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Okay. That just about covers it: okay. It’s not fantastic like it was in January. And it’s definitely not horrible like the score from last Thursday. It’s okay. And that’s good enough.
I’ll give you the hard numbers, so you can make some sense of this roller coaster we’re forced to ride each day. Austin’s first GFR score following his December surgery was 83. Then it rose to 99 in January. Last week’s results? 30. Yeah, 30. Today it was 66.
This is pretty much what we expected. I would have been disappointed if 66 was what we were told after last week’s test. It’s not great; it proves that we are indeed harming that kidney with chemo and radiation. But after what we thought we might be up against with a 30 (removing the kidney, starting a long two years of dialysis), 66 is good enough. It’s all relative after all.
We can continue with in-patient chemo as planned this Thursday, Friday and Saturday. The dose will have to be adjusted, as this particular drug is the hardest on the kidney. But we can carry on, at least through April, to the end of our scheduled 18 weeks.
And then? Well, and then we’ll have to sit down with our doctors and look long and hard at the benefits versus the risks of adding another 12-week round. We’ll have to make those awful decisions again, trying to peer into a cloudy crystal ball and predict whether more chemo will do more good or more harm, whether the cancer is gone or just in hiding, at what cost the kidney is worth saving, at what cost the cancer is worth attacking.
Not really looking forward to that. But for today, it’s good enough.
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.
One of the features on WordPress allows me to see which pages on my blog people visit and each day, there are at least several (presumably new) visitors who read the “About Krissy” page. So I just looked at it and, wow, that sure can’t help anyone! It actually says, in those few brief paragraphs, that Austin has “been in remission since March 2008.” Humph. I wish.
So, for the sake of any newcomers (or any confused old-timers), I’m going to give the Cliff’s Notes version of the past two-plus years, divided into three rounds.
Round One began on July 30, 2007 when Austin was diagnosed with bilateral Wilms’ tumor, cancer in both his kidneys. His treatment lasted eight months and included four abdominal surgeries, the removal of his entire right kidney and 40% of his left, and twenty weeks of chemotherapy. The details of that round are summarized on the Austin’s Story page, which is a seriously shortened version of what I wrote on his Carepage between August 2007 and March 2008. Excerpts from those months can be found interspersed throughout this blog as well, especially in this post.
Round Two coincided with the launch of this blog and took place in March and April of 2009. After thirteen glorious cancer-free months, a CT scan revealed a new mass floating in his left abdominal cavity (not in the kidney itself). A biopsy confirmed that it was indeed a Wilms’ tumor and we were left reeling, certain that his cancer had recurred. The tumor was removed in yet another major surgery after which we learned that it was actually an old tumor, and instead of a dreaded recurrence, this episode was labeled the much vaguer (but much better) “residual cancer.” The whole thing lasted a mere three weeks and we suddenly found ourselves back where we’d started.
There was another intermittent event between Rounds Two and Three: In October and November of 2009, we began watching yet another shadow, worried that it might be cancer and necessitate the removal of that left kidney. We thought we had resolved the issue when, lo and behold, the shadow changed drastically which brings us to the present, Round Three.
Round Three officially began in December with the decision to go in and attempt to remove this new tumor while also hoping to salvage what remained of the kidney. I won’t go into all the nitty gritties because they’re posted here throughout December, but the surgery was successful in terms of the kidney but not so much in terms of what it showed us about the cancer. Austin had indeed relapsed, his cancer was back and more vicious than ever. After some gut-wrenching back and forth decisions about whether or not keep the kidney, Austin began another protocol of chemo and radiation, which we are currently partway through.
It’s all here, in a crazy and jumbled fashion. These posts are filled with good news and great news, bad news and horrible news. There is hope and laughter and tears and fear and love and lots and lots of living.
That was the subject line of the email I received this morning from Austin’s doctor containing the results of yesterday’s kidney function test.
Even better than before.
Three weeks ago, his kidney function was on the low end of normal, which was only surprising because it was still within “normal” range at all. Now it’s well within that normal range, right smack dab in the middle of where it’s supposed to be. After surgery upon surgery upon surgery (and a few more surgeries), after chemo and radiation, The Little Kidney That Could is still going.
