Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the month “June, 2012”

Day 28/Day 67

Today, Sarah’s temperature stayed normal all day, and I was stoked, figuring we would get to go home, maybe even as early as this afternoon.

Then the oncologist dropped the bombshell. 

“we’d really rather keep her until her next round of chemotherapy is done” 

Oh, would you. Cause I’d rather not.

I know that logistically it makes the most sense, but it kind of tortures me (and Dec…Dec is still around, and I know that this blog has been very me-centric lately because I’ve been a very me-and-Sarah centric person lately…i’ve been trying to change that, but it’s hard…i guess i should save my relationship issues for another post, but let’s just say i can understand why people end up divorcing when their children are very sick. i don’t think we’re headed that way at all, but it’s so easy to become absorbed with one issue and forget about everything else. we’re trying very hard.) to think that i can’t bring her home where she’s most comfortable and happy. 

Speaking of comfortable and happy…it’s sort of scary to me, how somewhere between the first round and this last round, Sarah has suddenly started to LOOK SICK and ACT SICK. She’s lost her hair and her pudge, there are dark circles under her eyes, and most of the time she rejects food. she’s listless most of the time, if she’s awake at all. It’s depressing, to put it mildly. It’s depressing and I want it to be over.



well, we’re on day 22 here in ye olde children’s hospital. we were supposed to go last week, but even before we were discharged sarah spiked a fever that wouldn’t go down…this seems to be her MO, and her “team” is trying to figure out if there’s some way to prevent it or if it’s just a thing that’s going to happen.

This is our longest hospital stay so far. She’s spent 61 of the 70 days since her diagnosis in the hospital…an eternity, it feels like.

My sister–who I will, someday, I hope, write a post about (right now, four and a half months after her death, i still find it hard to say her name, let alone write anything about her)–spent a lot of her life in the hospital. Probably more time in the hospital than out of it, and there was always this kind of strange feeling that I could perceive after she came home from the hospital, even as a kid. It was like she wasn’t exactly a member of our family, like she was a stranger who didn’t belong in the house with us, like we should bring her back to the hospital because at any moment they were going to come snatch her away.

And that’s how it feels right now, with Sarah…it’s almost a relief to be here in the hospital still because I know that once we bring her home, we’re going to have to bring her back here again, and then again, and again. And even after this part–the chemo part–is finally over, for six years we’ll be a slave to it, for six years we’ll be slave to blood tests and counts and an oncologist who tells us whether or not we’re going to have to sign her back over to the hospital…and then after those six years, even when she’s considered “cancer free” it could still come back at any time, still creep back into our lives at any time.

maybe that’s not the way i’m supposed to be thinking, maybe i’m supposed to be all upbeat and positive; all sunshine and rainbows, but in the eternity of day 22, of day 61, it’s pretty fucking hard not to feel like, at least this way, the cancer beast has won.

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