Dylan’s Story: Living with Pediatric Melanoma

Guest blog from Kara Little, mother of pediatric melanoma warrior Dylan. 

As I sit here and watch my 8-year-old son Dylan practice baseball, I’m reminded that at one point I wasn’t sure we’d be here doing this. Dylan was born with a rare condition called giant congenital melanocytic nevus. His body was 80% covered at birth with this rare birthmark and he was immediately taken to the NICU. It took the hospital 30-60 of the longest minutes of our lives to figure out what he had. After learning what we were facing, the research began.

By the time Dylan was five weeks old, he had already had a PET scan and an MRI to check for melanoma. It was then we learned he had several melanin deposits in his brain, so now we added neurocutaneous melanocytosis (NCM) to his diagnosis.

Both of these conditions alone are scary and together we thought it was a death sentence, but Dylan has proven us wrong so far. That doesn’t mean we still don’t worry daily. Dylan has had 32 surgeries to date removing the bulk of the bloody, raw nevus. He still has a lot and requires constant monitoring to watch for changes. Dylan also needs sunscreen on constantly to protect him as well as a yearly MRI to check on the NCM in his brain.

Since Dylan has been alive, so many children have passed from his condition turning into pediatric melanoma as well as children who just unfortunately get pediatric melanoma. Everyone feels like family and it reminds us not to take Dylan’s life for granted.

September is Childhood Cancer Awareness Month and stories like Dylan’s are a powerful reminder that melanoma can affect even the youngest members of our community. In honor of Dylan and the 500 additional families who will be affected by pediatric melanoma this year, please consider a tax-deductible gift to support further research, better treatments and progress towards a cure.

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