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First things first, watch Fox News at 6 tonight to see me and Austin down at the hospital today (what is it with me and Fox News? I guess they’ve never checked my voting records!). Thanks to his role as a St. Baldrick’s Ambassador Kid, he is becoming quite the little celebrity! As soon as I get the video clip, I’ll post it here for those of you who live out of town (or only surf the blogosphere after-hours).
And now, the real first thing first: Today’s results were all good. Well, not exactly all good (keep reading), but good in the ways that matter most. His kidney function is holding steady, which is fabulous. His CT and ultrasound show no change to his lungs, kidney or liver . . . also fabulous. There is no indication of any cancer anywhere inside his body. So, in terms of Wilms tumor, Austin is healthy as can be. And in terms of kidney function, he is as healthy as can be expected.
But (ah, the dreaded but), there are some other troubling issues. Only slightly troubling, mind you, especially speaking in relative terms. The radiologist thinks that the liver looks like it’s “coarser” than in the past. Not anything inside the liver (that old spot has remained unchanged since August 2010), but the make-up of the liver itself. He just felt like it looked . . . different. Vague, I know. Dr. Auletta wasn’t sure what to make of this either, especially since Austin’s liver function is and has always been normal.
The other thing is that there seem to be some . . . stuff in his stomach. It could be calcium build-up from all the Tums he takes to bind out the phosphorous in his diet or adhesions due to all the surgeries he’s had (not a terribly unusual side effect of being cut open and manhandled that many times). They did recommend doing an upper-GI test, just to see if there’s any action we need to take before an actual blockage occurs. I’ll learn more about all of these things in the next few days after the various doctors on Austin’s team are consulted and a formal report is issued.
All in all, it’s fine. What matters most is that there’s no cancer and a still-working kidney. But, as I said to the news reporter today, two-thirds of the children who survive their cancers live with long-term health problems as a result of their treatments. The very things that made Austin better are now the very things that can make him sick. We know that his cancer story will never be over, even if the cancer itself is gone. He will never actually be the normal kid he appears to be.
But, hey, we’ll take him, abdominal adhesions and all.
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.
… 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.
Well, it’s been two months since Austin’s had labwork and nearly three since he’s had an ultrasound or CT scan, and that’s about as long a break as we can hope to get around here.
We are due at the hospital tomorrow, following Austin’s morning at school (assuming he has a morning at school — today was another wasted snow day, in my opinion, because I went out and ran five miles and it wasn’t bad at all). He’ll have bloodwork done to check his kidney function and his hemoglobin (among other things, but those are the numbers I pay attention to). Then an abdominal ultrasound to look at both the kidney and the liver, followed by a chest CT and then a follow-up visit with his oncologist.
As much as we have enjoyed this long break from all things medical, it does raise the stakes. The longer we go, the more nerve wracking the tests become. Three months is an awful long time to turn our heads and look the other way. Who knows what those sneaky little cancer cells could have done in three months’ time?
But he certainly doesn’t seem like a boy who has a single thing wrong with him. He’s happy and active and, at this moment, busy building an obstacle course for his Batman motorcycles to race through.
Should be fine.
What a difference a year makes. I find myself struck day after day after day by the power of the memories of last year. Right before Thanksgiving (last Thanksgiving), Austin had an ultrasound that revealed a new spot. New, as in not the same spot we’d been watching and worrying about all fall. So we knew, at that point, we almost, mostly, practically knew what that his cancer was back. But we weren’t quite ready to commit yet, to actually do anything about it.
So we waited, a few more weeks, for a repeat ultrasound. And that happened on December 7. One year ago tomorrow. And that, well, you can read it here. It was a Monday and then I sent Austin back to school that Tuesday and Wednesday because I knew these would be his last days there for a good long while. We spent one quick night in the hospital that Thursday for a CT scan and then returned the following Sunday for the next surgery and big pre-Christmas stay.
But it’s that day of school on the 8th that I remember. I dropped him off in his classroom and walked out as he cried for me, held tight in the arms of his teacher. It wasn’t unusual, he cried when I left on most days last year (and many this year). He ends up happy, within mere minutes, so I knew in my head it would be okay. What I felt in my heart was another matter. That walk out was one of the hardest things I have ever done in my life.
