Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Resources: Printed Materials

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This web site, Ped-Onc Resource Center, does not accept advertising. Any books listed here are suggestions only, often recommended by parents or reviewed by the webmaster. Purchase is not necessary; parents can obtain many of these books from local libraries. Please see About This Site.

Book Listing

The books listed on this page were all recommended by parents of children with cancer. It is not a complete list of all resources, but you can be assured that each book listed here has been recommended or enjoyed by another parent of a child with cancer.

(Do you want to recommend a book? E-mail the editor)

Comprehensive Information on Childhood Cancer

Childhood Cancer, A parent's guide to solid tumor cancers.

Honna Janes-Hodder and Nancy Keene.

Available as an ebook.

Comprehensive, friendly, essential! Childhood Cancer Guides has more information on this book: a sample chapter, table of contents, author interviews, etc. Available from the American Childhood Cancer Organization site (at no cost to those with financial need).

Children With Cancer, A Reference Guide for Parents

Jeanne Munn Bracken, Oxford University Press, 2010.
www.jeannemunnbracken.com

Comprehensive coverage of childhood cancers, written by a librarian who is the parent of a survivor of a rare cancer. The material is presented in a non-threatening and friendly manner. An excellent reference.

Principles and Practice of Pediatric Oncology

Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Philadelphia: Lippencott-Raven, 6th ed., 2011

A medical text, technical, expensive, comprehensive.

Cancer in Adolescents and Young Adults

by Archie W. Bleyer (Editor), Ronald Duncan Barr (Editor) Springer 2007.

A medical text that is a comprehensive review of cancer in adolescents between the ages of 15 and 20. An excellent book in its complete coverage of cancer in this specific age group; recommended by a parent.

Psychosocial Aspects of Pediatric Oncology

Shulamith Kreitler (Editor), Myriam Weyl Ben Arush (Editor).

Reviewed in the Nov. 11 NEJM, briefly: "This book is a comprehensive text on the all-important psychosocial aspects of cancer in children. Edited by an experienced psycho-oncologist and an equally experienced pediatric oncologist, the book brings together an international group of contributors composed of pediatric oncologists and psychologists/psycho-oncologists. This unique balance of contributors gives the book a focus on the real-life practical aspects of children undergoing treatment for cancer." Available on Amazon.com.

National Academies Press

Making Better Drugs for Children With Cancer.

2005. National Academies Press offers this book either for sale or for free page-by-page online viewing. A good discussion of the issues of drug developments for childhood cancer.

History

The Emperor of All Maladies: A Biography of Cancer

Siddhartha Mukherjee, Scribner; Reprint edition (August 9, 2011)

The history of the development of cures for cancer, with an emphasis on the cure of ALL. Highly recommended by parents of children with ALL. (2011)

Hope and suffering: children, cancer, and the paradox of experimental medicine

Gretchen Krueger, Baltimore, Johns Hopkins University Press, 2008.

Review of this book in PubMed. This book covers the treatment of childhood cancer from 1930-1970: from a time of no cure, to a time of curing a good percentage of children. I have a copy of this book, but have not read it in its entirety. It is one of those books that I keep meaning to read, but it's more like a text book than a book one picks up and cannot put down. Still, it is an excellent reference on the history of childhood cancer treatments. [PF, 2011]

Survivorship

Childhood Cancer Survivors

Keene, Hobbie, and Ruccione, 2nd ed., O'Reilly and Assoc., 2007.

Available as an ebook.

"In my opinion, this book is a must for childhood cancer survivors. The late effects of chemotherapy and radiation last for years past treatment for the disease. This book is a great reference and resource for both the survivors and their parents." (PF) Childhood Cancer Guides has more information on this book: a sample chapter, table of contents, author interviews, etc. Available from the American Childhood Cancer Organization site (at no cost to those with financial need).

Handbook of Cancer Survivorship

Edited by Michael Feuerstein. 504 pp., illustrated. New York, Springer, 2007. $89.95. ISBN 978-0-387-34561-1. This book is written for adult survivors of adult cancers. There is some good information in this book, as reviewed in the NEJM, Volume 356:2552, June 14, 2007, Number 24.

Cancer Survivorship: Today and Tomorrow.

Edited by Patricia A. Ganz. 304 pp. New York, Springer, 2007. $79.95. Well reviewed by Kevin Oeffinger in NEJM, Volume 357:2209-2210, November 22, 2007, Number 21. Includes a chapter on survivors of pediatric cancers.

Leukemia

Childhood Leukemia, a Guide for Families, Friends, and Caregivers

Nancy Keene

Available as an ebook.

This book is a must for any parent of a child with leukemia. This book covers everything about childhood leukemia. Associated with the book is a helpful web site, with articles on topics like blood counts, communicating with children, and coping with chemotherapy.

The Cure of Childhood Leukemia, Into the Age of Miracles

John Laszlo, MD. Rutgers University Press, 1996.

John Laszlo writes the history to date of the cure of childhood leukemia. The book reads like a story, and an amazing story at that. It is good reading for parents of children with cancer, especially leukemia, because it explains how and why many of the current chemotherapy agents and supportive therapies came into being. The importance of years of clinical trials in finding the cure is described. This is a good book to give to your relatives because it helps them to appreciate both how serious leukemia is and how incredible it is that it can now be cured. Online version of The Cure of Childhood Leukemia.

Childhood Leukaemia, the facts.

