© Springer International Publishing Switzerland 2016
Annah N. Abrams, Anna C. Muriel and Lori Wiener (eds.)Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care10.1007/978-3-319-21374-3_2525. Resources Chapter
(1)
Pediatric Oncology Branch, National Institutes of Health, National Cancer Institute, 10 Center Drive, Bldg. 10, 1H-PEDS, Room 1-5460, Bethesda, MD 20892, USA
(2)
Cancer Support Community, 1050 17th Street NW, Suite 500, Washington, DC, 20036, USA
(3)
School of Social Work, The University of Texas at Austin, 1925 San Jacinto, D3500, Austin, TX 78712, USA
(4)
School of Social Work, University of Texas at Austin, 1925 San Jacinto Blvd, Mail Stop D3500, Austin, TX 78712, USA
Families facing a cancer diagnosis can gather information and find supportive resources in numerous ways. Organizations dedicated to specific cancer diagnoses can be a useful resource to increase a family’s initial understanding of the disease. Books and videos geared toward each member of the family are also widely available and useful for providing information or support in a developmentally appropriate and sensitive manner. When working with pediatric oncology patients and their families, guiding them through the many ways in which they can access information on disease and treatment options, supportive services, financial assistance, survivorship, and end-of-life care can be invaluable.
*While we tried to include all potentially useful resources, this list is not exhaustive. New and additional resources may be available.
Books/Articles for Children with Cancer and Their Families
Children
Because…Someone I Love Has Cancer (American Cancer Society) Kids’ activity book
Chemo, Craziness, and Comfort: My Book About Childhood Cancer by Nancy Keene, Candlelighters Childhood Cancer Foundation, 2002
Dear Bruno by Alice Trillin, New Press, 1996.
Franklin Goes To The Hospital by Paulette Bourgeois. Scholastic, 2011
Healing Images for Children: Teaching Relaxation and Guided Imagery to Children Facing Cancer and Other Serious Illnesses by Nancy C. Klein. Inner Coaching, 2001
Kathy’s Hats: A Story of Hope by Trudy Krisher, Nadine Bernard Westcott (illustrator). Albert Whitman and Company, 1992
Little Tree: A Story for Children with Serious Medical Problems by Joyce C. Mills, Magination Press, 2003
Living Well With My Serious Illness by Marge Eaton Heegaard. Fairview Press, 2003
My Body Needs Help by Annette Abrams, Tenley Circle Press, 2011
The Amazing Hannah, Look at Everything I Can Do! by Amy Klett, Candlelighters Childhood Cancer Foundation, 2002
The Hospital Scares Me by Paula Z. Hogan and Kirk Hogan, Raintree Steck-Vaughn Publishers, 1995
The Sandbox King by Susanne M. Swanson, Writer’s Press, 1995
The Jester Has Lost His Jingle by David Saltzman. Jester Books, 1995
This is My World (workbook) by Sima Zadeh and Lori Wiener. National Cancer Institute and the National Institute of Mental Health, 2010 https://ccr.cancer.gov/Pediatric-Oncology-Branch-psychosocial-education
What About Me? When Brothers and Sisters Get Sick by Allan Peterkin, Magination Press, 1992
Teens
It’s Not About the Bike: My Journey Back to Life by Lance Armstrong and Sally Jenkins. Berkley Trade, 2001
Teens with the Courage to Give: Young People Who Triumphed Over Tragedy and Volunteered to Make a Difference by Jackie Waldman and Steven A. Culbertson. Conari Press, 2000
The Bald-Headed Princess: Cancer, Chemo, and Courage by Maribeth Ditmars. Magination Press, 2010
Parents/Adults
Caregiver’s Guide for Bone Marrow/Stem Cell Transplant (Practical Perspectives) by Melanie Goldish, 2003
Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends and Caregivers by Shiminski-Maher, Cullen, Sansalone, O’Reilly & Associates, 2002
Children Diagnosed with Cancer: Returning to school. The American Cancer Society, 2011
Children with Cancer: Effects and Educational Implications by Sarah McDougal, 1997
Educating the Child with Cancer: A Guide for Parents and Teachers by Nancy Keene, American Childhood Cancer Organization, 2003
Learning and living with cancer: Advocating for your child’s educational needs, Leukemia and Lymphoma Society, 2005.
