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Togetherness! - aka Life in One Room
Hi everyone,
Here I sit, laptop on lap, writing from our BEDroom (almost all bed,
with 2 twins pushed together and cots on either side) at the Ronald McDonald
House with all four of us in here (I'll hook up online later from the conference
room). Actually the beds aren't so bad - it's trying to find room for our
clothes (2 seasons) and toys and meds that presents the challenge. We're
managing pretty well, though I must have hit my patience quota this week.
I had a few pretty ugly days feeling like the walls were closing in. Today
was much better. Anyway, as a colleague reminded me, better to have four
squished in a room, than just three. And how.
Travis was discharged from the hospital (originally) on October 13, and
was in 2 times after that. Once for 5 days for high blood pressure, which
is now under control after carefully balancing doses of steroids and hypertension
medicines. The other inpatient was last Tuesday night, after Travis had
a Bone Marrow Aspiration (taking marrow out of his hipbone to check for
any leukemic cells and how many cells are donor versus host - they want
all donor). The preliminary results appeared good - cells looked normal.
We will know the detailed lab results this week. We feel good, though there
is much to be looked at more closely by the techies. We are hopeful and
optimistic. Travis will have this test again at 100 days post transplant
and on a regular basis after that. Anyway, after the test, Travis complained
of trouble breathing, though the doctors never did find anything wrong,
but they kept Travis overnight just for observation. We laughingly agree
that "out of the hospital" means "not sleeping in the hospital"
since we're there most of the day for clinic anyway!
Two days ago, Travis entered the phase of the "radiation blahs",
which they told us to expect around 6 weeks post transplant. Right on time
- Travis is pretty wiped out during the day, sleeping 3-4 hours at a stretch.
This could last, we're told, a few days to over a month. Other than that,
some headaches and belly aches, but the main challenge these days is keeping
Travis' spirits up. We are constantly monitoring everything he does, and
herding him back to the room if other people come around him. It's kind
of like freedom with a million limitations. But he has befriended another
"bmt kid" and they understand each other's situation with quiet
acceptance, so that helps. They don't feel so completely alone in this.
We'll know more after Travis' appointment tomorrow (counts, etc.). In
the meantime, we did get out to enjoy the explosion of color on the trees.
The fresh air did us all a world of good. That's the update a bit boring
(GOOD!).
Love,
Melanie, Joe, Travis and Spencer
P.S. Here's an ironic one - just now, instead of borrowing sugar from
our neighbors, we needed to borrow a syringe (yes, unopened -- for flushing
Travis' central line). And believe it or not, they had one! Our life is
SO different now |