The Jay Fund has put together a list of recommended books for kids with cancer and their families. Many of us already know that children can get cancer in the same parts of the body as adults, but there are plenty of differences and symptoms and treatment depend on the cancer type and how advanced it is. Treatment may include surgery, radiation and/or chemotherapy. But, when your child or that of a loved one is diagnosed, it’s hard to comprehend what the totality of that diagnosis means to them, their siblings, family and friends. There are many published books for kids with cancer which help to explain cancer in a simpler, less frightening way, so we’ve put together a list of some of these books. Check with your local library, as most will carry these books or order them for you. Here, we’ve provided different links to Amazon.com and organizations that will help you obtain a book.
We have the books below in our office and highly recommend these to Jay Fund families:
The American Childhood Cancer Organization (“ACCO”) also maintains a comprehensive list of recommended reading for families, siblings and children battling pediatric cancers. Families can join ACCO and gain access to free copies of books and a treatment kit. Some of the books on their site include:
Along the Way, Documenting My Child’s Cancer Journey
by Ruth I. Hoffman, MPH
A parental resource that provides a way to document medical treatments, hospital contact information, treatment expenditures, and local resources. This logbook also contains information about clinical trials, treatment procedures, blood counts, side effects, a journal section, and a place to take notes.
Cozy Cares Journal
Written by Ruth I. Hoffman, MPH / Illustrated by Trevor Romain
A fun keepsake that provides a way for the child to document his or her cancer journey. While it is a helpful tool for the child undergoing treatment, this journal is also a cherished treasure for family and friends, who can read it and experience the cancer journey through the thoughts and words of a child .
Chemo, Craziness, and Comfort, My book about childhood cancer
by Nancy Keene and Trevor Romain
A 200 page resource that provides practical advice for children diagnosed with cancer between 6 and 12 years of age. Warm and funny illustrations and easy-to-read text help the child (and parents) make sense of cancer and its treatment.
Educating the Child with Cancer: A Guide for Parents and Teachers, 2nd Edition
edited by Ruth I. Hoffman, MPH
An essential resource for families who have faced the childhood cancer diagnosis. Written by top researchers in the field, and balanced with parents’ personal experiences, this 334 page resource focuses on educational issues for children treated for cancer. It is intended to promote understanding and communication between parents, educators and medical professionals so that together they can provide an appropriate education for children who have been treated for cancer which in turn will lead to a productive and rewarding life.
One free copy available to families of children with cancer, and one free copy for the child’s teacher.
Understanding the Journey, A Parent’s Guide to DIPG
Edited by Ruth I. Hoffman, MPH
A 368 page comprehensive resource that guides the family whose child has been diagnosed with a diffuse intrinsic pontine glioma through this difficult diagnosis. Chapters are written by pediatric neuro-oncology experts and cover all aspects of treating a child with a DIPG including: diagnosis, imaging, pontine function and anatomy, steroid treatment, radiation therapy, radiosensitizers, surgery, chemotherapy and biologics. Helpful chapters on loss of communication and caring for the child at home provide practical advice. Research chapters focused on animal models of DIPG, stem cell research, vaccine research, convection enhanced delivery and genomic research provide hope for a brighter future. The final chapters on organ and tissue donation as well as integrating palliative care answer the questions that families ask at their child’s end of life. The book includes 164 parent stories that provide personal insight to the DIPG journey.
For ‘Sibs’ of Kids with Cancer, Oliver’s Story is a 40 page illustrated book targeted for the 3 to 8 year old sibling of children diagnosed with cancer. Illustrated by Mike Dodd and written through the eyes of his six-year-old son Oliver, this resource focuses on the many questions that siblings have when their brother or sister is diagnosed with cancer, and offers constructive ways on how they can provide support.
La Historia de Oliver
Para los hermanos de niños con cancer, Oliver’s Story in Spanish.
Lift ME Up
by Trevor Romain
This 22 page coloring book is filled with inspirational pictures to color for the 3-10 year old child diagnosed with cancer.
You Are Not Alone (free download)
by Mark Chesler, Ph.D. and Sara Eldridge, M.S.W., M.P.H.
A Sourcebook for support groups for families of children with cancer. Available in Adobe PDF format at link above from ACCO.
Childhood Cancer Guides
The four books below, published by Childhood Cancer Guides—a 501c3 (nonprofit)—cover all aspects of coping with childhood cancer: information on treatment options, such as chemotherapy, radiation, stem cell transplantation, and surgery; financial help; emotional issues; late effects of treatment; and much more. These updated and medically reviewed books contain accurate and comprehensive information and support for parents and loved ones from the devastating time of diagnosis throughout treatment. Woven among the medical details and the practical advice are the voices of hundreds of parents and children who have lived with childhood cancer, its treatments, and its aftereffects. All of these books are authored, co-authored, or edited by Nancy Keene. Some of the information in these books is available online on the Childhood Cancer Guides (CCG) web site.
Childhood Cancer Guides donates several hundred books a year to ACCO to give to families that cannot afford to purchase one. ACCO and CCG request that parents who can afford to purchase a book do so to help keep the books in print for other families following in our footsteps.
1 – Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 4th ed. by Nancy Keene
This book covers all of the childhood leukemias.
2 – Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, 2nd ed. by Honna Janes-Hodder and Nancy Keene
This book covers neuroblastoma, Wilms tumor, liver cancers, soft tissue sarcomas, bone sarcomas, and retinoblastoma.
3 – Childhood Brain & Spinal cord Tumors: A Guide for Families, Friends, and Caregivers
By Tania Shiminski-Maher, Maria Sansalone, Patsy Cullen; edited by Nancy Keene
This book covers brain and spinal cord tumors.
4 – Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd ed.
by Nancy Keene, Wendy Hobbie, Kathy Ruccione
This book covers the issues of long- term survivorship: medical late effects, relationships, overcoming employment or insurance discrimination, maximizing health, follow-up schedules.
Do you have any other recommended books for kids with cancer and their families? Please share the titles and links on the Tom Coughlin Jay Fund Facebook page.