ALBANY Sarcoma attacks what keeps us together.
It’s a rare cancer that targets connective tissue and bones.
Kristen Shinebarger is 11 years old and lives in Saratoga Springs. She suffers from a form of it called Ewing’s sarcoma, and a relapse cost Kristen her right leg, which was amputated.
Still, she has a sweet smile and likes to ski and ride horseback. Another hobby is making bracelets. There are people all over the country who have Kristen’s handmade jewelry on their wrists.
Like links in a chain, the bracelets are just one aspect of a remarkable effort by Landon Cooper, a former college soccer player from Alabama with tattooed surfer-dude looks and a history of hard partying in the Hollywood Hills of California.
Inspired by the death of a close friend to a disease he had never heard of, Cooper launched Miles 2 Give, a charitable foundation that raised $103,000 for sarcoma research last year, primarily through a 157-day running odyssey by Cooper and two others, Ryan Priest and John McKay.
Cooper was at Albany Medical Center last Friday to meet Kristen, one of 270 sarcoma “warriors” represented by the 2013 run, for the first time and to promote the documentary of the 3,187-mile cross-country journey, “The Pursuit to Give & Inspire.”
I was among dozens of people who screened the first hour of the two-hour film, narrated by Kenny Mayne, and look forward to seeing how it ends. Cooper in the flesh at Albany Med certainly was one welcome spoiler alert, considering what the three friends endured in the name of sarcoma awareness.
Performing surgery on a large heel blister with a kitchen knife in the 1994 Winnebago they named “Life Elevated” was one brief scene illustrating the ordeal.
But for each shot like that, there were countless others showing the wave of generosity and spirit of kinship that washed over them and bound them to the warriors, their families and most everyone else they met through 14 states.
Cooper is cranking it up several notches in 2014, with plans to run a counterclockwise loop around the U.S. starting from Times Square on April 14 and returning there after over 10,000 miles. He wants to raise a half-million dollars this time.
“People say, ‘Oh, my God, that’s so long, but there are many cancer journeys that go on for decades, so once again, it pales in comparison,” Cooper said.
Sarcoma annually affects 12,000 people in the U.S., mostly children, and occupies one of the bottom rungs on the ladder of attention because it’s not widespread.
Subsequently, this form of cancer also trails well behind on the fund-raising landscape.
With over 200,000 patients in the U.S. alone, for instance, breast cancer awareness has painted a swath of pink across the globe on everything from ribbons to NFL players’ cleats.
This isn’t a competition, of course, but when Cooper’s friend, Ashley Davis, died of sarcoma in 2010, he was struck by how little he knew about it and how difficult it has been to scrape together funding for research and publicity.
A road race that Cooper and three friends dedicated to Davis grew into Miles 2 Give last year. While one of the three runners drove the support vehicle, at least one of the two others would be on the road.
They started by dipping their toes in the Pacific Ocean in San Francisco on Feb. 14 and ran about a marathon per day. They collected litter and license plates along the way, but predominantly memories, as they spread the word about sarcoma, solicited donations and connected with sarcoma warriors and their families all over the country.
Besides the grueling task of the running itself, the trio exposed themselves to dangerous traffic and elements.
“We slept on the side of the road in a different place every night and ran against traffic, feet away, going more than 60, 70 miles an hour, with cans being thrown at us, bottles, fireworks . . .” Cooper said.
The sense of mission overwhelmed all else, though, even when Cooper suffered a hallucinatory breakdown on the lonely, endless, soul-crushing stretch of Route 50 in Nevada. They recruited a local healer to snap him out of it.
“As you see in the film, it kind of treads toward the amount of discomfort and towards the scary scene in the desert with the medicine lady and completely going through hallucinations,” Cooper said. “So the idea was to make sure the people that I know I want for this next journey, it has to be a positive approach and carry this spirit about them.”
As the crew gathered contacts around the country, they’d write the names of the warriors on the ceiling of the RV and names of their families on the walls. A daily ritual was to pick a name and write it in marker on the cheeks of whoever was running, like warpaint.
Cooper prefers the term “warriors” for all cancer sufferers over the usual bifurcation of people into the two groups, “survivors” and “victims,” part of that message being that we’re all in this together.
One person who became an invaluable part of the support staff was Dr. Matt DiCaprio, the director of orthopaedic oncology at Albany Med. He’s Kristen’s doctor.
DiCaprio serves as the Miles 2 Give medical expert who can supply the knowledge to anyone trying to learn more about sarcoma. DiCaprio also flew to Denver to run with the team.
“When a family finds out for the first time, it’s a scary thing,” DiCaprio said. “It’s a rare disorder, it requires a huge team to take care of these folks, long treatments, long follow-ups. The development of treatments has been fairly stagnant because it’s rare.”
The Miles 2 Give guys kept it together despite, as Cooper calculated, habitually going “22 days without touching porcelain, eight days without a shower.”
The singularity of purpose, coupled with an ever-growing reservoir of feedback from all angles, allowed the three runners to find a harmonic balance that pulled them through.
“It was just constantly trying to find some way to keep your mind from drifting in that dark place,” Cooper said. “You meet these families, and they’re at a low, psychologically, with being bankrupt or on the brink of divorce. We saw these things, we saw them behind closed doors. We knew the extremes, but we knew the end payoff was, hopefully, people would be inspired to fight on and forget that you feel uncomfortable or that this is not the way you want it to go.”
“You sort of feel like you’re the only one on the planet who’s dealing with it, and then you realize that, you know . . . you’re not,” said Kristen’s father, Marc.