My response back was simply, “Wow. This kid(ney) is remarkable.”
Nothing more to say than that.
Another thing to check off the list, another accomplishment made, another fear overcome.
Austin had his last radiation treatment today and, just like that, one big thing’s done. Radiation had seemed so scary to me; I’d imagined his skin burning or, at the very least, itching in the spot where it was zapped. This is a kid who gets red and patchy from bathing too long, after all. But no, he had no side effects, nothing at all. Aside from those two Mondays of throwing up, it was as if all they did to him each morning was sedate him and then wheel him through the maze of hallways and elevators from the fourth floor to the basement and back again. Certainly nothing as scary as radiation could have happened to this child who has been running happy circles around me all day.
We did have a long day at the hospital (in between — and mostly before — that happy circle running). He needed another nuclear scan which, rest assured, involves nothing nuclear. It’s just a dye that’s injected into his blood stream that is then filtered through the kidney, offering a good assessment of kidney function by drawing blood on a set schedule over five hours. We did this test again so soon to determine whether his recent chemo and radiation have had any immediate effects on the kidney and also whether we need to adjust the dose of the next chemo, which includes a new drug (also dialyzed by the kidney, of course — couldn’t some of these things be filtered through the darn liver already?).
But he was a champ and when Mark came home and asked Austin what he’d done all day, he cocked his head to the side and said, “Oh, jumping. Just jumping,” which was a pretty accurate account.
The other thing he did, however, was start to lose his hair. When I woke him early this morning (for the last time!), you could see it was thinner right at the spot where he’d been lying on the pillow. Then, as we arrived in sedation and I pulled off his Spiderman hat, it was obvious — this boy’s hair was falling out. I could run my fingers through it and pull out handfuls at a time. All day, it was all over both of us, covering our clothes, getting stuck in our mouths, everywhere. I commented to my mom this afternoon that I wish he’d let us buzz it short and she said, “Oh no, but won’t that make you sad?”
Well, yeah, of course it’ll make me sad, but it’s going to happen. This child will be bald, whether we like it or not. Better we trim it now than spend the next five days with hair falling in his eyes and getting stuck on his snotty nose. So tonight, Mark took my wild-haired boy up for a bath and brought down another bald child. Almost bald at least, with lots of random patches because he wouldn’t sit still (shocking). Looks sort of funny now, but it’ll even out soon enough.
That smile hasn’t gone anywhere though.
I know this whole Mediport business can be confusing for those of you with no experience in the world of cancer (lucky you, by the way) so I have some visual aids courtesy of my far-from-modest (and sometimes sedated) little guy.
This first picture is from November 2007 of Austin with his Broviac line, which always dangled down like that and needed to be kept under wraps (literally — under an ace bandage and a turtleneck) at all times so he wouldn’t tug on it:
The next two pictures show his Mediport when it’s accessed, meaning that a needle has been inserted into it with an IV line hanging down (the “dangly thing”) ready for use. You can see that it sticks out pretty far and gets in the way when, say, you want to be picked up by your mom. (The purple marks are for radiation so they know where to line up the machine’s laser beams, as we call them in this house.)
This next one shows the Mediport when it’s not accessed. Well, the Mediport “button” is actually hiding under that top band-aid so you can’t really see it, but you at least get an idea of how much less cumbersome it is:
And this lovely shot is Austin last Friday, showing his distinct pleasure at being less encumbered:
His Mediport does, by the way, have a clot in it — somewhere in his internal jugular vein, confirmed today by ultrasound, which is why we haven’t been able to draw blood off it. Not sure exactly what that means or what we’re going to do about it but we’ll find out tomorrow when we visit the clinic after (his second-to-last!) radiation.
His blood counts have bounced back up so we’re done with the Neupogen shots, which Mark gave beautifully (and quickly) over the weekend — no trauma to either father or son (or mother, whose only job was to hold child tightly in her lap). Well done, Daddy!
It was a good thing we squeezed in those two normal days, sandwiched as they were between much longer hospital visits. Yesterday, he had clinic after radiation, which isn’t bad except that there is so much waiting involved. Waiting for lab work to return, waiting for doctors to be paged, waiting for decisions to be made. It’s just tedious, especially with a three-year old to drag around, feed and entertain. And then today he needed a blood transfusion so this turned into another seven hour day (too bad I don’t get paid for this!). It’s sad when every department I leave, people call out, “Bye, see you Monday!”
