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I lied to Kat Meyer. It was early last fall, after the kids had gone back to school and her family was briefly home in Cleveland during their months-long stay at the Children’s Hospital of Philadelphia. I told her, expert that I was in such things, that the year ahead would be exhausting. It would be sad, hard, frustrating, terrifying, surreal and completely and utterly exhausting. But then it would be over. They would pull together and they would do this hard thing and then they would be okay again.
And there was my lie.
I only said it because I believed it was true. That first critical surgery, where doctors cut open the skull of her five-year old daughter to remove a “bad rock” from her brain, had been successful. And so they would move on, going through the miserable motions that are childhood cancer treatment, and then they’d get on with their lives. Becca would get on with her life. Or so it seemed.
I spoke with more truth recently, after they discovered her cancer was back and treatment options nearly nonexistent, when I told her that she had entered a realm I knew very little about. Because, while I’ve heard the words “Your child has cancer,” on three separate occasions, I’ve never heard the words, “And there’s nothing we can do about it.”
Quite honestly, I don’t know a thing about death. Not in any real sense at least. And yet I’ve become this de facto expert, helping people prepare their children, helping people grieve and heal, planning and organizing and gathering, comforting the mom whose husband died suddenly, giving advice to the friend whose mother is getting close.
But I haven’t experienced any of it myself. I’ve never lost anyone. Besides my grandparents, I haven’t lost my parents or my in-laws (nor even had a significant scare). I’ve never lost a cousin or a sibling or even a friend. I’ve barely experienced death at all.
I have glimpsed it though. Like a shadow lurking behind me. I’ve felt it there, hovering over my shoulder, slipping just out of view when I turn to stare it straight in the eyes. It’s been present enough so I can smell it and almost taste it in my mouth. I’ve had those words, “Palliative chemo” uttered to me, but only in response to a What If question (“What if this treatment protocol we’re about to start doesn’t work?” . . . “Palliative chemo.”) I smelled death around me for the sixteen days back in May 2012 when we thought his cancer had come back for a third, and final, time. Just enough so that I’ve vacillated between two equally horrible extremes: One in which, in strange moments of calm, I could almost allow a slow but steady acceptance to seep through me. I could say to myself, “Okay. This is coming. This is really and truly happening. And we will make it the best, most peaceful and most comforting death ever. And then we will pick ourselves up and we will move on. We will be okay.” And as soon as I’ve dared to allow such traitorous thoughts into my mind, they are knocked out with pure and absolute refusal. This thing will not happen. I refuse to allow it to happen. “No, you will not take my child. I WILL NOT let this happen. I will fight, scream, beg, plead, claw my way to him and I will hold on with a grip so tight that nothing, no one, will be able to pry him from my arms.”
I imagine Kat and Eric go through that particular roller coaster ride several times each day now, as they watch their seemingly healthy daughter run around the playground, perform in the kindergarten concert in full princess attire, squabble with her friends over toys. And yet they know, they know what is coming. What might strike on any given day. Death is lurking in the shadows, hovering over their shoulders. And if they fight it, refusing to allow it to come into full view, then I wish them all the strength and luck in the world. And if, given their sad reality, they accept their fate with broken hearts, then I wish them all the strength and luck in the world.
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.
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.
What a difference a year makes. I find myself struck day after day after day by the power of the memories of last year. Right before Thanksgiving (last Thanksgiving), Austin had an ultrasound that revealed a new spot. New, as in not the same spot we’d been watching and worrying about all fall. So we knew, at that point, we almost, mostly, practically knew what that his cancer was back. But we weren’t quite ready to commit yet, to actually do anything about it.
So we waited, a few more weeks, for a repeat ultrasound. And that happened on December 7. One year ago tomorrow. And that, well, you can read it here. It was a Monday and then I sent Austin back to school that Tuesday and Wednesday because I knew these would be his last days there for a good long while. We spent one quick night in the hospital that Thursday for a CT scan and then returned the following Sunday for the next surgery and big pre-Christmas stay.
But it’s that day of school on the 8th that I remember. I dropped him off in his classroom and walked out as he cried for me, held tight in the arms of his teacher. It wasn’t unusual, he cried when I left on most days last year (and many this year). He ends up happy, within mere minutes, so I knew in my head it would be okay. What I felt in my heart was another matter. That walk out was one of the hardest things I have ever done in my life.
