(Note: If you’ve come here looking for my usual reflection on
running, you need not read past the end of the next two sentences. So long as
running brings you joy, I urge you to keep at it. Life being precious and
short, if running is a chore or little more than a way to measure yourself
against others, I plead with you to seek out new avenues for spending the days
you’re given.)
----------
Eight years ago, my firstborn daughter, Lily, slipped from my
grasp and fell flat on her back in the grass at my feet. Instinct kicked in the
moment she hit the ground and I swooped her up, rushed her inside, and then shuttled
her off to the hospital before whatever emotions I might have felt had time to
record as memory.
I cannot recall now how I felt then though the memories of
the fear and trepidation of the hours and days that followed are vivid.
I cannot recall now how I felt then, but I will never forget
how I felt last evening, eight years after, when Lily, having listened to a
retelling of that story at her bedtime, assured me that I hadn’t dropped
her, but had “saved her life.”
----------
Preliminary results of a CT Scan at the time of Lil’s fall
suggested a brain bleed, but careful scrutiny in the days immediately after and
follow-up testing weeks later confirmed that the smudge in the films wasn’t
bruising, but my initial relief at not being to blame quickly gave way to the
understanding that the abnormality was far more disconcerting than a temporary
wound.
That abnormality, situated in Lil’s left temporal lobe, an
area of the brain employed in the comprehension of language and vision, has been
the subject of monitoring ever since.
That abnormality has never stopped being disconcerting.
Mostly, though, it just was. It didn’t grow. It didn’t
diminish. It didn’t cause any ill effects. It just was and its menace consisted
solely of being there.
In time, twice annual scans were relaxed to annual scans and, as the
results of those sessions remained consistently unchanged, time between scans was
eventually stretched to two years. And,
with assurance from the surgeons that more time could pass between scans, that
abnormality quietly, almost imperceptibly relinquished its menace. We never
fully forgot it was there, but it ceased to be the sole cloud carrying
potential for rain in an otherwise blue sky.
Those sunny skies encouraged us to close our eyes and bask
in the warmth and we did, but when we opened our eyes the forecast had changed.
This past winter, in the midst of her 3rd grade school year, Lily
began to complain about her eyesight and, just like that, we had a symptom for
which we’d been cautioned to remain vigilant. Lindsay and I immediately
realized that another two years had passed and Lil was again due for an MRI.
Lily had been seen at Johns Hopkins since she was two, but
circumstance merited a move to Children’s Hospital of Philadelphia (CHOP) and
she immediately felt more comfortable in this youth-centric facility.
By the
time we visited for Lil’s initial MRI, she had already seen an optometrist and
had been prescribed corrective lenses.
Her need for glasses wasn’t proof alone that there was great
reason for concern, but we looked forward to verification that the old familiar
abnormality still simply was.
It wasn’t.
There were signs indicating both structural changes and
growth. A visit with an ophthalmologist corroborated the likelihood that the tumor was cause of the rapid deterioration of Lil's vision. Allowing for the fact that orientation from machine to machine can
differ and it had been some time since the last scan, a follow-up MRI was
slated for 30 days later. If it showed additional growth, we would need to
consider what immediate action could and should be taken.
If it showed additional growth.
It didn’t.
We returned to watch-and-wait mode, heartened for the
moment, but the wake-up call of that first sign of growth coupled with
additional input from Lily suggesting that she was also having some cognitive
issues, failing from time to time to be able to formulate the words that she
had at the ready in her mind, kept us on edge. She told us she knew that it was
growing, knew that something needed to be done. She asked, earnestly, if she
would die. As parents, we’d been asked that question before and it’s a painful
question to answer even when it’s brought on by the death of a pet, the passing
of an elderly relative, or simply the developing youthful mind. It’s
exponentially more difficult a question to answer when it stems from your child
facing that very real possibility.
Lindsay and I were forced to discuss surgery and its
implications, something we really hadn’t had to do since the first discovery of
the tumor all those years prior.
This time there was a third voice in that
discussion and, as it belonged to the person carrying the reason for the
conversation, the voice was the most important of the three. Lily didn’t want
to wait, she wanted to take action. She wanted to take IT out. She desperately wanted
the surgery and didn’t understand why we didn’t just do it.
The surgeon we had first seen all the way back in 2008
recommended at that time that we move forward with surgery, remove as much of
the tumor as possible, and biopsy it. Second and third opinions advised caution
and ultimately convinced us to wait, primarily because of a lack of symptoms on
Lily’s part and the imminent threat, based on the location and structure
of the tumor, that healthy brain tissue could be compromised and survival was not
guaranteed.
That threat remained imminent and was the very reason why we
didn’t just schedule surgery.