John S. Lilleyman

Endorsed by the Leukaemia Research Fund. One of a series of "The Facts" books published by Oxford Medical Publications. This is a good reference book (obviously British in origin). It is well-written and clear, with enough details on leukemia and treatment and survivor issues to guide a parent through their child's illness. My only complaint was the price of about $20 for a 140-page book that is only 5x8 inches in size. (PF)

Ching-Hon Pui, editor. Cambridge Press, 1999.

Written for clinicians and researchers, this book discusses the history of leukemia study, cell biology and pathology, treatment, and management of complications. This is a technical book (and expensive).

Edward S. Henderson, T. Andrew Lister, Mel F. Greaves W.B. Sanders Company, 6th Edition (1996)

"This is a medical book -- everything you didn't want to know. You will have to have a fund-raiser to buy i!. It has all the med journal references in it. It will keep you learning more. Sometimes it's scary though -- consult your hem/onc people! (amazon.com price is $225; perhaps you could find a copy at a library if you are interested.)" (reviewed by a parent)

Leukemia Diagnosis

Barbara Bain, 1999, Blackwell Science

Guides clinical hematologists and oncologists, laboratory scientists, and cytogenetists through the principles of diagnosis and classification. Major methods of classification, including FAB, MIC, and MIC-M are fully explained.

The Leukemia and Lymphoma Society

This society offers disease and treatment pamphlets, downloadable as acrobat files.

Brain Tumors

Childhood Brain and Spinal Cord Tumors

Tania Shiminski-Maher, Maria Sansalone, Patsy Cullen, Childhood Cancer Guides, 2001.

Pediatric CNS Tumors (Pediatric Oncology)

Nalin Gupta, Anuradha Banerjee, Daphne Haas-Kogan, N. Gupta, A. Banerjee, D. Berlin, Springer-Verlag, 2004. ISBN 3-540-00294-4.

Product Review: "Pediatric CNS Tumors is a detailed review of childhood nervous system tumors with a particular emphasis on biological data and treatment algorithms for each tumor type. Additional detailed information is provided on the recent advances in chemotherapy, radiation and surgery for these tumors." Reviewed in the Nov. 11, 2004 New England Journal of Medicine.

Solid Tumors

Childhood Cancer, A Parent's Guide to Solid Tumor Cancers

Honna Janes-Hodder and Nancy Keene, O'Reilly.

Available as an ebook.

Childhood Cancer Guides

Coping with Procedures

The Relaxation Response

Benson, Herbert, MD. New York: Avon Books, 1990

This is an excellent resource for the relaxation method of pain relief.

A Child In Pain: How to Help, What to Do

Leora Kuttner, PhD. Point Roberts, Washington: Hartley & Marks, 1996

Thoroughly explains how to understand, assess, and alleviate pain. Excellent resource.

Stress-Proofing Your Child: Mind-Body Exercises to Enhance Your Child's Health

Lewis, Sheldon, and Sheila Lewis. New York: Bantam Books, 1996

This book is highly recommended for all parents. It clearly explains easy ways to teach children techniques such as guided imagery, deep breathing, and meditation to decrease stress, increase a child's sense of control, and boost children's confidence. A wonderful, practical book.

Hospitalization

Your Child in the Hospital: A Practical Guide for Parents

Nancy Keene. 3rd ed. Sebastopol, CA: O'Reilly & Associates, 2002

A pocket guide full of parent stories to help others prepare their children physically and emotionally for hospitalizations.

Helping the Fearful Child

Kellerman, Johnathan. New York: W.W. Norton, 1981

Although this book was written as a guide for everyday and problem anxieties, it is full of excellent advice for parents of children undergoing traumatic procedures. This book is out of print, but may be available in your local library. (Yes, this is the same Johnathan Kellerman who is the author of quite a few thrillers/mysteries.)

Coping

Living With Childhood Cancer, A Practical Guide to Help Families Cope

Leigh Woznick and Carol Goodheart

"I highly recommend this book for parents of children with cancer. It provides precisely what the title promises: 'A practical guide to help families cope.' Unfortunately, this book was not available until my son was off-treatment for cancer; today, turning the pages of the book , I find the reading comforting, cozy . . . kind of like sitting down and talking with a good friend. The authors know what I felt during those first stressful years of treatment, and if I had had the book then, I would have felt both comforted and armed with methods to deal with the psychological turmoil that comes with hearing those words "your child has cancer". Woznick and Goodheart include useful chapters on relieving pain and side effects, encouraging child development during treatment, and building self-esteem in your child, as well as a chapter on dying and grieving. The book also has an excellent resource section, forty-four pages of annotated listings of helpful organizations, support groups, web sites, books, and videos." (PF) The table of contents and other reviews of this book are available at the publishers web site, the American Psychological Association.

Hope for Families of Children with Cancer

Lynda T. Young and Chaplain Johnnathan Ward
Leafwood Publishers, 2011
web site

Along with stories that draw you in, this book inspires the reader and offers practical advice on how to cope with a child's diagnosis with cancer. The authors share how their religious beliefs bring hope in knowing that "You are not alone!". [PF, 2011]

Armfuls of Time

Barbara Sourkes

The psychological experience of the child with a life threatening illness.

Your Child has Cancer: A Guide to Coping

Joan Taksa Rolsky, MSW

Lots of practical advice in a short (212 pages) book. Touches on lots of different subjects from the hospital itself, to taking care of a child at home, to integrating school, to hair loss, to coping with death (although that's really short).