One of my closest friends happened to be parent helping in her daughter’s classroom that morning. And I had stopped to see her for big hugs on my way in, but I didn’t want to stop again so I walked out the door and down the path to my car, and I suddenly just lost it. Another mom came walking up, one I know well who had already read the previous night’s update and I just fell into her arms. She was holding a baby bundled in a snowsuit but managed to hold me too. And I sobbed. And I really wanted her to go back in and get my other friend for me, but I couldn’t bear that one minute when I’d be standing out there alone in the snow, while parents who didn’t yet know wandered past me. So she did the job (thanks, Lisa) and I mumbled over and over into her winter coat, “I don’t know if I can do this again. I don’t want to do this again.”
But, boy, did we do it.
On this weekend last year, we chopped down the top of a pine tree here in our new yard and brought it back to our old house to serve as our Christmas tree. Well, it turned out to be pretty spindly and lopsided and very Charlie Brown-like:
So we made up for it yesterday by buying two trees. One for the living room, which the boys are calling their own because they finally got their wish to have colored (as opposed to my preferred white) lights. And another for the dining room, where I finally got my wish to have a perfectly color-coordinated tree.
Yup, we definitely did it.
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?
Yes, you read that right. We are wavering. Not about chemo. We feel certain and confident in our decision to stop. But about the kidney.
I was wrong when I said last week that there was nothing we could do to push Austin’s chance of survival up over 50%. There is something we could do: we could get rid of the source of his cancer in the first place. Take the kidney out and put cancer behind us. There’s still a risk, of course, that it may spread somewhere else, but his cancer’s never done that. He’s been battling this disease for almost three years now and it’s always remained extremely local. While there are never any guarantees, we’d be pretty shocked if it returned somewhere else in his body.
But we wouldn’t be shocked if it returned in his kidney. Which makes us think we should just get rid of it once and for all.
Ugh, yuck, I know, pre-emptive strike. I hate the idea of it, of causing him some harm that might not be necessary, of taking away our chance at the miracle. But we have to consider this, we have to remember the ultimate goal. We’re not there yet; we haven’t completely decided. And there’s not a huge rush, we can wait a few weeks and see how we feel, watch his kidney function to see if it actually begins to bounce back, learn a little more about the ins and outs of dialysis (we’re “touring” the dialysis clinic this Friday when the kids are there). We can give him and his body and all of us a little rest, a small break that might involve a short getaway with some swimming, before moving ahead. It’s not time-specific like the chemo that had to happen within five or six weeks of the last dose.
This is not easy, as you know. I dread the very idea. But we’d be happy to take that kidney out and see nothing in it. That wouldn’t make us feel like we’d ruined something unnecessarily (which was our dilemma back in the fall); his kidney docs don’t think it’s gonna last more than a few weeks — or maybe, maybe months — anyway. And as long as there is no active cancer inside him, he could be eligible for transplant in April 2012, two years after his last chemo treatment.
So we do have some control over this situation, a scary amount of control in fact. We can make an enormous sacrifice now so we don’t have to make the ultimate sacrifice later.
In lighter news, Saturday’s sleepover was a huge success and the boys made an absurd amount of money at yesterday’s lemonade stand (thanks to the fact that next to no one requested change!). No news yet from today’s scans.
Oh, and the “B” on that hat? It stands for Braedan!
One of the features on WordPress allows me to see which pages on my blog people visit and each day, there are at least several (presumably new) visitors who read the “About Krissy” page. So I just looked at it and, wow, that sure can’t help anyone! It actually says, in those few brief paragraphs, that Austin has “been in remission since March 2008.” Humph. I wish.
So, for the sake of any newcomers (or any confused old-timers), I’m going to give the Cliff’s Notes version of the past two-plus years, divided into three rounds.
Round One began on July 30, 2007 when Austin was diagnosed with bilateral Wilms’ tumor, cancer in both his kidneys. His treatment lasted eight months and included four abdominal surgeries, the removal of his entire right kidney and 40% of his left, and twenty weeks of chemotherapy. The details of that round are summarized on the Austin’s Story page, which is a seriously shortened version of what I wrote on his Carepage between August 2007 and March 2008. Excerpts from those months can be found interspersed throughout this blog as well, especially in this post.
