You are currently browsing the tag archive for the ‘relapse’ tag.

It’s March 20th. The first day of spring. A time that for most of us marks a beginning. A sense of relief (phew, we made it!) and excitement for all that’s to come (it is coming, you know). New growth, lengthening days, all the signs of life returning.

It is not so for the Meyer family. This day, one year ago, marked the beginning of the end. There was new growth alright, but not the kind that anyone wanted. The discovery of a new tumor in Rebecca’s brain and the stark reality — that her parents already knew but had hoped they’d never have to truly experience — that there were no more options. There was nothing to be done.

It wasn’t the end of hope. The family kept fighting, kept searching, kept grasping desperately for any possible way to extend her life. But they knew. One year ago today, on the first day of spring, they knew what was coming. And they knew they couldn’t stop it.

I still have hope. I hope that they Meyers will heal. That each day, they’ll feel a little more joy and a little more peace. That one day, they’ll laugh til tears run down their cheeks and they forget, even if just for a moment, that they’re sad.

And I hope that this is the beginning of the end of childhood cancers that kill. I’m not convinced that we can actually end childhood cancer, though that certainly is the goal. But I do truly believe that we can end childhood cancers that kill. I think with the right combination of funding and technology, brilliant minds and steadfast determination, doctors can achieve that much.

And I also truly believe that we took one step in that direction on Sunday. That the brave acts of the youngest among us will, in a real tangible way, move us closer to that goal.

I’ll repeat some of the things I said on Sunday, variations of which I shared twice, once with the Feldman family in the beginning of the event and again with the Meyer family in the middle.

The children of Fernway School and those of Fairfax School have had to learn some hard lessons in the past week and in the past year. They’ve had to see, up close and personal, how sad and cruel and deeply unfair the world can be. But they’ve also had the opportunity to see how good the world can be. How much kindness and selflessness there is out there. How many people are willing to come to your side in a time of need, to stand by you, hold your hand and bolster you up. How many are willing to do what’s right even when it’s terrifying.

IMG_5401DSC09163 DSC0922911025988_10153674234122067_6482981549895698845_n11001701_10153674238562067_442488604239136139_o

They’ve seen that there is a time for laughter and lightness, a time to honor and celebrate what we’ve lost while still looking forward. They know what it means to sacrifice, to give when you know that you won’t get anything back from it. Every person in that room could have shaved their heads on Sunday and it wouldn’t bring Dan or Rebecca back. But they were still willing to do it. Because they embody hope.

Because they still believe in new beginnings.


Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793. Feeling satisfied and proud, I was eager to share. When I read the news of Rebecca Meyer’s latest MRI.

And it wasn’t good.

And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do?  Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years.  They need it now, they need it tomorrow.

You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.

She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:


And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:

And again, with her bald schoolmates around her (goodness, these Fairfaxians like to stick out their tongues, huh?):

She is alive, goddammit, and she deserves to stay that way.

So, I should probably expand a bit on last week’s ultrasound posting. It is indeed slightly premature for me to declare that Austin is three years cancer-free when we have yet to see his new oncologist (who we met for the first time in February) or to receive an all-clear regarding his lungs.  All of that will happen at the end of next week, when we visit the Clinic for labs and a chest x-ray. But, since his lungs have always been far down on the list of things we worry about and since the abdominal ultrasound is what has revealed anything and everything suspicious or dangerous over the past four years, we nonetheless feel pretty darn good with last week’s news.

It’s funny how this one crept up on us. This three-year mark. So unlike last year’s anniversary, for which there was so much anticipation and excitement, all of it dashed with that horrible May 7 appointment. And then we plunged into that surreal in-between world, filled with only fear and dread but no answers or action. I do much better when there’s action. When I can see the mountain in front of me, even if it’s absurdly steep, I’m able to gear up, draw upon my strength and plan out exactly how I’ll scale it. But when it’s only fog I see, only vague warnings about a pending cliff or a jagged slope with nothing concrete or real, then I’m paralyzed. Last May, I felt paralyzed. Terrified beyond anything in memory (and there’s been much terror to remember). I had no idea what we were facing, couldn’t even begin to plan our attack — but I felt certain something was out there. Something deadly was lurking there in the fog, waiting for us to pass, waiting for him. And I was paralyzed.

Of course, it all passed as nothing. Those sixteen days a mere post-script to our crazy story. And I find myself back again, in the very same place I was when I wrote this on May 6 of last year, the night before his faulty “something” scan.

And I’ll say it again, with a slight edit to the number: Come what may, it’s been a damn good three years.

Nothing earth-shatteringly new, but here’s a link to an article I wrote for St. Baldrick’s on Austin’s recent scare.

I will accept submissions of possible new words for “really, super, extra relieved,” so get your creative caps on, my friends, and let’s hear it.  Merriam-Webster is waiting.

Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.

It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.

We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”

But it actually happened.

There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.

There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?

And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about relieving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.

But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.

I must be the luckiest.

I’ve ended my book three times. The first in March 2008 after Austin’s Broviac line was removed and the first time he was declared “cancer-free.” Then again in April 2009, after what we now call “the almost relapse.” And finally — or what I thought was finally — in August 2010.

I’m going to share them all here … as long as you promise to still buy the book! (I don’t exactly think I’ll be giving anything away.) But they are informative in their way. Ironic, especially the last one, but hopeful.  And hope is what we’ve got right now.

Wednesday, March 19, 2008 1:29 pm

It is not lost on me that tomorrow is the first day of spring. We started this journey in the dog days of summer: a swelteringly humid August in Cleveland. Walking around the air-conditioned hospital in a hoody sweatshirt zipped right up under my neck, hands stuffed into my pockets, not aware of whether it was night or day let alone warm or cool. And then I’d have a chance to walk outside, through that revolving door, into another world complete with its own climate. Lose the sweatshirt, search for sunglasses, wander past the innocent guy selling hotdogs and university employees preparing for the onslaught of new students and their families in the weeks ahead.

Then on through the fall, a vibrant college campus, glorious autumn colors, young people blissfully unaware of the horrors that go on inside that huge building looming over their campus. Our toughest days. Dark, dark days. But it was still warm and we tried to make up for what we’d lost of summer, strolling Austin from the hospital around the pond at the Art Museum, tossing coins in every fountain we passed, wishing, always wishing.

Into winter, the holidays alive with hope and possibility. Twinkling lights and happy wishes reminding us constantly of all we have to be thankful for, of all that others have lost. The final chapter of this story dragging on much like Cleveland winters do. Learning that the Broviac would stay in for extra weeks and possibly months felt like Groundhog Day with a poor outcome—how much more (winter, cancer) can we take? How much more (snow, sickness) will come our way?

But spring is coming, at least according to the calendar. New life, rebirth, blossoming. Austin is going to sprout up like a weed in the months to come, I have no doubt. He will finally outgrow the onesies he’s been wearing since last summer, will learn to swim, will experience the freedom of running naked, will begin to forget.

We have come full circle, through the seasons of the year. We hope beyond hope that our cycle is over. But Mark and I will never forget.

Today was easy. We arrived in pre-op around 8:30 and spent a good stretch of morning just waiting (so much of this has been about just waiting). Austin was a little grouchy because he hadn’t been allowed to eat breakfast, but we managed to distract him with toys and tickles. When we changed him into the hospital gown and removed that carefully wrapped ace bandage from his chest, he nearly pulled the Broviac out all by himself! Then the docs used it one last time to administer propofol making him gleefully oblivious as masked strangers wheeled away from us. We were back in post-op holding him a mere forty minutes later, nothing like the eight-hour surgeries we’re all used to. He sports a regular little band-aid over a tiny hole, no stitches, not much of a scar. Just like that, whoosh—all better.

