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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 outdated data.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!
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.
As we near the one year mark since the end of Austin’s cancer treatment, he has a series of appointments, scans and lab work scheduled. Today was a visit with his kidney doctor, our first exclusively with her since early last summer.
All in all, he’s doing very well and is perfectly positioned in the fiftieth percentile for both height and weight. This is a really good sign since kidney disease can negatively impact growth and I was getting a bit worried that he hadn’t been gaining enough weight. Turns out he has stretched from his once chubby short self to a new long lean self (sounds nice, doesn’t it?).
We reviewed his blood pressure medicines and decided to take him off one in favor of another. I’m pleased about this because the one he’ll soon stop is a diuretic, making my four-and-a-half-year old very dependent on nighttime diapers. He pees like crazy between dinner (when he takes that particular med) and midnight, often leaking through his diaper . . . and sometimes leaking through two diapers! Mark and I have considered this as a minor and manageable side effect (I mean, really, if washing his sheets every other day is my biggest worry, I can’t complain much), but Austin himself has been increasingly concerned about needing a diaper. In fact, when he went to his cousin’s eighth birthday sleepover, with boys much bigger than him, he told me ahead of time that he was going to change in a different room so “nobody would see.” Of course, as a parent, making sure your child feels that he belongs and won’t be made fun of is of utmost importance, so I’m eager to try this new route.
She ordered a bunch of labs — the renal panel we usually get, plus some measures of bone density and vitamin health — but we won’t get them done until his next blood draw in a month, so there are no new numbers from today. She did say that based on his recent creatinine levels, his kidney function is around 50% (as estimated GFR of 53). Not bad considering it was below 30% last spring and summer. Of course, there’s no way to know if the kidney will continue to function this well or if we’re in something of a honeymoon phase, but we’ve learned to take what we can get. If it’s the same at the golden two-year mark (when, from an oncological perspective, he would be eligible for transplant), we would not transplant him. Transplants aren’t allowed, or covered by insurance, unless a patient’s kidney function is below 20%. So, hopefully (always, always, everything is tempered by hope), we have a ways to go yet before that step.
Another day, week, month, another appointment, scan, test . . . we have our Austin, he has his kidney, and all is good.
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.
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, we’re waiting for a sign from St Jude’s really. What is Jude the saint of, by the way? Hopefully it’s not something awful like “lost causes.” That wouldn’t really be appropriate, would it? Anyway, the doctors at St Jude’s are reviewing Austin’s case today and will let Dr. Auletta know by the end of the day what their recommendations are or if they have ever seen this happen before. (Being “one of a kind” certainly has its down side!)
You may remember that St. Jude’s reviewed Austin’s case back in March and April and their recommendation (that Austin receive flank side radiation) differed from that of both Dr. Auletta and the radiation oncologist here at UH. It also differed from the non-medical opinion of both me and Mark, and it was one we did not follow. Now, I certainly respect and admire all the incredible work that St. Jude’s does for kids with cancer; they are undoubtedly the best around. But I really felt like they just weren’t paying attention to the nuances of Austin’s cancer when they made that particular recommendation; it had so few advantages and so many (and such big) disadvantages. I also wonder if this is yet another case of over-aggressive treatment of cancer in children. Maybe one of the reasons they have such impressive success rates regarding cancer is because those patients end up with other horrible and often life-threatening conditions. It doesn’t do much good to have a child who is ”disease-free” (as in no evidence of cancer) then die of, say, transplant complications.
But I’m getting ahead of myself. We are waiting to see what they say today and how this impacts our plan moving forward. Not quite sure what to hope for, but hoping for the best!