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I suppose it should go without saying that I am a huge fan of love and would never have meant to imply with my “harsh words” that I don’t think it’s a useful and valuable thing to offer up to those in need. It most certainly is.  Offer it up, please, in huge quantities, to all those who need it (which is, technically speaking, everyone). Give it freely and frequently and with abandon. It may not cure cancer or any other medical malady, but it surely is good and necessary. And I would venture to say that, while strong medicine, good doctors, and aggressive treatment — coupled with luck — saved Austin, it is love that saved the rest of us.

I’ve put that another way before which holds true still and that is this: while doctors saved Austin, nurses saved the rest of us.

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Six years and three weeks ago (exactly), I sent out an email to friends and family informing them that Austin had been diagnosed with cancer. I was upbeat and hopeful, providing as many details as I could in that moment, all tinged with a misplaced sense of optimism for what we were about to endure.

My inbox was flooded almost immediately with replies conveying that same hope and optimism, all telling me that we would beat this, we were so strong, Austin was lucky to have us as parents to guide him through this, blah blah blah. Everyone meant well and I thoroughly appreciated their words, but after a while, the messages all blurred into one. Except for the singular and unblurrable response from my college friend in London, which read, “Fucking hell, Krissy, this fucking sucks.” And I laughed and I cried and I saved that message in cyber-eternity because it was the only one that captured what I was really feeling, what my heart knew but my mind couldn’t yet accept: this fucking sucked.

I have used those words many times over the past six years and three weeks . . . too many times, in fact. I have handed them over with as much kindness and comfort as I could muster to a friend whose mother was diagnosed with cancer too young. And another whose daughter was diagnosed with cancer too young. And to the friend who deserved the words most of all after her daughter was killed in a freak accident. And the woman whose husband died of a heart attack after an evening bike ride, leaving her a widow with three young children.

And then I used them yet again, just a few days ago, in a message to a woman I’ve known since Braedan was just a few months old, whose five-year-old daughter, about to start kindergarten at Fairfax, was diagnosed with a brain tumor instead.

Because, fucking hell, what else can you say to that?

I’m not going to tell you their whole story because the husband/father is doing that himself here, so eloquently I’m almost embarrassed by my own blabbering vulgarity. But not so embarrassed that I’ll stop, because if you think I’ve used harsh words before, they’re about to get harsher. I’ve been following their story pretty closely over the past week and have read through all the comments that appear on both parents’ Facebook pages. And they’re filled with hope and love and fervent fervent wishes for the best possible outcome. They are lovely and moving and raw and I’m sure bring some small but necessary bit of strength to the parents. But they are also filled with a falsehood, with a piece of conventional wisdom about illness that gets bandied about as if it’s undeniable truth and it is not.

It is this: that love will conquer all. Time and again, I have seen well-meaning people tell their downtrodden friends that their sick family members will survive because they are loved. Love will save them. Love is more powerful than anything, even, say, cancerous tumors.

I used to like this idea. I believed it and lived it myself the first time through. This was something I could do. I could love Austin back to health, that was one thing I could control. I distinctly remember strolling him outside the hospital one October night, mere weeks into our years-long journey, and thinking that my pure longing could actually save him, that my intense wanting, my unbreakable desire to keep him alive would do just that. And then I realized, with a jolt to my heart, how wrong I was.

Because they fell like dominoes around me. Those children who were nothing if not loved. Ashlie, Ariana, Emily, Seamus, Dylan, Olivia. Did I really think that if their mothers had wished a little harder, if their fathers had loved with greater intensity, if their circles of friends had prayed more frequently or more fervently, that those children would have somehow survived? That is not how it works. Love isn’t enough. It helps; it makes the long days and weeks and months more bearable and much more pleasant. But it doesn’t save lives. It would take you mere minutes with Ariana’s mother to know that her love should have saved a small country’s worth of children. She loved her daughter beyond measure. And Seamus’ parents . . . are you kidding me? There could be no bigger love for a child.

But it didn’t matter. Because it’s not love that saves. And goodness knows, it’s not lack of love that kills (nice message to send to those parents, huh: if only you’d. . . ?). It’s not a question of worth or value or who deserves what. Because every parent deserves to send her sweet child off to kindergarten healthy and whole. And every five-year-old deserves to go.

