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We visited the hemodialysis unit at the hospital yesterday. It was both better and worse than I expected. I mean, it wasn’t horrific, not some miserable torture chamber with sickly sad faces peering out from under the blankets. But it was very subdued, much more so than the lively cancer areas. I know that sounds weird, but there is such a stark juxtaposition of good and bad, life and death, in the cancer clinic (and the inpatient floor). Everything is tinged by the possibility that all these lively seemingly happy children might die, but still, they squeeze a lot of living into the moments they have.
In the dialysis unit, there’s a quiet resignation, a more depressed atmosphere surrounding everything. It seems like everyone is plodding along, just getting by, doing the bare minimum of living. It’s a rather unpleasant place to spend the vast majority of our time for the next two years: no windows, one open corner with four or five kids asleep in their reclining chairs, no movement, no parents even. Really, not one child there had anyone with them, an absence you never see in the clinic.
But some things were easier to accept than I had imagined, like the skin graft Austin will get in his thigh, shown to us by a sweet (if tiny) fourteen year old patient. The surgeon basically connects a vein and an artery under the skin for better blood flow in and out, which is what gets hooked up to the machine. It takes about three weeks to heal so Austin would first have a catheter in his neck, similar to one he had after his December surgery which we never needed to use and eventually removed. But once the graft is healed, it’s expected to last a few years, doesn’t need any care at home and can get wet, three things that fall squarely in the “Plus” category.
We asked gazillions of questions, some of which the doctor said we’d deal with in another year-and-a-half (like all my transplant and donor questions). Austin can’t even have his name on “The List” until he’s actually eligible for transplant, which won’t be until April 2012 (two years from the end of treatment). This is because kids, especially one as young as he is, are moved to the top of the list so a kidney could become available at any moment and he’d have to be able to accept it. Of course, that only comes into play if he needs a kidney off the list and not from a designated donor. A few months before he’s cleared for transplant, they’ll start the series of tests and screenings on potential donors, usually starting with five or six before narrowing it down to the best match.
So many of you have said that you’d donate a kidney, which is really really lovely. I obviously can’t, having had diabetes for twenty-four years now (I might need one someday too!) but we will willingly consider any one else’s. Braedan also cannot, until he’s eighteen (or maybe sixteen if he’s a sibling), but a donated kidney only lasts ten to twenty years anyway so Braedan could give Austin his next kidney. The ideal kidney comes from a living relative between the ages of eighteen and thirty-five. My youngest brother Cory, a mere twenty-four years old and perfectly healthy, has offered his kidney already and has even requested that they complete the tests on him now so we’d know we had one and wouldn’t have to worry. (The doctors said no one will do that in case he gets hits by a bus so, Cory, look both ways before crossing the street!) But if his doesn’t pass the series of tissue matching tests, we could take a kidney from any healthy person (no diabetes, no hypertension, no smoking) up to age 50, with Austin’s blood type (AB-positive).
I know all these details make it sound like we’re definitely moving ahead with this. Some of you are probably thinking, “Wait a minute! Did I miss a posting?” No, you didn’t — we haven’t completely decided. But it’s likely going to happen anyway, so all this will indeed become relevant. We’re still waiting and thinking. We’re still going to try to have a little summer, in our minds and our lives. We expect to remove Austin’s PICC line late next week after another blood transfusion (his damaged kidney is spilling blood into his pee causing his hemoglobin to drop long after the effects of chemo should be out of his system). We think maybe we’ll do it after the Fourth of July, although I know that it’s gonna be hard to ever pick a good date; they’ll always be some reason to wait another week or month. Can there ever really be a “right time” to remove a child’s last remaining kidney?
Some moments it all seems manageable, others it seems totally overwhelming. Twenty-two months is a mighty long time. This last round has been less than six after all. And it has seemed like a mighty long time.
Today was Austin’s last day of school, an end to his first year of preschool that feels light years away from its beginning. I am so proud of him and he is so proud of himself, convinced that today’s ice cream party proves he has accomplished something great. And he has: he continued going, with impressive consistency, even when he’d already had radiation early the same morning or had just finished chemo the day before. He went on field trips when his low hemoglobin made him cold and stayed for Lunch Bunch when there was nothing good for me to pack him, except bland, low-sodium, low-phosphorous sandwiches and a Tums floating around in his lunch box.
But he did it. He made friends and he made art projects, he had movement class and he had library, he proudly guided us around the building to find his paintings for the annual evening Art Walk. He belonged to something, was a welcome and valued member of that class even when he was absent for weeks on end. Nobody ever forgot him when he was gone, thanks to the daily “We wish Austin well” chant led by his teachers. And when he returned, his little classmates treated him with kindness and also, thankfully, with complete normalcy. They never tiptoed around him, afraid of what he could or couldn’t do. To them, he was just another kid, without hair and with a sock covering up the tube on his arm, but just a kid nonetheless.
So he did it. One year down, nineteen to go.
Oh, and his chest CT was clear and there were no noted changes from his last ultrasound so all’s good. Bring on summer.
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!
I want to echo the words my mom expressed in her comment yesterday: Thank you all so much for your thoughtful consideration of our situation and for caring about us all so deeply. It is powerful and moving to know you’re out there rooting for us, hoping for us, feeling worried and saddened and relieved and happy on our behalf.
We both feel like a huge weight has been lifted, not only the weight of deciding but also (and especially) the weight of treatment. It’s not like we’re riding off into the sunset without a care in the world or anything. Obviously, we still have Monday, which is huge (I mean, how much would it suck if something showed up after all this agonizing? Ugh, I guess that’s a fear we’re gonna live with for a long long time.) But even if those tests come back clear, we’ll still be very closely watched, whether for cancer or for kidney failure. We have an awful lot of land mines yet to dodge before we can truly claim victory.