But Austin is the constant trooper, managing to find fun wherever he goes. He’s been a little less energetic (which, in Austin, goes virtually unnoticed) and hasn’t had quite the same appetite as usual, but is still feeling generally fine. His blood counts have dropped significantly since Monday so no more school for a while, but right now he’s sledding with Daddy and Braedan, so who cares about blood counts?
We’ve made it through the first week of Nuepogen shots but I haven’t gotten any better at it. I am extremely slow going in, as I’ve always been on myself (much to the horror and disbelief of those watching me). So when I say we’ve made it through the first week, that’s only because he’s been sedated! A few of you who are nurses have offered to come over and give him his shots and I will shamelessly take you up on those very kind offers. Better he fear you than me. Plus I trust you’ll be a little quicker at it. He needs one tomorrow and Sunday, around 9 am (which I’m sure we can tweak by a little if necessary). Let me know if you’re interested — first come first serve!
He had his mediport de-accessed this afternoon before we left. I’m not sure if that’s the right word to describe it but they pulled the needle out so all that’s left is the button safely tucked under his skin. And seeing how happy this made him almost made all those access pokes worth it. He jumped up and down as he announced to Mark, “They taked my dangly thing out! Look, look, no dangly thing!” and then proceeded to roll around on the floor to show how free he was.
That’s my boy.
We’ve had two very regular, average, normal days in a row. Radiation has gone smoothly (audible sigh) and Austin has even put in two appearances at school. Yesterday, he was all excited about it at the hospital, naming his classmates for the curious doctor and eagerly guessing what they’d do for an art project. Then, true to form, about two blocks from school, he suddenly decided he didn’t want to go. But I put my cancer-mother fears aside and treated this like the almost normal day that it was: I brought him into his room, held him in my lap while they finished the story already in progress, and left shortly thereafter. I did linger in the hallway for a few extra minutes, chatting with the other teachers, trying to get over my own anxiety about leaving him there without me. But I peeked in the window and he was busily working on a puzzle, so off I went to my pilates class.
Today was even better, “more smiles” reported by his teacher. Two days in a row at school, missing only the first half hour due to radiation. Not many kids have that as their tardy excuse! He put on his new snowpants all by himself, climbed the mounds of white stuff to play on the playground, went to Movement class and the library, ate his snack and played with Play-Doh. Just like any other kid. Just like any other day.
Things have been so normal, in fact, that he refused to take a nap, even when I offered to lie down with him (these early mornings on top of his not-so-great nights are killing me). So normal that, after I slaved away all yesterday afternoon making soup from my new cancer-fighting cookbook, both boys ended up eating leftover spaghetti while Mark and I loaded up on powerful antioxidants.
So normal that this afternoon when they asked for the thousandth time if we could go sledding, I came up with my thousandth excuse; really convincing ones like that I hadn’t started dinner yet or needed to go through the pile of mail putting down roots on the dining room table. As the (so normal) whining reached a feverish pitch, I stopped saying no long enough to wonder what sort of memories I’d want them to have of their mother. Should they look back years from now and remember a woman who always managed to organize the mail? (Not likely, trust me.) Who did nothing but feed them, clothe them and drive them to the hospital?
So we bundled up, Braedan out the door in record speed (funny, he’s not nearly that fast in the morning before school . . .), Austin resembling a Michelin man in all his layers of gear. I dragged them in a sled over to the park, which conveniently closes at “Dusk.” Thus ensued a conversation about what “dusk” means, which I initially described as “sunset” until I realized how hard it is to pinpoint when the sun sets if the sun hasn’t come out all day (or week). We settled on that moment when the sky turned from light gray to dark gray and headed home. But before that, both boys and their mom zipped down the hill, squealing as the snow sprayed up into our faces, fear and accomplishment blending into one. It was a quite a rush: sledding on a hill all our own, tears streaming down our cheeks from both the cold wind and the spreading laughter. This is the mom they should have memories of; this is the childhood they deserve.