Available by mail order: Committee to Benefit the Children, St. Christopher's Hospital for Children, Erie Avenue at Front Street, Philadelphia, PA 19134-1095, $12.95 each or less for additional quantities.

Children With Cancer : Communication and Emotions

Anna M. Van Veldhuizen, Bob F. Last

Reports the findings of a study (funded by the Dutch Cancer Society and the Foundation for Pediatric Cancer Research) on the communication between parents and their child with cancer--the concept of communication not being restricted to the informational transfer of facts about the disease, but also including the exchange of information on emotions and the degree to which the disease is discussed.

Cancer and Self-Help: Bridging the Troubled Waters of Childhood Illness

Chesler, Mark A., PhD, and Barbara Chesney. Madison, WI: The University of Wisconsin Press, 1995

Explains how self-help groups are formed, how they function and recruit, and why they are effective.

Siblings

Straight from the Siblings: Another Look at the Rainbow

Gloria Murray (Photographer), Gerald G. Jamplosky (Editor), Celestial Arts, California, 1982

Written by sixteen children who have brothers and sisters with a life-threatening illness who met at the Center for Attitudinal Healing. A must-read for both parents and siblings.

What About Me? When Brothers and Sisters Get Sick

Allan Peterkin, Frances Middendorf

Amazon.com synopsis: "Laura experiences conflicting emotions when her brother becomes seriously ill. Includes suggestions for parents to help their well children cope with a chronically ill sibling."

Oliver's Story

A book for Sibs of Kids with Cancer, see the American Childhood Cancer Organization web site for details.

Finances

One Small Sparrow: The Remarkable Real-Life Drama of One Community's Compassionate Response to a Little Boy's Life

Leeland, Jeff. Sisters, OR: Multnomah Books, 1995

Contains numerous ideas for methods to raise funds. Christian perspective.

Finding the Money: A Guide to Paying Your Medical Bills

Pammenter Tolley, Diane. Tynsdale House Publishers, 2001. Available from BMT Infonet: (888) 597-7674

A book to help families of people who need transplants. It provides information on assessing what your transplant and aftercare will cost, how to track and pay for bills, and fundraising. Includes stories from patients who succeeded in raising funds to cover costs of medical care.

Biographical/Other Families' Stories

Can I Take My Panda, Daddy?

by Greg Crooks
www.braintumorbook.com

Greg Crooks' son, Sean Andrew Crooks, passed away from a brain stem glioma in January of 2000. Can I Take My Panda, Daddy? chronicles the family's journey from the diagnosis to a year past Sean's death. You can read the first chapter on the web site - you will be hooked into this beautifully written story. Greg has a different style than most writers, and I like it.

I have now read the entire book. What can I say? I highly recommend this book. Greg writes what he feels, he holds nothing back when he writes. When he records conversations in his book, though, he holds back, writing what he would like to say in parentheses. How many times have we all done that?

Many of his thoughts spoke to me. This one: "I have a weird feeling . . . Sean is now a patient and not my son. . . I have been crying for who Sean was and looking with revulsion at what he has become." This thought crossed my mind briefly at diagnosis. Not many parents will admit this. I bring this up in my review to illustrate the sometimes brutal honesty with which Greg writes.

Here's another passage I marked, they are meeting with the doctors, soon to learn that their son has brain cancer: ". . . we answer, 'Okay', to the introductory, 'How are you holding up?' This is not the time or place for honesty. I don't think these people could handle a tirade of profanities from me or an endless scream from Jane."

I recommend this book for all families of children with cancer, and especially for bereaved families. [PF, 9/06]

Celebration of Life
A Mother's Journal to her Son During His Treatment for Childhood Cancer

Colleen Nagle Kisel
www.childhoodcancerbook.com

A true life account of a seven-year-old boy who was diagnosed with acute lymphoblastic leukemia a form of childhood cancer. The story is written in a journal form, from a mother to her child. [I haven't read the book, sounds good. PF]

 

Finding a Way Out

Susan Dineen
WestBow Press, 2011

In "Finding a Way Out," Dineen speaks from the point of view of a parent facing the harrowing task of assisting a teenager through cancer treatment. [I haven't read the book, see the link above for online reviews. PF, 2013]

An Angels’ Kiss - Embracing the Spirit of a Child Born with Cancer

by Buffy Krajewski
www.lulu.com

Written by the mother of a boy who was born with adrenocortical carcinoma, the story of her fight to save his life, and then her fight to save herself from her own feelings of guilt and depression. [I have not read this book, but there are many online reviews indicating that it has been well-received. PF, 7/07]

Alicia's Updates - A Mother's Memoir of Pediatric Cancer

by Rene A. Fesler
site.aliciasupdates.com

This book chronicles a family's journey through cancer and the impact it had not only upon their family but on those around them. Honest and friendly, this book will help any parent of a child with cancer feel less alone, and will help non-cancer parents understand what they go through. Easy to read and upbeat without glossing over the difficult parts, I highly recommend this book. [PR, 1/09]

I Never Signed Up for This!: An Upfront Guide to Dealing with Cancer at a Young Age.

by Katie, Strumpf
www.katiestrumpf.com

Written by a 25 year old who had cancer as a young girl.

