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I never intended to stop blogging after Rebecca died. It just sort of happened. I’d been writing a lot, mostly about her, then summer got underway and when the next big thing worth sharing was our trip to Brazil, and when that trip included the “tragedy” of sitting on a flooded freeway for seven hours instead of watching the USA versus Germany game that we had traveled ten thousand miles to see, I somehow had enough perspective to just not write at all. And then it went on, the summer days turned into fall and inevitably winter, and now I haven’t posted in more than half a year. I almost laughed recently when someone said, “Oh, I read your blog all the time,” and I thought, “Really? All what time?”

But anyway, I’m back. With much to say, including an eventual hilarious run-down of that large and at times infuriating country to the south of us. But right now, what has really drawn me back is that St. Baldrick’s season is upon us yet again. Our 2015 event is well under way, with over 30 participants already signed up and nearly $1,500 raised (record-breaking at this very early stage of the game).

Last Thursday, St. Baldrick’s announced their 2015 Ambassador Kids to the world. I know the date because immediately after reading though their stories, I shared the news on Facebook. As always, they’ve chosen five children and teens from across the country with different types of cancer who represent the spectrum of treatment status — from the child in treatment, to the child who’s “cured,” to the one who’s relapsed, to the one with no evidence of disease. And of course, always, they choose one of the five who has already died. Because that’s the stat we all live with. One in five. Who’s it gonna be?

I cried as I read through their stories, as I always do, but I was filled with admiration for all they’ve overcome thus far and hope for all they have ahead of them. But I was also filled with something darker, a tiny inkling of dread. A nagging thought, deep inside myself, that I couldn’t even articulate at the moment: One in five didn’t seem like enough for this bunch. One in five seemed awfully lucky.

A few nights later, no wait, let me be more precise: TWO nights later, as Mark and I were getting into bed, he said, “I hate when I get these emails from St. Baldrick’s that so-and-so has just died.” “What? Who died?” He held up his phone to show a girl, 12-year old Caroline who I had just read about. What was he talking about? He is clearly confused. I had just met that girl, for crying out loud.

And I scoffed, “No, not her. She’s not the one who died, honey. It was a boy, a little 8-year old boy. I just read the stories.” As if that little fact — “I just read their stories” — somehow protected them. I mean, she couldn’t possibly be dead today if she wasn’t dead two days ago when *I* read her story? She’s not the Dead One. He is.

Well, they both are. This girl, Sweet Caroline, forever 12, was announced as an Ambassador Kid on Thursday and died on Saturday morning. Two days of fame. Two lousy, measly days.

Being a St. Baldrick’s Ambassador Kid is a fairly big deal. It’s special. Suddenly, there are thousands and thousands of people following your story, shaving in your honor, wishing you well. It doesn’t actually change anything, it doesn’t magically make you healthy. But it’s still special. And she should have had a chance to enjoy it. To revel a little in her own celebrity.

She should have had a chance to enjoy so much. And to revel in her own ordinary life.

But she didn’t. And this is why we do what we do. This is what all the hoopla is for. All the green hair, the fundraising competitions, the shamrock cupcakes, the endless emails. It’s so that kids stop dying.

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Oh, I haven’t written in ages. Not that I don’t have things to say — I always always do — but the longer I go without blogging, the harder it is to start again. I’ve thought a few times this month about writing, but the days go by and it doesn’t seem to happen. And then, something strikes that simply needs to be addressed.

And this time, it’s Justin.

Justin Miller was one of the five 2012 St Baldrick’s Ambassador Kids, alongside our own Austin, and I felt a bit like I knew him. He’s a few months older than Braedan, could be his classmate if he lived nearby. He was diagnosed young, at age 3, with a neuroblastoma that was bad enough for doctors to give him a 30% chance of surviving five years. He did survive five years, then six and eventually seven. But after relapsing time after time after time, he passed away yesterday at the age of ten.¬†

Of all the Ambassador Kids we’ve watched and followed over the years, Justin is, by far, the one with the biggest personality. He was all boy, obsessed with Legos and being a cancer-fighting ninja. He never backed down from a fight against his arch-enemy cancer, rising up and saying, over and over again, “Let’s do this thing.” He became a bit of a cancer celebrity, especially when he represented St. Baldrick’s at the 2012 Stand Up To Cancer telecast, hobnobbing with the rich and famous.

I have to admit that I was a tiny bit jealous when I saw him there on that stage that night. I was watching the show on TV as they announced the exciting (and necessary) new partnership between Stand Up To Cancer and St Baldrick’s, and out walked Justin with someone famous at his side. They showed his video (here) and I thought, for just the quickest little second, “Why didn’t they choose Austin for that role? He plays with Legos too!” Well, the reasons are many why they didn’t choose Austin: first and foremost, he never ever would have stood on that stage and addressed those thousands of viewers with such poise and humor and confidence. (Can’t you just see little Austi, burying his head into my shoulder and refusing to even glance at the cameras?) But there are other reasons too. Like that Austin & Co. had been the poster children for St. Baldrick’s that year and you gotta spread the attention around. And then there’s the biggest reason: Austin was fine, we were done, and Justin was not. As his mother says in that video, his life depends on every single new advance the scientists make; he relies on the research that will come out tomorrow; he needs¬†every additional dollar of funding to go to pediatric cancer. Needs.

I’ve always felt a bit guilty for that fleeting moment of jealousy, especially when St Baldrick’s shared the news of Justin’s sixth relapse. And then the relapse after that. I knew I would give up any bit of recognition or celebrity or red carpet excitement to have what I have: my child, who will stay after school today to practice his running round-off back handspring combination for next week’s talent show. My child, who will snuggle down in bed next to me tonight to read a story. My child, who is, above all else, present in my life.

I hurt for Justin’s parents today, for his sister, his family and his friends. We “fans” might think we’ve lost something too, but our sadness is nothing, nothing, compared to theirs. We didn’t act fast enough for Justin. The world couldn’t get enough funding into the hands of enough doctors to produce enough new research to give Justin one more fighting chance. So let’s act fast enough for the next kid.

As Justin would say, “Let’s do this thing.”

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