One of my closest friends happened to be parent helping in her daughter’s classroom that morning. And I had stopped to see her for big hugs on my way in, but I didn’t want to stop again so I walked out the door and down the path to my car, and I suddenly just lost it. Another mom came walking up, one I know well who had already read the previous night’s update and I just fell into her arms. She was holding a baby bundled in a snowsuit but managed to hold me too. And I sobbed. And I really wanted her to go back in and get my other friend for me, but I couldn’t bear that one minute when I’d be standing out there alone in the snow, while parents who didn’t yet know wandered past me. So she did the job (thanks, Lisa) and I mumbled over and over into her winter coat, “I don’t know if I can do this again. I don’t want to do this again.”
But, boy, did we do it.
On this weekend last year, we chopped down the top of a pine tree here in our new yard and brought it back to our old house to serve as our Christmas tree. Well, it turned out to be pretty spindly and lopsided and very Charlie Brown-like:
So we made up for it yesterday by buying two trees. One for the living room, which the boys are calling their own because they finally got their wish to have colored (as opposed to my preferred white) lights. And another for the dining room, where I finally got my wish to have a perfectly color-coordinated tree.
Yup, we definitely did it.
I just got an email from our oncologist (complete with smiley face) with an updated report from the radiologist reviewing Austin’s scans. She was able to go back and find some older chest CTs that had been done without sedation and she determined that these two tiny nodules have been there as far back as March of 2009. That is enormously good news because it means they’re not new (and anything new in the cancer world is always bad). They haven’t changed or grown or done any harm in all that time. . . and therefore they shouldn’t.
Her report ending by saying the findings are “unremarkable”–doctor speak for “nothing to worry about.” Of course, if you ask me, it all seems pretty remarkable.
So, yesterday was pretty good. As we’ve all had to learn (the hard way), nothing in this game is ever straightforward, there are always always nuances.
First, the good stuff: His kidney and liver are unchanged. The spot on the liver is still there; it’s still hard to see clearly (visible in some planes but not in others) and still impossible to identify but it hasn’t grown and hasn’t spread, which makes it highly unlikely that it’s a tumor. Our oncologist actually thinks we can skip a month and if that next one is also unchanged, we can move to ultrasounds every three months which would be awesome.
His bloodwork was also good. A new low for his creatinine which means that kidney is just working away. The normal range for a small child is 0.3 to 0.8. Back in April and May, when he was well on his way to full blown renal failure, his creatinine was as high as 1.75. His previous low five weeks ago was 1.03. Yesterday’s? 0.87. Yup, that’s right–almost normal, almost perfect.
His hemoglobin continues to lower but at a very slow rate. I’d been thinking he might finally need a blood transfusion, since the last was eleven weeks ago, but it looks like we’ll get at least another month before that. So again, good news.
Now for the chest CT . . . and the nuances. The official report noted two tiny nodules, less than half a centimeter in size. Tiny little spots that, of course, are impossible to identify. Nodules are harmless, tumors . . . not so much. The radiologist went back to look again at the last scan from August and determined that yes, the spots were there then too but they’re so small that she didn’t even note them in that report. Not that they’ve grown — they haven’t — but for some reason she was able to see them more clearly on this particular scan.
Most of Austin’s previous chest scans were done under sedation, which causes part of the lungs to collapse slightly, meaning that we can’t compare the two most recent scans to the many done before. So ultimately we don’t know if these little spots have been there for years or if they appeared sometime in the last six months. Dr. Auletta said that no one would call these cancer; no doctor or radiologist studying these slides would consider these spots anything worth worrying about.
So we won’t either. We’ll check again in three months and hope for news that, if not better, at least isn’t worse. We know this process will never ever be without questions and unknowns and small shadowy spots that could drive you crazy . . . if you let it.
But we won’t.
Oh, and when we pulled in the driveway at the end of our long afternoon, I discovered three women I’ve known all my life, old neighbors who are now grandmothers, sliding down the slide from Austin’s treehouse. They’d passed by on a walk and decided to come back and take a peek and then of course wanted to see the inside and once up on that platform found that it was easier to get down by slide than by ladder. They were all a little embarrassed to have been caught back there, but I love it. I’m serious when I tell you to feel free to stop by and check it out in person. I’m happy to catch any of you sliding down our slide.