So, no, it’s way more random than love. It’s just luck. Plain old luck, good or bad. Which is way out of our control.

Fucking hell.

Friday was Austin’s last day of preschool. Ever. So, of course, here’s the obligatory playground photo, along with his previous two Last Day photos:

It’s bittersweet to leave St. Paul’s since it’s been such a major part of our lives for the past six years.  Braedan’s first official day of preschool (after a good two weeks of orientation) was September 21, 2006 … the day Austin was born! So, from that moment to this moment and for every insane moment in between, we’ve been members of that school family. It has spanned all of Austin’s life so far and hopefully the entirety of his cancer, start to finish. It was only fitting that he ended two days after being declared officially and most definitely cancer-free.

As I think back over these past few weeks, I am awed, as I have been so many times before, by the kindness and intense emotional investment of all of you. Your tears and your hugs, the very thoughtful gifts (the dragon-slaying StoryPeople print from the Sweeneys and the key chain featuring my double rainbow image from Becky being my top favorites), your messages of hope and sadness, faith and joy, sustained us through this otherwise heartbreaking experience.

Knowing that you’re out there and that you care so deeply about us, about my child whom some of you have never met, means an enormous amount. I regret that I am never able to properly thank you, but know that I feel you and am fully aware of you. I read the name of each “Like” on my Facebook updates with gratitude and satisfaction (and sometimes surprise). In fact, as Mark and I sat out on the porch last Wednesday with our champagne, we both had buzzing phones in our laps, constantly updating one another with the latest messages of love and relief.

I loved that my brother told me that every time he went anywhere on Thursday or Friday, he was greeted with high fives and hugs, random people congratulating him on his nephew’s good health and even shouting it from the side of the road as he drove past. This has been such a community saga in so many ways, as you’ve followed along beside us for all these years, crying with us, wishing with us, celebrating with us.

(And speaking of celebrating with us, we are going to finally throw a big-ass party and everyone is invited. But we must gather our strength first!)

This round, if you can call it that, was interesting because it was the only time in all of our years of cancer that I felt like it was truly unfair, the first time I ever felt like, “Why me? Why us?” I know it sounds crazy that I hadn’t ever said that before, but — as much as I hate childhood cancer and as much as I’ve raged against its presence in our lives — I also know that it exists and someone has to get it. Someone has to hear those dreaded words, “Your child has cancer.” So I always sort of figured, “Why not me?” I saw no reason I should be exempt from being dealt such a hand. I’ve been given so much, am fortunate in so many ways … why shouldn’t this be my thing?

But this last time, I finally felt this just isn’t fair. We have done it. We fought, hard, and we succeeded. Austin does not, did not, deserve to have to fight this battle yet again. It would have been too much. It would have been, for the first time, completely unfair.

As my brother said, it just felt (for lack of a better term) karmically wrong. Like it just shouldn’t be. And, of course, lucky us, it wasn’t. It isn’t.

At the Family Connections benefit a few weeks ago, right in the midst of our darkest days, a friend told me that I so deserve to have the universe treat me with kindness. Of course, we know that the universe just doesn’t work that way. Bad things happen to good people (and good things happen to bad people). And suffering is not fairly or evenly distributed. But I agreed with her. I really believed at that moment (and in this moment) that the universe should treat me kindly. That I deserved it.

And most of all, more than anything, that this boy deserved it:

And this (toothless) one too:

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.

I know it sounds cliched and a little bit trite to hear people go on and on about how cancer makes you appreciate every moment, how you learn to live life to the fullest and feel thankful for each small thing. But it’s really true.

Everything we do seems to be tinged with a heightened sense of importance, which often leads to a heightened sense of fun. We have filled our past three days of official “summer” with lots and lots of swimming and friends and backyard fires and bike rides and fireworks and even a baseball game.

Friday night we went to Austin’s first Indians game and Braedan’s second (both in a loge — I don’t know what that boy’s gonna think when he goes to a “real” game!).  They thoroughly enojoyed themselves, mostly climbing around on the seats and coloring pictures of Slider the mascot. The night ended with a massive fireworks display, worthy of any town’s official Fourth of July show.

As I sat under the dark summer sky with Austin in my lap and Braedan behind me screeching with delight at the fireworks exploding in front of us, I couldn’t help but think how very very lucky I am for now. Six months ago, we didn’t know if we’d get to now.  I am so so thankful for now.

