MRF Blog

In Christy's Words: The 2nd Annual Pediatric Melanoma Summit

August 22, 2016 | Categories: Events, Patient Stories

"Mommy, thank you so much for taking me to Great Wolf Lodge again!" Moses wrapped his arms around my neck, with great big tears streaming down his face.

I don't know if Moses completely grasps the full significance of this yearly trip. But for the last two years, the Melanoma Research Foundation (MRF) has helped gather together families dealing with pediatric melanoma, a somewhat rare disease, for a weekend of uniting, learning, collaborating, empowering, and enjoying a happier side of childhood than interferon shots and PET scans. Each year, this trip means so much to me on so many levels. We are huge fans of not only the location, but the people we spent time with, the information we gathered, and the vision that was cast for the future.

My boys loved the park, with a consistent woodsy theme and outdoor critter mascots, Great Wolf proudly houses one of the largest, most exciting indoor water parks anywhere. And could there be any more perfect location for a pediatric melanoma summit? No sunscreen, brimmed hats or UV protection rash guard shirts necessary. But more than anything, what keeps bringing us back to these events is the people we meet.

I read that most groups typically last about three years because they don't serve together or work together and lose their sense of purpose. I think that's one thing that's neat about this group of people – we’re not all the same, but we have the same purpose and vision. We're the type of people who want to use what we went through to bring about change. We've all been profoundly affected by melanoma and we want others to have better resources than we did. It's hard not completely falling in love with people like that, which is why last year there were way more hugs than handshakes.

Of course, the Summit wasn't really about us adults, though. Our kids had the chance to bond together, through activities and meeting other kids with scars that matched their own, something that was quite normal instead of something to stare at. They inspired each other, as the younger and newer patients met older patients who'd done some amazing things to raise awareness and give back.

We heard from a great variety of speakers and I may have learned more in just a few hours that weekend than I had in the prior two years about some of these subjects. We heard from families of other pediatric patients, researchers and doctors who explained everything from the formation of atypical nevi to pathology reports, and financial planners. We also received information and valuable resources from various melanoma groups who understood what we, as families who had been impacted by pediatric melanoma, were going through.

In 2014, the Summit felt like a relief. A relief to locate the tribe, to realize we didn't have to figure this all out on our own and that this could be survived, not just the melanoma but the strain and the stress of it all. Last year felt different. I felt empowered. And after so many years of feeling powerless, that’s truly one of the most incredible feelings in the world.

Written by pediatric melanoma advocate, Christy Williams.

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