October
ended with news that St. Louis Children’s Hospital (SLCH) was no longer
comfortable performing Annaka’s liver transplant. This meant a transfer to a
larger, more experienced hospital, and thus we were being sent to
Pittsburgh.
Using a metaphor that many of you will quickly
understand, St. Louis is kind of like the Horace Grant to (CHP) Children’s
Hospital of Pittsburg’s Michael Jordan. SLCH
is very good, but just as a basketball player might pass instead of taking a
shot they aren’t sure they’ll make, Pittsburgh, with a half-century of
experience, is one of the crunch-time players in the world of pediatric liver
treatment.
Our
first priority was to get Annaka listed at Pittsburgh, but to do that she had
to be reevaluated by those doctors. Thus, after about a week of trying to schedule
the evaluation, on November 14th JaLana and her mom headed East with
the very patient patient in tow.
JaLana and her mother stayed at a next-door Ronald
McDonald House in the evening and went through one meeting after another during
the day. For three days they met doctors
and other specialists; for three days Annaka was analyzed and studied. They returned to Effingham with the
understanding that, although it would take a while to get everything in place, she
would indeed be listed for a liver transplant at Pittsburgh in the near future.
What this meant, though, was that Annaka now existed
in this liver-status limbo. St. Louis
would still care for her up to the transplant and continue to offer her weekly
albumin and lasik infusions to minimize the swelling in her belly. It was also understood that about
twelve-months post-transplant, once Pittsburgh believed she was well-enough and
on the mend, Annaka’s care could be transferred back to St. Louis. For much of November, however, she wasn’t
listed anywhere, moving from one day to the next without a safety net. For the first time in months, it didn’t
matter how many organs became available; it didn’t matter whether we had our
bags packed or not.
This was unnerving.
To broaden Annaka’s chances, JaLana and her mother went back on the road
the next week, this time to Cincinnati Children’s Hospital—which functions as
the Scottie Pippen in this rather silly analogy—to go through the evaluation
process there, too. Annaka again met her potential surgeons, but fortunately
this time, because the Pittsburgh data was so fresh, most of the testing could
be skipped.
The logic behind being listed at two different
places was that these centers draw organs from different geographic
regions. Like fishermen with our nets
slung off two sides of the boat, we wanted to give Annaka the best shot she had
at getting the organ that would save her life.
The headache, though, behind being listed at two different regions is
that every annoying thing about dealing with hospitals and insurance and scheduling
was amplified.
For example, although our insurance had already
approved her for transplant in St. Louis, they had to re-approve her in
Pittsburgh and Cincinnati, too. Medical
flights also had to be prearranged; housing needed located. One crucial task after another needed planned,
and each task came with multiple human components, some of them warm and
competent, some of them not as much.
Regardless, we were reminded once again of the
aching whimsy of “free will.” We did
everything right, or, more accurately, JaLana did everything right while I did
what I could to pick up the slack and stay out of her way. From the hours of research to the hours of
telephone calls, the hours spent not sleeping so Annaka could have the best
nutrition possible, she made no misstep.
She knew what questions to ask and often knew the answer before the response.
Regardless, off to Pittsburgh they went. Off to Cincinnati. As November ended, we returned to St. Louis
for an E.R. visit because Annaka had a cold and was having trouble
breathing. That was on a Monday. We came home on a Friday. Twelve hours later,
Annaka was back in the E.R., this time in Effingham because she was spitting up
blood. Back to St. Louis, this time in
an ambulance. Any last remnant of the
fiction we once imagined, the fiction that says, “You are the author of your
own life story,” fell out the window somewhere on I-70.
One thing that made me pause each time we returned,
though, was the bright red, giant Christmas ornaments.
St. Louis Children’s Hospital, despite the pain
often going on inside, is actually a reasonably cheerful place. They decorate up for Christmas pretty good,
with plenty of lights. Outside on the
small lawn in front of the building sit a collection of huge Christmas tree ornaments,
as if they’d been dropped from the pocket of a holiday giant.
I remembered watching maintenance set them up last
year—in the cold, the wind blowing—during our sonogram visits, back when we
thought Annaka’s main problem would be the relatively minor omphalocele
defect that could be patched up pretty quick.
I remember thinking, “This Christmas will be tough, but next Christmas
will be better. Next year we’ll be
home.”
Annaka’s still quite sick, though, in a way we did
not imagine. A full year has passed, and
still we ask these questions:
“How much control do you have over your life,
really, when you’re not healthy? How
much can you influence your own life while taking care of someone whose liver barely
works?”
Reflecting on those giant Christmas ornaments,
though, it strikes me, finally, that these are the wrong questions to ask in
the first place. We can’t “control” our
lives any more than we can control the weather.
Sometimes life is hard. It’s
cold. The wind rattles us in directions
we couldn’t imagine.
At the end of the day, we cannot control the weather.
Fortunately, we can still decorate for Christmas. We can do what we can to color our lives
vibrant, and, more importantly, to help color the lives of those around us.
This idea brings us, then, finally, to Nancy Ervin.
As most of you know, our dear friend Nancy has
volunteered to donate a portion of her liver to our daughter. She and Annaka share the same blood type, so Nancy
also went through a battery of tests in Pittsburgh to confirm that they are
indeed a match. Thus, on January 3rd,
barring any unforeseen circumstances, Annaka’s failed organ will be removed and
in its place will go a fraction of Nancy’s liver. Over time, God willing, they will both heal.
This will be a fairly lengthy surgery with a potentially
lengthy recovery time. Despite the cold
of this reality, however, Nancy is choosing to decorate
the same way she has been doing for the last twelve months. She and a host of other have taken it upon themselves to help decorate
our lives with a generosity of time, resources, and spirit.
Surrounded by such
people, Annaka's second Christmas, along with each one afterwards, will
undoubtedly be full of color.
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