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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.
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.
That’s what it was. Not actually “nothing.” To be exact, “Apparent hypoechoic area described on previous ultrasonography study is likely due to echo spin shadowing from surgical clip along the left psoas muscle.” Or, in our own language, that thing we saw in the ultrasound was caused by ultrasound waves bouncing off the titanium clip that was placed in his kidney as a marker and forming a shadow. It wasn’t a mistake. There really was a shadow on the May 7 ultrasound, some new spot that measured 1.4 centimeters and that warranted further study. That was it.
The same paragraph of the official report says, “No evidence of new left renal mass lesion.” And that says it all: No new left renal mass lesion. There is nothing new in his left kidney that could possible be a tumor.
This is the report that was handed to me in person when our oncologist pulled into our driveway yesterday evening around 6:30. (The same report Austin later spilled champagne on.) I lost it. Absolutely and completely lost it (not over the spilled champagne). I don’t think I could have possibly cried harder or louder if we’d been told he had three weeks to live. I have never felt that degree of relief over any piece of news we’ve received in the past five years. Never. Except that poor Mark was upstairs while the boys were showering and heard the doorbell ring and then heard me crying and assumed the worst. As he whisked the boys into their jammies, he was able to discern laughter in our tears and bravely ventured down to hear the news.
Then it was celebration and laughter and more tears, champagne and sprinklers and more tears. And some wonderful spontaneous visits from random people who couldn’t resist giving a hug.
And I’ll say one thing for that Dom Perignon:
it doesn’t taste all that different but you sure don’t wake up with a headache!
So I don’t know how to account for all this craziness. Was it just me overreacting? Was it the power of positive energy, good wishes, prayer? Was it the healing oil a colleague of Mark’s dropped off, which we rubbed on Austin’s belly Wednesday night? The double rainbows, the wishing stars, an act of God? Good luck … a miracle? Or just plain echo spin shadowing? Call it what you will, my child is two years cancer-free, a fact made extra clear by the extra clear images of the MRI. This milestone, which we’ve been so eagerly awaiting for the past five years, means several things: The chances of Wilms tumor coming back after two years are extremely extremely slim. And if, at any point in the future, his kidney should start to fail, we can set the wheels in motion for transplantation while hopefully avoiding dialysis altogether.
In non-medical terms it means this: We made it. Austin made it. We have done what we hope is our life’s hardest thing. We have done our life’s hardest thing.
Why, what on Earth makes you think I’ve had too much sugar?
I’m a cocky mother fucker. With my champagne chilled and ready to uncork. With my celebratory blogpost, not typed yet, but certainly drafted in my head. With every second of my month tied up with things completely unrelated to cancer.
A cocky mother fucker.
Let me start by saying that ultrasound imaging sucks. It’s simply no good. Blurry and blotchy and confusing to read. Yet that’s what we’ve been relying on for the past two years because it has no risks associated with it: no radiation exposure, no further damage to the already damaged kidney. So, today, on the ultrasound, it appears that something’s there. Something that wasn’t there before.
We’re not sure — of course. We’ll need to schedule additional testing. First a GFR, to see where his kidney function is so we can determine which test to do next. Assuming his GFR is above 30 (and his nephrologist estimates it’s at least 60), then he’s “well” enough to be able to have an MRI or CT with contrast (oh, the irony). Either of those ought to let us know if this thing is nothing or if it’s something.
But let’s be real here. It’s always something. Every fucking time this happens, we invent a thousand scenarios to explain why it might be nothing. We imagine every possible rare or random “nothing” it might be. But it’s never nothing. Every fucking time, it’s always something and the something it turns out to be every fucking time is CANCER.
It’s always something.
Sometimes it’s hard to get back into that old mindset . . . that old cancer mindset. I had two other, completely disease-free topics I was going to write about today, and then I doubled checked my calendar and was reminded that Austin has his 20-month scans tomorrow.
