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What I really wish I had said out loud to all of you on Saturday night and what I have felt in my heart since Austin’s first diagnosis with cancer, five years ago yesterday:

On July 30, 2007, our near-perfect world was flipped on its head with the discovery of five tumors on the kidneys of our ten-month-old Austin. There are so many analogies we’ve used to describe our long and complicated journey with pediatric cancer; the first was that we felt as if we’d been plunged into a foreign land, complete with its own language and customs, its own definitions of “normal” and “okay,” its own hierarchy of authority. A world that we never intended to visit and a world from which we had no clear way out.  We’ve also used the battle analogy, a common one for cancer patients, best described here in Fighting Words.

But my favorite and the one most fitting to my life is the marathon analogy. Mark and I, and Braedan and Austin, were forced to run a marathon for which we had not trained. In fact, we had no intention of running anything at all until the very moment we found ourselves standing at the starting line. And this was no ordinary marathon; this one followed no accepted and enforced rules. The course was changed on us numerous times — we’d come around a corner, usually after a particularly grueling hill, and we’d expect to see a finish line or at least a halfway mark, but nooooo, it had all been moved. Some evil race organizer had switched the mile markers and moved the finish line, over and over again. We never knew when to conserve energy or when to kick it in high gear. We never knew how much more we’d have to take and how horrible it would be.

Every time I’ve run a marathon, I’ve put my name on my shirt. This is a very strategic and effective move: I want people to cheer for me. No, more than that, I need people to cheer for me. When my legs get tired and I wonder how on earth I’ll be able to run one more step, let alone nine more miles, I need to hear some stranger on the sidelines call out my name, “Go Krissy! You can do it, Krissy!” And I do. That one cheer makes me pick up my pace, I hold my head higher and I keep on keeping on.

I put Austin’s cancer on my shirt. Every day, on the Carepage and then the blog, I wore it emblazoned across my chest, for all the world to see: this is what’s happening, this is what we fear, this is what we need, this is what we hope. I did it not because I wanted you all to cheer for us, but because I needed you to.  I needed you to know what we were going through each step of the way so you could go along with us. And go along, you did. You cheered wildly when things were good, you pushed us along when things were rough. You held us up when we thought we’d fall over, you helped us choose our way when the course pointed in two completely different but equally terrifying directions. You even offered to run parts for us. You said, “Here, rest, just for a moment, just for a mile. Let me hold this burden for you.” The rules don’t allow that sort of thing, in running or in cancer, so instead you ran along beside us. And when we couldn’t possibly fathom taking one more step, you told us we could, and we did. You told us we were strong and that made us strong. You told us we would make it and look, . . . we made it. We crossed the finish line, with arms held high in victory. This race is finally, finally over. There may be another race in our future, but we hope to be better prepared for that one. And no matter what, we know you’ll be there cheering yet again.

We made it. And you were there every step of the way. And for that, we thank you.

On July 31, 2007, our very first night on the pediatric oncology floor, our pediatrician came to visit with me and Mark to help prepare us for what lay ahead. He described the journey we were about to embark on as a marathon, one we had not trained for (except that we’d been training since the moment we became parents), one we didn’t sign up for, but one we had to run nonetheless.

I know a thing or two about running, having completed four full marathons and countless half marathons, including Cleveland’s half this morning. I know that no matter how well-trained you are, there is always something beyond your control, some seemingly small sore spot that can cripple your run. I know that no matter who you train with or start out with or chat with along the way, the race is yours alone and no one else can take a single step for you. I know that you have moments when you feel completely unprepared, cowed by the hill in front of you or the almost endless stretch of road still to come, when you wonder what you got yourself into and how you’ll ever get yourself out of it. And I know you have moments when you feel strong, on a slight downhill, wind at your back, like you can fly, like you can do anything.

Without question, this cancer journey has been our marathon. There’ve been twists and turns we never anticipated, there have been steady even stretches where we get into such a groove we almost forget what we’re up against. There’ve been steep uphills where continuing seemed impossible and bursts of speed to push us forward. And there’ve been fans.

Race fans may not know their impact (and judging by today’s strangely quiet crowds, they may not know how much they’re needed). But fans are a completely necessary component of a long race. Perfect strangers calling out your name and urging you onward, giving you strength and hope and courage, make a huge difference. As do the “fans” we’ve acquired along this journey. You may at times watch silently from the sidelines but we see you there and we know that when you’re really needed, you’ll speak up and cheer us on, reminding us of the strength we already have inside.

This race of ours is certainly not over. We’re due for five days of chemo starting this Thursday, pending the enormously consequential results of tomorrow’s GFR (kidney function test). And then three more rounds of chemo after that, with an estimated finish in early August. We’re more than halfway, which is a huge accomplishment, but just like in full marathons, that last half is always harder than you think.

We’re a little beat down, muscles sore and tired from overuse, chasing an ever-moving finish line. But we’ve been training for years now and we’ve learned an awful lot, and oh I do love to run, so we set our sights a little farther down the road and we dig a little deeper and we let the cheers of our fans lift us forward. And we know that we will finish strong.

Oh, and in case you’re wondering: 1h52m. Strong enough.

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