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It all started on a swelteringly hot Monday in July. Almost eight years ago. Our boys were 3 1/2 and ten months old. We lived in a different house. We were different people.
Because it changed everything.
In ways large and small, obvious and subtle, it shifted and molded each of the four of us into the people we are today. We will never ever know what our lives might have been, who our boys may have become, what paths we would have pursued had we not been sidetracked by childhood cancer. Sidetracked…? No, that doesn’t come close to describing what it did to our lives. Waylaid. Ambushed. Flipped over, thrown around, and knocked senseless.
Here’s the tally of physical scars: Thirteen visible on his body, some small, some medium, one enormous. One and a half kidneys gone. Twelve rounds of radiation. Fourteen months of chemo. Countless blood and platelet transfusions. One Broviac line, one PICC line, one Mediport. Temporary dialysis. More medications than I can name, some oral, some intravenous, some subcutaneous. An ileus…or two. MRSA and C-diff, at the same time. If much of this sounds foreign to you, consider yourself lucky.
Actually, I consider myself lucky. In every way that we were outrageously unlucky, we were equally, unexpectedly, miraculously lucky.
And today, he had his five-year scans. To check out his kidney, liver, lungs and heart. And everything is normal, unchanged, unremarkable. As we sat in the office with his (new) oncologist at the end of our day, she ran through the list of things to worry about moving forward (who doesn’t need a list like that?): Infertility, heart problems, kidney problems, secondary cancers, cognitive issues, hearing loss, and scoliosis. We went through each, one by one, comparing them to the cumulative doses of his six chemo drugs.
And he should be okay.
The cognitive issues and hearing loss would have already occurred, she expects him to remain fertile, his heart is being monitored already. Secondary cancers would reveal themselves through his regular lab work, but he is well below the level of chemo considered dangerous in that regard. There are no guarantees — and some items on that list (ahem, kidney problems) are not potential late effects of cancer treatment that we worry about, because they are instead obvious and definite parts of his everyday life that we worry about. He still has stage three renal failure. He will still most likely need a transplant.
But what he does not need, ever again, is to be scanned for Wilms tumor. He does not need annual or even biennial checks of his liver or lungs or kidney. Whatever comes his way — and stuff will come — it won’t be kidney cancer. That dragon has been slayed.
By this guy:
Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.
This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many many explanations needed. Because nothing in the cancer world is ever that cut and dry.
First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny and common hole in the wall of one of the chambers of the heart) still exists but poses no threat or consequence to his health at all. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.
The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth. She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed. So, off to genetics we’ll go, in the next month or two.
The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?
So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.
Like Austin himself, who finds joy in the most unlikely places, we take what we can get.
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.
We are at that time of year, as we are so often are, that is filled with milestones and anniversaries. Some of them are good, some bad, all tinged with reminders both subtle and glaring of where we’ve been and where we might someday end up. Last Wednesday was Austin’s kindergarten musical performance, not an obvious cancer milestone in anyone’s life, but filled with significance nonetheless. It should go without saying that there is just something about watching five and six-year-olds go through a song and dance routine, all waving their arms slightly off rhythm, scrunching up their faces and waving to their parents one minute, the perfect image of mature composure the next. All coupled with their eager filing from risers to stage to recite their carefully rehearsed but poorly enunciated lines, and the whole thing is just adorable to the point of tears.
But for us, it also stood in stark contrast to Braedan’s kindergarten musical three short — and very very long — years ago. That day, way more dramatic than this, is described here. And let me tell you, it was not as easy as I made it sound in that rather upbeat review. It was instead filled with a lot of anxious clock-watching, as I wondered if I would yet again break the heart of my elder child in my desperate attempt to keep my younger child alive. So it was with enormous relief that we watched Austin sing his songs and wave his hands and recite his line (inappropriate though it was for a child who can’t pronounce his Rs): “And you would be right, with most of those terms . . . You see, ladies and gentlemen, we are the worms!” with no pending hospital visits, no Sophie’s Choice decision looming in our near future, no fear of what the next day, week, month might hold. Instead, it was all sweetness and pride, worms and snakes, and even Braedan and two other older siblings were invited to provide comic relief in the form of cheesy bat jokes.