Fly With a Miracle

Sheila Belshaw

"Sheila writes of her son Andrew's diagnosis and treatment for osteosarcoma. Andrew was 18 at the time of diagnosis, the year was 1984. Active in sports, his dream was to become a pilot. This British family was based in Africa, but Andrew and Sheila's other sons were in boarding schools in England at the time of diagnosis. Sheila returned to London to be with her son during his chemo and surgery for osteosarcoma. Luckily they found cutting-edge treatments to save his leg. In the 1980s, they did not have the nausea-controlling drugs that they have today - reading those parts of the book made me wince, thinking how it could have been easier for him with what they know today. One additional reason that I enjoyed the book was because of all the references to places in London that I visited the summer before I read it. The book was interesting reading; even though the Belshaws have a totally different lifestyle than I do, so many of the references to having a teen with cancer made me say "been there, bought the T-shirt" (a phrase which she herself used in the book). Against all odds Andrew eventually became a pilot and realized his lifelong dream. A true story, btw." (PF)

Fighting Chance, Journeys Through Childhood Cancer

A photo-journal by Harry Connolly, Tom Clancy, and Curt Civin. This book follows three children through treatment for childhood cancer. All the reviews we have read by parents of children with cancer report that the book captured the feelings and emotions realistically as it follows the ups and downs of treatment. Published in February, 1998. "The book really captures life at the clinic and provides a glimpse of reality as we know it. There are pictures in there that only cancer families would understand (and medical professionals)--betadyne prep for port access in one picture and in another picture, a mother is holding her son's sneakers while waiting for his weight to be measured. . . . . Some of you may even know some of the children whose lives were photographed (at Johns Hopkins)." [comments by K. Andry]

Sunshine

Norma Klein

"Request the book from your library. It's based on a true story (tapes that a young mom with bone cancer leaves as her legacy to her toddler daughter). She was diagnosed in the early 70s at age around 19, I think. Refused amputation (didn't want her baby to know her as a 'cripple'). Took radiation and chemo until she could no longer tolerate the nausea and weakness. She eventually died from the lung mets (as her doc predicted) a few years later. Despite the tragic outcome and her pitiful struggle (she lives with her boyfriend, who eventually leaves her for a while, then comes back), she writes with gentleness, beautiful prose and poetry. At the end she is full of wisdom and grace but fear of leaving her daughter and yearning for all the love she missed out on from her own mother. A must read..... 5 stars." (Review by an online parent.)

Perfect Vision: A mother's experience with childhood cancer.

Higgins-Brunner S, (1996), Research Triangle Publishing, Fuquay-Varina, NC. USA.

Kari's Story: Kari passed away from retinoblastoma after undergoing treatment for it for several years. Her mom Sharon wrote a book entitled "Perfect Vision".

Amanda's Gift

Scott MacLellan. (1998)

"This book compliments Nancy K.'s book - going into wonderful discussions on how having a child with a life threatening illness can effect Everyone. I can't tell you how much I got out of this book...I'm buying a copy for everyone in my family." (reviewed by one of our parents)

I Will Sing Life, Voices from the Hole in the Wall Gang Camp

Larry Berger and Dahlia Lithwick Little, Brown Co., Boston, 1992

"A very beautiful photographed book with individual stories of several children who attended the Hole in the Wall Gang Camp." The Hole in the Wall Gang Camp is a camp founded by Paul Newman for children with serious illnesses.

Mom's Marijuana: Life, Love, and Beating the Odds

Dan Shapiro, Vintage Books, 2001. "He developed Hodgkin's disease when he was 20, back in 1987. His mom, a strict anti-drug lady, ended up turning over her backyard garden to marijuana in order to help her son control the nausea from the chemotherapy (this is before Zofran). The book is full of love and hilarious stories."

When One Door Closes: A Teen's Inspiring Journey and Living Legacy

www.alexswish.com

By Susie and Bill Graham with H. Thomas Saylor. A teen's battle with osteosarcoma and how it impacted family, friends, caregivers, medical professionals and the community. Sales of the book benefit Make-A-Wish and have also been used to raise funds for the American Cancer Society.

Hope Is Here To Stay

www.laurensfirstandgoal.org

The story of Lauren and her family and her battle with a pediatric brain tumor.

Dance When the Brain Says No

www.forestdalepublishing.com

A mother's memoir of her daughter's battle with brain cancer.

This is a very good book. I recommend it to everyone, even if they are not parents of children with cancer. It's about how a mom deals with raising a spirited daughter, the push-and-pull of how much to let the daughter do what she wants and it's about how to reconcile our parental choices with how we were brought up ourselves. It's about the spunk and life of a young woman as she goes through treatment for brain cancer. It's about families, it's about us. Very insightful. [PF, 7/2011]

Education

Educating the Child With Cancer

A Guide for Parents and Teachers, 2nd edition, edited by Ruth Hoffman.

A fantastic and complete resource, written by top researchers in the childhood cancer education field; parent's personal experiences are also included. Available free through American Childhood Cancer Organization.

Negotiating the Special Education Maze: A Guide for Parents and Teachers

3rd ed., Anderson, Winifred, Stephen Chitwood, and Deidre Hayden. Bethesda, Maryland: Woodbine House, 1997

Excellent, well-organized text clearly explains the step-by-step process necessary to obtain help for your child. Has up-to-date resource list and a comprehensive bibliography. Step-by-step guide to obtaining help for your child. If you only read one book on this subject, this should be the one.

Back to School: A Handbook for Educators of Children with Life-threatening Diseases in the Yeshiva/Day School System

Chai Lifeline. 1995. Write to: 48 West 25th St., New York, NY 10010, or call (212) 465-1300. Covers diagnosis, planning for school reentry, infection control in schools, needs of junior and senior high school students, children with special educational needs, and saying good-bye when a child dies. Includes a bibliography and resource list.

Cancervive

Cancervive has several books, games, and videos applicable to childhood cancer concerns. I haven't seen any of these personally, although I heard Susan Nessim speak at the Canadian Candlelighter's Conference in Montreal in 1998. (PF) Includes: A Teacher's Guide for Kids with Cancer Susan Nessim and Ernest R. Katz, Ph.D. (Director of Behavorial Sciences and Clinical Professor of Pediatrics at Children's Hospital Los Angeles) created this manual for educators and families to help children with cancer re-enter school. This guide explains in layman's terms, childhood cancers, stages of the disease, the social and academic challenges kids face and strategies for successful school reintegration.

All Kinds of Minds

Levine, Mel, MD. Cambridge, Massachusetts: Educator’s Publishing Service, Inc., 1993

Highly readable book about different learning styles. Written for grade-school-aged children, but parents benefit from reading it, too.

The Trish Greene Back-to-School Program for Children with Cancer

Leukemia and Lymphoma Society

This program was designed to increase communication among healthcare professionals, parents, patients and school officials to assure a smooth transition from active treatment back to school and daily life. Materials, videos, and other printed inventory are available at all local LLS chapters.

Keeping a Head in School: A Student’s Book About Learning Abilities and Learning Disorders

Levine, Mel, MD. Cambridge, Massachusetts: Educator’s Publishing Service, Inc., 1991

Book about different learning styles for junior high and high school students.

The Misunderstood Child: Understanding and Coping with Your Child’s Learning Disabilities

3rd ed., Silver, Larry, MD. Times Books, 1998

Comprehensive discussion of positive treatment strategies that can be implemented at home and in the school to help children with learning disabilities. Excellent chapters on psychological, social, and emotional development, evaluation, and treatment.

Suggestions for Teachers and School Counselors

The Compassionate Friends. P.O. Box 3696, Oak Brook, IL 60522. (630) 990-0010.

Children with Limb Loss: A Handbook for Teachers

Center for Limb Differences. Booklet costs $2.75. To order call (800) 528-8989, ext. 4346.

Grief Comes to Class: A Teacher's Guide

Gliko-Braden, Majel. Centering Corporation, 1531 N. Saddle Creek Rd., Omaha, NE 68104. (402) 553-1200. Comprehensive guide to grief in the classroom.

Peterson's Guides to Colleges with Programs for Learning Disabled Students or Attention Deficit Disorders

6th ed. Princeton, NJ: Peterson's Guides,. 2000

Excellent reference, available at most large libraries.

The Jester and Pharley Phund

Home of The Jester Has Lost His Jingle and the Pharley Doll

The organization offers activity books for children with life-threatening illnesses, activities designed to bring laughter back into their lives. They offer educational materials for educators, librarians, therapists, psychologists and their colleagues that give children tools to improve their lives through language and reading skills and to inspire them to want to read and write; to provide enriching reading materials that increase the desire to read, to understand, to create

Cancer: General (not pediatric cancer specific)

Racing to the Beginning of the Road

Robert Weinberg

The story of the search for the origin of cancer, it relates in quite readable prose the excitement of biomedical research. It helps the parent by giving a better understanding of the complexities of cancer and an appreciation of the fact that the medical profession has come as far as it has in arresting the diseases.

Everyone's guide to Cancer Therapy

Malin Dollinger, MD, Ernest Rosenbaum, MD and Greg Cable

It's a thick book explaining how cancer is dx'd, treated and managed day to day. I read parts of it more than others (it's a resource book really) but it was very helpful. They've come out with new editions each year I understand too, so a newer copy will have the latest treatments in it.

Informed Decisions

ACS, 1997 ISBN 0-670-85370-4

Editor's note: I picked this book up from my public library. It is an excellent resource on the what and why of cancer treatments - includes new ideas, living with cancer, special needs (childhood cancer is here), descriptions of cancers, etc.

The People's Cancer Guide Book

Ronald E. Aigotti, MD

A very good guide for the layman written by a doctor. Practical information, plus advice on how to be both a good patient and a good advocate.

FreeBooks4Doctors

Free, online, full-text medical texts. The Cancer Medicine text has comprehensive sections on childhood cancer and childhood cancer survivorship issues. (4/03)

Books for Youths

Many of these are enjoyed by adults too.

Chemo, Craziness & Comfort, My book about childhood cancer

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 it's treatment. (American Childhood Cancer Organization.)

Emma the Mouse Brings Joy to the House

Susan Ross. Illustrated by Nick White.

Emma the Mouse Brings Joy to the House is a beautifully illustrated book for young children. In the story, a young girl is diagnosed with leukemia, and loses her hair. Her best friend Emma the mouse keeps her company and comes up with clever ways to help her friend cope with her hair loss. A delightful story for all children, especially children with hair loss and their friends and siblings.

Drums, Girls and Dangerous Pie

Jordan Sonnenblick

From the publishers web site: "The story of a very regular 13-year old boy whose pesky 5-year old brother is diagnosed with leukemia. Based on a true story, Drums, Girls and Dangerous Pie chronicles the effects of this devastating family illness from the winning perspective of healthy 13-year old Steven Alper who's normally obsessed with being popular, impressing the cutest girl in school and shining at his end-of-the-year concert. Like John Lennon said, “Life is what happens when you're busy making other plans.""

The Amazing Hannah, Look at Everything I Can Do!

Amy Klett and Dave Klett is available in English and Spanish. This 28 page picture book is written for the preschool (1 to 5 years) child who has been diagnosed with cancer. Through real-life photos, children will be able to identify with Hannah's hospital stay, special friends, tests, treatment and germ care. (American Childhood Cancer Organization.)

Oliver's Story

A book for Sibs of Kids with Cancer, see the American Childhood Cancer Organization web site for details.

My Blood Brother, a story about childhood leukemia

Elizabeth Murphy-Melas
Health Press, 2010

Beautifully illustrated, this book for young readers is written from the view of a big brother of a young boy diagnosed with ALL. He talks about his feelings and what the doctors and nurses have told him about leukemia and its treatment. A good source of information for young children, and parents will probably enjoy reading it too. [PF, 2010]

C is for Cancer

For young children, written by the mom of a child with leukemia. Article on Raspberry blog. C is For cancer is available through Denise Barton by e-mailing her at denisebarton@telus.net. [2009]

I'm Still Me! Coping With Leukemia

The Dr. Wellbook Collection, Tim Peters and Company, Inc.: 1997

A richly illustrated book about Herbie, a baby chicken who has leukemia. When he loses the feathers on his head all his barnyard friends put cracked egg shells on their heads to look like him. He is still Herbie, and his friends still like him. At the back of the book is a short and appropriate message for parents and educators as well as the symptoms of leukemia, a lead-in for discussions, and a speech written by a ten-year old survivor of leukemia. Appropriate for young children and their classmates.

Joe Has Leukemia (free pdf book)

CLIC Sargent website

The British CLIC Sargent web site has several books for children and youth available for pdf download. I am listing Joe Has Leukemia, because it was recommended by the parent of a young child with leukemia, but there are other books that look good on the same web site. (PF, 2011)

You and Your Cancer: A Child's Guide

Lynda Cranston

This book is given to some parents in the hospital. Reportedly, it is a good book to read to a young child (elementary school level) to explain about the treatment and its repercussions. (Book published in 2001; reviewed here 2008.)

Chemo Girl

Christina Richmond

The story Chemo Girl is about a super heroine named Chemo Girl who is hired by Dr. Molly Schwenn to miniaturize and battle the Queen Rhabdo. Chemo Girl along with her pet sidekick, Brouvi succeed in their fight. This book is great for children living with all types of childhood cancer, not just rhabdomyosarcoma. My daughter, Apryl, first learned of ChemoGirl's power at the age of 7 when she herself was diagnosed with leukemia. During procedures we talk about Chemo Girl and her ability to erradicate cancer cells. The book written by Christina Richmond, a feisty 12 year old who succumbed to rhabdomyosarcoma in 1996 will be a benefit to children everywhere undergoing probably the biggest battle of their lives. (reviewed by an online parent)

The Jester Has Lost His Jingle

David Saltzman

A story by a cancer patient about finding laughter.

I want to grow hair, I want to grow up, I want to go to Boise

Erma Bombeck, 1989.

Chemo to the Rescue

An online book for young children with leukemia. Highly recommended by a parent. Free. (2010)

Happy Birthday To You

Su Chen Fang

"While riding his bicycle, Sam meets and makes friends with Lily, a young girl undergoing treatment for cancer, and, learning that Lily's birthday is coming up soon, along with a treatment at the hospital, Sam comes up with a way to make Lily's birthday special."

Home in Time for my Birthday

Lynn D Belkin
Home in Time for my Birthday

Home in Time for My Birthday is a positive story for children and families facing a diagnosis. It is also a resource for family members, friends and classmates. Written by a pediatric brain tumor survivor.

Solving Social Problems (My name is not dummy, I can't wait and I want to play are 3 of them)
Coping With Intense Feelings (I'm mad, I'm frustrated, I'm scared, I'm proud are all good ones)

Two series of children's books by Elizabeth Crary

"Not about ill kids but very helpful - these are short books that let the children choose the ending, then come up with their own ideas. It really reinforces that they have choices in how they handle stress, and gives them ideas that are their 'own'. I'd recommend them for the 4-8 year old crowd." (reviewed by one of our parents)

My Book for Kids With Cansur: A Child's Autobiography of Hope

Jason Gaes

This book is highly recommended by parents. The story is written by cancer child and illustrated by his brothers. Jason's parents also wrote a book that is very informative: A Child's Autobiography of Hope by Jason Gaes, Melius & Peterson Publishing, South Dakota, 1987.

My ABC Book of Cancer

Shannin Chamberlain Synergystic Press, San Francisco, 1990

The story--in ABC format in text and drawings--of a 10-year-old cancer patient. It has supplemental text about her and childhood cancer, glossary, bibliography and resources list.

I Had a Tumor, It Wasn't a Rumor.

Ross Romenesko

Eighteen year old pediatric cancer survivor, Ross Romenesko, wrote this poem when he was seven years old. The second grade assignment was to write a poem about "something he knew a lot about". Unfortunately, he knew a lot about cancer. Since second grade, Ross has been sharing the story of his journey through cancer at Relays for Life and other fund raising events as well as with service groups and schools across the state of Wisconsin. The book contains photos of Ross, his family, caregivers and friends, taken during and after treatment. Ross tells his story with humor and insight, including 30 tips for making "life with cancer easier to swallow". In the Family Reflections section, his father, mother and older brother candidly share how Ross's cancer affected their lives. The last section, My Cancer Experience, is a template where patients and their families are encouraged to tell their own healing story. This book/workbook is a wonderful vehicle for initiating conversations about tough issues, like counseling, loss, the side effects of chemotherapy and the importance of a positive attitude. [CCCF review]

The entire book (pdf format) as well as tips and other useful information are available on the web site (listed above).

