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As we’ve been leaning this way and that over the past few days, swaying back and forth, we’ve acknowledged, with a degree of defeat, that there is no one thing that’s going to suddenly appear that will make this decision any easier.
But we were wrong.
This afternoon, as I sat in a reclining chair (just relaxing) down at the hospital while Austin, hooked to an eight-hour blood transfusion, slept in my arms, I held my breath and opened a return email from the lead author of the study protocol we’ve been following. We’ve never had any contact with this doctor, the head of Pediatric Oncology at Children’s Hospital-Los Angeles, whose name I simply typed into Google to search for an email address. His response, which I was quite frankly surprised to receive at all, said that there is NO STATISTICAL BENEFIT for children who did more than one maintenance cycle of chemotherapy. Here are his words, copied from my email: “Due to the small numbers, we were unable to detect any statistical difference or advantage for those patients receiving > 1 maintenance cycle.”
Well. That pretty much does it. Barring anything suspicious on Monday’s abdominal ultrasound and chest CT, that pretty much does it. There are so many known disadvantages to carrying on and no known advantages. How could we not choose to stop? It would almost be crazy to keep going.
We’ve been leaning in this direction, as I think you could tell, wanting to stop. But unsure whether we wanted to stop just because continuing would be so horrible or because it was really the right thing to do. Every time we check in with each other, last thing before drifting off to sleep and first thing upon waking in the morning: “Which way you leanin’ now, honey?” our answer is, “Weeeeellll, I sort of think we should stop, buuuuuuttttt . . .”
And now, we can feel like we are making the best decision given the information we have. It is not a victory, not a free pass to the future. We still face every unknown we faced yesterday: His kidney could fail anyway, his cancer could return and be even harder to treat. But at least, we have some peace in knowing we are not skimping out, we are not cutting loose early for selfish reasons.
The big question I assume most of you are asking, because I’ve asked it myself, is: Why does anyone do more than one cycle if there’s no detectable benefit? I don’t have a scientific answer for that but I think it’s because the researchers were trying to find that detectable benefit. They were hoping that four cycles would push the survival rate up to 60% and five cycles would push it up to 65%. But that didn’t happen. Even with extra weeks and months of chemo, the best number they could reach was 50%.
Now that shouldn’t make us feel super confident moving forward, and trust me, it doesn’t, but if this cancer returns, well, it might have returned anyway. I mean, if chemo is gonna work, it should have worked, right?
We had dinner with my parents the other night and my mom came armed with scrap paper charts to list out the pros and cons of each option. My dad had already made up his mind (stop), but the rest of us were still hemming and hawing. Before we left, my mom (still undecided) landed on an important point: Stopping is the one chance, the only chance, we have at a huge victory, at (and you know she didn’t use this word and I can’t believe I’m about to either, but here goes) at a miracle. Stopping is the only way we can ever look back and say, “Wow, we really, really did it. And we didn’t have to sacrifice every last piece of ourselves. We beat that damn thing and we’re still intact.”
We might be able to do both: we might be able to remain intact and still win. And that is what we are going to try to do.
The death of your child follows you everywhere you go, hovering in your blindspot. That’s how Lorrie Moore describes parenting a child with cancer in People Like That Are The Only People Here. In your blindspot: just out of reach, never in focus, but there.
So you move along, heading for that sacred destination (cure, survival) and on good days, you get into a groove, lulled into a feeling of comfort, of certainty even (certain that this child will be okay, this child will escape the worst fate). But then, for whatever reason, you reposition yourself and glance over your shoulder and there it is.
Just lingering, hovering. If you try to really look it in the face, try to grab it and shake it and tell it to leave you the hell alone, it would disappear. It’s unreachable, ungrabbable. But there.
Wilms’ tumor is one of the big success stories of pediatric cancer. But that’s because it’s relatively easy to beat the first time around. Once it makes it past that first round, once it survives the initial onslaught . . . well, then it’s not so easy to beat.
We don’t put much weight in survival statistics these days. Of course, there are no accurate numbers for a kid like Austin; he doesn’t fall neatly into any pre-existing category. When we pore over the research with his doctors, we inevitably say, “Well, he’s a little bit like this and a little bit like that,” and “Oh, this case looks like his except for (insert major event here).” So we really have no guidepost, no reliable map to follow.
But if we were forced to give a number, if we had to choose some random survival statistic, it would surely fall below the 50% mark. Which is partly why we don’t put much weight in survival statistics these days. Austin has always fallen outside of the range of normal. Since Day One, nothing about his cancer has been textbook. So we buck up and figure this won’t be textbook either; he’ll just continue beating the odds because that’s how he does it.
The treatment plan we’re following is a full-court press. We’re going whole hog, guns blazing, no holds barred, enter whatever metaphor you’d like to say we’re doing every damn thing we can. When I said in an earlier post that this plan “just might work,” I was wrong. It must work, it has to work.
