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Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793, when I read the news of Rebecca Meyer’s latest MRI.
And it wasn’t good.
And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do? Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years. They need it now, they need it tomorrow.
You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.
She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:
And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:
She is alive, goddammit, and she deserves to stay that way.
Two years ago, on May 3, 2010, Austin and I had an unexpected overnight at the hospital due to high blood pressure, described here in a post aptly titled The Wrong Side of the Window. We were stuck in that god-awful limbo between choosing to remove his kidney and continue with chemo or venturing blindly into the post-treatment world never certain when the kidney would fail or when the cancer would return.
And then, three days later, I wrote this one, (also aptly titled) Never-Ending. Read it because, well, it definitely captures the mindset I was in back then: the fear, the utter exhaustion and frustration and resignation I felt. What we believed was the inevitability of kidney failure and dialysis looming over us, the desperate feeling I got as I looked toward the future, Austin’s future, our future. It just didn’t seem bright.
Yet, my god, it has been so very bright. These past two years have been wonderful, “normal,” right. He has had the chance to just be — which is all I ever wanted for him — to just be himself and be left alone by doctors, to live his life unencumbered by the burdens of disease and hospitals. And we’ve all had that chance: Braedan to be a regular kid, to fight with his little brother without worrying that he’s fragile, to be happy or sad or proud or scared or whatever, and not have any of it tinged by being the older sibling to someone we feared might die. Mark and I have had the chance to just be, be the parents we were meant to be (which is not to say that those parents are anything close to perfect — in fact, we were much more thoughtful and attentive parents when Austin was sick, but anyway …). But just to be normal parents who get annoyed with their kids and yell sometimes when they shouldn’t — and to feel lucky for that. We’re lucky for everything we’ve had in these past two years, every normal good or bad moment.
We read Sylvester and The Magic Pebble tonight and the last lines struck me, as they always do. It’s after Sylvester has been released from the rock and is reunited with his parents who lived, for almost a year, with the belief their son was dead: “When they had eventually calmed down a bit, and had gotten home, Mr. Duncan put the magic pebble in an iron safe. Some day they might want to use it, but really, for now, what more could they wish for? They all had all that they’d ever wanted.”
On the eve of tomorrow, we still have things to wish for (I sure would not be locking any kind of magic pebble in any kind of safe just yet). But it’s true to say that we all have all that we’ve ever wanted. And come what may, it’s been a damn good two years.
In this household, every day is a day of thanks giving. Not that it’s all hand holding and laughter around here (I say after sending the kids to their respective rooms so I can cook for five minutes without breaking up fights), but we are endlessly and eternally thankful for all that we have.
First and foremost, I am thankful that every time someone asks me how Austin’s doing, I can report that he is X months cancer-free (now nineteen) and can add, “the longest stretch without cancer in his entire life.” And I am even more thankful that each time I say it, he’s one more hour, day, week, month cancer-free.
I am thankful that, deep down inside, under the layers of resentment and rivalry, my boys love each other with intense ferocity (and that they still dress alike voluntarily!).
I am thankful that Braedan is earning a reputation as the boy who says Thank You.
I am thankful that both Mark and I still have both our parents in our lives.
I am thankful for a marriage that is, as marriages go, relatively easy: one filled with mutual respect and comfort and support and encouragement and laughter and love. And that in addition to taking care of the lawn and the shoveling, he’s also been known to clean the toilet or mop the kitchen floor, without being asked.
I am thankful for delicious food — yum.
I am thankful that I can do 100 burpies in a row without stopping. Ok, I’ve only done that once and I didn’t like it very much, but I’m still thankful I’m capable of it. (And if you don’t know what burpies are, be thankful for that!)
I am thankful for the extremely mild weather we’ve had this November. Yay for sunshine — we Clevelanders totally deserve it.
I am thankful for strong coffee, good wine and an occasional glass of cold water.
I am thankful to all of you who keep coming back and reading my so-called cancer blog, even when I focus more on the mundane aspects of parenting and home remodeling more than the life and death aspects of childhood cancer.
I am thankful to no longer share my house with an endless stream of random laborers.
I am thankful for dresses with pockets so I have somewhere to hide my insulin pump.
I am thankful that the voters of Cleveland Heights and University Heights stepped up despite tough economic times and supported public education.
I am thankful to have so many venues in which I feel comfortable speaking up. And I am thankful that my voice is often heard and listened to.
