There are multiple resources available to help parents, caregivers and children cope with a blood and marrow transplant (BMT). These resources include websites and books.
Websites for parents
One Match Stem Cell and Marrow Network
The One Match Stem Cell and Marrow Network is managed by Canadian Blood Services. They find donors for Canadian and international patients. On this website you can find:
- How Canadian Blood Services find donors
- What happens when a donor is found
- The matching process for patients
- How to participate in OneMatch
BMTInfoNet
BMTInfoNet is a not-for-profit organization dedicated to providing information, support and services to families and patients undergoing a transplant. You can find links for:
- support from a team of over 200 transplant survivors
- information on medications taken before and after the transplant
- resources directory, with a link to paediatric resources
Paediatric Oncology Group of Ontario (POGO)
Founded by a group of paediatric oncologists, POGO helps parents in Ontario access the best diagnosis, treatment and support services for their child. It contains information on:
- Satellite programs, which help patients who travel long distances for treatment. It also links aspects of the child’s care to hospitals closer to the child’s home.
- AfterCare clinics, which ensures periodic follow-up care for childhood cancer survivors.
- The Successful Academic and Vocational Transition Initiative (SAVTI). This program helps with career and academic development of childhood cancer survivors with learning problems.
Trillium Foundation
The Trillium Foundation is an agency of the Government of Ontario and has been providing grants to charities and not-for-profit organizations in Ontario. They may be able to help provide medicine coverage for parents in Ontario who do not have coverage through employment.
Assistance for Children with Severe Disabilities (ACSD)
The ACSD provides financial assistance to parents for costs related to their child with a severe disability in Ontario. It provides funds for low-to-moderate income families. They may also help provide medicine coverage for parents in Ontario who do not have coverage through employment. The Ministry of Community and Social Services in Ontario manages the money for ACSD. You can find the application for ACSD on the Ministry's website.
The Northern Health Travel Grant Program
www.health.gov.on.ca/en/public/publications/ohip/northern.aspx
Funded by the Ministry of Health and Long-Term Care, this program provides grants to help cover some travel costs for Northern Ontario residents. Parents who travel at least 100 km (one-way) for medical care that is not available in their local area are eligible.
Canadian Cancer Society
The Canadian Cancer Society is a national community and volunteer-based organization. Its information-packed website provides information on:
- cancer research
- supportive services
- cancer prevention
- diagnosis
- treatment
- living with the illness
They also offer practical services for patients such as transportation to and from the hospital.
Books for parents
By Susan K. Stewart
Published by Blood & Marrow Transplant Information Network
ISBN 0-9647352-3-7
Written by a transplant survivor, Susan K. Stewart, this book is a helpful guide for people going through an allogeneic transplant. She talks about the details of the transplant itself as well as the emotional stress that comes with the experience. The book also contains a chapter for parents, whose child is undergoing a transplant.
Autologous Stem Cell Transplants: A Handbook for Patients
By Susan K. Stewart
Published by Blood & Marrow Transplant Information Network
ISBN 0-9647352-1-0
This is a detailed and easy-to-read guide for patients undergoing an autologous transplant. It includes a chapter on when a child needs a transplant. You can find information on how the transplant procedure as well as helpful tips on how to cope with the emotional stress of caring for a transplant patient.
Websites for teens and kids
Super Sibs!
www.alexslemonade.org/campaign/supersibs-sibling-support-childhood-cancer-families
Created in 2002, this website provides information and resources to support siblings of children diagnosed with cancer. The website has sections designed for siblings of different ages and circumstances, which are updated monthly. As well as providing a dynamic online support environment, siblings can find:
- education and outreach resources
- comfort and care packages for siblings
- areas where they can join sibling camps
- SuberSibs! newsletter which contains letters, poetry and photos from siblings in different age groups
Good 2 Go Transition Program
www.sickkids.ca/patient-family-resources/resource-navigation-service/transitioning-to-adult-care
The Good 2 Go Transition Program helps children and teens transition from paediatric care to adult care. Organized by the Hospital for Sick Children, the program teaches children:
- the skills and knowledge to advocate for themselves
- to keep a healthy lifestyle
- to use adult health care services effectively
Books for kids
Me and My Marrow: A Kid’s Guide to Bone Marrow Transplants
By Karen Crowe
Published by Astellas US LLC
ISBN 0-9702446-0-6
This is a children’s book inspired by a 13-year-old transplant survivor named Christina Cuzzone. By telling Christina’s story, this book helps guide children through the transplant experience, and is filled with colourful illustrations. Me and My Marrow can help kids understand:
- what a transplant is
- how it is done
- what treatment will feel like
- how to cope during difficult times
I’m having a Bone Marrow Transplant
Published by Leukemia Society of America
This is a colouring book that children may find useful during their stay in the hospital. It helps children understand what it is like to have a blood and marrow transplant. Children can also draw their own pictures as well.
This book can be ordered through the Leukemia & Lymphoma Society.
When Someone has a very Serious Illness
By Marge Heegaard
Published by Woodland Press
ISBN: 0-9620502-4-5
This is a workbook which helps children express their feelings about serious illness. It is a great resource that helps children cope with someone else’s disease. This may be a helpful resource for both your child and siblings.