Johns Hopkins All Children's Hospital

Young Cancer Patients AYA PROGRAM TEAM Director: Peter Shaw, M.D. Navigators: Melinda Duren, N.P., and Kelly Lawless, N.P. DISEASE-SPECIFIC EXPERTS Acute Lymphoblastic Leukemia: Colin Moore, M.D., Jennifer Mayer, M.D., and Ben Oshrine, M.D. Acute Myeloid Leukemia: Jonathan Metts, M.D., Ben Oshrine, M.D., and Gauri Sunkersett, D.O. Blood and Marrow Transplant: Ben Oshrine, M.D., Gauri Sunkersett, D.O., and Deepak Chellapandian, M.D. Brain Tumors: Stacie Stapleton, M.D. Chronic Leukemia: Gauri Sunkersett, D.O., and Peter Shaw, M.D. Cutaneous Malignancies: Damon Reed, M.D. Desmoid Tumors: Damon Reed, M.D., and Jonathan Metts, M.D. Germ Cell Tumors: Peter Shaw, M.D. Histiocytic Diseases (LCH and HLH): Deepak Chellapandian, M.D. Hodgkin's Disease: Nanette Grana, M.D., and Peter Shaw, M.D. Liver Tumors: Peter Shaw, M.D. Neurofibromatosis: Stacie Stapleton, M.D. Non-Hodgkin Lymphomas: Colin Moore, M.D., and Peter Shaw, M.D. Sarcomas: Jonathan Metts, M.D., and Damon Reed, M.D. Vascular Anomalies: Jennifer Mayer, M.D. RELATED SERVICES Adolescent Medicine: Jasmine Reese, M.D. Fertility Preservation/Reproductive Endocrinology: Shayne Plosker, M.D. Psychology: Melissa Faith, Ph.D. "We will bring all the services this age group will need," says Peter Shaw, M.D., deputy director of the Johns Hopkins All Children's Cancer & Blood Disorders Institute who joined the hospital in 2016. "Creating a package of services that meets all of these needs improves the quality of life and makes a difference for these patients. I don't think there is another oncology program like this in Florida or the southeast that provides all of these services to this patient population." MEETING UNIQUE CHALLENGES Patients in this age group are dealing with the challenges of moving from childhood to adulthood in addition to their cancer diagnosis. ey are more likely to engage in higher-risk behaviors such as smoking, excessive drinking and drug use or otherwise not complying with the treatment guidelines. Sometimes they are sorting out their school options, career goals, sexuality or other aspects of their lives. e Johns Hopkins All Children's AYA program will help by matching them with a navigator to assist them and providing other support. "Treating one of these patients is not like treating a 50-year-old, who may be more established in life, or treating an 8-year-old, whose parents likely will make the child show up for appointments and comply with the treatment," says Shaw, who will be director of the AYA program. "AYA patients require focused attention and support. We must not leave them to feel alone." ADDRESSING CONCERNS Fertility concerns are a key issue after a cancer diagnosis for the AYA age group. Shaw and his team discuss this issue with each patient and family, so they can make informed decisions along the course of treatment. e AYA population historically has had the highest rates of uninsured or underinsured individuals. Only two states have insurance coverage that includes fertility preservation, and for many, it can seem cost prohibitive. For males, it costs several hundred dollars to bank sperm and for females, several thousand to store eggs. Shaw is working with the Johns Hopkins All Children's Foundation to raise money to cover fertility preservation costs for patients who need the support when preservation is medically advised. One female patient already has benefited. "We want to address the concerns of these patients and support them as completely as possible," Shaw says. The AYA program also helps patients and families with academic and psychosocial support. The hospital has a team of teachers to help inpatients and outpatients keep up with their schoolwork, and the Johns Hopkins All Children's Institute for Brain Protection Sciences recently added psychologist Melissa Faith, Ph.D., who will be dedicated to working with cancer patients. She will assess patients and families, help them develop coping skills and counsel them during what can be a difficult stage of life even without confronting cancer. "Having a good psychologist available can really make a huge difference," Shaw says. "We're fortunate to be at a pediatric academic medical center that values treating the whole patient and not just a disease." To refer patients to the Johns Hopkins All Children's Adolescent and Young Adult Oncology Program, call 727-767-7337. Spring 2018 13

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