And then we walked together down that hall leading away from Pediatric Surgery one last time. Feeling lighter, satisfied, content. We stood at the elevator, waiting for our chariot to arrive and whisk us far far away. The elevator stopped, door opened, another family got off as we got on. We didn’t know them and yet we knew them all too well. For one it ends and for another it begins, this cancer roller coaster does not stop for long. Mark shot me a knowing glance and we squeezed hands and vowed once again to never forget:

We were, we are, and we will remain the luckiest.

And then, one year and thirty pages later, this ending:

Mark and I step out on to the back porch and see the boys on the swingset. Braedan is pumping ever higher on the swing, feet reaching for the treetops. Austin is trying yet again to master climbing up the rockwall. He secures one foot and makes it a few inches up, only to lose his balance and slip back down again. But he doesn’t quit, doesn’t give up. He just brushes the wood chips off his hands and tries again. Nothing will keep this kid down.

He climbs, one small step after another, and I start to head in that direction, fearful he may fall too far and get hurt, but Mark pulls me gently by my sleeve. “Let him do it,” he whispers. And he’s right. We’ve held him this far. Let him do it.

And he does. Of course. He makes it to the top, scrambles to his feet and sees us watching. “Awtin do it all by de-self!” he shouts with pride.

So we clap, like normal parents do when their normal kids achieve some normal new skill.

I start again across the yard and Austin zooms down the slide, skidding to stop at the bottom before picking himself back up and bounding through the grass, little feet trying to keep up with his smiling face and head lunging forward, and he dives into my arms.

I swing him around, holding him tight while he laughs. And on one spin, I see Mark, my solid steadfast partner, watching us happily. And on another spin, I see Braedan, my capable, confident child, swinging happily.

We are a family of four. We are alive, intact, together.

And we will be okay.

And finally — I still hope, finally — this one:

I’ve ended this book twice already. Once with the words, “We are the luckiest,” and once with, “We will be okay.” I don’t suppose I can repeat with any credibility that we’re the luckiest. We’re lucky, I’ll give you that, definitely lucky. With all the horribly unlucky things that have happened to us, we’ve once again come out the other side. We have avoided the worst fate. And the second worst fate, kidney failure, which falls quite a few rungs down on the ladder-of-the-unbearable from the first worst fate. I’m optimistic, always hopeful. But not stupid. We’re not the luckiest.

But we will be okay. I know that. We’re not done, I know that too; the future holds many perils yet. His cancer could return, in his kidney or liver or lungs. Next week, next month or next year. Or a secondary cancer could catch us off guard ten years down the road when we’re more worried about our boys, suddenly young men, driving too fast or drinking too much than about shadows and lesions. And then there’s that kidney. We’d always believed he’d lose it during the years of puberty. Now that seems a luxury. It will not last forever, that would be too much to ask, but I do hope he can avoid dialysis entirely, move straight from kidney failure to transplant, only allowed if he’s two years cancer free. That’s the hope I’ll hold onto.

So it’s not over. Maybe we’ll get one good year, maybe five, maybe more. And then we’ll be driving right back down that hill, searching again for a parking spot, surely there’ll be more construction, maybe even a new parking garage? Faces will have changed, more wrinkles, graying hair. People will peer at us and wonder where they’ve seen us before. “Austin Gallagher, bilateral Wilms,” that’s how I’ll introduce us. “We were here back in the 00’s” (is that what we’ll call them?). Somehow that most unnatural thing—a sick child—will become our normal again. But for every moment until that moment, we will live. We will live and we will laugh and we will love a whole heck of a lot. And when that moment arrives, we’ll hunker down and come together and rise up and we’ll get through it. Again.

Because we will be okay.

Austin will have an MRI on Thursday afternoon.  It took some juggling to get this scheduled because we were initially hoping for a morning slot, since he can’t eat before being sedated. But the next available morning slot was on May 31 and none of us (neither Mark and I, nor Austin’s doctors) were comfortable waiting that long. Turns out he can have clear liquids until noon and, lucky boy, popsicles count as a “clear liquid,” so the snack at school that day is settled and I’m not dreading the slow ticking by of the hours that morning.

