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Pediatric Brain Tumor Foundation Releases Resource Guidebook for Childhood Brain Tumor Survivors and Their Families

09/19/19

When treatment for a childhood brain tumor ends, a new chapter of the journey begins: survivorship. Unfortunately, survivors often face significant late effects from their treatment – such as intellectual, physical and social impairments, changes in physical appearance, social isolation, and the psychological and emotional effects that accompany being diagnosed with and undergoing treatment for a brain tumor.

To help pediatric brain tumor survivors and those who care for them navigate this new part of the journey, the Pediatric Brain Tumor Foundation is excited to announce the launch of its Survivorship Resource Guidebook.

Published with generous support from Coverys and in partnership with the Friends of Jaclyn Foundation, this comprehensive resource includes helpful information specifically for pediatric brain tumor survivors on the topics of physical and mental health, quality of life, navigating the system, and much more.

“The Pediatric Brain Tumor Foundation's Survivorship Resource Guidebook provides survivors with a feeling of community no matter where they are geographically and regardless of where they are in their survivorship journey,” says Stephanie Bower, MSW, pediatric brain tumor survivor and contributor to the guidebook. “The resource will be there when a survivor is needing information on a particular topic or when they are hoping to know if someone has felt the way they are feeling. (Spoiler: We have.) A resource like this is invaluable because it not only provides survivors with important information, serving as a touchstone, but it allows us to see how we are connected and not alone in our journeys. That is the piece that is priceless.”

Families can download the Survivorship Resource Guidebook here. More than 40 experts in the fields of pediatric oncology, education, and disability rights, including parents and survivors, contributed to help guide families through their survivorship journey so that families can:

  • Learn what questions to ask regarding long-term follow-up care
  • Understand what information to keep track of
  • Access templates for managing a survivor’s medical care
  • Read words of encouragement from pediatric brain tumor families

“The Pediatric Brain Tumor Foundation's Survivorship Resource Guidebook is a must-have manual for families and providers caring for survivors of childhood brain cancer. This book will become your ‘go to’ resource for its completeness, easy-to-use format, inspirational stories, and practical checklists,” says Dr. Julia Meade, Pediatric Oncologist and Assistant Professor at the University of Pittsburgh School of Medicine and a contributor to the guidebook. “It's not just for families either. Any member of the medical team caring for survivors of childhood brain and spine tumors will find this guidebook a rich resource to help families navigate medical, social, financial and legal matters.”

According to a study by St. Jude, adult childhood cancer survivors experience nearly double the number of chronic health conditions than the general public, with survivors of pediatric brain tumors and other central nervous system cancers facing the highest cumulative burden of chronic health conditions. Along with funding research for cures that will lead to a better quality of life for kids with brain tumors, the PBTF is committed to empowering today’s survivors.

"When a child or teenager finishes treatment for a brain tumor, they face a whole new set of challenges. We’ve designed this guidebook to bring together expert advice about how to understand and deal with the full range of challenges survivors and their families face. My hope is that in the years following treatment families know they are not alone in facing these challenges," says Kathy Riley, MPH, CHES, PBTF’s vice president of family support.

The Survivorship Resource Guidebook is funded in part by Coverys and the Friends of Jaclyn Foundation, a nonprofit committed to improving the quality of life for children battling pediatric brain tumors and other childhood cancers.

"Friends of Jaclyn, in conjunction with the Pediatric Brain Tumor Foundation, feels passionate about supporting children and families through their entire journey from diagnosis to survivorship. We are incredibly proud to be part of the making of this Survivorship Resource Guidebook and will continue to work with the PBTF to grow and develop more programs that shed light on the long-lasting and devastating side effects of cancer and its subsequent treatment," says Erin Stimson, Executive Director of Friends of Jaclyn Foundation.

Families can download a digital copy of the entire guidebook here or order a free printed copy by contacting the PBTF’s family support team at 800-253-6530, x306 and familysupport@curethekids.org. The supplemental templates and forms are also available for free download here.