I am thankful for brothers who challenge me and love me, even if they don’t always agree with me! (Which is strange since I’m always right.)
I am thankful for friends to laugh with and cry with and share all of life’s important and unimportant moments with.
I am thankful that we have only spent one single night –and not even a whole one, really just a few ER hours — in the hospital over the past year. And I’m thankful that one day, I know we’ll be able to say we’ve gone an entire year without a single hospital overnight. (Austin deserves at least one year like that is his life.)
I am thankful for the scientific research, modern medical technology, and brilliant doctors who saved my child.
And I am thankful for the kindness, caring and love that saved the rest of us.
I am thankful for today, and I am thankful for tomorrow.
First of all, sorry about that crazy formatting in the last post. Because I imported the speech from elsewhere from the Interweb, I have no ability to change it. Oh well, I’m glad so many of you enjoyed it anyway.
Second of all, another month has gone by and tomorrow Austin has yet another ultrasound. He’ll get to go to school in the morning and then we’ll head straight down for labs and tests to check on the liver and, of course, our organ of choice — the kidney. I’m assuming things will be fine but I have always assumed things will be fine, even when they turn out anything but. So we’re ready, I guess, as ready as we can be, aware that our gloriously normal lives could change on a dime.
Whoosh — back and forth, from the land of the healthy and the living to the land of the deadly and the dying. It could happen on any day in any moment. When you’re deep in the dark netherworld of cancer, you can’t imagine ever finding your way out, ever emerging from that dank, futureless place as a whole person. And then when you’re out of it, you can’t imagine ever being thrust back in there; you’re just a regular person doing regular person things, with regular person worries and, cancer — real, deadly, third time around cancer — is just not on your calendar.
No room for that. Nope, not this time.
Today was fine. Long and boring and exhausting the way that standing around an airport doing absolutely nothing all day can be exhausting. And that’s what we did: nothing really, except roll spirals of Play-Doh and paint with watercolors (I on paper, Austin on his legs).
But he was a trooper. Not a single peep out of him when the IV was placed in his hand. I’m pretty amazed by how he handles these physical invasions, minor though they may be. He doesn’t even squeak when he gets his weekly blood draw, and the IV, which I was nervous for, was quick and easy. Funny how his brother screams every time I get near him with nail clippers. Oh well, to each his own.
The blood took seven-and-a-half hours and will hopefully last us six weeks. It blows me away to think we used to have to be there almost every day, sitting through transfusion after transfusion. When you’re so deep in the trenches of cancer warfare, it doesn’t seem as if you’ll ever emerge, as if you’ll ever again live like a normal human being. And then, sometimes without warning, you come out the other side and return to the land of the living, and it’s almost as if it never happened. That way of life that you were forced to adopt as your own suddenly feels completely foreign.
Life once was normal and then, whoosh, it was anything but. And then whoosh, by an incredible stroke of luck or strength or something, life is suddenly normal again.
We’ll take it.
Mark and I went to the Rainbow Babies & Children’s Gala this past Saturday and while we were there, I bumped into a mother I had met on the floor during Austin’s first round of cancer. Her daughter also had Wilms but was diagnosed at a much older age, which is unusual for this disease which tends to strike kids under five, and it had already spread to her lungs.
I remember the day we met: A friend of mine who happened to work at the hospital back then introduced us, thinking we might want to talk since our kids had the same cancer. Well, it might have been the same but our circumstances couldn’t have been more different. We stood awkwardly in our doorway while Austin, having just celebrated his first birthday but not yet walking, crawled around on the floor and her daughter, eleven at the time, walked dizzily about the halls under a cloud of chemo.
We didn’t really have that much to say to each other that first time, both being so caught up in our own insular worlds, so we wished each other well and let it go. But we sure had a lot to say to each other on Saturday, as we stood on the ramp to the bathroom and shooed women past us so we could talk, talk, talk.
Her daughter passed away last summer, which I knew before I saw her so there was no awful moment of truth. But she was okay, this woman, she was doing well. I mean, I trust she has had horrible times and I don’t doubt that she misses her daughter every second of every day. But, even with all of that, she was fine.
Which I found enormously refreshing.
There were no tears between us as we stood there and shared our stories and expressed our sorrow for all the other has endured. We have both had terrible experiences (her’s obviously more terrible than mine), and yet we are both okay.