Austin on my lap three years ago
Austin last week, ready to perform
Austin on stage, reciting his line
Braedan on stage (far right), reciting his line
And if anyone is really paying attention, you’ll notice that Austin was wearing the same shirt last week that Braedan wore to his kindergarten show. We, of course, went to the Colony for dinner that night but I have no pictures of grilled cheese-induced ecstasy.
But, if you want a real milestone, a truly significant, did-it-again milestone, here it is, hidden in the midst of this post about a school concert . . . Austin had an abdominal ultrasound today. We opted to do it back at Rainbow, even though his new oncologist is at the Clinic, because only this particular radiologist knows what to expect from his crazy misshapen kidney. So we’ll have an additional appointment in a few weeks, with a chest x-ray and labs and a physical, but for now, from today’s scan which looks at his kidney and liver and is the thing that really matters most to us, Austin is three years cancer-free. Yes, that’s right. That’s what I snuck in here at the end of this silly little post. AUSTIN IS THREE YEARS CANCER-FREE. Ka-pow.
Whatever you celebrate, wherever you are . . . be a light in the darkness.
From a recent post I wrote for St. Baldrick’s:
Lighting the Darkness
By Krissy Dietrich Gallagher, mother to Austin, 2012 Ambassador Kid
My grandfather died on December 21, 1982. The shortest – and darkest — day of the year. Cancer, of course. My brothers and I drove with our dad from Cleveland to Massachusetts for the funeral, where my mom had been for the previous week. It was the first time we’d ever not spent Christmas tin our own home, where my grandparents usually came to stay with us. After the funeral service on Christmas Eve, my grandmother went to lie down and my brothers and I ended up in her basement, one of our favorite places in her house (we’d spent many vacations roller skating around and around on that smooth concrete floor). But this time we searched through her neatly stacked boxes until we found some labeled “Christmas.” We quietly lugged everything upstairs and by the time my grandmother awoke from her nap, we had decorated a small fake tree in the living room and hung stockings over the fireplace. Just because our Grampy was gone didn’t mean we had to give up Christmas.
She talked about that day until she died, a physically broken but emotionally whole old lady, more than twenty years later.
To me, the holidays are about finding the light in the darkness. Placing candles in the window to light the way for those outside on these short winter days. Bringing the evergreen tree inside when all else is bare, to remind ourselves that life is still out there, that spring will eventually come.
When your child has cancer, the light and the dark, the circle and the cycle of life, feel ever more important. Everything is suddenly meaningful; little things like eating dinner as a family and big things like spending Christmas at home. When my Austin relapsed at age 3 in December 2009, the dark days were upon us in more ways than one.
Relapse is scary. Scarier than the first time, for us, at least. It means that that whole army you employed, the full-on assault you launched on your child’s small body, simply wasn’t enough. It means that cancer was stronger than the strongest medicines. And that is terrifying.
But you do it again. You load a fake Christmas tree into the car and you decorate every inch of that hospital room with anything sparkly and shiny you can find. You light the darkness because there is simply no other way. You hold on to hope and you force yourself to remember that spring will come.
Even on the darkest days.
We actually went home that year, a few days before Christmas, and returned to the hospital for chemo and radiation shortly after. But we spent Christmas Eve surrounded by family and friends and we celebrated all that we had, with full hearts. We awoke in our own home, a family of four, to open presents in front of the fireplace, to snuggle and laugh and take lots and lots of pictures. Never far from our minds was the thought, that fear that is impossible for the parents of the sick to shake, that this might be the last Christmas we would spend together.
And now, here we are, three years later, a family of four, alive, intact, together. Two little boys quickly morphing into big boys. Healthy and happy and pretty darn close to normal. Lighting the darkness is their own special ways each and every day.
It never ceases to amaze me how quickly we can revert back to our old roles. Our seamlessly we become who we once were: the patient and the advocate, the comforter and the distractor. It’s as if we never left that old hospital world; it all feels so familiar, so deep in our bones, even in a brand new space.
