Additional resources for rhabdomyosarcoma
More information from your American Cancer Society
Here is more information you might find helpful. You also can order free copies of our documents from our toll-free number, 1-800-227-2345, or read them on our website, www.cancer.org.
Children with cancer
Children Diagnosed With Cancer: Dealing with Diagnosis (also in Spanish)
Pediatric Cancer Centers (also in Spanish)
Children Diagnosed With Cancer: Understanding the Health Care System (also in Spanish)
Talking With Your Doctor (also in Spanish)
Coping with cancer
After Diagnosis: A Guide for Patients and Families (also in Spanish)
Family and Medical Leave Act (FMLA) (also in Spanish)
Nutrition for Children With Cancer (also in Spanish)
What Happened to You, Happened to Me (children’s booklet)
When Your Brother or Sister Has Cancer (children’s booklet)
Cancer treatment information
Understanding Cancer Surgery: A Guide for Patients and Families (also in Spanish)
Understanding Chemotherapy: A Guide for Patients and Families (also in Spanish)
Understanding Radiation Therapy: A Guide for Patients and Families (also in Spanish)
Clinical Trials: What You Need to Know (also in Spanish)
Cancer treatment side effects
Guide to Controlling Cancer Pain (also in Spanish)
Your American Cancer Society also has books that you might find helpful. Call us at 1-800-227-2345 or visit our bookstore online at www.cancer.org/bookstore to find out about costs or to place an order.
National organizations and websites*
Along with the American Cancer Society, other sources of information and support include:
Websites for parents and adults
American Childhood Cancer Organization (formerly Candlelighters)
Toll-free number: 1-855-858-2226
Offers information for children and teens with cancer, their siblings, and adults dealing with children with cancer. Also offers books and a special kit for children newly diagnosed with cancer, as well as some local support groups.
Amputee Coalition of America
Toll-free number: 1-800-AMP-KNOW (1-800-267-5669)
Offers information and support groups to people affected by limb loss.
Childhood Brain Tumor Foundation
Toll-free number: 1-877-217-4166
Though offered by the Childhood Brain Tumor Foundation, services are provided for children with ANY type of cancer. Provides information and research options to families so that they may better exercise their rights in making decisions in the areas of medical treatment, schooling, rehabilitation, employment, and insurance reimbursement/coverage.
Children’s Oncology Group (COG)
Provides key information from the world’s largest organization devoted to childhood cancer research to help support children and their families from the time of diagnosis, through treatment, and beyond. Also has a searchable database to find the COG center closest to you.
CureSearch for Children’s Cancer
Toll-free number: 1-800-458-6223
Provides up-to-date information about childhood cancer from pediatric cancer experts. Has sections on the website for patients, families, and friends to help guide them on how to support the child with cancer.
National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
Provides accurate, up-to-date information about cancer for patients and their families, including clinical trials information. Offers a special booklet for teen siblings of a child with cancer at: www.cancer.gov/cancertopics/when-your-sibling-has-cancer.
National Children’s Cancer Society, Inc.
Toll-free number: 1-800-5-FAMILY (1-800-532-6459)
Services include an online support network for parents of children with cancer, educational materials, and financial assistance for treatment-related expenses.
National Dissemination Center for Children with Disabilities (NICHCY)
Toll-free number: 1-800-695-0285 (also for TTY)
Provides information about disabilities and disability-related issues for families, educators, and other professionals.
Websites for teens and children
Starlight Children’s Foundation
Toll-free number: 1-800-315-2580
Website has animated stories and interactive programs to teach kids about chemo and procedures that may be done in the hospital; also has videos specifically for teens and provides a safe, monitored online support group for teens with cancer.
Group Loop (a subsite of the Cancer Support Community just for teens)
Toll-free number: 1-888-793-9355
An online place for teens with cancer or teens who know someone with cancer to connect with other teens – away from the pressures of classes, responsibilities, and treatment schedules. Has online support groups, chat rooms, information, and more.
Teens Living with Cancer
An online-only resource dedicated to teens coping with a cancer diagnosis and treatment. It focuses on teen issues and provides resources to support teens, their families, and friends.
SuperSibs! powered by Alex’s Lemonade Stand
Toll-free number: 1-866-333-1213
Supports, honors, and recognizes 4- to 18-year-old brothers and sisters of children diagnosed with cancer so they may face the future with strength, courage, and hope. Alex’s Lemonade Stand is restarting SuperSibs in 2014 so there may be some delays with resuming support services.
No matter who you are, we can help. Contact us anytime day or night for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.
100 Questions & Answers About Your Child’s Cancer, by William L. Carroll and Jessica Reisman. Jones and Bartlett Publishers, 2004.
Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness, by Mark A. Chester and Barbara K. Chesney. University of Wisconsin Press, 1995.
Care for Children and Adolescents with Cancer. National Cancer Institute, 2008. Available at: www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-422-6237.
Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, 2nd ed, by Honna Janes-Hodder and Nancy Keene. Childhood Cancer Guides, 2002.
Childhood Cancer: A Handbook from St Jude Children’s Research Hospital, by Grant Steen and Joseph Mirro (editors). Perseus Publishing, 2000.
Childhood Cancer Survivors: A Practical Guide to Your Future, by Kathy Ruccione, Nancy Keene, and Wendy Hobbie. Childhood Cancer Guides, 2012.
Children with Cancer: A Comprehensive Reference Guide for Parents, by Jeanne Munn Bracken. Oxford University Press, 2010.
Educating the Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2003.
Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. American Psychological Association, 2002.
Surviving Childhood Cancer: A Guide for Families, by Margo Joan Fromer. New Harbinger Publications, 1998.
When Bad Things Happen to Good People, by Harold Kushner. First Anchor, 2004.
When Someone You Love Is Being Treated for Cancer. National Cancer Institute, 2012. Available at: www.cancer.gov/cancertopics/coping/when-someone-you-love-is-treated, or call 1-800-422-6237.
Young People with Cancer: A Handbook for Parents. National Cancer Institute, 2003. Available at: www.cancer.gov/cancertopics/coping/youngpeople, or call 1-800-422-6237.
Your Child in the Hospital: A Practical Guide for Parents (2nd Edition), by Nancy Keene. O’Reilly & Associates. 1999. (Also in Spanish.)
For teens and children
Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child.
Chemo, Craziness and Comfort: My Book about Childhood Cancer, by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2002. For ages 6 to 12.
Childhood Cancer Survivors: A Practical Guide to Your Future, by Kathy Ruccione, Nancy Keene, and Wendy Hobbie. Childhood Cancer Guides, 2012. For older teens.
Going to the Hospital, by Fred Rogers. Paperstar Book, 1997. For ages 4 to 8.
Little Tree: A Story for Children with Serious Medical Problems, by Joyce C. Mills. Magination Press, 2003. For ages 4 to 8.
Living Well With My Serious Illness, by Marge Heegaard. Fairview Press, 2003. For ages 8 to 12.
My Book for Kids with Cansur [sic], by Jason Gaes. Viking Penguin, 1998. For ages 4 to 8.
What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Magination Press, 1992. For brothers and sisters (ages 4 to 8) of a child with cancer.
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change, by Marge Heegaard. Woodland Press, 1991. For ages 6 to 12.
When Your Brother or Sister Has Cancer: A Guide for Teens, National Cancer Institute, 2011. Available at www.cancer.gov/cancertopics/coping/when-your-parent-has-cancer, or call 1-800-422-6237.
Last Medical Review: 08/13/2013
Last Revised: 08/13/2013