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Of course, all this hemming and hawing about what to do next could be quickly rendered null and void if something suspicious shows up on that kidney. Austin has an abdominal ultrasound this Thursday morning, which, as you may or may not remember, is all we’re allowed to do with a GFR under 30.
His kidney isn’t functioning well enough to filter out the contrast he’d need to drink for a CT scan or the gadolinium needed for an MRI. In fact, for patients in end-stage renal failure — which is several steps beyond where Austin is — MRIs are associated with this horrific condition that causes thickening of the skin and organs . . . and has no treatment. Basically, your organs keep thickening, leaving you completely debilitated, until you just die. Not something I’m prepared to sign my okay to on a routine consent form. So that leaves only ultrasounds which are good because they don’t expose him to unnecessary radiation but aren’t quite as precise in finding small or hard-to-detect growths. We’ve arranged for all of our ultrasounds to be done by the best doctor possible, one who knows Austin’s kidney very well, so that makes us feel confident that this method of “watching” is good enough.
That will take place this Thursday and then Friday Austin needs yet another eight-hour blood transfusion. His kidney is not making something called erythropoietin which stimulates the production of red blood cells, so his hemoglobin can’t fully recover from the effects of chemo. (Anybody have to consult an online dictionary to get through this post? I did, to triple-check my spelling!) This will be the first time he’s had blood since the removal of his PICC line so we’ll see how he does with a peripheral IV in his hand. Hopefully one will do the trick and not be “blown” by the heavy volume over the course of the day. Inserting a second IV halfway through might just be too much for the little guy.
So, we’ve got a few days that will feel like we’re back on the hamster wheel of treatment. And then it’s off to Chautauqua for a weekend of boating and fireworks. Start countdown now . . .
Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.
Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.
It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.
But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while. Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.
Many of you have commented on the appeal letter you received recently from Rainbow Babies’ & Children’s that was written by my mother. For some unknown reason, ours has yet to arrive in the mail but I finally saw the finished product when we went in today for labs.
It features a one-and-a-half page letter, along with an insert with the following photos:
Her letter, which was revised to fit a more formulaic template, originally started out with, “Of course, I wish my grandson didn’t have cancer.” She went on to say all the things she wishes were not as they are: bald Austin hooked to an IV pole to receive daily chemotherapy, her visits to hold him each afternoon that we’re in-patient, her worries as she mothers a child who worries and mothers a child with cancer.
But if this is our reality, she goes on to say, then at least we have Rainbow. After describing the extremely personal and expert care we receive from Austin’s oncologist, she continues, “I am grateful every day for the nurses who stay focused, positive and supportive while handling situations that require judgment, quickness and courage. I am grateful for the people who call Austin by name each day as they come in to mop his floor or collect his trash. I am grateful to be wished a nice day by every single staff person I encounter. I am grateful that Austin can jump on his bed and play with his little race cars — despite that darn IV pole. And on those occasions when he climbs into my lap and succumbs to a nap, I sit as still as I can for two or three hours if need be, so as not to shorten by one minute the joy of having him in my arms, still alive and with a hopeful future.”
There is much we wish were not as it is. But there is much we are thankful is just as it is.
I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study protocol we’ve been following, half of the children had a second recurrence (which, not to confuse you, means a third time). But, like I’ve all too often, Austin doesn’t fit neatly into any of the categories of children in that study.
The main reason is that Austin’s initial tumors, on both sides, had that rare rhabdomyomatous differentiation. This is significant in terms of his future prospects mostly because his initial cancer was resistant to chemo and therefore, the fact that it recurred once doesn’t necessarily mean that it beat chemo — which is what makes recurred cancer so much more deadly in the first place. Think about this: if you treat cancer cells with the deadliest weapon known to doctors (chemo) and instead of being destroyed, they instead go into hiding before sneaking back out again, that means they’re pretty darn tough cancer cells. But if you knew that chemo wouldn’t work on them anyway (or would only work on 20% of them as was the case with Austin), and then they returned, it’s a whole different ball game. The cells didn’t actually beat the chemo, they just didn’t respond to it.
Add to that the fact that his most recent cancer was not rhabdomyomatous at all but instead a regular old Wilms tumor and things get even murkier. Did it morph? Was it maybe smarter than the chemo and it somehow changed over time? Or, because we were watching it so closely and frequently in those months and actually saw it grow over that two week period and then quickly swooped in and removed it, did we just catch it so early that it hadn’t yet had the chance to evolve from a classic Wilms into a rhabdomyomatous Wilms?
I know, blah blah blah, I’m sure I’ve lost a lot of you with that damn “r” word again. The important thing to glean from this is that Austin’s recurrence doesn’t mean the same thing as some other child’s recurrence. Unfortunately, what it does mean remains unknown to all of us. Quite frankly, we don’t know whether his chances are made better or worse thanks to his unique situation.
Which brings us to the other major question I’ve heard and that is, how likely is this cancer to spread if it does return? A very important question because if it never spreads, then taking the kidney out preemptively isn’t even necessary. Why not just roll the dice, hope for the best and then if (if!) some small shadow appears on a scan down the road, we remove the kidney then? If it’s not gonna spread anyway, we just scoop out the whole kidney (“whole kidney”? ha!), tumor and all, and start dialysis then, when we must. One problem with this is that it resets the clock and we then have a full twenty-four months before transplant (as opposed to, say, twenty months if we remove the kidney electively in August). The bigger problem is the danger of the cancer spreading. If we leave the kidney in and cancer returns and then spreads beyond it to Austin’s liver or lungs, then we’re in real trouble. Like, you know, real trouble.
Which brings us back again to the rhabdomyomatous question. That variant is highly UNlikely to spread (and Austin’s certainly never has), whereas classic Wilms is more likely to spread. So, like I just asked, was his most recent cancer really classic Wilms or would it too have morphed into a rhabdomyomatous tumor over time?
I know, your head is hurting now. Imagine how mine feels.
So this brings us back to our current — and ongoing — predicament about what to do next. So many of you have expressed what a terrible position this is for me and Mark to be in, how horrible and unfair it seems to place this sort of responsibility in the hands of parents. And in many ways, I agree: I hate the choice we have in front of us.
But I also believe that we are the best ones to make it. In the absence of clear medical and scientific information, no doctor has the answer right now. They have opinions and recommendations, but they don’t know what the right choice is. And neither does Mark. And neither do I.
But we do know Austin. And we know, beyond a shadow of a doubt, that no matter what we do, we will do it with Austin’s best interests at heart. We are his parents. No one on earth could handle this decision more carefully than we will. No one on earth could care more about its outcome than we do.
So who better to make this decision than us? In whose hands could his fate possibly be more secure than ours?
It’s not all fireworks and ice cream cones around here, you know. Austin’s health, current and future, continues to be paramount in our minds and in our lives.
At his appointment last week, his oncologist said that as long as his renal numbers remain fairly steady, we could go two weeks before our next visit. That seemed like a huge vacation — two full weeks with no trips to the hospital! We haven’t had such a significant break since last November. Well, lo and behold, his creatinine was the same as it’s been for several months but his phosphorous level was up enough to warrant a visit to the nephrologist today. She did a series of labs to check for many of the complications that befall patients with chronic kidney failure, like brittle bone disease (caused in part by excess phosphorous in the blood). And, of course, because she switched him to a new blood pressure medication, we’re due back next Wednesday for another visit.
Then there’s that pesky issue of what to do about Austin’s kidney, which we have yet to resolve. We go through periods where we feel fairly certain that we’ll remove it at the end of the summer, and then we think of a zillion reasons why we shouldn’t.
In terms of his general health (not counting that small issue of his cancer returning), he is much better off now than he would be on dialysis. I forget if I explained that the GFR score is equivalent to percentage of kidney function, but we can basically say that right now Austin’s kidney is functioning at between 25 and 30% of full kidney capacity. Dialysis only replaces about 11% of kidney function (yeah, how’s that for bad news? All that hassle for 11%?), which is why patients with regular kidney disease don’t start dialysis until they have a GFR below 15. So you can see that in that regard, he is much better off as is, chugging along with his defective partial kidney, than with no kidney at all.
It’s a pretty significant distinction after all. Here’s a child, in his prime years of physical, emotional and academic development, with a major organ functioning at thirty percent versus ten percent. Removing that kidney has implications across the board for him and his longterm health. Not good implications either.
Except for the one good thing that can come out of it. Except for the flipside of our constant dilemma: What if there are tiny invisible cancer cells lying in wait inside that precious kidney? And what if, given this current reprieve from chemo and radiation, they gain strength and gather together, forming a new army ready to wage war on his small body yet again? What if we wait one month, one week, one day too long before making this critical decision? What then?
So we fill our days with ice cream and fireworks, big underdog pushes on the tire swing and extra chapters of the latest favorite (The Trumpet of the Swan) at bedtime. It hovers there, our reality, even when we’re dancing in the crowd to raggae music, Austin spinning in circles around us to the beat of Carlos Jones. Our reality remains. But while Mark and I can not escape the weight of this decision, our children can.
Check this out:
Okay, so maybe you can’t see it that well but trust me, there is hair all over that head. Starts as a swirl in the back, moving outward in concentric circles of dark hopeful fuzz. I know, who describes hair as “hopeful,” right? But trust me again, this boy’s hair definitely conveys hope.
So much for dodging sympathetic glances, something I’ve been actively doing for the past six months. Nobody even looks twice anymore. Except maybe to see how cute they are.
I know it sounds cliched and a little bit trite to hear people go on and on about how cancer makes you appreciate every moment, how you learn to live life to the fullest and feel thankful for each small thing. But it’s really true.
Everything we do seems to be tinged with a heightened sense of importance, which often leads to a heightened sense of fun. We have filled our past three days of official “summer” with lots and lots of swimming and friends and backyard fires and bike rides and fireworks and even a baseball game.
Friday night we went to Austin’s first Indians game and Braedan’s second (both in a loge — I don’t know what that boy’s gonna think when he goes to a “real” game!). They thoroughly enojoyed themselves, mostly climbing around on the seats and coloring pictures of Slider the mascot. The night ended with a massive fireworks display, worthy of any town’s official Fourth of July show.
As I sat under the dark summer sky with Austin in my lap and Braedan behind me screeching with delight at the fireworks exploding in front of us, I couldn’t help but think how very very lucky I am for now. Six months ago, we didn’t know if we’d get to now. I am so so thankful for now.
We have a bird’s nest on our front door. It sits atop a wreath that’s been hanging there since we moved in. The babies have just been born and now the parents are more vigilant than ever, swooping through and nearly attacking anyone who dares to set foot on our front porch.
I know the birds will quickly grow and fly away, allowing us to reclaim our porch. In fact, I stood in the backyard with a father of Braedan’s friend having that very conversation yesterday while we watched our big boys play on the swingset, mere hours after they’d finished their last day of kindergarten.
Now, I know we’re not empty nesters or anything, but it sure does go by fast, those little babies raising their beaks out of the nest waiting to be fed one day and flying off on their own the next. Suddenly, my first baby stands before me a reading, writing, six-year-old. And I know that as quickly as these past six years have gone by, the next six years will go by and then the six years after that.
He has had a great year, made much easier by the calm consistency of his teacher who provided a necessary sanctuary from the chaos that enveloped our lives. Braedan certainly struggled with Austin’s sickness, much more this time than the first, having a kindergartener’s heightened sense of injustice, but his school remained a place of security and comfort throughout it all.
And, my god, the stuff he’s learned! I knew he would learn to read (since “kindergarten is the new first grade”) but I am nonetheless amazed at his ability to pick up almost any book and decode almost any word in it. And his writing–that has been my favorite thing to witness. He brought home his Writer’s Workshop folder last week, complete with a one-page “story” written each Monday that perfectly captures the scope of his year. From raking leaves and trick-or-treating in the fall to skiing with Daddy and Grampy in the winter to shaving his head for his little brother (“That was a fun day!”) to the more recent entries that cover the front and back of a sheet with “And then . . .,” “And then . . .,” “And then . . .”
As much as Austin has wowed us all, time and again, with his ability to just keep rolling with it, so has Braedan. He is a happy, well-adjusted, rising first grader:
For months, and now years, we have all sent our wishes to Austin, written on paper, on keyboards and in our hearts. We’ve wished for broad ideas like strength and happiness, health and peace. We’ve wished he’ll reach regular childhood milestones like going to kindergarten and learning to ride a bike. We’ve wished for health-related miracles like “no more cancer” and kidneys that keep filtering. We’ve wished well into the future for finding true love and fishing with his grandchildren.
But until now, we’ve never asked Austin for his own wish. And he has one. It’s not huge, just a typical kid’s wish, one he told me completely unprovoked one day last December as he lay in his hospital bed recovering from surgery: “Mommy, I want to build a treehouse in our new backyard.”
Well, okay, I thought, if ever a child was going to get a treehouse, it would be this one. So a few months ago when we got our Make-A-Wish packet in the mail, I immediately thought of Austin and his dream treehouse.
We hadn’t been eligible for Make-A-Wish his first time through cancer because he was too young. You have to be at least two to ensure that it is indeed the child’s wish that is being fulfilled. (As opposed to, say, a parent like me who might — just might — say something like, “Oh yeah, Austin? He’s always wished to have a playdate with Shiloh Jolie-Pitt. Uh huh, always, lifelong dream. And he really wants to have that playdate at her house, you know, the villa in the South of France? Oh, and he insists that Mommy come along with him so she can hang out with Shiloh’s parents and sip some French wine on the lawn of said villa.”)
Joking aside, we’ve also been uncertain about whether or not we would take advantage of Make-A-Wish at all, seeing as we can afford to build a treehouse ourselves. But Austin’s doctor and especially his nurses convinced us that this is not for poor children but for sick children, and that they will make it into a memorable experience beyond just producing a thing, and that Austin deserves fulfillment of his wish as much as anyone.
So we sent back our papers and met with our Wish coordinators on Monday. They came over with gifts for both boys (of course) so we could fill out paperwork and flesh out some of the details of Austin’s imagined treehouse. Well, you know once they got the boys started on what it should have, they went wild: swings and slides and fire poles and telescopes and Braedan even suggested that it have a really high ceiling so we could fit a trampoline inside it (somehow I don’t think that one’s gonna make the final cut). Then they asked what it should look like and they started out simple — Austin likes red — but suddenly moved into interesting shapes like maybe it should be a t-rex or a pirate ship or a rocket ship or even an airplane that crashed and got stuck in a tree!
We’ll see what the team of volunteers comes up with but so far the boys are thrilled with the very idea of it, and Make-A-Wish has already achieved its purpose of making them feel special and happy, and giving them something to be excited about outside of hospitals and doctors and sickness. Which is, after all, what we all wish for them.
Oh, you know I’m gonna keep on writing . . . just because the PICC line is out doesn’t mean we’re that done! Not like the first time when Austin’s Broviac was removed and I wrote that fantastic (in my humble opinion) ending on the Carepage, which became the last page of the book, and then stopped updating until his next CT three months later.
Here it is, just in case you weren’t around back then: the original ending, written on Wednesday, March 19, 2008:
“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 hot dogs 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. But it was a warm fall and we tried to make up for what we had 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, growing, 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 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 rendering him gleefully oblivious to the masked strangers who wheeled him 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: their reason for being here was written all over their faces. So 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.”
I loved that ending. I imagined readers coming to that final phrase of my 254-page memoir feeling good, relieved, satisfied that after all that drama, all was well in our lives. And then they could put the book down and walk away. Just like I thought we had.
Except we hadn’t. That quick little Broviac-removal wasn’t our last visit to “Peed Surge” and our chariot didn’t carry us nearly as far away as we’d hoped. It was a full year, almost to the day, before I had to write this one and even that was only the beginning of what will have to be a seriously revised book (or two?).
But even though the ending didn’t last, that final thought holds true. And no matter what befalls us, we remember it every single day.