Well. Wow. What a day.

I’m not usually at a loss for words (and I’ll surely manage to find a few now), but that was just a really great day.

Started off with me and Austin eagerly waiting through 50 painful minutes of the morning fluff on Fox 8 (my deep apologies to anyone else who also suffered through that — if you taped it, just save yourself and skip to the last ten minutes of the program, please!). But finally, there they were. First Mark and Dr. Letterio, sitting side by side with their half-shaved heads, talking about the importance of pediatric cancer research. And then, right when I thought the segment would end without Braedan getting his chance in the spotlight, they scanned back to the anchor table and there he was, sitting adorably on the anchor woman’s lap. And she looked just about ready to eat him up. With good reason too!  He was breathtakingly cute on that screen, all big eyes and pretty face.  I’m trying to find a link to it on their website but haven’t had any luck so far.

Then, by mid-afternoon, Mark and I and his dad were (wisely) in a taxi on our way downtown. A.J. Rocco’s was quite a scene — bottleneck at the door, people pushing their way through, sloshing the cups of beers raised high above their heads. It was reminiscent of my college years thankfully minus the bar smoke.  It was part party — hanging out with friends and drinking beer, and part hospital visit, surrounded as we were by our doctors and nurses strangely dressed in street clothes, not a white coat in sight.

The whole thing had an emotional tinge to it: random people hugging and crying, bits of heartfelt conversation wafting up through the ordinary bar noise. I was honored to meet some of the members of Team Austin we didn’t know, shavees who had simply picked my child from among the others on the St. Baldrick’s site, in part because of his cute smile and in part because they wanted to find someone currently “in the fight” (is he ever).  People who had never met us, for whom we were no more than a figment of the internet, but who nonetheless raised thousands of dollars in our name. And as I was gushing about my appreciation for all they did, they were likewise thanking me, telling me how proud they were to be part of this, how special they felt to be able to do this on behalf of Austin.

And then there was Cori. This woman had hair down to her waist, literally, to her waist.  We don’t even know each other all that well, but she just signed right up, like “Why not?” On her St. Baldrick’s page, she mentioned how when you see a child fall down at the playground, you just go and help, no hesitation. Well, this was the same thing for her: We walk to Fairfax together and wait on that playground, rain or shine or snow (mostly snow) for our boys to come dashing out the door, our little ones antsy in their strollers. We’re “playground friends” as she says. So when Austin “fell down,” she scooped in to pick him up.

She hadn’t raised a huge amount online, a decent amount but nothing worth the length of that hair. So when her turn came yesterday and her name was announced, the MC asked for extra donations. A few of us walked around the bar with leprechaun hats outstretched for people’s cash. Now remember, most of the people there had already given in one way or another, either money or hair. But most hands managed to fish out their wallets and give some more, because she came up with a whooping five hundred dollars on the spot.

And everybody watched with bated breath as the barber sniped off huge chunks of ponytail to donate to Wigs for Kids. And everybody teared up as the buzzer started working its way across that suddenly short hair. And everybody cheered when she stood up on the chair afterward to show how beautiful she looked.

The MC was standing next to me as I was cheering loudly and turned to ask if she was a friend. “She’s shaving for my son,” was my answer at that moment. But my answer right now is, “Yes. She is my friend.”

And that’s not all. Less than an hour later, one of Mark’s colleagues, the other woman on our team, walked in. And her hair was only an inch or two shorter than Cori’s! So the hats were passed around again and I was thinking, “These people just gave, there’s no way they’ll give again.” But give again they did, handing over another $377.  It made me feel a tiny bit guilty, these women with lush long locks willingly sitting on that stage, while I won’t do it and I’ve never even liked my hair! But I’ve suffered enough on behalf of pediatric cancer. I make my sacrifice every day. I’m keeping this hair.

Most of all I felt moved, touched, lucky. I don’t use the word “blessed” very often because it’s too religious for me, but I felt enormously fortunate. Fortunate that my life is so rich with generosity and kindness and friendship and love. That my husband and my children and I are surrounded by such an open and giving community. Yesterday made the heavy burden we bear feel, if not lighter, at least more tolerable. It made what should be an experience seeped only in negativity feel positive.

It made me feel full and whole and lucky. And so I thank you.

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