Patient and Survivor Resources

Resources

Patients & Parents

NCCS’ Handbook:
download below or
click here to read.

Survivors

NCCS’ Survivor Handbook: download below or
click here to read.

Support Group

Facebook Support Group
You are welcome to join our support network of other families, patients, parents at
our Facebook support group.


The Hope Portal: Directory of Resources

THE HOPE PORTAL (www.hope-portal.org) is a centralized and comprehensive database that connects patients, survivors, and their families to childhood cancer resources and support service organizations quickly and efficiently. Click below to access this wonderful resource!


Other Resources:

  1. United Therapeutics has created some wonderful resources for neuroblastoma patients and their caregivers. Skivolo is a curious red panda who has been diagnosed with neuroblastoma and has many questions about it. There are several books available for download at: https://www.neuroblastoma-info.com/resources-support/skivolos-kid-zone/
  2. “Learning to Dance in the Rain: A Parent’s Guide to Neuroblastoma Diagnosis, Treatment, and Beyond” by Rachel A. Ormsby “When Nathan was first diagnosed with neuroblastoma in 2006, our family entered a world we knew nothing about. The world of childhood cancer is terrifying and complicated. We had a lot to learn and quickly. We had to learn about treatments, scans, blood draws, labs, medicines, and side effects, including how to handle them. We looked for help from other parents and Nathan’s medical staff. One thing that would have helped was a guide that we could have read and made notes in as we traveled this path. A guide to all those things other families have already learned. Something we could have carried around with us that would help us make sense of this new vocabulary and the things we needed to know. This book is for just that purpose. It is intended to help navigate some of the things you will find during your child’s treatment and recovery from cancer." E-mail for a paperback copy: dancingintherainNB@gmail.com. Also available on Amazon and only $0.99 on Kindle.
  3. “Memorial Time: Stories About Love, Science, and Children with Neuroblastoma” Wrtitten by Family Members A collection of stories about an aggressive childhood cancer: the challenges of the families, the determination of the doctors seeking a cure, and the courage of the kids on the front lines. A book about hope, heartache, and perseverance – and every child’s right to grow up. A group of parents whose children fought stage 4 neuroblastoma share stories about the experience, starting with the shocking moment of learning “it’s cancer.” They write about the helplessness of watching a beloved child undergo invasive therapies and the despair of knowing the child might not survive. They share how they made a hospital a home and discovered inner resources they didn’t know they had. Editor Shirley Staples also chronicles the decades-long quest to cure neuroblastoma – the passion and dedication of the physician-scientists at Memorial Sloan Kettering; the obstacles in combating this cunning adversary; and the scientific breakthroughs that are changing the odds. All royalties will be used for neuroblastoma research at Memorial Sloan Kettering.
  4. “Childhood Cancer Survivors: A Practical Guide to Your Future” by Nancy Keene, Wendy Hobbie, Kathy Ruccione More than 325,000 children, teens, and adults in the United States are survivors of childhood cancer. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children can affect growing bodies and developing minds. If survivors know of these potential problems, they can take steps to identify, cope with, or treat them early if they do develop. The third edition of Childhood Cancer Survivors charts the territory for survivors by providing state-of-the-art information about: " Medical late effects from treatment " Emotional aspects of surviving cancer " Schedules for follow-up care " Challenges in the heath-care system " Lifestyle choices to maximize health " Discrimination in employment or insurance ". Woven throughout the text are stories from more than 100 survivors and parents. Authors Keene, Hobbie, and Ruccione are experts in the field of childhood cancer. Keene is the mother of a survivor of childhood leukemia and the author of several books including "Childhood Leukemia", "Childhood Cancer", "Educating the Child with Cancer", and "Chemo, Craziness & Comfort". Hobbie is Associate Director of the Cancer Survivorship Program at Children's Hospital of Philadelphia. Ruccione is Co-Director of the HOPE (Hematology-Oncology Psychosocial and Education) Program at the Children's Center for Cancer and Blood Diseases at Children's Hospital Los Angeles.

 

You can be a part of the solution!

 

%d bloggers like this: