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I know that every time this happens, there are a zillion questions running through everyone’s minds that send you all scrambling through the blog archives and even to other online sources. “But wait, … what about that time three years ago when …?” I noticed on my Stats page yesterday that someone was directed to my blog after searching the words “3rd relapse Wilms cancer.” At first, I thought, “Huh, how ironic,” but then it occurred to me that it might have been one of you out there looking for reassuring information.
Well, you won’t get it. I just typed the same words into my search engine to see what would appear and it’s all old articles I’ve read before, some many times over, one from 1987 with (hopefully!) outdated data. The survival stats according to those studies fall in the 30 to 40% range … and that’s for the first relapse. Nobody really mentions another relapse and nobody seems to be talking about bilateral Wilms or what was once rhabdomyomatous Wilms or any of the other variations that make Austin’s case so ridiculously one of a kind. So, we’re just going to ignore all those and go with what we know about this specific child at this particular moment.
We know that, for all intents and purposes, Austin is well. His labs are steady, which means his body is not under assault and whatever may be in there right now isn’t causing any measurable harm. And he certainly, without a doubt in anyone’s mind, seems well. And that is worth something, both psychologically for all of us but also diagnostically.
We also know that the “thing” they’re seeing on the ultrasound is 1.4 centimeters in size and of an ill-defined shape. The radiologist went back to the two previous scans and, while he can’t rule out with 100% accuracy that it wasn’t there before, he did not and can not see it on any images prior to Monday’s. The official report labels it “new,” which is always bad, but they also say it’s “nonspecific,” and that an “underlying lesion cannot be excluded.” In other words, “We see something in here we haven’t seen before. We can’t tell what it is but we can’t rule out that it’s not a tumor.” Further imagining is recommended.
That’s all we’ve got. But we also have history. We’ve been down this road before, where we see something and can’t define it. First, in December 2008, we began to watch a “something” on his scans which we then biopsied in March 2009 and discovered was cancer. That was removed in April 2009 and turned out to be “old cancer,” all of which coincided with the launch of this blog. Then in October of 2009, we again began to watch another “something.” This was the one that we followed, on pins and needles, throughout that fall, finally deciding to ignore in November, before it doubled in size (“You will not ignore me,” it seemed to be saying) and turned out to be relapsed cancer in December. (Consider yourself warned before you go back and read all those linked posts because, oh my, they contain a lot of drama and a lot more f-bombs.)
Those are really the only “somethings” we’ve watched, except for the “something” in his liver (good god, what a stupid word, something something something). That something did appear on Monday’s ultrasound, unchanged in almost two years. The doctors have contented themselves with the fact that this thing never grows or moves, but will be happy to get a better look at it during the MRI. I consider that thing somewhat different because, 1) it’s in the liver, not the kidney and 2) it’s been there for a good long time without doing any harm.
So, that’s what we have and that’s where we are. I personally feel better today. Not for any specific reason, but just because it’s less raw than it was twenty-four hours ago. We carry on as we always have, because, you know, that’s what we do. Braedan had baseball last night and Austin swung across the monkey bars nearly the whole time. Then we took the troops to Sweetie Fry for treats and didn’t get to bed until well past 9. The boys both know that there is something there that might be cancer, but neither has much wanted to talk about it. Austin did say the first night, “But I don’t want to have cancer again,” and, oh, if it were only as simple as what we want and don’t want. Since then he tells me to “Shut up” with a slight smirk on his face every time I mention it, so I’m backing off. Braedan has sporadic questions but will only talk about it on his own terms and his own timing and otherwise sticks his nose in a book and carefully ignores the conversations going on around him. Oh, the child psychology of all this is sadly fascinating.
We have read and listened to all of your very lovely messages and, as always, they bring us strength and comfort. I am not in the mood for returning all your calls and will simply see and speak to each of you as time goes on. We do deeply appreciate the small acts of kindness directed our way (the boys were especially thrilled with the surprise delivery of Dunkin’ Donuts this morning, Ruppes!). And it did not go unnoticed that all the kids at Austin’s preschool wore their St Baldrick’s shirts yesterday. As I said before, the many offers will be accepted over time, especially if we end up with two-plus years of dialysis.
Oh, that brings up another joyless question I’ve heard too many times in the past three days: If he does indeed lose this kidney, when could he received a transplant? Well, if this is truly cancer, then the “two-years cancer-free” clock is reset. And it wouldn’t start ticking down until he was completely finished with whatever treatment (chemo or radiation) he might first require. So we’d likely be looking at two-and-a-half years of every other day dialysis. But you know I can’t quite bear to think of that right now. For those of you who have made the ultimate offer — one of your kidneys — I say (I mean, I shout while jumping up and down), “Yes, yes, thank you very much,” but we can’t even begin the pre-match testing until we’re much much closer to transplant. So just stay healthy and don’t disappear from the online universe. I will be calling!
Two years ago, on May 3, 2010, Austin and I had an unexpected overnight at the hospital due to high blood pressure, described here in a post aptly titled The Wrong Side of the Window. We were stuck in that god-awful limbo between choosing to remove his kidney and continue with chemo or venturing blindly into the post-treatment world never certain when the kidney would fail or when the cancer would return.
And then, three days later, I wrote this one, (also aptly titled) Never-Ending. Read it because, well, it definitely captures the mindset I was in back then: the fear, the utter exhaustion and frustration and resignation I felt. What we believed was the inevitability of kidney failure and dialysis looming over us, the desperate feeling I got as I looked toward the future, Austin’s future, our future. It just didn’t seem bright.
Yet, my god, it has been so very bright. These past two years have been wonderful, “normal,” right. He has had the chance to just be — which is all I ever wanted for him — to just be himself and be left alone by doctors, to live his life unencumbered by the burdens of disease and hospitals. And we’ve all had that chance: Braedan to be a regular kid, to fight with his little brother without worrying that he’s fragile, to be happy or sad or proud or scared or whatever, and not have any of it tinged by being the older sibling to someone we feared might die. Mark and I have had the chance to just be, be the parents we were meant to be (which is not to say that those parents are anything close to perfect — in fact, we were much more thoughtful and attentive parents when Austin was sick, but anyway …). But just to be normal parents who get annoyed with their kids and yell sometimes when they shouldn’t — and to feel lucky for that. We’re lucky for everything we’ve had in these past two years, every normal good or bad moment.
We read Sylvester and The Magic Pebble tonight and the last lines struck me, as they always do. It’s after Sylvester has been released from the rock and is reunited with his parents who lived, for almost a year, with the belief their son was dead: “When they had eventually calmed down a bit, and had gotten home, Mr. Duncan put the magic pebble in an iron safe. Some day they might want to use it, but really, for now, what more could they wish for? They all had all that they’d ever wanted.”
On the eve of tomorrow, we still have things to wish for (I sure would not be locking any kind of magic pebble in any kind of safe just yet). But it’s true to say that we all have all that we’ve ever wanted. And come what may, it’s been a damn good two years.
Austin had an appointment with his nephrologist today. That’s the kidney doctor for those of you not in the know. While we don’t have any official results from his labs yet, she did say that his estimated GFR is now about 60. If you remember back to last spring when we were trying to decide whether or not to continue chemo, our dilemma was driven in large part by an abysmal GFR of 27. Anything below 30 makes a patient eligible for dialysis and a GFR below 15 indicates that it’s time for transplant.
So, while 60 certainly isn’t normal, it’s pretty darn good. In terms of predicting what’s still to come … well, that’s a dangerous game for anyone and an extremely inaccurate one when it comes to Austin, who sits all alone is his own little category of patients (or patient, singular, since he’s the only one with quite his history of procedures and risk factors). But she did say that this little kidney could last and last … three more years, five more years, ten more years.
We are back where we were the first time Austin finished cancer treatment, when we assumed his kidney would keep chugging along until puberty when rapid growth and muscle development would put such stress on the little organ that it would stop working and finally need to be replaced. That scenario was thrown completely out the window during his relapse, as the kidney seemed to plunge deeper and deeper into distress, caused by the relentless onslaught of surgery, radiation and chemo. A year ago, we were hoping for a kidney that would work for weeks and months, not years and years.
Funny how life’s victories and traumas are all of a relative nature. If I’d had a perfectly healthy son who suddenly experienced kidney failure and needed a transplant at age 15, I’d be devastated. But for us, considering where we’ve been and all we’ve had to endure and all we’ve almost had to endure, kidney failure in adolescence seems like quite a luxury. Quite a luxury indeed.
Thank you for the many thoughtful comments. A few responses:
I have certainly talked this over with his preschool teacher, but that has still left me hovering between my two choices. She thinks that he is ready both academically and socially for kindergarten. Her concern is the much less predictable “What about when he’s 10 or 12 or 16?” I know he’d be fine academically, at least in the early grades (after that, how can any of us predict?). He’s very bright and, because of watching Breadan master reading, has excellent pre-literacy skills.
His social interactions are another matter entirely. How he acts around others when I’m present is drastically different from how he acts when I’m not present. If I’m there, he’s mommy’s little baby, wanting to be held and hanging on to me as I leave. On the days that I parent help, he refuses to talk to anyone, teacher or classmates. But when he’s on his own, without me, he’s just a normal little kid. Somewhat on the quiet side but he definitely has friends and participates in the group activities in an acceptable way.
