Over the many months of Hope’s treatment, while googling this side effect or that neurotic fear, I have stumbled across the
stories of other kids and families dealing with leukemia. I occasionally
find a blog and obsessively read post after post looking for glimmers of hope,
signs of peril, symptoms and reactions and patterns that match Hope’s
experiences.
One thing that has stuck out to me is the number of kids who
face setbacks or complications in the waning months and weeks of treatment. In
fact, I can think of a couple of kids who spent the very last days of
their protocols hospitalized for one reason or another.
It makes perfect sense. Their little bodies are exhausted
from the years of punishing chemotherapy that has again and again pummeled
their bone marrow and then let up just enough to push that marrow into service
to replenish their bodies’ blood cells yet again. Toward the end of treatment,
the marrow is tired, and fighting infections is harder. For many kids,
especially those with Down syndrome, it can take years for their immune systems
to fully recover once off treatment.
Having read so many of these stories of late-in-the-game
hospitalizations, the recent pause in our regularly scheduled program shouldn’t
have come as a surprise. For much of the fall, Hope’s ANC (the count of her
neutrophils – or infection-fighting white blood cells) has been a little high.
Her oral chemo meds are supposed to keep it in the 500-1500 range, below a
normal person’s 1500-8500 range. Her numbers had been floating around
2000-3000, so in mid-December, her chemo was
raised to 125% dosage.
On December 30 we went in for day 1 of maintenance cycle 6:
a lumbar puncture, vincristine infusion, and the start of a 5-day course of prednisone.
Her ANC was finally back in range: 890. At the time, I did have a moment of
worry that it might not hold steady but our NP said we didn’t need to return to
clinic for a month. No arguments here.
A few days later we get a call saying that Hope needed to
come back to clinic for IVIG, an immune-boosting infusion – basically a
collection of antibodies in plasma. So after spending two fun-filled days in
preschool, we returned to clinic only to discover that Hope was extremely
neutropenic – with an ANC of 120. And, not surprisingly, Friday afternoon she
had a low-grade temperature above the threshold for an ER visit. With an ANC of just 20, she was admitted.
It had been 17 months since her last inpatient stay. So long
that she probably didn't remember ever having slept in the hospital. For those of us who do remember (all too well), this return to the scene of the horror was a unexpected reminder of those days gone by – days we would all
like to forget when she was so sick, skinny, in pain, so fragile – but still Hope.
The first day or two were particularly rough for the big kids, I think, but as the days
stretched on, we could all see that this time around was different.
She tested positive for rhinovirus – the common cold – so
she was stuck in her room, but she clearly felt great. The only real struggle was
keeping ourselves busy while waiting for her ANC to rise to 200. Bowling and
parachute, UNO, board games, playdough, drawing and cutting and gluing,
Magna-tiles, and more Barney and Gilmore Girls than are really reasonable. Six
days until we were close enough to the target ANC for discharge.
House arrest continued at home. A week later her counts had
risen, but not high enough to resume chemo.
Week three of her chemo hold was dominated by the BLIZZARD
OF 2016. And that’s when things started to get interesting… Over the past few days we have had the
sense that we are getting a tantalizing peek behind the curtain at what our
off-treatment world might look like.
One night at dinner she ate a cooked carrot. (It might not
sound like a big deal to you, but believe me, it’s HUGE.)
She has been spending more time playing than watching the
iPad.
Her speech seems to grow deeper and broader each day – including
the existential question of the week: “Daddy, I have a question. Why is you?”
She is beginning to build her comedy routine. There’s one
terrible knock-knock joke, and a couple other jokes that share the same
punchline (“brown nose you!”).
She just obviously feels better. She doesn’t complain that
her stomach hurts, or need a salty snack to nibble on at all times.
_____________
Today we returned to clinic and found that her counts have
recovered and chemo restarts tonight. And so the curtain floats shut. Back to our regularly scheduled leukemia treatment.
We have four months and one week left. Maintenance, with its
potential for ups and downs, fevers and crashing counts, hospitalizations and
escalating chemo dosages, continues. And it won’t be over until it’s over.
But one day, June 4th to be precise, this phase will
be over. And then something new will begin.