We awoke super early Friday morning, if you can call 3:45 “morning.” Driving down the driveway at 4:30am to arrive in pre-op by 5:30 made me ever thankful that we lived so close to our hospital for all those years. (We ended up at Akron solely for insurance reasons — which will change in the new year — and, aside from follow-ups won’t be driving back there again.)
By 7:30, Austin was walking down the hallway hand-in-hand with an operating room nurse, with just one backward glance, but no tears, as he marched off to surgery. A quick hour-and-a-half later, he came to in the post-op room and we were by his side, offering popsicles and comfort. The ENT said his tonsils were enormous, but came out with no problems. And the hand surgeon was very pleased with how his finger repair went, no nerve damage despite many layers of scar tissue. He has a heavy red cast up to his elbow, only there to keep him from using his hand. The doctor wasn’t even sure he was going to give him a cast until he asked me how active Austin is. Once the words “gymnastics” and “cartwheels” passed through my lips, he knew just what to do. (And I’ve seen Austin do three cartwheels already, using the cast as a study foundation.)
We spent the afternoon mindlessly rotating between the floor playroom and his bed, trying to make the minutes pass by a little more quickly. A couple of books, wandering aimlessly through the halls, cajoling with sherbert and applesauce. Three good hours followed by the miserable half-hour leading up to the next dose of painkillers, followed by the miserable half-hour it takes to kick in. Hospitals are just plain boring, there’s no way around that. Akron was a lovely place; we went downstairs for a dramatic reading of How The Grinch Stole Christmas, and met Ronald McDonald on one of our walks. That evening as we sat on the bed eating dinner, a troupe of carolers in Renaissance costumes came singing down the halls. And a volunteer knocked on the door to read Austin a bedtime story.
So, it was fine, but still, it’s a hospital and I can’t help but feel trapped when I’m there. And they’re all amazingly the same, the colors of the cupboards to store your clothes and the placement of the buttons on the walls, the smell of the rubber couch I slept on and the feel of the sheets that have been washed ten thousand times. Austin did okay throughout the night, well, as expected, I guess. He was up at midnight and 4am needing medicine. But he ate surprisingly well Friday evening, chowing down an enormous l tray of soft foods for dinner. We were released by 10am on Saturday and safe at home an hour later.
He played hard and happily that day and I thought I’d for sure send him to school Tuesday, if not Monday. But yesterday was worse and today he took a three-hour nap in the morning, so we’re laying low. His hand is fine and he’s driven to be independent, managing to snap his jeans and write his name with both his left hand and his casted one. But his throat is very painful and he’s struggling to eat anything at all. Even popsicles hurt going down.
But we truly believe this could be our last overnight in the hospital for many, many years. We called it an Austin tune-up, just getting everything into tip-top shape for years and years ahead of normal, regular childhood. I imagine that the next time he sleeps in a hospital bed, he won’t scoot over halfway through the night and beg for me to slip in beside him. It’s sort of bittersweet, that thought, but as hard as watching my baby grow up may be, I will always take it over the alternative. Always.
Austin is having surgery this Friday at Akron Children’s. Surgeries, actually, two procedures rolled into one. They’re minor and non-cancer related. Just a long overdue tonsillectomy and finger repair. You may remember that his swollen tonsils (besides keeping us all up at night) prevented him from being sedated for his May MRI, requiring us to go through the surgical department for full-blown anesthesia. While we hope he’ll have no future reasons to be sedated, we also realize that’s pretty unlikely given his history (and his future). And the poor finger . . . well, that thing’s been bothering him for more than a year as it’s now clawed and unable to fully straighten. The lovely surgeons at Akron have coordinated their schedules so he only has to have one surgery, which I think (I lose track of these things) brings him up to eleven.