Today was the first Monday of the new year . . . and boy, did it feel like it.
I did manage to wake up on time (actually, I woke up every other hour to check the clock), but found many inches of snow burying my car. We made it to the hospital (unlike many doctors who reported two hour commutes), only to find that, yet again, not a single nurse was able to draw blood off Austin’s line. I know, this sounds like a lot of high tech medical jargon that needn’t be part of the story and yet, it always seems to nose its way in. His mediport had been accessed last Friday, after our standing-up-from-the-chair mishap, and we left the line in so he wouldn’t have to be poked again all week. But then, for the zillionth time since this thing was inserted two weeks ago, nobody could draw blood off of it. And you can’t use a line if you can’t draw blood off it.
Anyway, what it all boils down to is that what should have been an hour-and-a-half appointment turned into a five-and-a-half hour appointment and what should have been completely painless involved three separate pokes through his mediport site (already sore) with a big ol’ needle and a peripheral IV in his hand when all that failed. Plus, he didn’t get his anti-nausea med before the IV fell out of his hand (while we moved his floppy and sedated body around and around into new positions trying to get blood to flow through his line; again, the bedlam you are able to visualize should suffice), so by the time we made it to the cancer clinic an hour later, he was throwing up all over both of us. Ultimately, all you need to know is that we seem to have fixed the line problem for tomorrow and that it was a huge pain in the ass for both him and me (especially him, but I’m the one who carries that feeling home).
The good news is that his bloodwork came back just where we wanted it and I plan to bring him to school tomorrow following radiation (assuming it doesn’t take an extra four hours!), which we are both very excited for. He hasn’t seen his pals in a month and I think (hope) he’ll just ease right back into his old routine. He certainly still looks and acts like his old self.
As I was recounting the morning’s miseries to my mom she reminded me that, while today went worse than expected, last week went better than expected. And that’s a pretty good trade-off.
We returned home bright and early yesterday morning and things have been remarkably normal. So normal in fact, that I find myself wondering if it was really chemo that came in those double-wrapped “Danger” packages that have to be checked by two nurses against Austin’s hospital name band (which he’s never ever wearing and, if we’re lucky, can be found hanging from his IV pole) to make extra sure they’re giving it to the right kid. This boy has lost not one hair off his head and only the tiniest amount of energy from his body. Not that I’m complaining — if he wants to be asymptomatic, I’m all for it!
We do expect his blood counts to plummet this week (7-10 days post-chemo) which ought to make him irritable and tired and at risk for infection (and therefore sequestered from his usual activities). He’ll have labs drawn tomorrow when we go for radiation (I have two alarms set!) so we’ll use those as a guide for what we’re able to do this week. I’m really eager for him to return to school, albeit on a limited basis, just to maintain some sense of normalcy in his life (and mine). But we’ll just have to play this by ear.
One good piece of news: He’s supposed to get an injection of a drug that stimulates the growth of white blood cells each day for a week after chemo. This is a shot that I’m supposed to give him at home, usually in his thigh (his only slightly chubby part) once a day. He got his first one last night administered by a nurse in the hospital in case he had a rare but serious allergic reaction to it, and then we were planning to start today. You know, I know a few things about injections having had diabetes for almost twenty-four years now. But still, the idea of doing that to my child was not something I was looking forward to. Well, upon the suggestion of a friend, I asked the attending doctor yesterday (who happened to be the chief of oncology) if we might be able to delay the second shot from tonight until tomorrow morning when Austin’ll be sedated for radiation and do it then. He thought this was a brilliant idea! So I’ll bring all the gear with me and inject him while he’s totally out, oblivious to everything. It’s only going to get us through this first week and then I’ll obviously have to figure out how to do it on a squirming screaming child for the rest of chemo, but at least I should feel like a pro by then. Such a relief.
Speaking of reliefs, this whole past week has been a relief. Such a huge weight off our shoulders to know we can do it; to have made it through with such flying colors. I know it will get worse; in fact the next round includes a new drug that I’ve heard is a little rougher in terms of nausea and vomiting, but at least this first week is behind us. This lets us stand tall and move forward with confidence instead of cowering in fear and dread.
You’d think I wouldn’t need reminding by now, but Little A sure is tough to keep down.