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We’re still waiting for the official results, but a few hours ago I did get this text from Austin’s oncologist:
“So far, so good. I’ll call later with the final results.”
So, there you have it. Now you know as much as we know. And you can feel as relieved as we feel.
In the Time-Never-Slows-Down category, Austin has an MRI of his abdomen and CT scan of his chest tomorrow to check for signs of cancer. These are his “end-of-treatment” scans which might be a serious misnomer. Or might not. We’re only officially scheduled for one more three-day round of chemo, which will bring us successfully (or not) to the end of the first eighteen weeks of treatment. So we could be a mere three weeks from the end. Or not.
A lot hinges on tomorrow. Obviously, if there’s any cancer growing anywhere, we will continue with chemo. And if there’s cancer growing in his kidney, we would stop all the hemming and hawing and how-ever-can-we-save-this-little-organ? and just go ahead and remove it, dialysis be damned. If there are signs of cancer in his lungs, which is the spot Wilms tends to migrate to when it spreads, then we’d probably keep the kidney but start anew with some heavy duty chemo.
But if there’s nothing, no shadows or dark spots or lesions or masses, . . . well, then we have some options. We could decide to submit the kidney to more stress and do another twelve-week cycle of the chemo regimen we’re currently in the midst of. Not only might this damage the kidney, but it would surely take his bone marrow down another notch, since each period of “count recovery” leaves us a little lower than when we started. Picture a line graph with continually descending peaks: Each time we finish chemo, his blood counts dip. But after a few weeks, they rise back up (which allows us to start the next chemo), but each starting point is a little lower than the previous one. This cumulative effect can continue until eventually Austin’s “good” blood counts will be as low or lower than his original “bad” blood counts. When the bone marrow is depleted in such a way, treatment is often halted and then the patient becomes eligible for a bone marrow transplant which is no walk in the park. So, those are the two big risks of continuing chemo: depletion of bone marrow and destruction of the kidney. Plus, of course, that little fact that chemo can cause cancer, namely leukemia down the road.
Chemo, of course, also kills cancer which is (duh) the reason to continue. In case there might be some teeny almost invisible cancer cells lurking around in there, waiting for us to cease our attack before they rear their ugly heads again. But what if the cancer’s already gone? What if we did enough with 1) the surgery, which removed almost all of it, 2) the radiation, which would have targeted any remaining cells in that area, and 3) chemo, which should have destroyed any cells hiding elsewhere in his body? So, maybe we’ve done it, maybe we’ve already beat that damn cancer. And in that case, doing more would only do harm.
Oh, decisions, decisions. Huh. First, let’s get to tomorrow. And hope for nothing new. After all, our hands are full enough already.
Austin is not in renal failure. No, that’s not some miraculous reversal of the past few days’ news; I just wanted to make sure you all understood that it hasn’t happened yet. All of this action we’re taking is designed to prolong the life of that remaining half-kidney as long as possible. The slow decline has indeed begun but we want it to be a good long while before the final withering away.
Remember that he won’t be eligible for a kidney transplant until he is cancer-free for two years. And we haven’t declared him cancer-free yet so those two years haven’t even begun. The immuno-suppressant drugs transplant recipients have to take can cause malignancies to grow so there is absolutely no way around that hard-and-fast rule.
So, we’ve increased his blood pressure medicine. And he’s hooked to IV fluids for eight hours overnight, with a little pump lying next to him in bed. It took a home care nurse to wisely suggest to my stressed out mind that I turn it on right before I go to bed (instead of when Austin goes to bed), thereby eliminating a 4 am finish. Brilliant. And we’re going to stick to this diet to the best of our ability, knowing that some slip-ups now and then will not be the end of the world. It’s not like the constant on-your-toes watchfulness of parents whose children have fatal allergies and can’t withstand even a crumb (or sometimes a whiff) of peanut or milk or what-have-you. If he has some cheese, well, then he’s a happier boy. Plus I learned from one of the kidney docs yesterday that he can take a chewable Tums before each meal which will bind the phosphorous (the dreaded ingredient in both dairy and soy) so it doesn’t seep into his bloodstream and then he’ll just poop it out. Perfect.
