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A few months ago, I happened to catch part of an interview on the radio with Willie Nelson. Must have been NPR or something, I don’t completely remember, but I do know that he was asked if he could recall the single greatest moment of his life. He hemmed and hawed a bit and eventually settled on something great with a lower-case g, a relatively mundane and everyday activity like playing with his kids or walking with his wife or performing on a stage (everyday for him, at least). Now, it’s likely that Willie Nelson simply can’t remember every hazy, blurred-by-pot moment of his life. But it’s also possible that sometimes the “best” moments are just moments, the simple every day interactions we have with those we love: sitting on the porch with great friends eating delicious food, drinking wine and laughing til your stomach hurts. Or snuggling up in bed with your two sweet boys on a lazy Sunday morning. Or knowing, in a quiet, easy sort of way, that you picked the right man with whom to spend the rest of your life.

My best moments, for the most part, are small: Austin dashing out the kindergarten door every afternoon and literally jumping into my arms, half big boy with his backpack slung over his shoulders and half sweet baby who just can’t wait to get back with his mommy again. Or Braedan leaning over after a particularly long chapter of Harry Potter to kiss me on the check and say, “Thanks, Mom. You do great voices.”

But every once in a while, there is a moment. A “The Moment” kind of moment, great with a capital G. I had one of those one year ago today. I was exhausted and worried, more worried than I had ever been. I was trudging through each day, living by the motions only, trying with minimal effort to enjoy those beautiful spring days, the last before the storm of relapsed cancer and kidney failure that I felt certain was about to come. I still held on to a tiny shred of hope, planted in me by a double rainbow that appeared right when I needed it most. But it was tiny, that shred, so small I could barely grasp it.

The day, Wednesday, May 23, was long — as hospital days are wont to be. Following Austin’s MRI, we had returned home mid-afternoon and, when he seemed fully recovered, actually thought we might make it to his 6 ‘clock baseball practice. So we ate a super early dinner and I sent him up to change into his gear. When he returned instead in footie pajamas, shivering from the after-effects of anesthesia, I knew practice was unlikely. Now I have a funny sense about needing to fulfill obligations and still thought we should go.  Mark, on the other hand, is a bit more relaxed about such things and can see that a 5-year-old’s tee-ball practice falls pretty low on the must-do list in life, especially when you think said five-year-old might be dying, so our plans quickly changed and home we stayed. And good thing. Because mere minutes after the boys had trooped upstairs for baths, I went to check, yet again, for either voicemail or email containing some kind of news from our day’s tests. As soon as I walked into the office, the home phone rang and, glancing at our doctor’s cell number I picked up with a pithy, “Well, I’ve been waiting for you to call.”

“I’m on my way over,” he said, without introduction. Oh. Oh. This man has come over before. And let me tell you, it’s never been for anything good. So all I could manage was sarcasm: “Oh, you must have good news to share, huh?”

“Yes,” he said in a voice both earnest and urgent. “The best news. I’m about to pull in your driveway.” And that’s the thing that gets me now when I look back at that day and can’t help but think, What if we’d gone to baseball practice? What if we were suffering through pop fly drills on the playground at Boulevard instead of at home when he pulled into our driveway?

I yelled up to Mark but the bath water was running and god knows the boys are never quiet, so he heard nothing until the doorbell rang two seconds later. I was right there, Jeff didn’t need to ring the doorbell at all; I’d been watching out the window for his car. And he walked in the door waving the official results in his hand and I couldn’t quite hear what he said beyond, “He’s fine; it’s nothing” and I cried and cried and cried in his arms like I’d never cried before. And Mark, hearing the doorbell, had come to the top of the stairs and could only see us down there both crying and his poor heart stopped but only until he heard laughter in our tears. Laughter in our tears because this was the best news. The best news.

And that will remain forever as my Willie Nelson moment, my best ever, stands-above-all-the-rest kind of moment. But now, as this month of dwelling and reminiscing comes to a close, I look forward to much smaller moments. If I get nothing greater for the rest of my life than swinging on the swings alongside my family at our small Point Chautauqua playground with my feet hitting the sky as the sun sets brilliant purple and pink and orange over the lake, I’m okay with that. That’s plenty big for me. I’ve had enough big moments for one lifetime.

Yesterday was our last day as patients at Rainbow. No, we haven’t magically moved to some elusive category of you’re-so-healthy-you-need-no-more-follow-up-care (but if such a category exists, I’d sure like to be placed in it someday). No, no, instead, we are switching hospitals.

I know, that one came as a shock, right?  We love Rainbow, that much should be obvious. We have been thrilled with the care we’ve received there over these five long years and I can honestly say that I feel at home whenever I walk through those revolving doors. So this change is not exactly our choice, but it’s necessary nonetheless. We’ve been chasing health insurance for a while now, constantly switching carriers in order to stay at UH, with ever-dwindling options. Our most recent best option shouldn’t ever have the word “best” attached to it as we’ve been paying 80% of our care at Rainbow out-of-pocket since January. With a kid like Austin, let me just say that that ain’t cheap.

But we’ve been unwilling to leave Dr. Auletta until we felt confident that Austin was well, and reluctant to leave him even then. And now, alas, he’s leaving us. It is for the best, for him professionally and certainly for his family. And we support him in this move entirely, knowing that he can achieve greatness in a position created especially for him and his expertise at Nationwide Children’s in Columbus. Yesterday was his last day at Rainbow, hence the uncharacteristic “clinic of miracle.” There’s a reason those patients were his; he made those miracles happen. He absolutely put his heart and his mind and his energy into caring for his patients every single day, going above and beyond for all of them. For all of us.

So yesterday, we said goodbye to Dr Jeff. And with his departure and Austin’s good health and our ever-changing health coverage, we said goodbye to everyone else too. To the nurses and receptionists, to the ultrasound technicians and coffee baristas. Most of the goodbyes were silent, in my head only, as it would have been too hard to verbalize all that I felt. There were a lot of “It’s not goodbye, we’ll come back to visit.” And we will.

As we meandered the hallways moving from one department to another, I was keenly aware of the days and weeks and months and years we spent inside that hospital. Over many seasons, from one hot humid summer through several seemingly endless winters. A couple of springs and even more falls. For holidays and birthdays, Austin morphing from a nursing babe-in-arms to a toddler in a stroller to my current tumbling schoolboy cartwheeling down the hallways (yes, he did that). He entered that hospital not yet knowing how to walk and he leaves it having just learned how to read.

He grew up in that building. We all did.

And when we walk into the Cleveland Clinic next year, there will be no familiar faces, no exclamations of “Look at him! Is that really our little Austin?” No friendly waves as we pass by no-longer-needed departments, no hugs as we step onto the elevator to find a friend, no chance for Austin to say, “Hey I remember that fountain. I love it there!” I’m sure the Clinic will be fine. I’m certain we’ll receive good care there.

But there’s only one Rainbow.

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.

As we near the one year mark since the end of Austin’s cancer treatment, he has a series of appointments, scans and lab work scheduled. Today was a visit with his kidney doctor, our first exclusively with her since early last summer.

All in all, he’s doing very well and is perfectly positioned in the fiftieth percentile for both height and weight. This is a really good sign since kidney disease can negatively impact growth and I was getting a bit worried that he hadn’t been gaining enough weight. Turns out he has stretched from his once chubby short self to a new long lean self (sounds nice, doesn’t it?).

We reviewed his blood pressure medicines and decided to take him off one in favor of another. I’m pleased about this because the one he’ll soon stop is a diuretic, making my four-and-a-half-year old very dependent on nighttime diapers. He pees like crazy between dinner (when he takes that particular med) and midnight, often leaking through his diaper . . . and sometimes leaking through two diapers! Mark and I have considered this as a minor and manageable side effect (I mean, really, if washing his sheets every other day is my biggest worry, I can’t complain much), but Austin himself has been increasingly concerned about needing a diaper. In fact, when he went to his cousin’s eighth birthday sleepover, with boys much bigger than him, he told me ahead of time that he was going to change in a different room so “nobody would see.” Of course, as a parent, making sure your child feels that he belongs and won’t be made fun of is of utmost importance, so I’m eager to try this new route.

She ordered a bunch of labs — the renal panel we usually get, plus some measures of bone density and vitamin health — but we won’t get them done until his next blood draw in a month, so there are no new numbers from today. She did say that based on his recent creatinine levels, his kidney function is around 50% (as estimated GFR of 53). Not bad considering it was below 30% last spring and summer. Of course, there’s no way to know if the kidney will continue to function this well or if we’re in something of a honeymoon phase, but we’ve learned to take what we can get. If it’s the same at the golden two-year mark (when, from an oncological perspective, he would be eligible for transplant), we would not transplant him. Transplants aren’t allowed, or covered by insurance, unless a patient’s kidney function is below 20%. So, hopefully (always, always, everything is tempered by hope), we have a ways to go yet before that step.

Another day, week, month, another appointment, scan, test . . . we have our Austin, he has his kidney, and all is good.

Last Tuesday, we went to the Natural History Museum and I took some photos of the boys sitting on the stone bear outside, right where we’d taken pictures last March. Check out the difference:

More hair, same big smiles

To see these images of my boys sitting in the exact same spot, just eight months apart, makes me appreciate just how far we’ve come. A long long way.

So long, in fact, that it’s time for more scans. This Thursday, he’ll have his usual monthly labs and abdominal ultrasound, followed by the every-three-months chest CT. It’s always a little unnerving to go through these tests. I don’t actually believe that anything bad will show up, but I can’t help but play out the scenarios in my mind. I always imagine the conversation with our doctor, the heavy “Can you talk?” on the phone, the stunned silence, the devastation, the resolve to fight yet again.

Or the opposite, which is what we should get, better get: The happy news, no changes, all clear (or mostly clear, which would be good enough). The relief, one month closer, another small victory to celebrate. A long way. We’ve come a long, long way.

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.

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.

than before.”

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.

February 2020
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