Round Two coincided with the launch of this blog and took place in March and April of 2009. After thirteen glorious cancer-free months, a CT scan revealed a new mass floating in his left abdominal cavity (not in the kidney itself). A biopsy confirmed that it was indeed a Wilms’ tumor and we were left reeling, certain that his cancer had recurred. The tumor was removed in yet another major surgery after which we learned that it was actually an old tumor, and instead of a dreaded recurrence, this episode was labeled the much vaguer (but much better) “residual cancer.” The whole thing lasted a mere three weeks and we suddenly found ourselves back where we’d started.
There was another intermittent event between Rounds Two and Three: In October and November of 2009, we began watching yet another shadow, worried that it might be cancer and necessitate the removal of that left kidney. We thought we had resolved the issue when, lo and behold, the shadow changed drastically which brings us to the present, Round Three.
Round Three officially began in December with the decision to go in and attempt to remove this new tumor while also hoping to salvage what remained of the kidney. I won’t go into all the nitty gritties because they’re posted here throughout December, but the surgery was successful in terms of the kidney but not so much in terms of what it showed us about the cancer. Austin had indeed relapsed, his cancer was back and more vicious than ever. After some gut-wrenching back and forth decisions about whether or not keep the kidney, Austin began another protocol of chemo and radiation, which we are currently partway through.
It’s all here, in a crazy and jumbled fashion. These posts are filled with good news and great news, bad news and horrible news. There is hope and laughter and tears and fear and love and lots and lots of living.
For some unknown reason, I was unable to get holiday cards out in the mail this year, so here it is, our virtual greeting to all of you.
2009: what a year. It started with the Dietrich family vacation to Jamaica, where the boys enjoyed swimming in the ocean, swimming in the pool, and naked soccer playing. They did not, however, enjoy riding the ponies.
A few weeks later, Mark and I had the distinct honor of traveling to Washington D.C. to witness the inauguration of Barack Obama as our 44th president.
March and April stunned us with what we thought was a recurrence of Austin’s cancer. This earth-shaking event proved to be relatively easy and quick (relatively being the operative word there) and suddenly we were right back where we’d started.
Summer flew by with a quick trip to Cape Cod, a few weeks in Chautauqua and much work preparing our current house for its market debut.
Fall was filled with significant milestones as Braedan eagerly started kindergarten and Austin reluctantly started preschool. We finally took possession of the new house and began what continues to be an on-going renovation project. Austin’s health was questionable, uncertain, indeterminate . . . and carefully watched.
And, well, you know where that led us.
All in all, it was a year of drastic ups and downs: good health, bad health and in-between health; old houses, new houses and almost houses; lives beginning, most notably that of our niece Amira, lives ending and lives being lived to the fullest.
As it began, 2009 was marked, more than anything else, by an enormous sense of HOPE. 2010 will begin the same way.
Happiest of new years to us all,
Krissy & Mark, Braedan & Austin
This has been quite a few days. Depths of despair punctuated by brief moments of clarity and even hope. I’m mostly just sad, sad for all Austin has had to endure and all he will have to endure, sad for Braedan for the very same reasons, and sad for us. More than ever in this process, I am acutely aware that it is all so very very unfair.
And that one bright spot I was focusing on in the last post, going home for Christmas before surgery? Yeah . . . not so much. Turns out they don’t want him to completely heal because that makes the next surgery trickier. They’d rather cut through him while it’s still fresh because otherwise adhesions can form putting the pancreas, spleen and bowel at risk. So it looks like we’ll do it tomorrow morning or maybe on Monday.
Lots of information here, I know (believe me, I know). Let me try to cover all this ground.
First, Christmas: Assuming we’re still in the hospital, which is what we are indeed assuming, we have permission for Braedan to sleep there with us on Christmas Eve. Once both boys are tucked into their hospital beds, Mark and I will bring their presents from the car to place under the small but beautifully decorated artificial tree in Austin’s room. We have assured them that the hospital has a chimney and that Santa will know they’re there, and will even leave a note at home telling him so just in case. Mark and I have already worked out a schedule so that I’ll take Braedan to Christmas Eve events with my family and he’ll take him Christmas Day to his family. I’m sure the hospital does backflips to make the holidays as special as possible for their patients, so we’re not too worried about all that.