We’ll see his oncologist after the scan and I imagine we’ll have some results to discuss before we leave that day. But it’s important to note that we don’t expect to get either good news or bad news out of Thursday. We simply expect to get more information. I know, now you’re all going, “Whhhhaaaaaattttt??” But here’s the deal: the MRI cannot tell us if what’s inside him is cancer. It also can’t tell us if it’s not cancer. The purpose is solely to get a good, clear image of the “thing,” its size and, especially, its location.  We may be able to see if it’s filled with fluid or not (both of which could be Wilms tumor, so that isn’t terribly relevant either). Barring some bizarre turn of events, like if the thing has doubled in size since last Monday (which would obviously be very very bad) or if it has disappeared completely (which would be good, but confusing), we hope to walk away from Thursday with enough information to help us determine what to do next.

If we want to know definitively what the thing is — and, as of this moment at least, we most certainly do — then we have to biopsy it.  The MRI will let us know if the radiologist can attempt a needle biopsy instead of having to do a surgical biopsy. If the thing is located in a spot that’s easy to reach with a needle, without having to go through too many other tissues or organs or what-have-you, then that will be considered good news.  If it’s not reachable, then we’ll have to decide whether we move ahead and do a surgical biopsy, which is the more aggressive approach because it poses many risks to the kidney and his insides, due to the excessive amount of scar tissue they’d have to cut through to get there. Or if we take the dramatically less aggressive approach and “watch and wait,” by doing repeat scans more frequently to monitor the “thing,” without taking any action until it grows or changes.

It’s confusing, I know (as so much of this has been), but the MRI is really just a first step toward what will ultimately be either good news or bad news. Like we’ve done so many times before, this is a take-one-tiny-inch-at-a-time kind of deal.  One tiny inch is about all I can handle right now.

I know that every time this happens, there are a zillion questions running through everyone’s minds that send you all scrambling through the blog archives and even to other online sources. “But wait, … what about that time three years ago when …?” I noticed on my Stats page yesterday that someone was directed to my blog after  searching the words “3rd relapse Wilms cancer.” At first, I thought, “Huh, how ironic,” but then it occurred to me that it might have been one of you out there looking for reassuring information.

Well, you won’t get it. I just typed the same words into my search engine to see what would appear and it’s all old articles I’ve read before, some many times over, one from 1987 with (hopefully!) outdated data. The survival stats according to those studies fall in the 30 to 40% range … and that’s for the first relapse. Nobody really mentions another relapse and nobody seems to be talking about bilateral Wilms or what was once rhabdomyomatous Wilms or any of the other variations that make Austin’s case so ridiculously one of a kind. So, we’re just going to ignore all those and go with what we know about this specific child at this particular moment.

We know that, for all intents and purposes, Austin is well. His labs are steady, which means his body is not under assault and whatever may be in there right now isn’t causing any measurable harm. And he certainly, without a doubt in anyone’s mind, seems well. And that is worth something, both psychologically for all of us but also diagnostically.

We also know that the “thing” they’re seeing on the ultrasound is 1.4 centimeters in size and of an ill-defined shape. The radiologist went back to the two previous scans and, while he can’t rule out with 100% accuracy that it wasn’t there before, he did not and can not see it on any images prior to Monday’s. The official report labels it “new,” which is always bad, but they also say it’s “nonspecific,” and that an “underlying lesion cannot be excluded.” In other words, “We see something in here we haven’t seen before. We can’t tell what it is but we can’t rule out that it’s not a tumor.” Further imagining is recommended.

That’s all we’ve got. But we also have history. We’ve been down this road before, where we see something and can’t define it. First, in December 2008, we began to watch a “something” on his scans which we then biopsied in March 2009 and discovered was cancer. That was removed in April 2009 and turned out to be “old cancer,” all of which coincided with the launch of this blog. Then in October of 2009, we again began to watch another “something.” This was the one that we followed, on pins and needles, throughout that fall, finally deciding to ignore in November, before it doubled in size (“You will not ignore me,” it seemed to be saying) and turned out to be relapsed cancer in December. (Consider yourself warned before you go back and read all those linked posts because, oh my, they contain a lot of drama and a lot more f-bombs.)

