Graham Fowler: Melanoma Survivor
From Graham’s mom, Cheryl: Graham’s story as seen through my eyes. It is hard to be a mom, even harder to be a good mom, but nobody can prepare a parent to hear the words, “Your child has cancer.” It hit me like a ton of bricks, I never saw it coming and the sinking feeling inside me still remains—almost 5 years later.
In early 2013, Graham developed a small, raised bump on his arm that resembled a blood blister. He picked at it, and it would bleed more than a normal scab. It continued to grow back, so we asked his pediatrician to remove it. We were not concerned in the least. It did not look concerning. His doctor was not concerned. After the removal, his pediatrician said that it looked, “inflamed” under the microscope, but nobody was concerned as they thought it was because he had picked at it so many times. They took a little more and again told us not to be concerned. We named the little bugger, “Adolf.” Adolf continued to fascinate the pathologists, and they continued to take more of Adolf. Nobody seemed concerned or even used the word cancer. Adolf went on tour, too many pathologists. On April 19th, 2013, Graham was diagnosed with Spitzoid melanoma. On April 23rd, he had Adolf removed, along with several lymph nodes. That was the start of our never-ending journey.
Graham has a fascinating history, including a first cousin who had melanoma as a child. His tumor was classified as Clarks Level V. His original surgery was at Children’s Hospitals and Clinics of Minnesota, his follow up care at the Mayo Clinic in Rochester, Minnesota. He has a remarkable team of doctors at the Mayo Clinic, but kids don’t get melanoma. He had no egregious sun exposure, we live in Minnesota! Graham’s team watches him very closely because there is no real universal protocol for pediatric melanoma. I call Grahams’ follow up plan, “the sitting duck plan.” As more options become available, such as the recently approved use of Ipilimumab, children will have better options for early intervention and ultimately better outcomes.
As a parent, you wait, you watch, you check their skin every night and panic over things like a pen mark, or a little food stuck on their face remaining from lunch! Living every day with this beast is hard. Graham endured dozens of surgeries, has battle scars that he has adjusted to, and lymphedema that causes him great pain. He misses school, relies on medication to control his pain, and tries to hide is compression stockings from all the other 14-year-old kids that make fun of him. It sucks.
I was fortunate to give birth to this fabulous little boy that has decided to turn his experience into a passion for sun safety education and melanoma philanthropy. He rarely cries, never asks, “Why me?” and forges through with strength and enthusiasm. I do worry about those few days when he does cry. He once asked, “When will I be old enough to decide for myself to not have any more surgeries?” I cried that day, too. I cry in the shower a lot. He wants to play hockey, but he hurts. He loves lacrosse but has never made it through a season without having to recover from a surgical procedure. He wants to play basketball this winter—I signed him up and pray he makes at least half the season.
Graham started raising money when he was first diagnosed. He makes and sells bracelets for $1.00. All of the money raised he has donated to cancer research or melanoma research. He recently has joined forces with the Melanoma Research Foundation in hopes raising enough money to someday sponsor a pediatric melanoma research grant.
He attends Hill Day each year to talk to Congress about increasing funding for melanoma, and he even was invited by President Obama to visit the White House. As of today, he has raised over $100,000 for cancer research and also volunteers with Make-A-Wish Minnesota. He looks forward to attending the Pediatric Melanoma Summit that Brenda Busby and the MRF sponsor, where he gets to meet other kids that have melanoma and share their stories, learn about their disease and help educate those that don’t.
But, all that being said, he still has melanoma. There is no cure. He hurts every day and is a sitting duck. His childhood has been robbed by a beast that I, as a mother, have absolutely no control over. It is a horrible feeling. I have joined organizations, foundations, support groups and most recently became a facilitator with the melanoma exchange.
He misses a lot of school, missed his 7th-grade yearbook picture, misses field trips, and struggles to play sports. He has traded in his tank tops for UV blocking clothing, he packs sunscreen in his backpack, and he wears a hat. He is tired after school and relies on pain meds at night. He is still a happy little boy that loves life—he just got dealt a bad card.