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.
Stories of progress, inspiration, and information in overcoming osteosarcoma.
Practical Resources for Osteosarcoma Patients and Families
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.
Meeting with an Expert
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.
Making It Personal
“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.”
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.
A Helping Hand
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.
- Childhood Cancer International — Represents over 180 childhood cancer nonprofits and support groups worldwide.
- Osteosarcoma Now — Maintains a clinical trial database to help osteosarcoma patients and families understand the science and make treatment decisions.
- Bone Cancer Research Trust — Funds bone cancer research and offers support and information to patients.
Sarcoma Specific Organizations
- MIB Agents Osteosarcoma Alliance — Offers programs of support, collaborative research, and educational programs, materials, and resources.
- Osteosarcoma Collaborative — Supports new treatment options for those with aggressive osteosarcoma.
- Osteosarcoma Project — A research initiative that collects data for osteosarcoma research, benefiting the community as a whole. Patients can send in a data collection kit with their saliva swabs.
- The Power of Will — Provides quality-of-life grants for sarcoma patients ages 15 to 39. Previous grants have supported the purchase of musical equipment, gardening supplies, school supplies for college, and dinner with friends and family.
- Rein In Sarcoma — Funds cures for sarcoma cancers and offers support groups.
Pediatric Cancer Organizations
- Cleaning for a Reason — If you are a cancer patient or family, this organization will clean your home, free of charge.
- Happiness Is Camping — Provides camps for cancer patients (ages 6 to 15) and their families.
- Lazarex — Helps patients with out-of-pocket costs associated with traveling to clinical trials.
- Lizzy’s Walk of Faith Foundation — Mails care packages to patients currently battling pediatric cancer.
- Rally Foundation Emergency Fund — Offers financial support to cancer patients under the age of 21.
- Stupid Cancer — Supports adolescents and young adults (AYA) with cancer with community events and meetups.
“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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