So, I’m feeling a little better. One thing I noticed after yesterday’s post is the arc that my writing often takes. I start off down, complaining about the latest medical misery to befall us, but as I near the end I am cognizant of not closing on too gloomy a note. I don’t want to leave you all feeling helpless and hopeless and so I force myself to find the shred of good and to focus on it and to give you some hope. And in doing that, I give myself some hope.
It’s another variation of this post, but it’s more internal. I write that we’ll be okay and then I believe that we’ll be okay. My fingers type the words of all we have to hope for and suddenly I’m reminded of all we have to hope for. So you see, you are more a part of this than you know. I am writing for myself, no doubt, but I am writing for you too and that shapes the arc of what I say or how I say it. You may feel that you’re not doing anything out there, just reading all alone at your computer each night and feeling sorry for us, but you are. It’s more powerful when we hope together.
I’m still mad. Now I’m mad at food labeling laws for not requiring measurements of potassium and phosphorous on packages. Oh, and I’m mad because the “Foods to Enjoy” sheet lists apple juice right alongside cranberry juice and yet the Cran-Apple I bought claims it has 15 milligrams of potassium (super) while the apple juice box claims it has 350 milligrams of potassium (definitely not super)! Where’s the sense in that?
I’m trying not to be too mad at Mark since clearly the cran-apple-apple debacle is not his fault. And I’m trying not to be too mad at the boys because clearly none of this is their fault either, least of all Austin’s initial dislike of rice milk. But I am tired. I just want his life to be normal. I want us to move those marbles, beat this beast and then be done with it. I want fighting cancer to be our one Big Thing, our life’s challenge. And lately I feel like this is just the tip of the iceberg, like we’ve only just begun and there will always always be some major health crisis in Austin’s life and in our lives, like we will always be facing the next big thing.
But — deep breath (and sip of wine) — we’re home now and the boys are asleep side by side in Austin’s bed. When I go up, I’ll lift Braedan’s rapidly growing body and deliver him to his own, so neither one’s middle-of-the-night wiggles wake the other. And tomorrow we’ll figure out how to adapt our Sunday breakfast of bacon (Braedan’s favorite) and cheesy eggs (Austin’s) to fit the new diet restrictions. And I’ll search for more recipes to ensure he doesn’t live solely on buttered noodles. And the anger will fade and maybe the hope will grow. We are trying new things, after all, like reiki to improve kidney function. You should see Austin giggling and squirming while those hands float above him, trying to focus all that energy and heal that poor kidney. There are reasons to hope.
So, somehow, as always, we will deal. With this too, we will deal.
Every time we are faced with a new obstacle, I feel overwhelmed and pissed off and sad and convinced that this one is it, this is the one that will bring us down, that will change who we are, who he is. And every time I’ve been proved wrong. Every time we’ve ended up okay.
I’m hoping the same is true this time.
I am furious right now about the kidney. I’m not mad at anyone in particular, I know it’s no one’s fault, and yet I’m mad at everyone. I’m mad at our doctors for giving chemo and radiation even though I know that is what’s saving my child’s life. I’m mad at myself for not keeping him super-hydrated all the time at home (even though no one ever told me to). I’m mad as hell as the nutritionist who handed me that absurd pile of papers today describing the “renal diet.” I’m really really mad at the renal diet itself, as that is the current source of all my anger and frustration and worry.
I know, silly, right? It’s a diet, just recommended lists of foods to enjoy, foods to limit and foods to avoid. But it is so terribly restrictive and, in my mind, so unhealthy. Take for instance, that fact that I can not give Austin whole wheat anything, but instead have to resort to white: white bread, white pasta — stuff my kids have barely ever had. I’m no perfect mother feeding her children all natural health food all the time; in fact, I often find my self plagued with guilt and worry that their diets consist too much of “kid-friendly” junk food. But I at least give them whole wheat bread!
But no, now he can’t have bananas or tomato sauce or cantaloupe or raisins or edamame beans or even baked beans. And the real kicker is that my Austin, who survives almost entirely on cheese, yogurt and milk, can now have no more than one cup of dairy — including soy — each day. Oh, I cringe when I imagine the battles that are going to take place in front of our refrigerator as he gets used to this.
But we have got to protect that kidney. We have got to do everything we can, even have knock-down, drag-out, biting-mommy-on-the-shoulder-until-she-hands-over-my-muenster fights in front of the fridge to do that. We need it to last two more years. At least, at least, two more years.