Living With Childhood Cancer: A Practical Guide to Help Families Cope by Leigh A. Woznick and Carol D. Goodheart. American Psychological Association, 2001.
Shelter from the Storm: Caring for a Child with a Life-Threatening Condition by Joanne Hilden and Daniel Tobin, with Karen Lindsey. Perseus Publishing, 2002
The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Jimmie Holland and Sheldon Lewis. Harper Perennial, 2001
Therapeutic Activities for Children and Teens Coping with Health Issues by Robyn Hart and Judy Rollins. Wiley, 2011
Young People with Cancer. A Handbook for Parents. NIH/NCI, 2001
Siblings
Brothers and Sisters Together: A workbook for siblings of siblings who are sick by Lori Wiener, 2006 (Also available in Spanish) https://ccr.cancer.gov/Pediatric-Oncology-Branch-psychosocial-education
Drums, Girls and Dangerous Pie by Jordan Sonnenblick. DayBue Publishing, 2004 (fiction)
Hey, What about Me?: A Personal Journal for Teens Whose Brother or Sister Has Cancer by Pam Ganz, SuperSibs!
Oliver’s Story: For ‘sibs’ of kids with cancer by Michael Dodd, Candlelighters Childhood Cancer Foundation, 2004
SuperSibs! Parent Guide for Siblings of Children with Cancer, SuperSibs!
When Your Brother or Sister Has Cancer: A Guide for Teens Paperback by The National Cancer Institute, 2012
Books to Share with Other Students in the Classroom
Jacob has Cancer: His Friends Want to Help by Heather Cooper, American Cancer Society, 2012
The Famous Hat by Kate Gaynor, Special Stories, 2008
Taking Cancer to School by Kim Gosselin, JayJo Books, 2001
The Amazing Hannah, Look at Everything I Can Do! by Amy Klett, Candlelighters Childhood Cancer Foundation, 2002
The Long and Short of It: A Tale About Hair by Barbara Meyers and Lydia Criss Mays, American Cancer Society, 2011
Why, Charlie Brown, Why by Charlie Schultz, Ballentine Books, 2002
Resources for Teachers
Cancervive Teacher’s Guide for Kids with Cancer by Susan Nessim & Ernie Katz, Cancervive, 2000
Children with Cancer in the Classroom by Virginia Peckman, Teaching Exceptional Children, 1993
Pupils with Cancer: A Guide for Teachers. The Royal Marsden NHS Foundation Trust and the Specialist Schools and Academies Trust, 2008
Dealing with cancer in the classroom: The teacher’s role and responsibilities by C. Spinnelli, Teaching Exceptional Children, 2004
Cancer Survivors
Can Survive: Reclaiming Your Life After Cancer by Susan Nessim & Judith Ellis, Houghton Mifflin, 2000
Childhood Cancer Survivors: A Practical Guide to Your Future, 2nd Edition, by Kathy Ruccione, Nancy Keene, & Wendy Hobbie, O’Reilly Media, Inc, 2006
Childhood Cancer Survivorship: Improving Care and Quality of Life by the Institute of Medicine, National Cancer Policy Board, National Academies Press, 2003
Grief and Loss
Am I Still a Sister? by Alicia M Sims, Big A & Company, 1986
Gentle Willow: A Story for Children About Dying by Joyce C. Mills, Magination Press, 2003
Helping Teens Work Through Grief, 2nd Edition, by Mary Kelly Perschy, Routledge, 2004
Someday Heaven by Larry Libby, Multnomah Publishers, Inc., 2001
The Grieving Teen: A Guide for Teenagers and Their Friends by Helen Fitzgerald, Fireside, 2000
Waterbugs and Dragonflies by Doris Stickney, The Pilgrim Press, 1982
Videos/Websites
Better than a Spoonful of Sugar: How to Swallow Pills A training video for teaching pill swallowing. www.ucalgary.ca/research4kids/pillswallowing
Get Empowered: Life, Living & Follow-Up Care After Childhood Cancer A video education series for childhood cancer patients and survivors by Robert H. Lurie Comprehensive Cancer Center, http://cancer.northwestern.edu/empowered/index.cfm
The Trish Greene Back-to-School Program for Children with Cancer by Leukemia & Lymphoma Society, www.leukemia-lymphoma.org
This is Awkward: Fertility Preservation for Boys with Cancer by the Children’s Hospital of Philadelphia, http://www.chop.edu/video/oncology/fertility-preservation-boys.html
