On Legos and Ninjas

This one is for 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.”