You are currently browsing the tag archive for the ‘survivor’ tag.
This kid we can call a survivor. A four-year survivor.
Today’s scans, which included blood work, a chest x-ray, EKG, ECHO, and abdominal ultrasound, all came back clear. Unchanged, no evidence of disease, and (my fave) unremarkable. Which always strikes me as ever so remarkable.
As we walked out of the Clinic hand in hand after five hours of appointments, he swung my arm and casually said, “That was fun.” And he meant it. Which also strikes me as ever so remarkable.
And most remarkable of all is that in 365 days, two measly scans away, we’ll be able to use a whole different C word in reference to Austin:
We may never get to use the word “survivor” to describe Becca Meyer. But let me tell you, that girl is surviving.
Yesterday, today, and, we certainly hope, tomorrow, she is living a life so filled with love and laughter and friendship and family that some may be rightfully envious of her. She is alive and she is thriving — running, jumping, playing and doing it all with a full-sized dose of spice and sass.
Take today, for instance. Today was Purple for Becca Meyer Day at Fairfax School. The Student Council created a long list of Spirit Days for the month of May and Braedan’s suggestion was this one. It was carefully planned for a Thursday because Becca’s at a hospital in Pittsburgh every Monday, Wednesday and Friday morning. I knew that Braedan was nervous that people might not participate, or that it would only be the girls in purple, or that (worst fate of all) Becca wouldn’t notice. He wrote his own message to read over the PA system on Wednesday afternoon reminding people of the day and why it was important, closing with, “It doesn’t matter how you look because you’ll be doing something good for someone else.”
We found purple t-shirts in the bottom of my kids’ drawers and were all ready. And then Becca threw up yesterday. On her car ride back from Pittsburgh. Which could be a sign that the time had come, that the end was about to begin. As I put the kids to bed last night, I debated whether I should tell Braedan that tidbit of truth to prepare him for the possibility that she might not be at school on her very own day. But he was riding high after a super successful trumpet quartet with three of his best friends, and I was holding tight to the hope that Becca’s was just a passing sickness, some normal explanation for normal vomit with a normal outcome.
Well, she was at school today, in head to toe purple, as were many of her schoolmates. I was most impressed with the number of kids, boys and girls alike, from kindergarten through fifth grade donning that royal color. And Braedan was most pleased. And — all that really matters — Becca was most pleased. And full of spice and sass.
At dismissal time, she marched out the door arm in arm with her best friend since birth, both purpled to the hilt. They encountered a beloved teacher in our building, who had sprayed her hair purple for the day, and she pointed it out to Becca, who promptly stuck her hands on her hips and said, with a personality bigger than her poofy princess dress, “No. You. Didn’t. That’s PINK!”
Today, she is surviving.
Because the tagline of my blog does not read, “Krissy Dietrich Gallagher’s blog about life, luck, love, parenting, writing, and, of course, school funding,” life does indeed go on outside of local election cycles. Austin had an abdominal ultrasound at Rainbow yesterday, part of our we’ll-pay-anything-to-have-him-scanned-by-the-one-doctor-who-knows-what-his-crazy-kidney-looks-like and his first of five tests in the coming week. Next Friday, he’ll go to the Clinic for an ECHO, EKG, chest CT and labwork plus a physical with his new oncologist. Unfortunately, I scheduled those appointments long before I knew the boys had that day off school, earning me serious Bad Mommy points. A trip to SkyZone immediately following should keep me in good standing though.
Yesterday’s results came back clear, unchanged since last May, the first hurdle cleared on our path to the title of 3 1/2 years cancer-free. Our radiologist did recommend planning another MRI at some point, but he said there’s no rush and it could be done at the 5-year mark. It’s been a while since we had the absolute certainty of such high quality imaging, back with that unforgettable scan in May 2012. Ultrasound imaging is acceptable but nowhere near as precise as MRI, so we’ll discuss that with our doc next week.