Cancer.Net Videos provides patient-friendly videos developed by ASCO http://www.cancer.net/multimedia/videos
Cancer Camps in North America
American Cancer Society (ACS): www.cancer.org
Arizona Camp Sunrise and Sidekicks, Arizona: www.azcampsunrise.org
Camp Boggy Creek: www.boggycreek.org
Camp Make-A-Dream: www.campdream.org
Camp Oochigeas: www.ooch.org
Camp Quality, throughout the United States: www.campqualityusa.org
Camp Rap-A-Hope, Alabama: www.camprapahope.org
Camp Simcha:: www.chailifeline.org
Camp Smile-A-Mile (SAM): www.campsam.org
Camp Sunshine: www.campsunshine.org
Camp Sunshine, Georgia: www.mycampsunshine.com
Children’s Oncology Camping Association: www.cocai.org
Double H Ranch: www.doublehranch.org
First Descents: www.firstdescents.org
One Step at a Time Camp: www.onestepcamp.org
The Hole in the Wall Gang Camp: www.holeinthewallgang.org
Special Love, Inc. (Camp Fantastic): www.speciallove.org
Sunshine Kids: www.sunshinekids.org
For additional camp listings by state, please visit: www.ped-onc.org/cfissues/camps.html
Scholarship Information
National Scholarships in the U.S.
American Cancer Society: www.cancer.org
Andre Sobel River of Life Foundation: www.andreriveroflife.org
Anne Ford Scholarship: www.ncld.org
Austin Sunshine Camps: www.sunshinecamps.org/scholarship
Beyond the Cure: www.beyondthecure.org
Cancer for College: www.cancerforcollege.org
Cancer Survivors Fund: www.cancersurvivorsfund.org
Friends for Michael Foundation:www.friends4michael.org
Friends of Scott Foundation: www.friendsofscott.org
Hydrocephalus Association: www.hydroassoc.org
Hyundai Hope on Wheels: www.hopeonwheels.com
Kyle Lee Foundation: www.kylelee28.com/Kyle
National Amputation Foundation: http://nationalamputation.org/scholar1.html
National Collegiate Cancer Foundation: www.collegiatecancer.org
The National Grace Foundation: www.Graceamerica.org
Patient Advocate Foundation: www.patientadvocate.org
The Pacific West Cancer Fund Scholarships: www.pacificwestcancerfund.org
Pediatric Brain Tumor Foundation: www.curethekids.org
Ronald McDonald House Charities: www.rmhc.org
Stephen T. Marchello Scholarship Foundation: www.stmfoundation.org
Surviving and Moving Forward: www.thesamfund.org
The Ulman Fund-Scholarship: http://ulmanfund.org/gethelp/support-programs-resources/scholarships/
Working Against Cancer: www.workingagainstcancer.org
Organizations in the U.S. Providing Information and Education
All Cancers
American Cancer Society (ACS)
Nationwide community-based voluntary health organization dedicated to preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. www.cancer.org
Brave Kids
Serves children with disabilities and chronic/life-threatening illnesses by providing a support community, information, and resources on numerous medical conditions. Has a “Just for Kids” tab on the website to guide children through their disability or illness. www.bravekids.org
Childhood Cancer Guides
Serves the childhood cancer community by providing explanations of the various types of childhood cancer, descriptions of treatments, emotional support for every member of the family, and access to helpful resources. www.childhoodcancerguides.org
The Children’s Cause for Cancer Advocacy (CCCA)
Nonprofit organization that works to stimulate drug discovery and development for childhood cancers; to expand resources for research and treatment, advocacy, and policy change; and to address the needs and concerns of survivors.www.childrenscause.org
CureSearch
The Children’s Oncology Group and the National Childhood Cancer Foundation unite to offer information about types of childhood cancer and treatments. Available in Spanish. www.curesearch.orgStay updated, free articles. Join our Telegram channel
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