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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.
Tomorrow are Austin’s one-year scans. He’ll have his usual procedures: labs drawn, followed by an abdominal ultrasound to look at the liver and kidney, followed by a chest CT, followed by a visit with his oncology team. And we’ll follow our regular schedule: a normal morning at school, then lunch at the fountain outside the hospital, then many hours of roaming back and forth through the underground maze from one appointment to another.
The radiologist usually gives me a basic rundown on his findings during the ultrasound, so that information I’ll have before we even walk out the door. The CT scan takes longer to read (or longer to be read, is more like it), so we might not have official results from that until Friday. Some of the labs are quick and we’ll have those back by the time we return to the cancer center after scans, but the kidney numbers — which we await with bated breath — won’t come until after we’ve gone home.
Of course, we hope for no changes to his liver, kidney or lungs and either an improvement or maintenance in terms of kidney function. We feel good, hopeful, optimistic, but we’ve always felt that way, even when we were way off base. He seems so normal and vibrant — but he’s always seemed that way, on the outside at least, even when things were going horribly wrong on the inside.
So, we take this one step at a time. And potentially, hopefully, as tomorrow comes to a close, we will find ourselves one step closer to an end. Not the end, because that will never come. But an end. Which would be good enough.
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.
May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!
Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin. We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.
So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!
That kidney is indeed recovering.
Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?
Springtime would be nice!
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.
Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.
Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.
It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.
But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while. Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.
Yes, you read that right. We are wavering. Not about chemo. We feel certain and confident in our decision to stop. But about the kidney.
I was wrong when I said last week that there was nothing we could do to push Austin’s chance of survival up over 50%. There is something we could do: we could get rid of the source of his cancer in the first place. Take the kidney out and put cancer behind us. There’s still a risk, of course, that it may spread somewhere else, but his cancer’s never done that. He’s been battling this disease for almost three years now and it’s always remained extremely local. While there are never any guarantees, we’d be pretty shocked if it returned somewhere else in his body.
But we wouldn’t be shocked if it returned in his kidney. Which makes us think we should just get rid of it once and for all.
Ugh, yuck, I know, pre-emptive strike. I hate the idea of it, of causing him some harm that might not be necessary, of taking away our chance at the miracle. But we have to consider this, we have to remember the ultimate goal. We’re not there yet; we haven’t completely decided. And there’s not a huge rush, we can wait a few weeks and see how we feel, watch his kidney function to see if it actually begins to bounce back, learn a little more about the ins and outs of dialysis (we’re “touring” the dialysis clinic this Friday when the kids are there). We can give him and his body and all of us a little rest, a small break that might involve a short getaway with some swimming, before moving ahead. It’s not time-specific like the chemo that had to happen within five or six weeks of the last dose.
This is not easy, as you know. I dread the very idea. But we’d be happy to take that kidney out and see nothing in it. That wouldn’t make us feel like we’d ruined something unnecessarily (which was our dilemma back in the fall); his kidney docs don’t think it’s gonna last more than a few weeks — or maybe, maybe months — anyway. And as long as there is no active cancer inside him, he could be eligible for transplant in April 2012, two years after his last chemo treatment.
So we do have some control over this situation, a scary amount of control in fact. We can make an enormous sacrifice now so we don’t have to make the ultimate sacrifice later.
In lighter news, Saturday’s sleepover was a huge success and the boys made an absurd amount of money at yesterday’s lemonade stand (thanks to the fact that next to no one requested change!). No news yet from today’s scans.
Oh, and the “B” on that hat? It stands for Braedan!
People keep telling me to go with my gut but all day long my gut’s been telling me to stop and then tonight, it switched over and said continue. Aaaahhhhh.
Here’s some more info, in response to some of your questions and comments (thank you for those) and to help me further flesh this thing out:
If we stop, we would certainly continue to monitor Austin. As his oncologist said today, “We wouldn’t just wish you luck and send you on your way.” He’d still have frequent, probably weekly, labwork to watch the kidney function, plus abdominal ultrasounds and chest CTs to check for relapse. He would not be able to do either MRIs or abdominal CT scans due to his diminished kidney function. That gives us pause because abdominal CTs seem more accurate than ultrasounds but if we have the right person doing them (since ultrasounds are more user-sensitive than CTs), they’re still enormously useful. In fact, we followed his “shadow” in the fall on ultrasound for many months (and some people argue that this is a better approach anyway because it reduces the radiation risk). So we’d still be watching, at least every three months until we felt that things were holding steady enough to move to six.
Austin is scheduled to have an ultrasound on Monday which could help us finalize this decision since if there’s something suspicious or different from the last time, we’d obviously opt to move forward. But his full scans, including an abdominal MRI, were clear in the end of March so we expect and hope that hasn’t changed.
