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Austin will have an MRI on Thursday afternoon. It took some juggling to get this scheduled because we were initially hoping for a morning slot, since he can’t eat before being sedated. But the next available morning slot was on May 31 and none of us (neither Mark and I, nor Austin’s doctors) were comfortable waiting that long. Turns out he can have clear liquids until noon and, lucky boy, popsicles count as a “clear liquid,” so the snack at school that day is settled and I’m not dreading the slow ticking by of the hours that morning.
We’ll see his oncologist after the scan and I imagine we’ll have some results to discuss before we leave that day. But it’s important to note that we don’t expect to get either good news or bad news out of Thursday. We simply expect to get more information. I know, now you’re all going, “Whhhhaaaaaattttt??” But here’s the deal: the MRI cannot tell us if what’s inside him is cancer. It also can’t tell us if it’s not cancer. The purpose is solely to get a good, clear image of the “thing,” its size and, especially, its location. We may be able to see if it’s filled with fluid or not (both of which could be Wilms tumor, so that isn’t terribly relevant either). Barring some bizarre turn of events, like if the thing has doubled in size since last Monday (which would obviously be very very bad) or if it has disappeared completely (which would be good, but confusing), we hope to walk away from Thursday with enough information to help us determine what to do next.
If we want to know definitively what the thing is — and, as of this moment at least, we most certainly do — then we have to biopsy it. The MRI will let us know if the radiologist can attempt a needle biopsy instead of having to do a surgical biopsy. If the thing is located in a spot that’s easy to reach with a needle, without having to go through too many other tissues or organs or what-have-you, then that will be considered good news. If it’s not reachable, then we’ll have to decide whether we move ahead and do a surgical biopsy, which is the more aggressive approach because it poses many risks to the kidney and his insides, due to the excessive amount of scar tissue they’d have to cut through to get there. Or if we take the dramatically less aggressive approach and “watch and wait,” by doing repeat scans more frequently to monitor the “thing,” without taking any action until it grows or changes.
It’s confusing, I know (as so much of this has been), but the MRI is really just a first step toward what will ultimately be either good news or bad news. Like we’ve done so many times before, this is a take-one-tiny-inch-at-a-time kind of deal. One tiny inch is about all I can handle right now.
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!
You know how this goes. First I’m in disbelief, then I’m angry and sad and scared, then I grasp at something to hope for. Then there comes (or not) a reluctant acceptance of the ugly truth, followed by that well of strength that has been tapped too many times. Back and forth, up and down, over and over. The roller coaster ride has begun.
Thank you, all of you, for yet again stepping up and offering to walk this tortured path with us. Today was an emotional day as at every drop-off and pick-up and at several places in between, there were long hugs and inevitable tears and many many f-words. I hear and appreciate every offer of help (and I hear and appreciate every f-word). At this moment, there is nothing we need (save that magic pebble), but the time may come when we will accept all the meals and playdates and everything you’ve all given so many times before.
Nothing is certain. This is not yet the worst news. It is simply not the good news we had so fervently hoped for and so completely believed we’d receive. But we have many more steps before we can say for sure that this is cancer and before we know at all what any of this means for Austin’s future.
His oncologist is taking a surprisingly calm approach, considering he usually wants to do more and do it faster. After discussing the situation with Austin’s nephrologist, they now say we can skip the GFR. The fact that his kidney function has remained steady for two years pretty much guarantees a GFR result of 60 or greater. So that’s one small thing off the table. We will instead do an MRI in the next two weeks, perhaps Wednesday, May 16. Mark and I had been thinking we’d do it the week after that, but everyone I mentioned that to gasped in horror and said, “Why can’t they do it sooner?!” I think they probably can do it sooner (they’re working on scheduling it right now), but the truth is that Mark and I don’t really want to deal with the results any sooner than we have to. Usually I’m the one who believes everything will be alright and this time, I feel fairly certain that the next step will involve removing his kidney and I just don’t want to get to that step one single second sooner than we have to. Then there’ll be the chemo issue — which could push the start of the two-year countdown clock back by several months. Of course, none of this is certain, but I can’t stop it from going through my mind.
So, first things first and that’s the MRI, which poses no danger to his kidney and is expected to give us at least a good look at what’s there. Of course, a clear image is not the same as a biopsy, so even that won’t define the “thing” with certainty. But we’ll just take things one day at a time and make the next decision when it comes.
I feel an incredible sadness and a huge weight upon my shoulders. I look at this vibrant boy zooming ahead of me on his bike down the street and it seems impossible. But it’s seemed impossible before. Not ever, not for one minute of one day did having a child with cancer ever seem possible or normal or expected. I feel like we’re piecing his life together, buying snippets of time here and there. Trading in one surgery for three good months. Or twelve rounds of chemo for half a good year. Stitching together these ridiculous pieces, in-treatment time with non-treatment time, a bit of sickness here with a bit of health there, mixing the living in with the dying. Or the dying in with the living. A patchwork quilt of life, held together by a thread of hope so thin that it at times appears invisible, and yet so strong that it proves unbreakable.
It must be unbreakable.
Sometimes it’s hard to get back into that old mindset . . . that old cancer mindset. I had two other, completely disease-free topics I was going to write about today, and then I doubled checked my calendar and was reminded that Austin has his 20-month scans tomorrow.
Twenty months . . . now that’s a significant chunk of time in the life of this small boy, who has battled cancer two and a half times in the past four-plus years. Twenty really really good months, of health and happiness and growth and energy and normalcy. But tomorrow we’ll go back to the hospital, after Austin makes a brief appearance for his first day back at school (which should give me just enough time to run and shower). He’ll have his regular bloodwork to check his kidney function, followed by a chest CT to look for possible metastasis to the lungs and then an abdominal ultrasound to look at the kidney, pelvis and liver (another favorite site for Wilms tumors when they decide to move around and, of course, the current home of that mostly unidentified “fatty tissue” we’ve been watching for the past year). Then a follow-up with his oncologist to go over the results.
The whole thing should last about four hours, with a break for picnic lunch thrown in and quite a bit of exercise moving from the sixth floor of the cancer clinic to the basement of another building and back again. If all goes well — which we certainly expect (not that our expectations mean anything in this game) — he’ll be free again until the end of April, when we have his eagerly awaited two-year scans. Those are the gold standard, although we are well aware that they will give no guarantee that his cancer will never return. Nothing will give that guarantee. But they will mean that he has reached a critical milestone and that the chances of his Wilms tumor recurring are extremely small. The two-year mark will also mean that, should his kidney fail, he can then be eligible for transplant without dialysis (or without too much dialysis; sometimes the time between failure and actual transplant can take some months due to many many factors, not the least of which is identifying the actual kidney that will go into his body). But those are discussions for another time.
For now we have this to buoy us onward: A neighbor of my mother’s attended an event at the hospital recently in which the Chief of Pediatric Oncology was talking about the importance of research and how it directly impacts patient outcomes. He presented three case studies as evidence, one of them about a boy named Austin with bilateral Wilms tumor (say, that reminds me. . . ) who he described as “cured.” I asked my mother several times if she was sure that was the exact word that was used and she was very very sure. “He said ‘cured,’ Krissy. That’s the whole reason Ann stopped to tell me about it.”
Cured. Well, that’s not a word we allow ourselves to use too often. Never, in fact, have I referred to Austin as “cured.” But after tomorrow, and after April, maybe we’ll just have to change our vocabulary. And our mindset.
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.
Sooooo, here’s the rundown on our weekend. The boys and I went out to Chagrin Falls (dang, is that far away) for the Kick It event Friday evening. Their team had fun despite being a hodgepodge of ages and sizes and ability levels. We literally had three year-olds who didn’t know which way to run after kicking and ten year-olds who were slamming the ball into unsuspecting opponents as they moved from base to base.
And Austin, the boy of the hour, was completely uninterested. Clinging to Mommy, begging to be held and only kicking when bribed by one of the organizers with his very own ball to take home. I was a little bummed that he didn’t participate more, but wasn’t shocked because his public M.O. is one of shyness and disengagement.
