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You, my trusted and loyal community of readers, have helped me work my way through several major decisions over the past year. First, there was the should-we-or-shouldn’t-we-continue-with-chemo conundrum. Then, of course, came the awful choice between removing Austin’s kidney in a preemptive strike against the possibility of cancer returning thus subjecting him (and all of us) to two years of hemodialysis followed by organ transplant versus trusting that surgery, chemo and radiation had done their job in wiping cancer out of his body. Then there were the smaller decisions about my book and how to incorporate the third section and what to title it. And who can forget the still-unresolved issue of when to send Austin to kindergarten?
But suddenly I have a new decision to ponder and, boy, is it a doozy.
Next year is the tenth anniversary of the St. Baldrick’s event in Cleveland and to celebrate, the planners are trying to enlist ten moms.
As in, ten moms to shave their heads.
Oh man, it makes me nervous to even think about! I want to do it. I mean, I think I do. At least right now, when it’s nothing but an idea, tucked safely eleven months into the future. I’m not worried about how I’d feel that very day. I’ve seen women do it, fourteen of them last week, and they all look strikingly beautiful and very very proud of themselves. (See professional photos from the event here; my family is between 83 and 120.) But the next day or week or month, when they have fuzz sprouting from their heads and have to attend someone’s wedding or a business meeting or who knows what . . . that’s the stuff I worry about.
I know, it’s only hair and it grows back. But it’s hair and it grows back pretty slowly, especially when it’s as long as mine is now. For the past few days, I’ve suddenly found myself admiring my hair, which is not something I’m used to doing. I’ll catch a glimpse of myself in the mirror and think, uncharacteristically, “Wow, my hair looks so full and shiny . . . do I really want to shave it all off?” Classic case of the grass being greener, I think.
It would make quite a statement though to have ten mothers of cancer patients stand up their together and make that sacrifice on behalf of their children. Ten years, ten moms, ten thousand dollars (each!). That would be my motto.
I know how I am. I know I’ll have moments after the fact when I’m in a major awkward stage and feeling rather ugly, when I would question my decision. But I also know that if ten moms are going to sit in AJ Rocco’s next March and shave their heads, there’s no way I’m not going to be one of them.
OK, this will be my final public mulling over when to send Austin to kindergarten. For a little while at least!
My big issue right now is that I feel like sending him this coming fall is the RIGHT thing to do. Yes, he would still be only four for the first few weeks, but the official deadline is September 30 and he’ll be five by September 30. So unless I have a very good reason, an actual developmental or physical delay, then he should go. (And, amazingly, he doesn’t have any documented or even suspected physical or developmental delays.)
Somebody has to be the youngest kid in the class, so why not Austin? I’m not certain that being the youngest is always a disadvantage anyway. I know plenty of people, both my age and currently in school, who didn’t mind or don’t mind being in that position. In fact, Braedan had a neighbor friend over the other day who is the youngest boy in his fourth grade class, yet another late September birthday. I asked him about it and he said he truly doesn’t care. He said he’s smaller than most kids (but not all) and that some who are even younger are bigger so that’s irrelevant. He does extremely well academically and has no problem fitting in with his peers. He said it hasn’t once been an issue for him thus far in his schooling.
When I spoke with his mom, she said that, back when she was making the decision to send him, a concerned friend said, “But don’t you want him to be a leader?” She said, sure she did, but that he was going to be a leader no matter what. He is a leader. Personality does that, not age. Heck, Braedan could have started kindergarten when he was four and it would have been no big deal. Not that he’s some super genius, but he’s always been emotionally mature and quick to make friends and feel at ease in new situations and he would have done just fine.
So anyway, what I’m saying is that Austin being younger than his classmates by eleven months or ten months or nine months is not a worry for me. So what? There’s automatically going to be a range of kids in a class, some with birthdays up to a year behind the others. What does worry me is the other kids who get held back, the June and July and August kids (boys especially) who would be several months beyond six when they started. It’s that awful “everybody’s doing it” problem. I don’t want to hold him back, but I’m afraid I might because everybody’s doing it. I sort of feel like we get screwed by the people who (in my opinion) should send their kids on time but don’t.
Now I know a lot of you have shared your own experiences with me, both here and in private emails, and I don’t want to offend anyone by having asked your opinion and then saying I think what you did is wrong. And I know that everyone thought carefully about their decisions and of course has every right to make whichever choice they want. But maybe that’s my real issue — maybe I wish we didn’t have the choice. If there was one national law with one national deadline and you simply had to send your kid, then this wouldn’t be an issue for any of us.
But of course it is. You can tell that I would really like to send him, but I will continue to think this over and discuss it with Mark and Austin’s teachers and others. And then, when the time comes, we’ll make the best choice we can and, once we’ve decided, we won’t second guess ourselves and will just live with the consequences. Like we do with all the other decisions we’ve had to make.
Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.
Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene. We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months. And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.
The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery. I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.
But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!
That is no way to think.
And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”
No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.
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.
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!
People keep telling me to go with my gut but all day long my gut’s been telling me to stop and then tonight, it switched over and said continue. Aaaahhhhh.
Here’s some more info, in response to some of your questions and comments (thank you for those) and to help me further flesh this thing out:
If we stop, we would certainly continue to monitor Austin. As his oncologist said today, “We wouldn’t just wish you luck and send you on your way.” He’d still have frequent, probably weekly, labwork to watch the kidney function, plus abdominal ultrasounds and chest CTs to check for relapse. He would not be able to do either MRIs or abdominal CT scans due to his diminished kidney function. That gives us pause because abdominal CTs seem more accurate than ultrasounds but if we have the right person doing them (since ultrasounds are more user-sensitive than CTs), they’re still enormously useful. In fact, we followed his “shadow” in the fall on ultrasound for many months (and some people argue that this is a better approach anyway because it reduces the radiation risk). So we’d still be watching, at least every three months until we felt that things were holding steady enough to move to six.
Austin is scheduled to have an ultrasound on Monday which could help us finalize this decision since if there’s something suspicious or different from the last time, we’d obviously opt to move forward. But his full scans, including an abdominal MRI, were clear in the end of March so we expect and hope that hasn’t changed.
If the cancer were to return again, we would remove the kidney then and there without another thought. But it might be too late. This cancer is tough enough to “cure” the second time around; the third time is almost definitely fatal. So, you see, this decision is a heavy one. Here’s what the study shows us (and remember, there are no kids like Austin in this damn study — every child with bilateral Wilms was removed at the onset and none of the kids had Austin’s rhabdomyomatous variation) but it shows that out of 60 children with relapsed Wilms who went through this protocol (having anywhere from less than one to the full six maintenance cycles), 33 of them had a second relapse and, of those, 27 died.
This lovely bit of information (which is shockingly new to you but sadly familiar to us) could actually push us in either direction. It could make us say, “Holy shit, this is serious stuff. We need to do everything possible to not let it come back, no matter how miserable it may be.” But then there’s another side of me that says, “Wait a minute, here I am being told that my child has at best a fifty percent chance of living, at best. Shouldn’t I do everything in my power to make sure his life, however short, is good? Or great, even? That he doesn’t spend half of his piddly little life in a hospital, hooked to machines, on the wrong side of the window?”
It’s a crazy way to think. It’s unnatural for me to write these words or think these thoughts and yet, this is our reality. This is how we have to think. We have to know that if we choose to stop, he might die. But, fuck, he might die anyway. We might remove his kidney and keep pumping him full of chemo for week after week and cycle after cycle and he might die anyway!
Because here is what the study does not tell us, anywhere, ever: what difference additional cycles make. It never ever mentions how the 12 kids who did one cycle fared compared to the 14 who did two compared to the 2 who did five. They never tell us! So how are we supposed to know if two is actually better than one? Or if two is even enough — what if we have to do three or four or six to make a true statistical difference? (And then how many of those kids end up dying from treatment related complications or from leukemia ten years later??) Our oncologist has requested that information and never received it but I’m asking on my own, sending random emails to the study authors to see if we can glean a little insight into what seems to be the most important factor.
And then there’s the issue of how long the kidney will last if we do stop. It could, of course, fail next month. And then we’d be on dialysis anyway. Or it could bounce back, free from its recent stress, regain some function and keep on keepin’ on. Remember, it only needs to make it two years before he can be transplanted, as long as he remains cancer-free. So even if it chugs along for just another six months or year, it would still get us that much closer to transplant.
Our oncologist has said he’ll support whatever decision we make. He recommends continuing but he also understands and respects the other side. He told me today that if he believed we were putting our child at risk or were making a mistake, he would tell us. But he doesn’t think that. He sees the value of either choice. Which says a lot because, an an oncologist, his job is solely to rid my child’s body of its cancer.