Those are really the only “somethings” we’ve watched, except for the “something” in his liver (good god, what a stupid word, something something something). That something did appear on Monday’s ultrasound, unchanged in almost two years. The doctors have contented themselves with the fact that this thing never grows or moves, but will be happy to get a better look at it during the MRI. I consider that thing somewhat different because, 1) it’s in the liver, not the kidney and 2) it’s been there for a good long time without doing any harm.

So, that’s what we have and that’s where we are. I personally feel better today. Not for any specific reason, but just because it’s less raw than it was twenty-four hours ago. We carry on as we always have, because, you know, that’s what we do. Braedan had baseball last night and Austin swung across the monkey bars nearly the whole time. Then we took the troops to Sweetie Fry for treats and didn’t get to bed until well past 9. The boys both know that there is something there that might be cancer, but neither has much wanted to talk about it.  Austin did say the first night, “But I don’t want to have cancer again,” and, oh, if it were only as simple as what we want and don’t want. Since then he tells me to “Shut up” with a slight smirk on his face every time I mention it, so I’m backing off.  Braedan has sporadic questions but will only talk about it on his own terms and his own timing and otherwise sticks his nose in a book and carefully ignores the conversations going on around him. Oh, the child psychology of all this is sadly fascinating.

We have read and listened to all of your very lovely messages and, as always, they bring us strength and comfort. I am not in the mood for returning all your calls and will simply see and speak to each of you as time goes on. We do deeply appreciate the small acts of kindness directed our way (the boys were especially thrilled with the surprise delivery of Dunkin’ Donuts this morning, Ruppes!).  And it did not go unnoticed that all the kids at Austin’s preschool wore their St Baldrick’s shirts yesterday. As I said before, the many offers will be accepted over time, especially if we end up with two-plus years of dialysis.

Oh, that brings up another joyless question I’ve heard too many times in the past three days: If he does indeed lose this kidney, when could he receive a transplant? Well, if this is truly cancer, then the “two-years cancer-free” clock is reset. And it wouldn’t start ticking down until he was completely finished with whatever treatment (chemo or radiation) he might first require. So we’d likely be looking at two-and-a-half years of every other day dialysis. But you know I can’t quite bear to think of that right now. For those of you who have made the ultimate offer — one of your kidneys — I  say (I mean, I shout while jumping up and down), “Yes, yes, thank you very much,” but we can’t even begin the pre-match testing until we’re much much closer to transplant. So just stay healthy and don’t disappear from the online universe.  I will be calling!

… 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.

We believed it was gone. We really really really believed it was gone. Not just that we wished it was gone or wanted it to be gone. It was gone.

And now it’s back.

Dr. Auletta came over yesterday afternoon — you know you’re in trouble when your oncologist makes house calls. We’d already talked on the phone, we already knew. Mark had come home early from work, I had cancelled an afternoon meeting. But we went through the motions with the kids: cutting their fruit just the right way, pushing them on the swings, looking up with an appropriate display of pride and delight every time one of them shouted, “Look at this, Mommy!” I read to them, wondering how on earth I had ever liked The Lorax because it was so god-damned long. I laughed with them and shook my head in wonder at how marvelously healthy they seem.

But Austin is not healthy. The “thing,” the little blob we truly believed was scar tissue or a bit of packing cotton left over from that last surgery in October 07, is actually a tumor. “Another of Austin’s Wilms’ tumors” is how Jeff described it when he called.  There is a lot we don’t know, but what we know is enough. Austin’s cancer has recurred.

And recurrence, you know, is pretty bad. This means that these particular cancer cells are tough, tougher than the rest were, sneaky like they’ve been hiding in there plotting their return, waiting until we had fully settled into our normal lives before rearing their ugly heads again.