I'm a Kid Living with Cancer

Jenevieve Fisher, illustrated by Casey Huie

A book for elementry-school aged children. Talks about cancer, treatment, and tests. The author is a cancer survivor and a radiation oncology therapist. [PF 2011]

Little Tree: A Story for Children With Serious Medical Problems

Joyce C. Mill, Michael Chesworth

Amazon.com synopsis: "One night, during a terrible storm, Little Tree's branches are hurt. Her friend Amanda the squirrel calls upon the Tree Wizards of the Forest to help, and they explain that they will have to remove Little Tree's branches in order to save her life. With Amanda's help, Little Tree learns to accept her new, changed self. Chesworth's illustrations provide a magical backdrop to this moving story. Based on the story of a little girl the author met, who had to undergo multiple amputations."

There Is a Rainbow Behind Every Dark Cloud

Gerald G. Jampolsky

Eleven children share their experiences with terminal illness, especially the ways they helped each other cope with the prospect of their own death.

Having a Brain Tumor

The Talking Lady Press

Child friendly book for families where either parent or child has been diagnosed with a brain tumor. It is also a useful teaching tool for medical, social work, rehab, and education professionals. It is part therapy medium and part workbook for young children who need the facts presented in a gentle and engaging manner. Our book encourages its readers to discuss their fears and feelings. The information is presented as a storybook featuring dialogue between children from a variety of ethnic backgrounds, rather than as a dry text. (Note: 2003, this book seems to be out of print but might be available at a library.)

An Exceptional View of Life

Written and illustrated by children with disabilities. Editted by Robert Goodman & Bob Kraus, A Child's Point of View Publication, 1977.

Going to the Hospital

By Barbara Taylor Cork, Derrydale Book, NY, 1989.

When Someone Has a Very Serious Illness

Marge Heegaard, Woodland Press, Minneapolis, 1991

Kathy's Hats: A Story of Hope

Trudy Krisher

Chemo Crusader

Melodie Homer. (For young children; recommended by a parent.)

The Lemonade Club

Patricia Polacco. For 4-8 year old readers, this book is about a young girl who is diagnosed with leukemia and how her fifth-grade class helps her out. Recommended by a parent. (1/07)

Brittany's Books

www.brittanysbooks.com

Books for 4-12 year olds dealing with cancer, terminal illness, and loss of a sibling to cancer.

Miscellaneous

Advice to Doctors and Other Big People from Kids

Gerald G. Jampolsky

"Though aimed at pediatric healthcare practitioners, this wonderful, often touching book has much wider appeal: parents, teachers, and kids themselves will profit from it. The authors and illustrators of the book are twenty-five children, all patients at the Center for Attitudinal Healing in Tiburon, California, who were hospitalized for catastrophic illness."

Bereavement and Terminal Illness (Adult reading)

www.compassionbooks.com

This site has a good listing of bereavement books for all ages.

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Callanan , Maggie, and Patricia Kelley. New York: Bantam Books, 1997

Written by two hospice nurses with decades of experience, this book helps families understand and communicate with terminally ill patients. Compassionate, comforting, and insightful, Final Gifts movingly teaches us how to listen to and comfort the dying. Highly recommended.

Cancer Pain Relief and Palliative Care in Children

World Health Organization, 1999, 76 pages (available in English; French and Spanish in preparation)

Available on Amazon or the WHO site.

Home Care for the Seriously Ill Child: A Manual for Parents

Modlow, D. Gay, and Ida M. Martinson. 1991. $7.95 from Children’s Hospice International (703) 684-0330

Helps parents explore the possibility of home care for the dying child. Contains practical information on what to expect, methods for pain relief, and control of medical problems. Appendices on medications, bibliographies, and dos and don’ts for helping bereaved parents

Bereavement: A Magazine of Hope and Healing

Founded in 1987 by a bereaved mother to provide support for those grieving, this magazine allows direct feedback from the bereaved to helping professionals and helps the nonbereaved learn what helps and what hurts. For a free copy or to subscribe, call: Bereavement Publishing, Inc., (888) 604-4673 (HOPE)

When the Bough Breaks: Forever After the Death of a Son or Daughter

Bernstein, Judith R. Kansas City, Missouri: Andrews & McMeel, 1998

A serious and sensitive look at how to cope with the loss of a child.

On Children and Death

Kubler-Ross, Elisabeth, MD. New York: Macmillan, 1983

In this comforting book, Dr. Kubler-Ross offers practical help for living through the terminal period of a child’s life with love and understanding. Discusses children’s knowledge about death, visualization, letting go, funerals, help from friends, and spirituality.

Closer to the Light: Learning from Near Death Experiences of Children

Morse, Melvin, MD. New York: Villard Books, 1990

Dr. Morse, a pediatrician and researcher into children’s near-death experiences, writes about the startlingly similar spiritual experiences of children who almost die.

Parental Loss of a Child

Rando, Therese, PhD, ed. Champaign, Illinois: Research Press, 1986

Thirty-seven articles cover death from serious illness; guilt; grief of fathers, mothers, siblings, single parents; professional help; advice to physicians, clergy, funeral directors; support organizations.