I snapped this picture of Austin yesterday in the waiting room, as I marveled at how much he’s grown since we first carried him into that space in an infant car seat.
This was the first time he could read the Scrabble tiles outside the waiting room doors, connecting words like head, neck, legs, and toe to Pediatric Radiology (what, no kidney?). And there he sat, reading a book all by himself. His feet still don’t touch the floor, so that may be the next milestone he hits in that all-too-familiar space. And someday, he’ll drive himself down to the hospital and maneuver into a parking spot as a tall, strapping teenager. I’ll accompany him, probably against his will, and he’ll no longer climb into my lap in between procedures, but will be much more concerned with where to access the hospital wi-fi.
And while all of that makes me feel sad, his growing up sure beats any alternative.
This child’s road to kindergarten has been littered with eight-hour surgeries and the side effects of chemotherapy. More CT scans in two years than the recommended allowance for an entire childhood. Central lines and blood pressure medications fit for a retiree.
But despite the bumps in the road, the twists and turns and inevitable hills, the outrageous and unexpected detours, this child has reached his destination. The child has, against all odds, started kindergarten:
And it was surprisingly smooth. I’ve gotta admit that for the past few years, this day has loomed large in front of me. If I were a stage actor and needed to make myself cry, all I would have to do is imagine walking out of that building on the first day of school and the tears would start rolling. Honestly, I’ve cried about it many times already as I lie in bed at night just thinking about it. But today was different. We walked, the four of us together, the boys’ backpacks bulging with tissue boxes and Chlorox wipes. Then there was the chaos at school of students and parents trying to find their new teachers before the flag raising. I had one quick moment when a friend asked how I was and I got choked up, before anything significant had even happened. But I hid behind my sunglasses, not wanting to make Austin any more nervous than he was already was.
Into the building we went, down the hallway hand in hand. I left him in his classroom to join the parents for paperwork and Q&A. And that was another moment; I had to go into an empty classroom first and gather myself, right on the verge of a full-blown sob fest. But that too passed, as I was swept up in the mundane tasks of listing emergency contacts and ordering gym shirts. Then another goodbye, this one harder for him than me (but no tears). And that was it. I walked out chatting with parents and friends and headed down the street to my quiet house.
I did it. We did it. He did it. Austin is alive and well, as healthy and normal-looking as any child in that building. He is something we were never sure he’d be: a kindergartener. And next year, he’ll be a first grader. And then second and third. Before I know it, he’ll be a middle schooler. And he’ll graduate from high school and he’ll go on to college.
Because he is alive. And he is well.
He did it.
My dad and I balanced on our skis at the top of a mountain in Colorado and watched. In front of us, a little critter all bundled up in his snowsuit and helmet went whooshing by, in a classic “pizza” snow plow, heading confidently down the blue square. His big brother, taking a break from his newly tackled black diamonds, zoomed in front with near parallel skis.
“Not bad,” my dad said, “for a kid who should be dead.”
Sounds crass, I know, but he’s only putting words to the thought that runs through my mind each and every day. As I watch Austin ride his two-wheel bike all the way to school or execute a perfect front flip on the trampoline or master the Rocky Mountains. “Not bad,” I can’t help but think ….
I prefer the less certain “could be dead” though. Because he should be doing exactly what he’s doing: biking, flipping, laughing, skiing, living.
Today is a day we weren’t sure we’d ever reach: Austin’s 5th birthday.
And yet, here we are.
I was the parent helper this morning for his preschool class, where we celebrated with frosted zucchini muffins (at Austin’s request) to which one child asked in disbelief, “Are there really cucumbers in here?” And moments later, “Can you take the onions out of my cupcake?” (He did end up eating the whole thing.)
Then we spent hours baking cakes for tomorrow’s party. After school, he and Braedan worked happily with his new Lego set, the two of them side-by-side on the living room floor (getting along!). Then it was out to the yard in the rain with Mark and our carpenter (who might as well be part of the family) attaching a rope ladder to the back of the tree house.