I am sure that some people would have looked at her that night, all dressed up and cheery, bidding on auction items with one hand and holding a glass of wine in the other, and thought she was faking it or somehow hiding her deep grief. As I am sure that some people look at me and think, “She can’t really be that okay; she must be putting up a front and breaking down behind closed doors.” But it’s not like that. You simply learn to adapt, a child with cancer becomes another (albeit overpowering) part of your life, and you take the horrible and mix it in with the wonderful and you find a way to live no matter what befalls you. You just keep going. Not only because you have to (which you do), but because you want to.
So there we stood in line at the bathroom, two mothers of children with cancer, one gone, one still fighting. We hugged and we smiled and we even laughed. But we never cried.
Because we are both okay.
If you were a fly on the wall in our house three weeks ago and then again today, you’d have trouble noticing anything different. Two little boys playing, tussling over toys, begging for jelly beans (well, there are definitely more jelly beans than there were three weeks ago!), two parents watching over them, trying hard to balance the easy fun with important life lessons. You may notice the older son whining a bit more and the younger one struggling to sleep at night. You may notice the parents looking a little more pensive or a little more tired (see above statement re younger son struggling to sleep at night). But you would never ever be able to guess the emotional turmoil, the seismic shifts in perspective, that had taken place in the course of fifteen days.
The good news right now is that the doctors seem to be considering this episode something other than a recurrence. “Residual tumor” I think is the way to describe it. It can be quite confusing for those of us not trained in oncology but it seems that some teeny tiny microscopic cancer cells were left inside Austin’s belly following the October 07 surgery. Now remember, that surgery removed four tumors and 40% of his kidney. And the surgeons were trying very hard to remove as little of the kidney as possible, so they may have left behind a few (invisible) cancer cells here or there. Those little cells would have then been treated by chemo for almost five months (which is why the tumor they removed last week looked like it had been through treatment) and then, ever so slowly, they would have grown (because Austin’s type of Wilms’ was mostly resistant to chemo) from teeny tiny almost non-existent cells to a one-by-two-centimeter tumor that finally showed up on a CT scan one year later.
This little fact (whether or not this is actually an official recurrence) is enormously consequential in terms of Austin’s longterm prognosis. The survival statistics for Wilms’ tumor recurrences are horrific, so awful that Mark and I only discussed them in hushed tones, as if to speak them aloud would have made them more true. I certainly couldn’t bring myself to type them here — it was all sad enough to begin with. But now that we feel a little safer, here they are:
Depending on which piece of research you’re reading and which category of Wilms’ you’re talking about, the five-year survival rates after recurrence range from 23% to 43%. Twenty-three percent. Or the good stuff, the research that we actually felt optimistic reading: forty-three percent! Basically, for every 100 kids with a recurrence of Wilms’ tumor, three-quarters of them die.
Not acceptable, not even close.
Imagine, god, just imagine if someone offered your child a sippy cup of juice and there was a 67% chance that it was instead a deadly poison. Or if your pediatrician suggested a new vaccine that kills kids 57% of the time. Right. You’d run screaming for the door. No parent should have to look at numbers like that in regards to their child’s life. That is not right.
But that’s where we were two weeks ago, that is the thought we lay down with each night, often with Austin asleep between us. That is the thought we carried with us through each day, trying to keep things as normal as possible, trying not to let Austin get away with hogging all the toys, trying not to yell at Braedan if he so much as looked sideways at his suddenly fragile little brother. There was a sense of desperation — how long will it take? How long do we have? But there was also a slow and reluctant acceptance. We simply had to face reality, we could not go on with our heads in the clouds refusing to see what lay before us. We were both, for the very first time since all this cancer business began, we were both starting to accept the idea, the possibility, the probability, that we might live our lives without him.
And now, suddenly, remarkably, we find ourselves almost back where we were three weeks ago. A little blip, a slight detour on our cancer journey. Austin is recovering, there is no treatment plan looming ahead of us (and cancer without cancer treatment doesn’t seem so bad), the official stats should be back in the 80% range. And life goes on. The boys are none the wiser: Austin is sore and Braedan hyper, but a few weeks from now, all will be well again in their world.
But Mark and I know. Mark and I will live with that feeling for a long time. Our time with him feels a little more precious, our hold on him a little more tenuous, nothing is certain, there are no guarantees.
That fly on the wall might not be able to see it, but we are changed.