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This page provides a list of resources that may be helpful to parents of children with brain tumours. These include books, web resources and support groups.

Key points

  • There are many resources to find out more about brain tumours and treatment including books, online resources, and support groups.

Here are a few resources to help you find out more about brain tumours and their treatment.

Books

Staying Connected: A Guide for Families When a Sick Child has Trouble Communicating

Sometimes when a child or teenager is very sick, they may have trouble communicating and doing other things that they used to be able to do. Trying to help them to understand and live with their changing abilities can be overwhelming, for children and for their caregivers.

Our team has worked with family members and caregivers of children who had trouble communicating because of a brain tumour. People often told us that they did not know what to do; they felt helpless and frustrated. But with time, patience, creativity and support, families found new ways of communicating with their children and teenagers. Families encouraged us to create this resource as a way of sharing their experiences and strategies so that other families could have ideas about where to start and what to try, and know that you are not alone.

Every family and every child is unique. Some of your family’s experiences may be very different from what you read about in this book, but we hope that some of the experiences or strategies are helpful to you. We encourage you to use or adapt the ideas in this book to fit with your family, your child’s strengths and abilities, age and developmental stage.

Order a hard copy of this book by emailing ceilidh.eatonrussell@griefcentre.org or download a pdf copy of "Staying Connected".

Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends and Caregivers

This book, by Tania Shiminski-Maher, Patsy McGuire Cullen and Maria Sansalone, is the most complete parent guide available. It includes detailed and precise medical information about benign and malignant brain and spinal cord tumours that strike children and teens. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues.

Published by Patient Center Guides; ISBN 0596500092

Living With Childhood Cancer: A Practical Guide to Help Families Cope

This book, by Leigh A. Woznick, Carol D. Goodheart, discusses how to explain the disease to your child and his siblings. Emphasis is placed on how to communicate your child's needs to the hospital staff, coping strategies, and where to seek help regarding psychological, financial and school issues.

Published by the American Psychological Association; ISBN 1557988722

Brain Tumour Patient Resource Handbook: Pediatric Version

This patient handbook is a reliable, informative and free guide to living with a brain tumour for patients, their supporters and friends. The Handbook is available in adult and paediatric versions, in English and French.

Published by the Brain Tumour Foundation of Canada (800-265-5106).

A Primer of Brain Tumors

This book contains pictures of the brain, explanations of symptoms, information about who gets these tumours, how they are diagnosed, and how they are treated

Available through the American Brain Tumor Association www.abta.org/publications (or call 800-886-2282 for a complimentary copy).

100 Questions & Answers About Brain Tumors

Written by a neuro-oncologist, this popular press book provides understandable responses to the concerns that follow the words Brain Tumor.

Available through the American Brain Tumor Association (call 800-886-2282).

Living with a Brain Tumor

This is a step-by-step, reassuring guide for newly diagnosed patients and their families.

Available from American Brain Tumor Association.

Alex’s Journey: The Story of a Child with a Brain Tumor.

This book gives your child basic information about brain tumours. Alex’s journey describes several symptoms, diagnostic procedures and treatments for brain tumour. There are several variations in the way brain tumour is diagnosed and in the way it is treated. This story is not a recommendation of any particular treatment. While you are reading the story, you should adapt the story to your child’s treatment plan.

Available from American Brain Tumor Association.

Brain Tumors: Leaving the Garden of Eden

This book, written by Paul Zeltzer, is a patient-oriented guide that will help you translate the challenge of having a brain tumour into practical decision-making for the best possible treatment. It can help parents understand the roles of the medical team, prepare and get organized for the road ahead. Navigating the medical system may appear daunting at times, and this book will answer many of your questions.

Published by SP Shilysca Press; ISBN 0-976017-0-5

Web Resources

The Childhood Cancer Foundation — Candlelighters Canada

www.smof.org

The Childhood Cancer Foundation - Candlelighters Canada is a national volunteer charitable organization dedicated to improving the quality of life for families experiencing the effects of childhood cancer through the provision of resources, parent support and the promotion of research.

This website offers a resource store where you can purchase books and videos related to childhood cancer. They also provide a “Touch the Sky” kit to every child diagnosed with cancer in Canada. This kit assists children undergoing treatment to manage their pain and reduce stress. Additionally, you will find parent and teen support groups as well as other valuable resources.

Candlelighters also offers resources such as books and videos for school teachers who are having a child return to school following cancer treatment.

The Brain Tumour Foundation of Canada

https://braintumour.ca/

On this website, you will be able to access a paediatric brain tumour handbook, both in English and French. This booklet provides:

  • an overview of the brain and how it functions
  • facts about brain tumours
  • descriptions of many types of tumours and cysts
  • an overview of current treatments
  • what to expect at the hospital and at home
  • a glossary of terms

American Brain Tumor Association

www.abta.org

The American Brain Tumor Association has a large site with information, support and research updates. There is a specific area for kids. There is an on-line primer about brain tumours. “Alex’s Journey”, a video for kids, can also be obtained.

Support Groups

Brainchild

www.sickkids.ca/brainchild

Brainchild is a group of parents, family and friends who have the common experience of caring for a child with a brain tumour or who are survivors. The group is a volunteer organization providing support, education and research funding.

Brainchild: Maritime Chapter

Contacts: ann.chapman@iwk.nshealth.ca, jenniferdempsey@eastlink.ca

Brainchild is a group of parents, family and friends who have the common experience of caring for a child with a brain tumour or who are survivors. The group is a volunteer organization providing support, education and research funding.

Last updated: September 8th 2009