Music has been playing on the radio all day, also at Austin’s request, and after listening to the Juno soundtrack, we danced around to his favorite, the Putamayo World Playground CD. He had wandered away by the time the eleventh song came on, a beautiful rendition of You Are My Sunshine. And I couldn’t help but think back to the days (and weeks and months and years) that I held him in my arms in a hospital room, singing quietly into his ear, trying to soothe him after some particularly painful medical procedure. And that song and those words, “Please don’t take my sunshine away,” reached a fevered pitch in my head and my heart, as I so feared that one day I might have only memories of this dear dear boy.
But here we are. And here he is.
Happy Birthday, sweet Austin.
I got a message the other day forwarded from Betsy Kling that included an email she received from a viewer after we were on the news. It was from a woman who had Wilms’ tumor as a baby, diagnosed at 11 months just like Austin, who had just celebrated her 53rd cancer-free year! She was writing to say how her ears had perked up at the mention of Wilms’ tumor and how happy she was to see Austin looking so healthy and fine.
Now this woman had Wilms’ in just one kidney, as is the much more common and easier-to-treat type of this cancer. It is in fact referred to as the “pediatric cancer of choice” because it has such high survival rates (isn’t that just the most awful way to describe it . . . who on earth chooses pediatric cancer??). But Wilms’ tumor treatment has been a huge success for cancer researchers and doctors because treatment has gotten more and more effective. But, god, fifty-three years ago? I don’t imagine it was the cancer of choice fifty-three years ago! Surely they hadn’t yet managed to treat in a way that was either consistently successful or that would prevent the onset of future secondary cancers or diseases. So, really, this woman is a huge success story in and of herself.
And it sure is nice to hear about those who beat the odds. Especially when they’re mentioned in connection to my Austin!
And so, another year goes by.
July 30, 2007 was the day. The Day that everything changed. A day that started out like any other summer Monday. And ended with me and Mark sitting on a couch in a hospital room, holding on to each other for dear life, unable to finish our sentences, barely able to catch our breath. Our baby asleep beside us in a cage-like crib, an endless stream of nurses and doctors walking through our space, horrific and terrifying thoughts swirling through our minds.
The months and years that followed proved many of those horrific and terrifying thoughts true, along with some too horrific or terrifying for us to have even imagined on our very first night as the parents of a child with cancer. The twists and turns were steeper and scarier and more stunning than anyone could have prepared us for. And yet that one, that one thought that is too terrifying and too horrific to put into words, that is the one we have managed to escape.
And so today, tonight, on July 30, 2009, we sat in the backyard eating our grilled dinner, Austin dashing away from the table (and his vegetables) wearing nothing but a t-shirt (typical), his little soccer thighs lifting him high and strong. We toasted each other, “we made it this far,” and leaned back with a satisfied sigh. If only we’d been able to see back then, back when our biggest fears occupied so much space in our minds, if only we’d been able to catch a glimpse of this day. Fast forward two years and see the happy healthy boy running and diving across the grass. We couldn’t see that of course.
And yet, perhaps, we must have seen it. That image of Austin must have been in our heads, or at least our hearts, that day and every single day since. Or we never would have made it.
I am the luckiest.
I have a family who stands beside me, backs me up and cheers me on. I have a rock solid relationship with my rock solid husband Mark. I have friends who encircle and enrich me. I have a strong and healthy and able body, despite having had type 1 diabetes for twenty-three years. I have enough money for everything I need and most of what I want. And I have two little boys, Braedan and Austin, who fill me with delight and wonder every single day.
But Austin is not the luckiest. Diagnosed with bilateral Wilms’ tumor, cancer in both kidneys, in July 2007 when he was just ten months old, Austin has been forced to endure more horrors in his short life than most of us ever will. But he is a survivor. After eight months of treatment, he has been in remission since March 2008.
The months, and now years, following his diagnosis have taught us a lot . . . about fear, hope and strength, about each other, ourselves and our boys, about life, luck and love.
And I’m ready to share.