Stories of progress, inspiration, and information in overcoming osteosarcoma.
Last summer, 12-year-old Toby was in chemotherapy to treat his osteosarcoma. Shortly after a surgery to remove the tumor, he received a care package from Lizzy’s Walk of Faith Foundation.
The box contained a collection of lures and other fishing supplies — a perfect gift for this young fishing enthusiast. “He was amazed,” says Justin, Toby’s dad. “It was such a great care package and matched his interests perfectly.”
The fishing package was just one of the many custom care packages that are assembled by Jennifer and John Wampler, the founders of Lizzy’s Walk of Faith Foundation. The Wamplers lost their daughter Lizzy to osteosarcoma in 2018. The Wamplers learned of Toby and his family through a referral from OSI Connect, a unique service of the Osteosarcoma Institute (OSI). Connections like these, bringing new sources of hope and help, make a major difference for patients and their families.
A primary way the OSI links patients with childhood cancer resources is through its free patient service, OSI Connect. OSI Connect allows those affected by osteosarcoma to speak with an expert physician about all aspects of this devastating disease, free of charge. Since its launch in 2019, OSI Connect has grown and helped patients not only in the U.S. but all over the world including the U.K., Brazil, India, Germany, China, and Denmark.
Chelsey Blanks, OSI Connect’s administrator, fields all incoming queries and coordinates a 30- to 45-minute phone call with the patient, family or caregiver, and the osteosarcoma expert. OSI’s Director, Lee Helman, MD, joins most of the calls. For Spanish-speaking patients, Alejandro Sweet-Cordero, MD, volunteers his time.
However, the support OSI Connect offers goes beyond expert medical guidance.
“One of my favorite parts of the process is listening to what the family or the patient needs and putting together a list of organizations and resources that may be in their backyard, but they just don’t know it yet,” says Chelsey.
Following their conversation with the OSI’s osteosarcoma expert, Chelsey sends each patient a resource list based on their expressed needs. “I try to curate it to be specific,” she says. “It is not a one-size-fits-all list. I also try to stick to 8 to 10 organizations, so it is not overwhelming.”
For example, Chelsey has a list of resources specifically for patients who may have lost a limb from surgery. Such resources include the Amputation Coalition and Beautifully Flawed Foundation.
The resources in Chelsey’s library run the gamut. Some offer financial support to meet patients’ immediate needs. Others provide services like house cleaning, which can fall by the wayside in the chaos of treatment.
Other organizations offer ways for patients to contribute to the evolving research in osteosarcoma. The Osteosarcoma Project, part of the Count Me In research initiative, seeks to accelerate discoveries by building a comprehensive osteosarcoma database.
“You can empower researchers to find cures faster by giving them data: by giving them just a small sample of saliva,” osteosarcoma patient Phoebe explains. Patients and families can also contribute medical records and experiences to the Osteosarcoma Project, which are anonymously shared with the biomedical community.
From Chelsey’s wide-ranging resource library, here are a few resources for cancer patients that can offer a helping hand in the cancer journey.
“OSI Connect allows us to meet people right where they are,” says Chelsey. “We want to help as many patients and families as possible amid something so difficult. It is the hardest thing I do and the most rewarding thing I do.”
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