Now, the things we are worried about: My biggest concern right now is that we damage Austin’s body, mind and spirit with a veritable assault of treatment. Dialysis, we can deal with (aren’t I singing a different tune all of a sudden?). It’ll be a pain and will suck up a lot of our time, but it will indeed become routine and we’ll just manage. And radiation will be short: six days (weekends off) of his entire left side and six days of more targeted blasts on the area where the kidney currently sits. It’s adding high dose, highly toxic chemo on top of that that does me in. It just seems like too much to expect him to bear, both physically and psychologically, especially because we just don’t know if it’s necessary.
We have gone back and forth a thousand times trying to figure out the best course of action to ensure that he survives but to do him the least harm in the process. And no one, and I mean no one from among the best cancer minds in the country, has a clear answer. From the entire team at UH to the doctors at St. Jude’s to all the published research on relapse of Wilms’ tumor, there is no clear path for Austin’s all-too-singular case. We will absolutely do what needs to be done to save him, but we don’t want to do too much. Not just because it will make his life miserable (although I do consider that a relevant concern), but because chemo has real and dangerous side effects, in both the short term and especially in the long term on a child so young.
I think our plan (as of this moment, with the information we currently have in hand which is unlikely to change) is to remove the kidney, as I said, in the next few days. He would then get started on hemodialysis, which would last a minimum of two years. It might be more because it’s unclear when we would be able to officially consider Austin “cancer-free” and therefore eligible for transplant. He’d go three days a week for four hours in the afternoon, allowing him to continue at school (unless of course, we do add chemo to the plan, in which case he’d be out of school due to compromised immunity). Our current thought is that I would take him on Mondays, my mom on Wednesdays and Mark on Fridays, both to spice things up for Austin (I do get boring after a while) and so that I would only miss one school pick-up for Braedan (we would like to keep his life as close to normal as possible, too). And we would of course do our best to keep Austin as fully entertained during those four hours as possible — thank goodness this boy loves playdoh and legos.
The chemo question does not have an easy answer. We will await the pathology on the entire kidney, which will give us answers to so many questions. We still don’t know for certain that there aren’t other small tumors or pre-tumors lurking around in there waiting to surprise us. So once it’s removed, we plan to send it off to one of the companies that creates a drug-sensitivity profile. This is an early version of what will be the standard cancer treatment of the future, where they take the specific tumor cells and test them against various chemo agents to determine the exact type and amount of chemo needed to destroy those particular cells. This will take some time, maybe even months, but would prevent us from assaulting his body with huge amounts of toxic and potentially unnecessary drugs. That way, if we opt for chemo, we’ll know we’re giving him just what his body needs and no more.
We feel pretty good about this plan. It is not easy, of course, but we have begun to adjust and accept this as our reality. I am now able to think of it and not burst into tears. This is our life, and yeah, it sure as hell sucks sometimes, but we can do this. We will do this.
Oh, it’s never fucking enough. Somehow, every time, no matter what we do, no matter what Austin does, it is never fucking enough.
We got the pathology reports yesterday and, if you were to rank the four possible outcomes from best to worst, this is the third one down. Which, you know, is sort of like a failing grade.
It is a classic Wilms’ tumor, not the rhabdomyomatous kind he’s had in the past. And a classic, official recurrence at Stage 3, not the residual cancer we found in April. Which means, unless this one pathologist in Seattle comes back with a miraculously different interpretation in the next few days, we are going to go back inside and remove that remarkable kidney, the little kidney that could.
And then two years of dialysis. Along with radiation. And maybe (only maybe, my one thing to hope for) a year of high-dose chemotherapy using drugs considerably more toxic than we used the first time.
It’s all very ugly. I am focusing on the one tiny bright spot: that, as soon as he recovers from this now seemingly useless surgery, we will get to go home for Christmas. We’ll then return on the 26th or 27th for surgery. And then we will embark on something that will make everything we’ve been through thus far look like a walk in the park.
Fuck, fuck, fuck.