But we also know that there’s no point in making this choice if we’re not going to enjoy it. So we feel a little more relaxed, excited for short summer trips to Chautauqua, a sense of freedom and eventual swimming. Tonight the boys are sleeping over at their friends’ house together, a first for Austin, who is very pleased with himself. This sleepover, however, is only a consolation prize because they’d both been eagerly anticipating Breadan’s first sleepover at the hospital, scheduled for tonight, and were disappointed when we told them we weren’t going! Ha, I suppose that’s proof of what a good job the hospital does in making the experience seem fun.
Tomorrow, as the temperature climbs toward 80, Braedan will have his first lemonade stand, for which he’s been busily making posters. Stop by — we’re on Wellington, just north of Fairmount; he’ll probably start around 11. I wish I could report that he was raising money for some worthy cause but he really just wants enough to afford his own “spark scooter.” I guess that’s worthy in its own way.
So, we feel as if we’ve suddenly stumbled upon a summer, one that seemed elusive just a week ago. It is a huge gift and you know we are going to make the most of it. None of us knows what tomorrow will hold, my family least of all, but we will take these moments and we will fill them with as much love and laughter as we possible can.
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.
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?
Yesterday, I briefly mentioned today’s GFR and its “enormously consequential” results. Perhaps that got lost in my (self) motivational running analogy, but here’s the deal: Austin had another GFR today, the kidney function test we’ve been using to dose-adjust his chemo. As you may remember, his last results were a pretty dismal 34. If it dips below 15, he will begin thrice-weekly hemo-dialysis. This will necessitate another surgery, almost immediately, to place a dialysis catheter in his right sub-clavicle vein. It may also necessitate the removal of his remaining kidney.
Usually, when someone has chronic kidney disease and their kidney(s) fails, that non-working organ is just left inside them to shrink and wither away. In Austin’s case, because his kidney is the point of origin for all his cancer, we obviously don’t want to let it just sit in there if it’s not doing us any good. However, there is a possibility that he could regain some kidney function once the stress of chemo is removed. Sooooooo, you can see that we might find ourselves in another sticky dilemma: Do we keep a non-functioning potentially cancerous kidney inside his body in the hopes that it might work again in a few months or do we cut our losses and just remove the damn thing?
Ugh, not fun choices.
The other possible outcome from today’s test (results of which should come sometime tomorrow) is that he falls somewhere between 15 and 30, which means his kidney is still chugging along and would still work in the “outside world,” but that it’s not strong enough to filter out the chemo we’re about to pump through his bloodstream. Hmmmm, then what to do? Forgo chemo — and risk yet another relapse — or jump in and speed up something we hope never happens?
Again, not fun choices.
There may be a chance to do temporary dialysis just on the days he receives chemo, although that’s not standard protocol and not strongly recommended by the oncologists. They think we should stop trying to delay the inevitable and just get rid of it. We’re not ready to do that yet. I strongly believe that he and his body (and his family) need a break, more than two days away from the hospital at a time. And as long as that doesn’t cause obvious harm, we should do all we can to give him that. When does the risk outweigh the benefit? Can we ever really know? God, haven’t we been having this same conversation for the past six months?
Of the many possible results from today, there is only one that is any good: that his GFR has stayed the same, a nice steady number in the low 30s. Not great, but certainly good enough. It may not be the most realistic outcome, but at least we have something to wish for.
On July 31, 2007, our very first night on the pediatric oncology floor, our pediatrician came to visit with me and Mark to help prepare us for what lay ahead. He described the journey we were about to embark on as a marathon, one we had not trained for (except that we’d been training since the moment we became parents), one we didn’t sign up for, but one we had to run nonetheless.
I know a thing or two about running, having completed four full marathons and countless half marathons, including Cleveland’s half this morning. I know that no matter how well-trained you are, there is always something beyond your control, some seemingly small sore spot that can cripple your run. I know that no matter who you train with or start out with or chat with along the way, the race is yours alone and no one else can take a single step for you. I know that you have moments when you feel completely unprepared, cowed by the hill in front of you or the almost endless stretch of road still to come, when you wonder what you got yourself into and how you’ll ever get yourself out of it. And I know you have moments when you feel strong, on a slight downhill, wind at your back, like you can fly, like you can do anything.
Without question, this cancer journey has been our marathon. There’ve been twists and turns we never anticipated, there have been steady even stretches where we get into such a groove we almost forget what we’re up against. There’ve been steep uphills where continuing seemed impossible and bursts of speed to push us forward. And there’ve been fans.
Race fans may not know their impact (and judging by today’s strangely quiet crowds, they may not know how much they’re needed). But fans are a completely necessary component of a long race. Perfect strangers calling out your name and urging you onward, giving you strength and hope and courage, make a huge difference. As do the “fans” we’ve acquired along this journey. You may at times watch silently from the sidelines but we see you there and we know that when you’re really needed, you’ll speak up and cheer us on, reminding us of the strength we already have inside.
This race of ours is certainly not over. We’re due for five days of chemo starting this Thursday, pending the enormously consequential results of tomorrow’s GFR (kidney function test). And then three more rounds of chemo after that, with an estimated finish in early August. We’re more than halfway, which is a huge accomplishment, but just like in full marathons, that last half is always harder than you think.
We’re a little beat down, muscles sore and tired from overuse, chasing an ever-moving finish line. But we’ve been training for years now and we’ve learned an awful lot, and oh I do love to run, so we set our sights a little farther down the road and we dig a little deeper and we let the cheers of our fans lift us forward. And we know that we will finish strong.
Oh, and in case you’re wondering: 1h52m. Strong enough.