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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:
Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:
It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.
But you know that part on the graph: “Well, survival is a relative term,” where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.
Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.
We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.
Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.
She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.
But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.
And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.
And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . . Still.
And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.
But you know what? Fuck cancer. And all of its shadows.
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.
At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
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.
I’m not going to keep harping on the start of the school year (I’ll have other things to harp about soon, I promise!), but here is the link to an article posted on the St. Baldrick’s site last week. Which contains, as Mark pointed out, the best single line description of Austin’s personality to date. Enjoy….
Well, I changed my mind because I know a lot of you don’t ever click on links (I can see these things; the WordPress blogger is all-knowing), so here it is (no copyright laws are violated because I wrote the darn thing):
Starting Kindergarten After Battling Childhood Cancer
August 30, 2012
It’s that time of year again . . . the smell of freshly sharpened pencils in the air, the sound of school buses rolling down the street and the stack of paperwork for parents to fill out each evening. As I sit at my kitchen table completing the blue Who’s Eligible To Pick My Child Up From School form and the goldenrod Emergency Contact form and salmon Photo Release form, I am stopped in my tracks by the green Medical History form.
It’s nothing surprising, just your usual list of vaccinations and set of Yes/No questions: Has your child ever had heart problems? Seizures? Allergies? Surgeries? Kidney problems? Other? And then there’s my favorite: “If yes, please describe,” followed by one-and-a-half single-spaced lines. They actually want me to explain my child’s dramatic and life-threatening three-year illness in less than seven inches of space?
I don’t think so.
So, instead, I neatly write “Please see attached” and proceed to type up a 370-word addendum that describes in dry, emotionless language Austin’s diagnosis with bilateral Wilms tumor at the age of ten months, his four initial abdominal surgeries, his eight months of chemotherapy. Next paragraph includes his relapse, additional surgeries, twelve rounds of radiation, six more months of chemo. Last paragraph details his daily blood pressure medications and the restricted diet he follows due to the fact that he’s lost his entire right kidney and half of his left.
There. Done. Ready to repack his folder and send him off to kindergarten, a milestone we were never sure we’d reach. But nowhere in those myriad school forms did I truly capture my child. Any teacher who sits down to read those sheets would fail miserably to picture Austin in their mind. I can almost guarantee that they would imagine a sad, sickly boy, struggling to keep up with his classmates and opting out of gym class. Scarred and scared, feeble and hesitant.
There is no way they could conjure up the real Austin, the last kid you would ever describe as feeble, cartwheeling across the lawn, executing perfect front flips on the trampoline (or bed or couch), racing around the block on a two-wheel bike. No way would they picture this boy, spunky and clever, both brave and shy, extraordinary in so many ways, and yet so very very ordinary.
But I will let him go, with a heart both heavy and thankful, into the world of big kid school, where he can define himself. And I will know that those completed forms stuck in his backpack are only one tiny part of this truly remarkable boy.
Here’s a little more “feel-good magic” for you, this time closer to home.
Austin had an appointment with his nephrologist last week and that little kidney is holding steady. His creatinine was .75, one of his lowest measures yet. Well, not “yet” like forever, but at least since the kidney failure scare of March and April 2010. All other numbers have held steady, which means that, while still officially in Stage 3 renal failure, this child’s half-kidney is still kickin’.
Which effectively removes one of our life’s greatest fears: years of kidney dialysis, being hooked to a machine every other day for four hour stretches, all in a windowless room. Nope, that’s not likely to ever ever happen — ever — because my child’s two-year scans are scheduled for May 3.
That’s right. Two weeks from now, Austin will have an abdominal ultrasound and a chest CT that could and should mark him two-years cancer-free. Two years cancer-free. TWO YEARS CANCER-FREE. Something we’ve been waiting for for nearly five years.
I, more than anyone, should know not to count my chickens before the hatch, but really, . . . we have no reason not to expect that these scans will be as clear as the others have been for the past twenty-three months.
And, of course, I’m also well aware that clear scans that day guarantee nothing. They certainly don’t mean that new cancer couldn’t start growing the next day. Or that old cancer couldn’t return the day after that.
But — and it’s a big ol’ but — the odds are enormously in our favor once we make it past the two-year mark. Enormously. The chances of his Wilms tumor ever returning will be very very slim once we’ve hit that milestone. And, as important in our minds right now, if his kidney should fail he’d finally be eligible for transplant.
Seventeen days. And we’ll finally get to pop open that fancy bottle of champagne my dad’s been saving for us for years. Seventeen days.
I know I promised links to the media coverage of our event but they are impossible to find! Strange, because I was under the impression the internet was just one big archive of everything that’s ever happened to anyone, anywhere, especially video news coverage from just a few days ago. But I’ve sent messages to Fox 8 and 19 Action News, which both covered the event on their 10pm news Sunday and again Monday morning. In fact, when I went through the line at the grocery store Monday, the cashier took one look at Austin’s bald head and said, “So that was you on the news this morning!” I have both shows DVRed on my TV but can’t for the life of me locate a link online.
But here are a few other options: Cleveland Heights Patch did a great video, found here, that makes me cry every single time I watch it. It’s a follow-up to the article about Austin featured on the site last week, which those of you on Facebook have already seen.
Bob Rosenbaum, whose son shaved on Sunday, wrote a post for the Heights Observer that can be found here. He’s right: the threads that connect us are many and they are strong.
I also promised that I’d upload all of Dallas’ photos to a public site, but I just haven’t managed to do it yet. Among the regular busi-ness of everyday life, Austin had his upper GI exam this morning. Remember this little bump in the road? It actually turned out to be nothing — all the potential problems were ruled out and his stomach seems perfectly fine. Which is pretty lucky, because had there indeed been adhesions or an intestinal blockage caused by an old surgery, he might have required a new surgery. Of course, I’ve learned to take all the “maybes” and “mights” with a grain of salt and worry only about what is really and truly happening.
The test itself (a series of x-rays and images taken over several hours, after drinking a Barium “milkshake”) was also no big deal, although he sure didn’t like not being allowed to eat this morning (even though most mornings he refuses breakfast!). Just another few hours wasted wandering the basement hallways, killing twenty minutes here and twenty minutes there between procedures. Austin was a trooper as always, finding fun in the oddest places. But there’s something about being in that building — it just sucks the life out of you. I always come away feeling completely exhausted, even when we didn’t actually do anything.
But we were home in time to enjoy most of this summer-like day outdoors, riding bikes and getting muddy. Like any regular five-year-old should.