Twenty months . . . now that’s a significant chunk of time in the life of this small boy, who has battled cancer two and a half times in the past four-plus years. Twenty really really good months, of health and happiness and growth and energy and normalcy. But tomorrow we’ll go back to the hospital, after Austin makes a brief appearance for his first day back at school (which should give me just enough time to run and shower). He’ll have his regular bloodwork to check his kidney function, followed by a chest CT to look for possible metastasis to the lungs and then an abdominal ultrasound to look at the kidney, pelvis and liver (another favorite site for Wilms tumors when they decide to move around and, of course, the current home of that mostly unidentified “fatty tissue” we’ve been watching for the past year). Then a follow-up with his oncologist to go over the results.
The whole thing should last about four hours, with a break for picnic lunch thrown in and quite a bit of exercise moving from the sixth floor of the cancer clinic to the basement of another building and back again. If all goes well — which we certainly expect (not that our expectations mean anything in this game) — he’ll be free again until the end of April, when we have his eagerly awaited two-year scans. Those are the gold standard, although we are well aware that they will give no guarantee that his cancer will never return. Nothing will give that guarantee. But they will mean that he has reached a critical milestone and that the chances of his Wilms tumor recurring are extremely small. The two-year mark will also mean that, should his kidney fail, he can then be eligible for transplant without dialysis (or without too much dialysis; sometimes the time between failure and actual transplant can take some months due to many many factors, not the least of which is identifying the actual kidney that will go into his body). But those are discussions for another time.
For now we have this to buoy us onward: A neighbor of my mother’s attended an event at the hospital recently in which the Chief of Pediatric Oncology was talking about the importance of research and how it directly impacts patient outcomes. He presented three case studies as evidence, one of them about a boy named Austin with bilateral Wilms tumor (say, that reminds me. . . ) who he described as “cured.” I asked my mother several times if she was sure that was the exact word that was used and she was very very sure. “He said ‘cured,’ Krissy. That’s the whole reason Ann stopped to tell me about it.”
Cured. Well, that’s not a word we allow ourselves to use too often. Never, in fact, have I referred to Austin as “cured.” But after tomorrow, and after April, maybe we’ll just have to change our vocabulary. And our mindset.
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
Tomorrow are Austin’s one-year scans. He’ll have his usual procedures: labs drawn, followed by an abdominal ultrasound to look at the liver and kidney, followed by a chest CT, followed by a visit with his oncology team. And we’ll follow our regular schedule: a normal morning at school, then lunch at the fountain outside the hospital, then many hours of roaming back and forth through the underground maze from one appointment to another.
The radiologist usually gives me a basic rundown on his findings during the ultrasound, so that information I’ll have before we even walk out the door. The CT scan takes longer to read (or longer to be read, is more like it), so we might not have official results from that until Friday. Some of the labs are quick and we’ll have those back by the time we return to the cancer center after scans, but the kidney numbers — which we await with bated breath — won’t come until after we’ve gone home.
Of course, we hope for no changes to his liver, kidney or lungs and either an improvement or maintenance in terms of kidney function. We feel good, hopeful, optimistic, but we’ve always felt that way, even when we were way off base. He seems so normal and vibrant — but he’s always seemed that way, on the outside at least, even when things were going horribly wrong on the inside.
So, we take this one step at a time. And potentially, hopefully, as tomorrow comes to a close, we will find ourselves one step closer to an end. Not the end, because that will never come. But an end. Which would be good enough.
May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!
Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin. We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.
So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!
That kidney is indeed recovering.
Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?
Springtime would be nice!
Well, it’s been two months since Austin’s had labwork and nearly three since he’s had an ultrasound or CT scan, and that’s about as long a break as we can hope to get around here.
We are due at the hospital tomorrow, following Austin’s morning at school (assuming he has a morning at school — today was another wasted snow day, in my opinion, because I went out and ran five miles and it wasn’t bad at all). He’ll have bloodwork done to check his kidney function and his hemoglobin (among other things, but those are the numbers I pay attention to). Then an abdominal ultrasound to look at both the kidney and the liver, followed by a chest CT and then a follow-up visit with his oncologist.
As much as we have enjoyed this long break from all things medical, it does raise the stakes. The longer we go, the more nerve wracking the tests become. Three months is an awful long time to turn our heads and look the other way. Who knows what those sneaky little cancer cells could have done in three months’ time?
But he certainly doesn’t seem like a boy who has a single thing wrong with him. He’s happy and active and, at this moment, busy building an obstacle course for his Batman motorcycles to race through.
Should be fine.