The Tour de BBQ bicycle race is helping childhood cancer survivors make the transition to adult care at KU Medical Center
September 15, 2014
By Laura Long
Becky Lowry, M.D., will be up before the sun to serve burnt ends to hundreds of bicyclists on Sept. 27. Her early morning barbecue enthusiasm goes beyond the fact that she lives in a town that takes its barbeque seriously. Lowry, an assistant professor of internal medicine at the University of Kansas Medical Center and medical director of the new Midwest Cancer Alliance Survivorship Transition Clinic, is volunteering at one of the stops on this year's Tour de BBQ.
The Tour de BBQ is an annual bike tour event during which barbecue samples are shared with participants as cyclists pedal their way past some of Kansas City's best known smoke shacks. All proceeds benefit childhood cancer research and treatment at Children's Mercy Hospital and KU Medical Center.
"If serving early morning BBQ helps give pediatric cancer survivors access to long-term care tailored to their unique needs then I'm glad to be part of the effort," Lowry says with a smile.
According to Tour de BBQ volunteer Chris Deffenbaugh, 700 cyclists participated in last year's ride, and he anticipates more than 1,000 will register for this year's event. In 2013 the Tour de BBQ raised enough funds to underwrite the salary of Kyla Alsman, RN, the new Survivorship Transition Clinic nurse navigator. Alsman, who has nine years of experience as a pediatric oncology nurse at Children's Mercy, helps young adult cancer survivors at Children's Mercy and other medical facilities in the region transition to adult care at KU Medical Center.
The Survivorship Transition Clinic was developed by Midwest Cancer Alliance (MCA), the outreach arm of The University of Kansas Cancer Center, in partnership with Children's Mercy, to address long-term health issues in adult survivors of childhood cancer. It is a companion program to the pediatric Survive & Thrive program at Children's Mercy.
According to the National Cancer Institute, more than 80 percent of children live at least five years after a cancer diagnosis. Health authorities estimate that there are currently close to 400,000 in the United States who have survived childhood cancer and the number keeps growing. But Alsman points out that more of those survivors are at high risk of secondary cancers, fertility issues, cardiovascular disease and endocrine problems.
As Joy Fulbright, M.D., medical director of Survive & Thrive explains, "One of the most difficult things for these for survivors and their families is to transition from pediatric to adult care. When we discuss the new Survivorship Transition Clinic with families you can just see anxieties over making that change in care dissipate."
That was the case for Morgan Simpson, a six-year survivor of non-Hodgkin lymphoma and Grand Marshal for this year's Tour De BBQ. Simpson, who is now a certified nursing assistant in the oncology unit at St Joseph Medical Center, received her initial treatment at Children's Mercy but will soon switch her care to the Survivorship Transition Clinic.
"I was in high school when I was diagnosed but, now that I'm 21, I know it's time to start getting my care in a place that is familiar with my history but offers adult health care services," says Simpson. "It's such a relief to have a clinic that helps me make the switch."
Simpson is now followed by the Survivorship Transition team, which keeps track of her adult health care records and monitors her long-term risk issues during yearly follow-up visits. Simpson will receive educational materials and any necessary referrals from Alsman and Lowry during those appointments.
Alsman reports that although the clinic has not yet had its official grand opening, word is spreading and they are seeing patients from as far away as Florida. The clinic will soon offer counseling services and is exploring a nutrition program. Alsman anticipates other program enhancements in the future. "Our goal is to eventually make this transitional service available through telemedicine so that pediatric cancer survivors anywhere can receive the support we provide while being seen by their local physicians."
In the meantime, Alsman, too, plans to help dish out barbeque on Sept. 27. "Tour de BBQ's support has been instrumental to the Survivorship Clinic's existence," says Alsman. She adds with a laugh, "I'll probably end up with barbecue stains all over my clothes but that's a small price to pay to thank all the riders who make it possible."
For Simpson serving as Grand Marshall in the Tour de BBQ is also about giving back. She says, "Participating in an event like this helps to let others who have gone through some of the same challenges know that there are resources to help them get through it."