I was rereading some of my earlier posts, written in December as we were preparing for chemo, and I was struck by how pessimistic I was about the whole thing, by how very worried I was for all of us, certain that we were on the verge of disaster. And then I was struck again by how much better these past few months have been than we thought they would be, by the fact that we are still a happily functioning family, by the fact that my boy still races around with a smile on his face, full of energy and light and laughter.
So maybe the renal diet will be the same way. Maybe I’ll find new recipes online and we’ll toss the string cheese and Austin will just adapt. And maybe, just maybe, the little kidney that could will do some more.
All along, throughout this entire cancer journey, the function of Austin’s kidney has been a guidepost for us, a signal of which way the wind is blowing. It has given us hope, it has given us something to fight for, it has at times taken on enormous (and perhaps undeserved) significance as the determining factor in whether we felt good or bad, victorious or defeated, hopeful or hopeless.
And now it seems on the verge of failure.
Not right away, this won’t happen overnight. But it is definitely starting. His pre-chemo lab numbers this morning were not good, although they did improve after several hours of IV hydration. In fact, his doctor wants us to go home with “fluids in a bag” for next week. We’re also moving up his end-of-treatment scans (MRI and chest CT) to next week, before any more damage is done.
We’re not sure what all this means yet or how long the kidney might still last or whether it might pick back up again when the immediate stress of chemo is gone. But I’m sad. Sad for my little guy, sad for us all. Sad for that kidney that has been so traumatized and yet worked so hard, that has gotten back up after being knocked down so many times.
Yesterday Austin had one of his little preschool friends over for a playdate. We were talking a bit about school and how Austin misses being there and I gave a quickie explanation of how his medicine sometimes makes him more vulnerable to getting sick so he can’t be around all the germs and so on. And this sweet little four-year-old shook his head and said, “But medicine is supposed to make you UNsick.”
Ah, if only four-year-olds ruled the world.
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.
No results yet from today’s test but have a timely post to share nonetheless.
Parenting is full of big moments, both good and bad. Significant decisions, momentous occasions, important milestones. But sometimes it is the little moments, those small joys of parenting, that mean the most.
Snuggling in a thunderstorm, like we did last night, is one of my great joys of motherhood. The young child is awakened by the boom of thunder, cries out in the darkness wondering what just happened, immediately calmed by your presence at the door. What starts out as scary morphs into a middle-of-the-night adventure with Austin snug between us watching for flashes of lightening out the window, a grand fireworks display in the night sky. As you start to doze off, another clap jolts you back awake, little fingers gripping yours, small heart beating in your ears. Finally the rumbling would get more distant and the pause between lightening strikes would grow, grow, grow until they were none. And that small body would nuzzle in so close, so tight, drifting back to sleep.
Nothing can get to us here. Cancer is but an idea. Kidney failure insignificant. We are together in that big bed and we are safe.
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.
After last week’s emotional high, we’ve begun that speedy descent downward. Well, no, that’s not true, we haven’t begun it yet. It’s more like we’re perched at the top of the roller coaster, having slowly crept up with the creak creak creak of the wheels and are now poised at the top, awaiting the plunge. Only this plunge is not for fun.
Last Thursday, Austin had another of those major kidney function tests, a GFR, where they take a series of blood draws over the course of the day to see just how well the kidney can filter out the test-fluid they first inject into his blood stream. This is the one (also called a “nuclear scan”) that we were so pleased was normal back in December following the kidney-sparing surgery and then were even more pleased in January when it was even more normal. Well, his result on Thursday was so far from that, so totally not normal, that they think there was some sort of “interference.” I have no idea what might have interfered with the results, but I hope something did because if that score is correct, the kidney is pretty much done for. As in just-go-ahead -and-remove-the-damn-thing-now-so-we-can-finish-chemo done for.
Not panicking yet. Worrying? Yes. But not panicking. He doesn’t appear to be in kidney failure, for what that’s worth. I mean, I think we’d notice something. His weekly lab results are fine, he’s not puffy, still peeing, the whole bit. So we wait for the repeat test, which will happen on Tuesday, and take it from there.
Perched at the top of that roller coaster, not sure when we’ll fall.