The interesting thing about this time is how nervous Austin is. He’s been so young every time in the past that all these crazy things happened to him without his full (or at times, even partial) understanding. This time, he is well aware and asking many many questions: “What day are we going again? Is tomorrow when we leave at 6 in the morning? How long will I have a cast on my hand?” I don’t think he’ll have a cast on his hand at all, more like a bandage, but he’s definitely concerned about not being able to write at school. His teacher has assured me this won’t be an issue (he is in kindergarten, after all), but Austin is a participator — he joins in to any and every activity possible with his full self, so standing on the sidelines will be tough. Especially when it comes to missing his regular Wednesday and Saturday tumbling classes. I already have to set silly rules to contain the near constant acrobatics, like no cartwheeling while crossing the street and no flips after 8pm. Of course, I think it’ll probably be his tonsils that cause the most pain, but that seems a bit too abstract for him to worry about. And I don’t exactly want to encourage him to fear something else!
Sp we go in early Friday morning and will stay over that night. Of course these are both typically out-patient procedures but since Austin is in no way typical, they want to observe his blood pressure and hydration. This will be our first overnight in the hospital in a record-breaking two-and-a-half years, since an unexpected fever in August of 2010. I just reread that old post, “Interruption,” not quite remembering the circumstances of that particular stay. Its closing lines were right on. It finally seems that, despite swollen tonsils or Franken-fingers, we have indeed made it safely to that wide-open future I could only hope for back then. We are living it.
Yesterday was our last day as patients at Rainbow. No, we haven’t magically moved to some elusive category of you’re-so-healthy-you-need-no-more-follow-up-care (but if such a category exists, I’d sure like to be placed in it someday). No, no, instead, we are switching hospitals.
I know, that one came as a shock, right? We love Rainbow, that much should be obvious. We have been thrilled with the care we’ve received there over these five long years and I can honestly say that I feel at home whenever I walk through those revolving doors. So this change is not exactly our choice, but it’s necessary nonetheless. We’ve been chasing health insurance for a while now, constantly switching carriers in order to stay at UH, with ever-dwindling options. Our most recent best option shouldn’t ever have the word “best” attached to it as we’ve been paying 80% of our care at Rainbow out-of-pocket since January. With a kid like Austin, let me just say that that ain’t cheap.
But we’ve been unwilling to leave Dr. Auletta until we felt confident that Austin was well, and reluctant to leave him even then. And now, alas, he’s leaving us. It is for the best, for him professionally and certainly for his family. And we support him in this move entirely, knowing that he can achieve greatness in a position created especially for him and his expertise at Nationwide Children’s in Columbus. Yesterday was his last day at Rainbow, hence the uncharacteristic “clinic of miracle.” There’s a reason those patients were his; he made those miracles happen. He absolutely put his heart and his mind and his energy into caring for his patients every single day, going above and beyond for all of them. For all of us.
So yesterday, we said goodbye to Dr Jeff. And with his departure and Austin’s good health and our ever-changing health coverage, we said goodbye to everyone else too. To the nurses and receptionists, to the ultrasound technicians and coffee baristas. Most of the goodbyes were silent, in my head only, as it would have been too hard to verbalize all that I felt. There were a lot of “It’s not goodbye, we’ll come back to visit.” And we will.
As we meandered the hallways moving from one department to another, I was keenly aware of the days and weeks and months and years we spent inside that hospital. Over many seasons, from one hot humid summer through several seemingly endless winters. A couple of springs and even more falls. For holidays and birthdays, Austin morphing from a nursing babe-in-arms to a toddler in a stroller to my current tumbling schoolboy cartwheeling down the hallways (yes, he did that). He entered that hospital not yet knowing how to walk and he leaves it having just learned how to read.
He grew up in that building. We all did.
And when we walk into the Cleveland Clinic next year, there will be no familiar faces, no exclamations of “Look at him! Is that really our little Austin?” No friendly waves as we pass by no-longer-needed departments, no hugs as we step onto the elevator to find a friend, no chance for Austin to say, “Hey I remember that fountain. I love it there!” I’m sure the Clinic will be fine. I’m certain we’ll receive good care there.
But there’s only one Rainbow.
Austin had his two-and-a-half year scans today.