It’s all we’ve got.
I got a message the other day forwarded from Betsy Kling that included an email she received from a viewer after we were on the news. It was from a woman who had Wilms’ tumor as a baby, diagnosed at 11 months just like Austin, who had just celebrated her 53rd cancer-free year! She was writing to say how her ears had perked up at the mention of Wilms’ tumor and how happy she was to see Austin looking so healthy and fine.
Now this woman had Wilms’ in just one kidney, as is the much more common and easier-to-treat type of this cancer. It is in fact referred to as the “pediatric cancer of choice” because it has such high survival rates (isn’t that just the most awful way to describe it . . . who on earth chooses pediatric cancer??). But Wilms’ tumor treatment has been a huge success for cancer researchers and doctors because treatment has gotten more and more effective. But, god, fifty-three years ago? I don’t imagine it was the cancer of choice fifty-three years ago! Surely they hadn’t yet managed to treat in a way that was either consistently successful or that would prevent the onset of future secondary cancers or diseases. So, really, this woman is a huge success story in and of herself.
And it sure is nice to hear about those who beat the odds. Especially when they’re mentioned in connection to my Austin!
If you were a fly on the wall in our house three weeks ago and then again today, you’d have trouble noticing anything different. Two little boys playing, tussling over toys, begging for jelly beans (well, there are definitely more jelly beans than there were three weeks ago!), two parents watching over them, trying hard to balance the easy fun with important life lessons. You may notice the older son whining a bit more and the younger one struggling to sleep at night. You may notice the parents looking a little more pensive or a little more tired (see above statement re younger son struggling to sleep at night). But you would never ever be able to guess the emotional turmoil, the seismic shifts in perspective, that had taken place in the course of fifteen days.
Austin & Braedan three weeks ago
Braedan & Austin yesterday
The good news right now is that the doctors seem to be considering this episode something other than a recurrence. “Residual tumor” I think is the way to describe it. It can be quite confusing for those of us not trained in oncology but it seems that some teeny tiny microscopic cancer cells were left inside Austin’s belly following the October 07 surgery. Now remember, that surgery removed four tumors and 40% of his kidney. And the surgeons were trying very hard to remove as little of the kidney as possible, so they may have left behind a few (invisible) cancer cells here or there. Those little cells would have then been treated by chemo for almost five months (which is why the tumor they removed last week looked like it had been through treatment) and then, ever so slowly, they would have grown (because Austin’s type of Wilms’ was mostly resistant to chemo) from teeny tiny almost non-existent cells to a one-by-two-centimeter tumor that finally showed up on a CT scan one year later.
This little fact (whether or not this is actually an official recurrence) is enormously consequential in terms of Austin’s longterm prognosis. The survival statistics for Wilms’ tumor recurrences are horrific, so awful that Mark and I only discussed them in hushed tones, as if to speak them aloud would have made them more true. I certainly couldn’t bring myself to type them here — it was all sad enough to begin with. But now that we feel a little safer, here they are:
Depending on which piece of research you’re reading and which category of Wilms’ you’re talking about, the five-year survival rates after recurrence range from 23% to 43%. Twenty-three percent. Or the good stuff, the research that we actually felt optimistic reading: forty-three percent! Basically, for every 100 kids with a recurrence of Wilms’ tumor, three-quarters of them die.
Not acceptable, not even close.
Imagine, god, just imagine if someone offered your child a sippy cup of juice and there was a 67% chance that it was instead a deadly poison. Or if your pediatrician suggested a new vaccine that kills kids 57% of the time. Right. You’d run screaming for the door. No parent should have to look at numbers like that in regards to their child’s life. That is not right.
But that’s where we were two weeks ago, that is the thought we lay down with each night, often with Austin asleep between us. That is the thought we carried with us through each day, trying to keep things as normal as possible, trying not to let Austin get away with hogging all the toys, trying not to yell at Braedan if he so much as looked sideways at his suddenly fragile little brother. There was a sense of desperation — how long will it take? How long do we have? But there was also a slow and reluctant acceptance. We simply had to face reality, we could not go on with our heads in the clouds refusing to see what lay before us. We were both, for the very first time since all this cancer business began, we were both starting to accept the idea, the possibility, the probability, that we might live our lives without him.
And now, suddenly, remarkably, we find ourselves almost back where we were three weeks ago. A little blip, a slight detour on our cancer journey. Austin is recovering, there is no treatment plan looming ahead of us (and cancer without cancer treatment doesn’t seem so bad), the official stats should be back in the 80% range. And life goes on. The boys are none the wiser: Austin is sore and Braedan hyper, but a few weeks from now, all will be well again in their world.
But Mark and I know. Mark and I will live with that feeling for a long time. Our time with him feels a little more precious, our hold on him a little more tenuous, nothing is certain, there are no guarantees.
That fly on the wall might not be able to see it, but we are changed.