So, in that regard, I almost think it would be good for him to start school on time (note I did not say “early,” because next year would not be early) because it would allow him to be his “big” self more often. I wouldn’t be around as much and he wouldn’t sink back into me. But of course (flipside), if he really needs that babying time from me, then there’s no reason I shouldn’t give it to him for as long as I can.
My dad said just yesterday, “Give this child every advantage you possibly can, he deserves it.” And there’s no doubt that if I really believed he would suffer by being the youngest, I would hold him back. But I don’t really believe that he’ll suffer — although I know he might suffer — hence my dilemma.
Mark also thinks we should wait. “Why not?” is his reason. And I do actually have an answer for that. In our district, there is an enormous acheivement gap between the lower income students and the higher income students, one that exists prior to school ever starting. Nearly half of the children in Braedan’s school qualify for free or reduced lunch based on national poverty standards. For those families, you send your child as soon as they’re able, late birthday or not. And I don’t mean to imply that these families use school as free, all-day childcare. But it IS free, all-day, high-quality education and why would they not take advantage of that as soon as possible? Austin will start school with many advantages over (some of) his classmates: he’s been read to every day of his life, he’s been exposed to a great many things, ideas and places, he attends a high quality preschool. I’m not entirely comfortable adding yet another advantage on top of that: an extra year of physical and emotional development. Not that I want to “dumb it down,” but it just seems to create unnecessary inequality.
Now many people have said to me that I shouldn’t sacrifice my own child for the sake of the common good. And again, I wouldn’t do it if I believed he was being sacrificed. But I also think that if everyone puts their own personal interests ahead of the common good, then there is no common good!
Hmmmmm, all this being said, I’ve already registered him in the pre-K class at his preschool for next year. And I will also register him for kindergarten next month, just to give us a little more time to decide. He is not much help in the matter — he claims he wants to go when one particular friend, seven months his senior, goes. But that friend’s parents have yet to decide whether he’ll attend our local public school or another parochial school where they attend church, so that certainly shouldn’t be our deciding factor.
And in terms of Austin’s health, there are reasons that go both ways there too. Obviously, if he were to be on dialysis in this next year, I’d keep him preschool so he could do that in the morning and head to the hospital in the afternoon. No point in enrolling him in kindergarten just to pull him out three days a week. But that doesn’t seem to be a pressing issue right now and hopefully won’t become one (knock on wood). We still expect that he’ll need a transplant at some point in the future but most parents schedule those over summer break (really, like instead of two weeks at camp). And if he’s older, he can easily see a hospital tutor to keep him on grade level. So I can’t make a decision based on such unknowns.
And then there’s my personal motivation, which in truth is only a tiny little piece of this. I remember with incredible clarity sitting in the hospital cafeteria with Mark, picking at my breakfast, two weeks before Austin’s first birthday, while he was beginning an eight-hour surgery. And Mark said to me, as gently as he possibly could, in an effort to prepare me for what might lie ahead (not that you can ever be prepared for such a thing), “Honey, you have to wrap your head around the idea that this child will probably not make it to kindergarten.”
I will not rush it for that reason, I promise, but come hell or high water, this child is making it to kindergarten.
There were a lot of other doctors’ appointments that took place on Thursday and Friday . . . or didn’t take place. The vein mapping for placement of a dialysis catheter was postponed. It had been double booked with the chest CT, which obviously took precedence especially due to the concern with the liver. The vein mapping, as I explained last week, is for something we hope is way off in the future and actually something we hope never ever comes. So that one’ll just have to be rescheduled (or not).
Then on Friday, Mark took Austin to have his stitches removed. Remember how the hand surgeon had been upset with the type of stitches the ER used? Well, with good reason. He removed the three from Austin’s palm (the least sensitive and least mangled part of his hand) amidst so much screaming and squirming that we rescheduled for this Thursday so they can do it while Austin’s under sedation. They’ll just administer propophol through a gas mask and rip them out in ten minutes, saving the little guy any more unnecessary misery.
The hand is definitely healing though. When we change the dressing covering it, I’m no longer worried about infection since you can tell it’s all closed up nicely. Thanks goodness there.
And, and this is the best part of all, his Thursday labs revealed that his creatinine has lowered yet again. Still not in the normal range for a child his age, but getting mighty close.
Every time I look at him dancing about in his goofy way, playful and happy and unencumbered by disease (or — often — by clothes), I feel so thankful we have made this choice. We will never regret having these days.
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.
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.
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!