He went briefly to school to partake in the Grands Day celebrations, but I picked him up at 10:30 and we headed down to Rainbow for a long day of procedures. First an EKG and ECHO, because he needs clearance from cardiology before his December 7th surgeries (tonsillectomy and finger repair — more on those next week). Results from both were fine: The VSD that marked our first step towards diagnosis more than five years ago still exists but is so tiny that it poses no threat at all. The enlargement that caused concern during his second round of treatment is less pronounced, probably because his blood pressure is as normal as it’s ever been. His heart is functioning fine and, while we need to continue monitoring it well into the future, there is no current worry or need for action or cause for concern.
Then it was time for abdominal ultrasound, always the most significant test of the day. But that too was normal, no changes from last time, the ol’ inappropriately labeled “unremarkable” exam. Then a chest x-ray, which I haven’t actually seen results for but we’ve never had any real reason to worry about cancer metastasizing to his lungs.
And then it was off to see Dr. Auletta in the out-patient clinic. After labs and a quick physical exam, he sat talking with us and reflecting on the day he’d had so far (more on that tomorrow). Ever conscious of respecting patient privacy, he nonetheless commented that today he’d seen the “clinic of miracles.” The kids and their parents who happened to walk through the doors today were the remarkable one, the lucky ones, whose stories could have ended quite another way.
You know, a lot of children diagnosed with cancer in the twenty-first century have excellent prognoses right from the very beginning. Of course, it’s still a big deal and still terrifying for their families (all you hear on Day One is “Your child has cancer” and nothing else quite makes it through). But the doctors who see those kids on their very first days know, that as long as nothing goes horribly wrong, as long as science works as it’s supposed to, they’ll be alright. (Austin was actually in that category for about one day.) And then there are others who the doctors know, despite all they may hope and despite how hard they end up trying, that they won’t be alright. And then there are the kids in the middle, whose cases are tricky, whose cancers are unpredictable, but who still present with a shred of hope. They need a hell of a lot of work, they need vicious medicines and endless care and a ferocious internal fight. But those are the kids who can become miracles. And Dr. Auletta saw them today.
Austin among them.
. . . another hospital. A new hospital this time, too.
Don’t worry — nothing bad happened. I just finally got around to making appointments for the non-essential, non-emergency, non-cancer-related issues that have been bothering Austin for the past six months. First, those pesky tonsils. Which don’t actually bother Austin at all. I mean, he snores, loudly, but that doesn’t bother him. But we simply have to make sure he’s able to be safely sedated for any future procedures so today we visited an ear, nose and throat specialist at Akron Children’s (long story there, related to annoying health insurance issues, but I must say that even with an hour drive, Akron Children’s was very pleasant to deal with).
Then it was off down the hall to see the “plastics” guy. No, Austin’s not getting a new nose (his current one will have to do). Remember the dreaded finger injury? (God, how could we forget the dreaded finger?) It’s turned into quite a claw lately, which we’ve labeled the Franken-finger, and which causes him a lot of pain and discomfort. It’s always the little things . . .
Both doctors agreed that “quick” surgeries are in the books. Luckily, they will coordinate their schedules so we can wrap both procedures up into one surgery, likely over winter vacation (since, you know, kindergarten is the new first grade and the kid’s gotta be able to hold a pencil!).
It was relatively easy, but there’s something about hospital days that exhausts me. I think I’ve finally accepted that it’s not the actual day or anything in it that’s tiring (I mean, today was mostly spent on the freeway) but something much more psychological for me. Maybe it’s the reliving I’m forced through (multiple times) as I recount the date of each and every surgery and list the names of all the current and past medications and check the damn Yes box next to so many of the “Has your child ever….” questions, complete with the wide-eyed amazement of the nurse who unsuspectingly asked our medical history. I inevitably come home and feel completely wiped, like I’ve done something so stressful, and then have to, ugh, make dinner and, ugh, oversee homework. It’s a bit silly, I guess, but also completely logical. Ah, it’s always the little things. . .
But tomorrow really IS another day . . .