids out there...but compared to the kids at Mott, she's doing stellar.  It's this weird juxtaposition.

I could go on and on with my strange mindset that I've found myself in tonight, but I think I'll abscond and just fill y'all in.

Things were doing great as of yesterday, but the inevitable slide has occurred.

Amie went from a white blood cell count of 14, which actually scared them a bit, to below .01 at the moment.  Yep.  that's not much.

She's needed platelets each morning thus far, and red blood once.

They also warned us that this chemo regimen would cause EXPLOSIVE diarrhea, has.  Due to the poops, they have to rule out this massively awful bacterial infection called C. Diff.  To do this, they need to culture the poops, and hold her in seclusion until the culture comes back.  They did that today.

So that means that Amie is locked up again, and Shelley is with her as I move towards school tomorrow morning.

That means that we're once again swearing off visitors (due to the seclusion and the white blood cell counts) for the time being.  Such is life, right?

So we are in the midst of things, and have 9 days down from our projected 28 day stay at Mott for this round.  We'll know more as we go, but things seem to be on the positive side of things, if utterly exhausting.

Hope all is well, and that when we come out the other end of all this, we have some serious Spring weather happening.  :)