Childhood Cancer
Other service organizations (United States)
Alex’s Lemonade Stand Foundation (ALSF)
(610) 649-3034
ALSF raises money to fund innovative research for better treatments and cures for pediatric cancer. It also offer financial assistance for travel to and from specific treatment centers, and a SuperSibs program providing emotional support to siblings of kids with cancer.
American Society for Deaf Children
This national information and support organization was founded and is governed by parents of deaf children.
American Speech-Language-Hearing Association (ASHA)
(800) 638-8255
ASHA provides referrals to local speech/language/hearing specialists.
Amputee Coalition
(888) 267-5669
The Amputee Coalition empowers people affected by limb loss through education, advocacy, practical information, and mutual support.
(800) 813-HOPE / (800) 813-4673
Cancer Care provides referrals, one-on-one counseling, specialized support groups, and educational programs.
Chai Lifeline/Camp Simcha
(877) CHAI-LIFE / (877) 242-4543
Chai Lifeline offers support service programs for Jewish children and their families, including medical referrals, support groups, visits to hospitalized and housebound children, financial aid, transportation, and a camp for kids with cancer.
Children’s Organ Transplant Association (COTA)
(800) 366-2682
COTA provides fundraising assistance to families facing a life-saving organ, stem cell, or bone marrow transplant. Funds raised in a COTA campaign can be used for any expenses related to the transplant.
Flashes of Hope
(440) 442-9700
This organization matches professional photographers with families to create powerful, uplifting photographic portraits of children fighting cancer and other life-threatening illnesses.
Gabe’s Chemo Duck Program
This unique educational program offers a Chemo Duck to children with cancer. This soft, cuddly companion provides huggable hope and alleviates fear and anxiety. Developed with the help of child life specialists and medical professionals, the Chemo Duck Program helps introduce children and families to their new life and encourages healing through the power of play therapy.
Hearing Loss Association of America
This organization provides education, advocacy, and direct support for individuals with hearing loss. It hosts an online parent-to-parent community for parents of children with hearing loss and has a network of state and local chapters.
Monkey in My Chair
(513) 772-4888
Monkey in My Chair provides a child with cancer a “monkey kit” that includes a big stuffed monkey that takes their place in school when they are unable to be there. The kit contains a book to help teachers explain childhood cancer and its treatment to classmates to help them gain insight and empathy.
National Association for Parents of Children with Visual Impairments
(800) 562-6265
This association maintains a national support network via telephone and mail correspondence; provides publications, information, referrals, conferences, outreach programs; and publishes a quarterly newsletter.
National Center for Complementary and Alternative Medicine (NCCAM)
(888) 644-6226
NCCAM is dedicated to exploring complementary and alternative healing practices in the context of rigorous science, training researchers, and disseminating authoritative information.
National Organization of Parents of Blind Children
(410) 659-9314
This division of the National Federation of the Blind connects parents to peer support and provides information and resources.
(800) 4-CANCER / (800) 422-6237
www.cancer.gov/publications/pdq/information-summaries/pediatric-treatment
PDQ is the National Cancer Institute’s computerized listing of accurate and up-to-date information for patients and health professionals about cancer treatments, research studies, and clinical trials.
Ronald McDonald House Charities (RMC)
(630) 623-7048
RMC is committed to helping families of seriously ill children by providing Ronald McDonald Houses, the Ronald McDonald Learning Program, and Ronald McDonald Family Rooms within hospitals.
Songs of Love Foundation
(800) 960-SONG / (800) 960-7664
This volunteer group has more than 200 artists who produce personalized musical portraits for children with chronic or life-threatening diseases.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups