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It all started on a swelteringly hot Monday in July. Almost eight years ago. Our boys were 3 1/2 and ten months old. We lived in a different house. We were different people.
Because it changed everything.
In ways large and small, obvious and subtle, it shifted and molded each of the four of us into the people we are today. We will never ever know what our lives might have been, who our boys may have become, what paths we would have pursued had we not been sidetracked by childhood cancer. Sidetracked…? No, that doesn’t come close to describing what it did to our lives. Waylaid. Ambushed. Flipped over, thrown around, and knocked senseless.
Here’s the tally of physical scars: Thirteen visible on his body, some small, some medium, one enormous. One and a half kidneys gone. Twelve rounds of radiation. Fourteen months of chemo. Countless blood and platelet transfusions. One Broviac line, one PICC line, one Mediport. Temporary dialysis. More medications than I can name, some oral, some intravenous, some subcutaneous. An ileus…or two. MRSA and C-diff, at the same time. If much of this sounds foreign to you, consider yourself lucky.
Actually, I consider myself lucky. In every way that we were outrageously unlucky, we were equally, unexpectedly, miraculously lucky.
And today, he had his five-year scans. To check out his kidney, liver, lungs and heart. And everything is normal, unchanged, unremarkable. As we sat in the office with his (new) oncologist at the end of our day, she ran through the list of things to worry about moving forward (who doesn’t need a list like that?): Infertility, heart problems, kidney problems, secondary cancers, cognitive issues, hearing loss, and scoliosis. We went through each, one by one, comparing them to the cumulative doses of his six chemo drugs.
And he should be okay.
The cognitive issues and hearing loss would have already occurred, she expects him to remain fertile, his heart is being monitored already. Secondary cancers would reveal themselves through his regular lab work, but he is well below the level of chemo considered dangerous in that regard. There are no guarantees — and some items on that list (ahem, kidney problems) are not potential late effects of cancer treatment that we worry about, because they are instead obvious and definite parts of his everyday life that we worry about. He still has stage three renal failure. He will still most likely need a transplant.
But what he does not need, ever again, is to be scanned for Wilms tumor. He does not need annual or even biennial checks of his liver or lungs or kidney. Whatever comes his way — and stuff will come — it won’t be kidney cancer. That dragon has been slayed.
By this guy:
Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:
It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.
But you know that part on the graph: “Well, survival is a relative term,” where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.
Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.
We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.
Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.
She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.
But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.
And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.
And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . . Still.
And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.
But you know what? Fuck cancer. And all of its shadows.
Because the tagline of my blog does not read, “Krissy Dietrich Gallagher’s blog about life, luck, love, parenting, writing, and, of course, school funding,” life does indeed go on outside of local election cycles. Austin had an abdominal ultrasound at Rainbow yesterday, part of our we’ll-pay-anything-to-have-him-scanned-by-the-one-doctor-who-knows-what-his-crazy-kidney-looks-like and his first of five tests in the coming week. Next Friday, he’ll go to the Clinic for an ECHO, EKG, chest CT and labwork plus a physical with his new oncologist. Unfortunately, I scheduled those appointments long before I knew the boys had that day off school, earning me serious Bad Mommy points. A trip to SkyZone immediately following should keep me in good standing though.
Yesterday’s results came back clear, unchanged since last May, the first hurdle cleared on our path to the title of 3 1/2 years cancer-free. Our radiologist did recommend planning another MRI at some point, but he said there’s no rush and it could be done at the 5-year mark. It’s been a while since we had the absolute certainty of such high quality imaging, back with that unforgettable scan in May 2012. Ultrasound imaging is acceptable but nowhere near as precise as MRI, so we’ll discuss that with our doc next week.
I snapped this picture of Austin yesterday in the waiting room, as I marveled at how much he’s grown since we first carried him into that space in an infant car seat.
This was the first time he could read the Scrabble tiles outside the waiting room doors, connecting words like head, neck, legs, and toe to Pediatric Radiology (what, no kidney?). And there he sat, reading a book all by himself. His feet still don’t touch the floor, so that may be the next milestone he hits in that all-too-familiar space. And someday, he’ll drive himself down to the hospital and maneuver into a parking spot as a tall, strapping teenager. I’ll accompany him, probably against his will, and he’ll no longer climb into my lap in between procedures, but will be much more concerned with where to access the hospital wi-fi.
And while all of that makes me feel sad, his growing up sure beats any alternative.
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.