Our job is so much more.
So we go back and forth, back and forth, completely certain that one choice is right until a half hour later when suddenly the polar opposite seems the wisest option.
After twenty-four hours of research and discussions and lots of mulling, plus a quick meeting with our oncologist, we’ve narrowed down our decision to two options: All or Nothing. Either we remove the kidney and finish the next twelve weeks or we stop.
First of all, temporary dialysis is not an option. As Mark and I figured out on our own last night and then had confirmed by the docs today, there would be no way for the body to save its waste fluids for a dialysis catheter if a working kidney existed. We also learned that we can indeed do this next scheduled chemo with a GFR of 27, plus the one scheduled three weeks after that, but not the two that follow. And in the cancer world, there is no point in doing half a protocol — the strength is in the combination of drugs. Again, it’s all or nothing. So if we decide to move ahead with the chemo he was supposed to start tomorrow, we would essentially be committing to removing the kidney within six weeks’ time. “Essentially” nothing, we would be committing to removing the kidney within the next six weeks.
Or we stop. Right now, today, done with treatment. We assume we’ve done enough, that if chemo’s gonna work, it’s already worked. That our decision back in December to do the most aggressive radiation would have taken care of any potential spilled cells. That oncologists are so prone to over-treating, especially with children, that they never risk treating just the right amount. It’s the old hammer versus chisel analogy: We could probably treat this cancer with a chisel but we just don’t know so we use a hammer instead . . . and cause all sorts of collateral damage. We could figure we’ve done enough — we surgically removed the tumor, we blasted the entire area with radiation, we further blasted it with chemo, and that’s that. We could hold onto that kidney and hold our breath.
It is the choice between a bad thing definitely happening and a terrible thing maybe happening.
Some of you may be reading along and thinking, “Wow, how could they ever risk another relapse? Why not avoid it at all costs?” Well, I’ve thought that too in the past day but, like I said, I’m vacillating and after learning a little more about dialysis and transplant, I’m thinking that too should be avoided at all costs. It’s one thing to hear from the doctors who say things like, “Kids do well on dialysis” and another thing entirely to hear from the parents who say it’s worse than cancer treatment. I’ve reached out to some parents I “know” (in the virtual sense) and asked about their experiences with dialysis and transplant and what I’ve heard isn’t encouraging.
Worse than cancer treatment. (And this is from people who truly know, who’ve done both.) Worse than chemo and radiation. Harder on the child, harder on the parent, harder on the family.
I’ve heard about people feeling tired and letharigic all the time, even people (like Austin) who didn’t feel that way with chemo. I’ve heard about severe fluid restrictions and rigid diets, much much harder than the seriously modified renal diet we’re currently following. About kids taking forty-plus oral meds a day, when we’re forced to cajole and trick and bribe and threaten to get Austin to take a mere four or five right now. About kids with stunted growth because dialysis leeches the protein out of their system, starving their muscles of all their fuel.
I look at him today and he’s fine. Fine. A totally normal little boy, who is still growing and still playing and still eating and still peeing, and I wonder how I could subject him to something so horrible. How could I willingly take away something that is still working, maybe not perfectly, but still working to give him something I don’t know he needs? Something that, in addition to possible good, can also give him secondary leukemia or leave him deaf.
It is not a good place to be, not a decision any parent should have to make. We are both going back and forth, back and forth, every few minutes taking a gut check: “Which way are you leaning now, honey?” We’re good at communicating, me and Mark, we trust and respect each other completely. And I think we’ll come to a decision together so we can move forward together. We’ve postponed tomorrow’s chemo until at least Monday so we’ll have a little more time (so if you’re scheduled for a playdate or a dinner, you’re off the hook for the time being). Of course, neither of us is sure what will eventually make one decision stick over the other. I welcome your input, even if it’s based on nothing more than intuition. I won’t feel pressured to follow any one person’s advice and I’m certainly not asking anyone to make this decision for us, but I find it helpful to hear all sides and to consider all perspectives.
Sometimes I feel as if I’m standing outside myself, watching my life like it’s some tear-jerking episode on a family drama, like it couldn’t actually be happening to me. Of course, such a dilemma would probably be resolved within a television hour. Ours is more like that frustrating season finale where you’re left hanging because it may be years before we know if we’ve made the right decision. If there even is a right decision.
Maybe the right decision is simply whichever one we make.
Well, now, that puts us between a rock and a hard place, doesn’t it?