As soon as our official game ended and the kids were organizing their own mini-game off to the side, the tornado siren went off. Huge long wails circling around the community, while those of us on the fields looked at one another with raised eyebrows and shrugged shoulders. “Is that, like, … a tornado warning?”
Suddenly the refs blew their whistles and people started running for their cars, actually running, clearly not inner-ring dwellers like us who’ve never even heard a tornado siren (did I tell you the eastern edge of Chagrin Falls is far away?). Meanwhile, the sky was slightly gray but certainly not foreboding and there wasn’t a drop of rain or a breath of wind. So we hung out for a bit as the organizers quickly packed up the tents and unclaimed trophies before making the long trek home.
A half hour later (and still not a drop of rain), Austin was snuggling with Mark on the porch swing while Braedan and I walked up and down the block to retrieve the (adorable) signs from their (successful) lemonade stand, which raised an extra $52.52 for Kick It.
Breadan was complaining about the “stupid” weather people who blew that horn and I repeated ancient motherly wisdom: We’re better safe than sorry. But little did I know how that small piece of advice would come back to bite me in the ass.
When we finished our neighborhood walk, Austin was asleep on the couch and I didn’t move him up to bed until well past 9. And he was broiling. Sweaty hair matted to his head, red rosy cheeks burning with fever. Yes, a 102.6 degree fever. Not the end of the world, I told myself, he doesn’t have a central line, it’s not an automatic overnight in the hospital like it sued to be. I gave him Tylenol and he quickly feel back to sleep.
Only to awaken an hour later throwing up. After we cleaned him and the rug and the bedsheets and ourselves, we texted Austin’s oncologist just to let him know. Within a half hour, Mark and I were standing in the kitchen hovering over the speaker phone while Dr. Auletta suggested a visit to the emergency room. Mark and I were shaking our heads and mouthing, “No way” to each other — I mean, it’s just a kid with a fever, right? — while Dr. A repeated what we already know: One traumatic event of dehydration could destroy what remains of that kidney. Austin simply cannot get dehydrated.
Ultimately, we were advised to keep giving him fluids throughout the night and if he could manage to keep them down, we could wait until morning to visit our pediatrician for bloodwork. Mark and I sat at the kitchen table long after that conversation reminding ourselves and each other that Austin is not a regular child. Even when he looks like it and acts like it, even when we all feel like life is normal, it’s just not. And it could turn on a dime.
At about three in the morning, Austin was lying between us in bed shivering uncontrollably despite the blazing heat emanating off his body. And then he was throwing up again. We swooped him into the bathroom, washed him down, stripped the bed, and then I got dressed. Glasses, cup of coffee, charged phone (not that it works in the basement ER anyway). I was most bummed to learn that the brand new state-of-the-art pediatric ER doesn’t open until July 7 (bad timing, Austin), and off down that damn hill we went, one more time through the quiet and empty streets.
We walked in the old ER (yuck) and Austin, just for dramatic effect, puked three times in front of the registration counter. Finally, we were in a room with an IV placed, labs drawn, anti-nausea meds administered. He is a spectacular patient, braver and more mature about medical procedures than about any other aspect of his life. I slept fitfully next to him on the tiny bed, while he snored and blew stinky throw-up breath in my face. At 7:30 he popped up and announced he felt “so much” better, was able to keep some water down and we were out the door and home before 9.
He was in and out all day yesterday, some moments of playfulness and others of feverish misery. But he hasn’t thrown up again and, between juice and fruit popsicles and an occasional piece of toast, he seems to be fine.
As we left the hospital on Saturday morning, one of the nurses told us to come back and see the new ER when it opens. “It’s soooo beautiful,” she gushed. “Hope we don’t have to!” I called as we walked out the door.
But we probably will. Better safe than sorry, after all.
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
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.
Did I really say that I don’t mind washing the sheets every other day? Okay, fine, I take that one back.
And another thing (this one positive): Austin’s doc said we can ease up on the dietary restrictions, which is obviously great news. Especially since we’ve already been easing up on the dietary restrictions. Now I just won’t feel so guilty about it.
Off to do laundry . . . .
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.