Elephants and Tea - March 2023 - 40

New Perspective FINDING THE GOOD
Facing the Unseen Challenges of
Survivorship with Positivity
BY LAURA DEKRAKER LANG-REE
My daughter, Cecilia, was diagnosed with acute lymphocytic leukemia (ALL) at the tender
age of three, and just like that, my world (and hers) was turned upside down. In an instant, I
became not only her attentive Mama but a ferocious Caregiver-two very different jobs.
At the time of diagnosis, I remember feeling overwhelmed as we faced
down three years of treatment with an unknown outcome. All I wanted
was for my baby to survive. It's all you can think about when your kid is
diagnosed with cancer. I think my specific fantasy was that we would
finish treatment, walk away, heal, and never think about
cancer again. I would say that turned out to be about
85 percent true, and the most important thing did
happen-she kicked cancer's butt.
But the other 15 percent was and still is
tough-the unseen, unknown challenges
of survivorship in the cancer world.
Because cancer isn't fair, and nobody
tells you that at the outset. At the outset,
it's all about achieving remission,
not living and thriving as a survivor.
Dreams about survivorship begin
for some of us when we hit the remission
mark. I naively thought that once
Cecilia's cancer was in remission, I would
be filled with relief, gratitude, and joy.
Certainly, when she was nearing the end of
her two and a half years of treatment, I would
be cartwheeling and walking on air! Right? She was
about to become a SURVIVOR!
All I felt was fear. Pesky, sometimes debilitating, looking-overyour-shoulder
fear.
Because, not everybody makes it, even after achieving remission . . .
Because cancer isn't fair.
During treatment, my husband and I bonded with six families.
We played together, we shared hospital rooms, and we laughed and
cried. They were our precious circle of trust and hope.
And in our precious circle, three children died.
Luke, Rebecca, and Michelle didn't make it.
Kaleigh and Lauren relapsed, repeated treatment, relapsed again,
and ended up with successful bone marrow transplants, and a lifetime
worth of long-term side effects that plague them to this day.
One in six children with childhood leukemia die-it's quite literally
a roll of the dice. In our tight circle of friends, I bore witness to
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MARCH 2023
that cold fact when I sat by their children's bedsides during relapse,
or worse, went to their funerals.
At one point as we approached the end of treatment, the fear
was a clingy, heavy weight. Arne and I decided to meet with our
pastor. She listened to our guilt and worry about Cecilia
with grace and patience.
Then she said, " Have you ever considered that
she's the hope? "
Whoa, mind blown. Maybe . . . she's
the hope.
That concept had never crossed my
mind, that we could be the lucky ones.
Because cancer isn't fair.
My Pastor's nudge to seeing the
positive became a cornerstone for
managing my mind going forward
into my child's survivorship years, and
for being grateful for what was going on
right now. She was OK. More than OK. I
had everything to feel positive about and
what my Pastor was gently telling me was
I should consider changing my narrative and
seeing that positive.
And that is the biggest unseen challenge of survivorship-choosing
to stay positive.
Because cancer isn't fair.
When you decide to shift your attention from the me-and-my-oldsad
story toward a positive future, life moves forward in a lighter,
or at least constructive, way. Frankly, it's never too soon to start
that mental shift if you or your loved one is doing well (it's harder
when they are not).
The conversation with our Pastor made me realize that I got lost
in the dark side of our cancer journey (she might die), instead of
seeing how good it was at this moment (she just finished treatment
and rocked!). My self-absorption took hold, giving me no space or
time to give a shit about anything or anybody else. My problems
loomed particularly large because I was not managing my mind-I
let it run wild.

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Elephants and Tea - March 2023

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