September arrived and with it yet another appointment with
CHOP’s Radiology department.
This time the results were unambiguous, the need
to take action inarguable, and, in a cruel twist, at least for her parents,
Lily would have her wish.
----------
Our oncologist and surgeon have made it clear that while we
should take steps to address the situation with surgery, the immediate risk is
not so great that we can’t schedule the procedure at a time over the next 6-9
months that would be least disruptive for Lily and for our family, including her doting, adoring little sister, Piper Bea.
My daughter loves to dance. She loves to swim. Both of these
activities are her most direct connection to life as it is and how she wants it
to continue to be. She does not want
this…this thing in her body or its ominous shadow hanging over her any longer
than it must. She wants it out and the sooner the better. The sooner it is out,
the sooner she can dance, the sooner she can swim.
Yes, there are risks and,
yes, there is potential that the procedure will not be effective, will not
fully alleviate the issue, or could even cause other issues. There is that potential. That potential is not nearly so great as the
absolute guarantee that doing nothing will ensure issues that neither Lily or
her parents care to sit idly by and watch manifest.
Better to think of dancing, to dream of swimming. Best to
dance and swim now, in the meantime, and as soon as possible after.
Endless have been the conversations that Lindsay and I have
had over the years about that foreign castaway inside of our daughter. We’ve
cursed its constant, silent presence and the way in which it so often made us
second guess every odd gesture or peculiar mannerism that Lily had at any given moment, little happenings that other parents would have paid little mind,
likely no mind whatsoever. Knowing that it was there was a strange chronic
punishment but for what we weren’t sure.
It was a constant guilt I was resigned
to shouldering for the remainder of my lifetime.
A nine year old knew better.
Without knowledge of its being
there, that foreign body would have grown unwatched and by the time it made its
presence fully known, we would likely be looking not at a tricky surgical
procedure but faced with an inoperable tumor with a grip on Lily’s central
nervous system that could not be loosened, a grip that would have put her very
existence in jeopardy.
Eight years ago, I dropped my daughter and couldn’t possibly
have imagined that, in doing so, I might have saved her life.
Please, please let it be true.
----------
If everything falls into place, Lily will undergo laser interstitial thermal therapy in mid-to-late November. This neurosurgical technique will create a dime-sized hole in the top of her skull and allow a laser probe, steered by real-time computer guidance and informed by MRI-monitoring, to reach the tumor and then destroy the foreign cells by super-heating them. By employing this technique, we hope to minimize the damage to healthy tissue and lessen the potential for infection that comes with a traditional and more invasive craniotomy. It will not immediately remove the tumor or what portions of it would have been possible to cut away without too great a risk to healthy portions of the brain, but it is expected that the destroyed tissue will diminish with time and perhaps be eliminated entirely, something that subsequent MRI scans will need to confirm.
The greatest risks are the likelihood of visual deficits (think blindspots, not blindness) and potential for language deficits. The fact that the tumor is surrounded by healthy tissue and in relatively close proximity to the brain stem brings graver concerns, but we have every confidence in CHOP and the precision of our surgical team.
----------
We know our friends and family will have numerous questions
and, as much as we’d love to answer all of them, Lindsay and I ask for your
patience and understanding as we need to focus our energies on supporting Lily,
reassuring Piper, leaning on each other, and attending to all of the
logistics necessary to balance life alongside the preparations ahead of surgery
and whatever our situation proves to be afterwards.
You can help us best by simply loving Lily as we know many of you do and
sending her positivity by whatever means you believe most effective. The means
of transmission isn’t important. She’s a sensitive child, always has been, and
she’ll feel it, I can assure you.
If you feel compelled to pass word directly to Lily or should happen to run into her in the days ahead, all I ask is that you respect the gravity of
what she’s facing and the immensity of processing that at any age much less at
nine. She has been privy to every conversation with the oncologist and the
surgeon and has been given the opportunity to raise concerns directly. No punches have been pulled by anyone in speaking to those concerns. Tears and
heartfelt apologies, genuine as they surely would be, are not helpful and Lily
will not respond well to them.
Trust me.
My daughter does not aspire to be
extraordinary, even if her mother and father already believe her to be. Lily loves being "just a regular kid" and cherishes the moments that make her feel like she is just that. In that, she mirrors her father. She is
sufficiently frightened about what lies ahead, healthily so, and doesn’t need the well-wishing but too-evident worries of others to make her that much more scared. She remains just a kid and
when this is in the rearview, she still will be. Treat her that way and I
promise that you’ll have helped. Remember that our Piper Bea could use a little love and attention too and I promise that you'll have helped.
Thanks, in advance, to all of you from all of us. Thank you for caring
about us and for sending us positive energy.
It means much to us, as do all of
you.