If the cancer were to return again, we would remove the kidney then and there without another thought. But it might be too late. This cancer is tough enough to “cure” the second time around; the third time is almost definitely fatal. So, you see, this decision is a heavy one. Here’s what the study shows us (and remember, there are no kids like Austin in this damn study — every child with bilateral Wilms was removed at the onset and none of the kids had Austin’s rhabdomyomatous variation) but it shows that out of 60 children with relapsed Wilms who went through this protocol (having anywhere from less than one to the full six maintenance cycles), 33 of them had a second relapse and, of those, 27 died.
This lovely bit of information (which is shockingly new to you but sadly familiar to us) could actually push us in either direction. It could make us say, “Holy shit, this is serious stuff. We need to do everything possible to not let it come back, no matter how miserable it may be.” But then there’s another side of me that says, “Wait a minute, here I am being told that my child has at best a fifty percent chance of living, at best. Shouldn’t I do everything in my power to make sure his life, however short, is good? Or great, even? That he doesn’t spend half of his piddly little life in a hospital, hooked to machines, on the wrong side of the window?”
It’s a crazy way to think. It’s unnatural for me to write these words or think these thoughts and yet, this is our reality. This is how we have to think. We have to know that if we choose to stop, he might die. But, fuck, he might die anyway. We might remove his kidney and keep pumping him full of chemo for week after week and cycle after cycle and he might die anyway!
Because here is what the study does not tell us, anywhere, ever: what difference additional cycles make. It never ever mentions how the 12 kids who did one cycle fared compared to the 14 who did two compared to the 2 who did five. They never tell us! So how are we supposed to know if two is actually better than one? Or if two is even enough — what if we have to do three or four or six to make a true statistical difference? (And then how many of those kids end up dying from treatment related complications or from leukemia ten years later??) Our oncologist has requested that information and never received it but I’m asking on my own, sending random emails to the study authors to see if we can glean a little insight into what seems to be the most important factor.
And then there’s the issue of how long the kidney will last if we do stop. It could, of course, fail next month. And then we’d be on dialysis anyway. Or it could bounce back, free from its recent stress, regain some function and keep on keepin’ on. Remember, it only needs to make it two years before he can be transplanted, as long as he remains cancer-free. So even if it chugs along for just another six months or year, it would still get us that much closer to transplant.
Our oncologist has said he’ll support whatever decision we make. He recommends continuing but he also understands and respects the other side. He told me today that if he believed we were putting our child at risk or were making a mistake, he would tell us. But he doesn’t think that. He sees the value of either choice. Which says a lot because, an an oncologist, his job is solely to rid my child’s body of its cancer.
Our job is so much more.
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.
I know that this stuff can be confusing. And of course scary. And sometimes being scary makes it more confusing or being confusing makes it more scary, so let me give you a little more information.
This test, the GFR (glomerular filtration rate, words you can quickly forget) or nuclear scan, is one of the best measures of kidney function. Better than, say, the weekly blood tests of Austin’s creatinine level. And it’s a test that he must have prior to getting the particular chemo he’s scheduled for this weekend. So he’s had this test twice before and, as I mentioned yesterday, we were pleasantly surprised with the results both times.
This time we were expecting it to be a little worse. A little worse. We have put that kidney under major stress after all, with both radiation and twelve weeks of chemo. And there have been red flags in the past weeks: his blood pressure medication has quadrupled since December, he’s been spilling small amounts of blood and protein into his pee. So we’ve been realistic, aware that the aggressive nature of this treatment will not doubt put the kidney at risk.
But — and this is a big but — he still is not showing signs of being in kidney failure. He’s peeing regularly, he’s not at all puffy or lethargic. And there are other valid explanations for the blood in his pee, most notably the blood thinner he was taking twice daily for that clot (the dreaded shot which has thankfully been discontinued since the clot has thankfully cleared) and the Heparin he has flushed in his PICC line three times a day (also a blood thinner). Plus the acute trauma of the chemo itself, all of which is flushed out through the kidneys. I mean, kidney.
So, there are excuses for these other bad signs. (Can you see who I’m trying to convince here?) And, importantly, his creatinine (a measure of kidney function we’ve been watching for years) has remained relatively steady. It did go up from its pre-chemo baseline, but hit a plateau still within the normal range.
And mistakes happen in medicine. All the time, unfortunately. One tiny thing goes awry and the whole test is rendered irrelevant. The man I spoke with today to reschedule the test said that they’ve ordered new contrast from California in case there was something wrong with their current batch. And he said this “happens sometimes.”
So, we’re still hopeful. I mean, my mind has definitely started to go down those roads, so well-traveled in October and November, of save-the-kidney versus attack-the-cancer. But we’re hopeful. The test will be done tomorrow and we should have results by evening or Wednesday morning at the latest.
Until then, we hope. And after that, we deal. As always.