But it’s not doing anything right now; it’s not growing and it’s not harming him in any way. So we’re waiting. We’re gathering information first from all the best sources before we develop a plan, a new protocol for moving forward. Jeff sent all of Austin’s files to St Judes and also to the “Wilms’ tumor guru” in New York who’s been following along since the very beginning. Plus Dr Elder, the one in Detroit who did Austin’s last and trickiest surgery, is coming in on Sunday to look at the slides and see what he thinks he can do. There will be another surgery, that’s pretty certain, but what we need to decide is whether we remove just the tumor or remove the tumor and what remains of that kidney. It depends in part on whether there is more cancer in there and on whether this little tumor is attached to the kidney in any way, something we can’t tell from all the scans. And of course, dialysis looms large once again, something that fills me with dread.

And then there’ll be more chemo and probably radiation this time. It is these thoughts that put me over the edge, that move me from numb disbelief to gut-wrenching sadness. I’m afraid it will change him, all this torture, squash the light out of him, make him a sick child. I don’t want him to be a sick child. And radiation is going to make him sick — he’ll be nauseous and skinny, he’ll be pale and bald, he’ll be sick. My Austin who is not just “okay” right now, not just “normal” — he’s vibrant, he’s wild, he is full of life. He hops from one place to the next, especially after I say “Hop to it, kiddo” which he takes quite literally. He jumps down the stairs, skipping three or four at a time. And you should see him jump on the bed: he counts as he bounces up and down and at five, he shouts, “Time for funny stuff” and dive bombs onto the mattress, landing flat on his face without ever putting his hands out to catch himself.  He is as alive as they come.

And now this. Mark commented yesterday on how the outside and the inside of him are so totally different, not aligned, like no one told him he was sick so he just moves forward at light speed, living it up, making silly faces, laughing, always laughing. We have had a really good year. A great year. I don’t mean for that to sound so forboding or conciliatory like when some old person dies and everyone says, “Well, they lived a long and happy life,” but we have had a really good year. And I am so glad for it. I am so glad he got to be a kid, to be himself, to show us all who he is, before we head back down this road.

We’re not acting fast. This Tuesday, he’ll have a chest CT to make sure it hasn’t spread to his lungs which would be horrible but is very unlikely because he had a chest x-ray just on Wed and they’re pretty accurate in picking this up. So that’s an out-patient procedure, just a few hours. And then we’ll wait for word back from all the experts we’ve consulted before we decide what to do. As many of you know, Austin’s case was rare to begin with and it has only become more and more rare as we’ve moved through this. Whatever we do now is going to be brand new, a plan devised for him alone, without numbers and stats to back it up. But the best minds in the country, and probably the world, will back it up. And that will have to be enough.

 So we should be home, going through the motions of normal life, for at least a week, maybe two. I’m happy to have this, although I know it would make some people crazy, like “let’s get in there and do something already.” But I know how good he feels right now and I am in no rush to change that. So we’re going to go on lots of outings, enjoy ourselves to the fullest, before we start this journey anew. Plus, we haven’t told them yet, either boy, and it is going to be brutal on Braedan this time. He just knows so much more, he’s so very smart, and he loves his little brother so very much.

You know, I started this blog just two days ago as a marketing tool. I’d studied the industry and knew I needed to generate some media attention and garner a following which would then help me attract an agent and secure a book deal. This was a selfish endeavour. It was about me. I was actually worried about coming up with enough new material to keep people interested and coming back. Jesus, what I would give to be sitting at my computer late at night wracking my brain for clever new things to write about. None of that matters anymore. This is about Austin. It is all about Austin.

We are about to set off on a terrible new journey, one we never wanted to take, one we really believed we would never be forced to take. And it is going to be hard. We know a lot more than we did the first time, we know our way around pediatric oncology, both literally and figuratively. But this is new ground. I don’t think we can yet imagine the challenges we’ll face, although I lay awake in bed all night imagining them. But we will do this. We will do everything we have to, we will do everything we can.

And we will not lose this child.

August 2020


August 2020