Killian Mansfield was out riding his bike with a friend while I was talking with his mother, Barbara, on the phone. Killian does all the things most 15-year-olds do – he just got back from camp, he goes to school and he hangs out with friends.
But he also spends a few days each month at the Integrative Therapies Program for Children with Cancer at Morgan Stanley Children’s Hospital in New York City, where he’s being treated for synovial sarcoma, a rare cancer of the soft tissue. He’s also an advocate, taking an active role in his treatment. And he designed a t-shirt and raised money for the program at Morgan Stanley which helps him manage the disease.
Since the diagnosis when he was 9 years old, Killian has undergone several surgeries, courses of radiation and chemotherapy, all the tools approved for treatment of the disease. He still has active cancer, five inoperable tumors. He’s no longer a candidate for radiation or chemo. Killian has run out of protocols. That is, he’s run out of the protocols currently approved by the FDA for this disease.
His parents need the flexibility to take advantage of anything they feel will help their son, wherever they can find it. That could require jumping on a plane to go where a viable treatment might be available. Top on the list of possibilities is a drug currently being used in Europe which has shown good results among those who can tolerate it. Killian’s oncologist is trying to get the FDA to approve what’s known as “compassionate application” of the drug – still in clinical trials in this country – for Killian.
Killian is philosophical, a good fighter. “He puts his mind where he needs to,” says Barbara, “he’s living to the fullest. When he doesn’t feel well, he simply deals with the symptoms.”
The family refuses to see sarcoma as a sentence; rather it’s a life-threatening chronic condition, something to be dealt with day to day. As Barbara puts it, “we insist on a glass-half-full perspective.” The current effort is to find experimental and alternative treatments: “We need to buy time until something better comes along,” she says.
All this takes money. While many practitioners in this area have waved their fees to provide supportive treatments that are keeping Killian active and pain-free, the expenses of managing the disease are a constant challenge. Barbara says the family is lucky to live in an area within reach of the best medical care available and to be part of a community that will rise to help its own. She also acknowledges the good fortune of being known to a wide circle of people through their former business, the popular American General Store in Shokan.
Jim Sofranko is spokesman for a group of people who have organized to raise money to relieve some of the financial pressure. The first event is a concert this Friday, July 11, from 5 to 10 p.m. at The Reservoir United Methodist Church on Route 28 in Shokan (next to the Shokan fire station). The line-up includes Peter Schickele (PDQ Bach), Peter Einhorn, Wini Paetow, Fran and Brian Hollander and Friends, Bruce Katz, Vinnie Martucci, Gary Kvistad with Giri Mekar, Fido, Woodstock String Quartet, and several other local personalities. Food and beverages will be provided.
The group is also planning to hold a sponsored walk and run in early September and more concerts later in the year. Information on these events can be obtained by e-mailing js@hvc.rr.com.
The concert coincides with the world-wide 2008 Team Sarcoma Initiative, July 12 to 20, the theme of which is “Sarcoma knows no boundaries.” It’s an internationally coordinated schedule of events to raise awareness of the disease and raise funds to support research, clinical trials (Killian has already been a participant in one such trial), and patient and family support services. Sofranco says that Killian would like a percentage of funds raised for him to go to the children’s cancer program at Morgan Stanley.
What is it?
“Sarcoma” comes from a Greek term meaning “fleshy growth.” According to the National Institutes for Health (NIH) synovial sarcoma is rare. It accounts for between five and 10 percent of the approximately 10,000 new soft-tissue sarcomas reported each year The disease occurs mostly in young adults; approximately 30 percent of patients with synovial sarcoma are younger than 20. The disease occurs more often in men than in women.
Soft-tissue sarcomas are cancers of the muscle, fat, fibrous tissue, blood vessels, or other supporting tissue of the body, including synovial tissue, that lines the cavities of joints, such as the knee or elbow, tendons (tissues that connect muscle to bone), and bursae (fluid-filled, cushioning sacs in the spaces among tendons, ligaments and bones). Although synovial sarcoma does not have a clearly defined cause, genetic factors are believed to influence the development of this disease. Though soft-tissue sarcomas can occur anywhere in the body, about 60 percent occur in the arms, legs, hands or feet. Another 20 percent occur in the chest and abdomen. About 10 percent are found in the head and neck, the general site of Killian’s tumors.
Soft-tissue sarcomas usually produce no signs and symptoms in their early stages. As the tumor grows, it may produce a lump or swelling. Later it may cause pain if it presses on nerves or muscles. If the tumor is located in the abdomen, it may cause blockage or bleeding of the stomach or intestines.
How you can help
Come to the events. In helping Killian fight his fight, you help increase the level of activity on the front lines of the race to find more treatment options for synovial sarcoma. “There is a list of 10 things people are trying with varying degrees of success,” says Barbara. “We hope to add to list.” You can send donations in the form of checks to: The New Hope Fund, Bank of America, 2808 State Route 28, Shokan, NY 12481. Checks should be made out to The New Hope Fund.
As a culture, we’ve moved beyond ridiculous euphemisms like “the C word,” but it’s still a tricky subject. It shouldn’t be. By getting involved – talking with the family, with Killian, talking about the disease with others – you also help reduce the stigma of living with cancer.
What would Barbara Mansfield like to see happen in the near future to help Killian and others fighting cancer? Her answer was fast and certain.
“I would love to see institutions that use an integrative therapies model more widely available to everyone who needs them,” she says. “We need a political sea change, the way FDA approves drugs needs to change.” Pressure on the agency from industry and political interests is too much a factor in its policy-making. Barbara is hopeful that a regime change in Washington will make a difference. So am I.
More information on synovial sarcoma can be found at: http://www.childrenshospital.org/az/Site1031/mainpageS1031P0.html. To learn more about Integrative Therapies Program for Children with Cancer at Morgan Stanley Children’s Hospital of NewYork-Presbyterian, visit: http://www.childrensnyp.org/mschony/integrative-therapies.html.