Just wanted to let you all know that the Rainbow Radiothon of the Children’s Miracle Network will be on air tomorrow and Friday on 102.1 WDOK, from 6 am to 7pm. We recorded a new miracle story for Austin about a month ago since this is a different radio station than the one that did his first story (and since his story has completely changed in the course of two years).
Wow, I just re-listened to that original story and it really is powerful (except for all the hoops you have to jump through to listen to it — I will try post a more direct link soon). And they could not have picked a better song. I hope I like this new one as much — I won’t hear it until the rest of the world does, which always makes me a little nervous. It’s extremely hard to take this three-year-long saga and break it down from a one-hour interview to a three-minute piece, while maintaining any sense of accuracy. That’s one of the reasons I was so impressed with the recent Fox 8 News clip — because they so perfectly captured Austin and his journey in just a few short minutes.
There’s nothing on the WDOK website yet but they did ask for a bunch of photos so they could run slide shows during the songs, so definitely check in over the next few days. Austin and I will head down to the hospital tomorrow for his afternoon of tests and appointments and will stop by the live studio for an interview, probably between noon and 1.
Should make the day a little more pleasant….
Yesterday went mostly well. “Mostly” because there’s never been a time we’ve had scans when the response is simply, “Perfect, great, everything’s just ducky. Go on your way now, you healthy normal people.” No, not quite that.
First, he had the follow-up with the radiation oncologist which was fine (actually a lot like what I said above). Then the abdominal ultrasound which lasted a good two hours including the long wait time between being seen by the technician and being seen by the actual doctor (I’ve never really understood why they bother with the technician at all if the doctor just has to come and do it all over again, but anyway . . .). There is nothing new in the kidney, which is obviously good news. But there is a spot in the liver. Now, don’t freak out, it’s not a tumor. Or at least we don’t think it’s a tumor.
It’s more blob-like, where tumors tend to be round (heard that one before, right?). The radiologist thinks it’s most likely “fatty infiltration of the liver with focal fatty sparing” which makes the spot. Whaaattt? I can’t explain it any better than that but it’s not anything to be alarmed about, a not dangerous and not uncommon side effect of chemo. But of course, we can’t be positive that’s what it is based on ultrasound alone.
Which brings us to the never-ending and always tricky question of what to do next. The least invasive way to find out what it is is to do an MRI. Unfortunately, Austin can’t have an MRI with a GFR under 30, nor can he have a CT scan with contrast. There’s a liver function test he could have but it would expose him to a lot of radiation, something we maxed out long ago. Then there’s the possibility of accessing it with a needle biopsy, which comes with all sorts of risks of its own.
When I discussed these options with Austin’s oncologist yesterday afternoon, we still hadn’t done the chest CT (which involves no contrast allowing Austin to still get it). Our first order of business was to make sure there were no suspicious spots or blobs in his lungs. If there were, that would be a huge sign that cancer had indeed spread. Well, luckily, I learned by 6pm that his chest CT was clear. That put us at greater ease about the liver because when Wilms spreads it usually appears first in one lung, then the other lung and only finally in the liver.
Ultimately, our oncologist recommended that we simply wait and re-image in another month. There are a whole bunch of reasons this option makes the most sense: One, it’s probably nothing. Two, all the methods of determining what it is pose risks to Austin. Three, if it actually is Wilms that’s spread to the liver, there’s not much we can do about it. Really, that’s the kicker right there. I mean, in a sick kind of way, what’s the point of us having that information? What am I gonna do with it? I suppose I could pull the kids out of school and make sure they see all the beautiful places of the world. I could take Austin to Disney World for his 4th birthday. I could work extra hard to ensure each day had more laughter than tears.
But I do all that already. I already take them swimming every time it’s hot or say yes to the after-dinner bike ride to the duck pond or park. I’m already thinking about taking him to Disney World for his 4th birthday. I already work extra hard to outweigh the daily scowls with smiles. Life seems short and fragile enough, no matter what a needle biopsy says.
As I was on the phone going over all this with the oncologist, he said that they just got a new computer system that generates data in a different way. As he was scrolling through Austin’s record, he could see a graph that showed that Austin has been treated for cancer in thirty-three out of the past thirty-six months. This struck him and, while it didn’t make his decision for him, it did make him wonder about how much he can do for a patient versus how much he can do to a patient.
Mark and I have learned, in these three long years, and Austin’s doctor has learned too, to make decisions for Austin. And I don’t mean to make them on his behalf. I mean to make them for his own good.