Kyle is wearing a virtual reality headset and holding a controller in each hand; he’s a gamer who finds excitement in digital worlds. And he’s a 20-something former cancer patient at CHOC’s Hyundai Cancer Institute. When he found out that the pediatric healthcare system was looking to develop the potential of virtual reality (VR) as part of a treatment plan for adolescent and young adult (AYA) cancer patients, he jumped at the opportunity to give feedback and be part of the process.
“When I was going through treatment, I felt really isolated, but absolutely loved playing video games,” Kyle says. “It helped me get back a sense of normalcy whenever I was feeling good. To me, VR is part of the future for cancer treatment.”
A Gift to Launch a Dream
Love Your Melon Foundation provided a $25,000 VR technology gift, becoming the first organization to invest in this innovative care for CHOC patients with cancer. Love Your Melon was founded with a goal of providing free hats to every child in the U.S. battling cancers; to date, that is more than 200,000 hats. Love Your Melon also supports nonprofit organizations, like CHOC, that lead the fight against pediatric cancer in research, creating therapeutic experiences and family support.
Each year, CHOC’s sees approximately 200 newly diagnosed pediatric, adolescent and young adult cancer patients; 30-40% are diagnosed with leukemia or lymphoma; 30% have brain tumors and the rest face diagnoses of sarcomas or other rare cancers.
Adolescents and young adults are dependent on connecting with their peers and being independent from their families. It’s an age when AYAs may be getting a driver’s license and a car or getting ready for high school or college. But with a cancer diagnoses, their whole life is upended.
“Suddenly, they can’t go out with their friends, they can’t go to proms or graduation,” says Jennifer Hayakawa, a nurse-scientist and manager of CHOC’s Nursing Research & Innovation Department. “And when they’re hospitalized, they miss out on that sense of community.”
Research has shown that pain, fear, distress, anxiety, depression and loneliness are common experiences for pediatric and AYA cancer patients. And this also impacts their families as well.
“The personal journey they’re on will have its ups and downs and it shapes who they become,” says Hayakawa.
A Path Forward
To find a solution, CHOC looked to new research that supports the use of VR to provide holistic cancer care to children, adolescents, young adults and their families. By creating an immersive, virtual neighborhood, VR could direct a patient’s attention away from the negatives they face in the real world and, in a virtual world, help them find courage and skills, interact with other patients and providers, learn how to communicate and more. And patients could select from a curated library of therapeutic VR experiences.
“The VR platform is intended to help guide them, because their chronic illness means they are on a chronic journey of wellness,” says Hayakawa. “And it leverages what is an innate inclination to gaming, gives them a safe place with cool stuff, and excites and motivates them.”
Creating a Safe, Virtual World
Reality Smash, an Irvine-based company that builds virtual wonderlands with clients including NASA, University of California, Irvine, and Disney, has been working with the CHOC Sharon Disney Lund Medical Intelligence and Innovation Institute (MI3) and the advisory AYA Patient Leadership Team on a discovery and development process to create a virtual program for young cancer patients. The leadership team members are patients selected for a range of diagnostic backgrounds who, among other things, consult on various projects and bring their personal experience and knowledge to help create a better patient experience.
A virtual map will help patients make their way in the world and, through different doorways, they’ll be able to engage in peer-to-peer networking with other cancer patients, exercise, be introspective, do some role-playing to get ready for tough conversations or be inspired by messages of gratitude—and leave their own messages for others to find. They also may find different prizes along the way to bring joy and encouragement. It’s a place where they feel safe to create, learn, reflect, and grow.
Embarking on a Hero’s Journey
“We believe that technology is a tool to be used for good and we envision a metaverse of exploration called the Hero’s Journey VR where the AYA patients become the heroes of their own story,” says Dylan Watkins, Reality Smash’s founder and CEO. “Although these experiences may be virtual, the emotion, transformation and connectedness they feel is very much real.”
The VR program will take CHOC’s patients on a transformative adventure in a supportive, interactive and innovative environment.
“We’re really excited about this,” says Kelsey Chapman, an AYA specialist in CHOC’s Cherese Mari Laulhere Child Life Department. “To be able to build this community for my patients and have them come together and know we’re stronger together and they have each other—VR will make a huge difference.”
Learn more about the Hyundai Cancer Institute by visiting our website.