I Remember You: A Grief Journal

Wild, Laynee. San Francisco: HarperCollins, 1994

A journal for recording written and photographic memories during the first year of mourning. Beautiful book filled with quotes and comfort.

Children Mourning, Mourning Children

Doka, Kenneth, ed. Hemisphere Publications, 1995

A collection of chapters (first presented at the Hospice Foundation of America conference) written by many healthcare professionals who work with grieving children. Topics include children's understanding of death, answering grieving children’s questions, the role of the schools, and many others.

Talking About Death: A Dialogue Between Parent and Child

3rd ed., Grollman, Earl. Boston: Beacon Press, 1991

One of the best books for helping children cope with grief. Contains a children’s read-along section to explain and explore children’s feelings. In very comforting language, book teaches parents how to explain death, understand children’s emotions, understand how children react to specific types of death, and know when to seek professional help. Also contains a resource section.

How Do We Tell the Children?

A Step-by-Step Guide for Helping Children Two to Teen Cope When Someone Dies, 3rd ed., Schaefer, Dan, and Christine Lyons. New York: Newmarket Press, 2002

If your terminally ill child has siblings, read this book. In straightforward, uncomplicated language, the authors describe how to explain the facts of death to children and teens and show how to include the children in the family support network, laying the foundation for the healing process to begin. Also includes a crisis section, for quick reference on what to do in a variety of situations.

Creating Tender Memories

A gentle guide to what you can do when your child dies. By Mary Lou Eddy and Linda Raydo/modified by Anne Jack. It's a Centering Corporation book, a nice little booklet, with interesting hints for things to do right before your child dies. (handprints, etc.)

Thank You For Coming To Say Goodbye

By Joy Johnson and Janice L. Roberts. (also from Centering Corp.) It has chapters written for funeral directors (interesting reading!), teachers, etc. It makes some interesting points. [notes by Lynne]

Living When a Loved One Has Died

By Earl A. Grollman. This book was recommended in the online groups; the reviews of this book on amazon.com are outstanding.

Sibling Grief: Healing After the Death of a Sister or Brother

By P. Gill White, PhD, director of The Sibling Connection. Endorsed by the Bereaved Parents of the USA, Sibling Grief validates the emotional significance of sibling loss, drawing on clinical experience, research, and wisdom from hundreds of bereaved siblings to explain the five healing tasks specific to sibling grief. Sibling Grief includes a section on bibliotherapy, or the use of books to heal. (2007)

Bereavement and Terminal Illness (Youth reading)

Young child

The Fall of Freddy the Leaf: A Story of Life for All Ages

Buscaglia, Leo. New York: Holt, Rinehart and Winston, 1982

This wise yet simple story about a leaf named Freddy explains death as a necessary part of the cycle of life. This book is out of print, but may be available in your local library.

Last Week My Brother Anthony Died

Hickman, Martha. Abingdon, Tennessee: 1984

Touching story of a preschooler’s feelings when her infant brother dies. The family’s minister (a bereaved parent himself) comforts her by comparing feelings to clouds--always there but ever changing.

Brittany's Books

www.brittanysbooks.com

Books for 4-12 year olds dealing with cancer, terminal illness, and loss of a sibling to cancer.

Lifetimes: The Beautiful Way to Explain Death to Children

Mellonie, Bryan, and Robert Ingpen. New York: Bantam Books, 1983

Beautiful paintings and simple text explain that dying is as much a part of life as being born.

Thumpy's Story: A Story of Love and Grief Shared

Nancy Dodge

I Had a Friend Named Peter Peter; Talking to Children about the Death of a Friend

Janice Cohn and Gail Ownes

My Brother Matthew

Mary Thompson, Woodbine House, 1992.

School-aged children

What on Earth Do You Do When Someone Dies?

Romain, Trevor. Minneapolis MN: Free Spirit Publishing, 1999

Warm, honest words and beautiful illustrations help children understand and cope with grief.

The Empty Place: A Child’s Guide Through Grief

Temes, Roberta, PhD. Far Hills, New Jersey: New Horizon Press, 1992. To order, call (402) 553-1200

Explains and describes feelings after the death of a sibling, such as the empty place in the house, at the table, in a brother’s heart.

Charlotte’s Web

White, E.B. New York: Harper, 1952

Classic tale of friendship and death as a part of life. (The videotape is widely available to rent.)

Hang Tough

Mathew Lancaster, Paulist Press, New Jersey, 1985.

KidsAid

(not a book, a web site). KidsAid is a safe place for kids to share and to help each other deal with grief about any of their losses. It's a place to share and deal with feelings, to show artwork and stories, to talk about pets, to meet with one's peers.
www.kidsaid.com/

Sargeant's Heaven

By Icy Frantz. For siblings who have experienced the loss of their brother or sister. Not available on Amazon, instead, go to the web site:

www.sargeantsheaven.com

Teenagers

Teenagers Face to Face with Bereavement

Gravelle, Karen, and Charles Haskins. Englewood Cliffs, NJ: J. Messner, 2000

The perspectives and experiences of seventeen teenagers comprise the heart of this book, which focuses on teens coping with grief.

Straight Talk About Death for Teenagers: How to Cope with Losing Someone You Love

Grollman, Earl. Boston: Beacon Press, 1993

Wonderful book that talks to teens, not at them. Discusses denial, pain, anger, sadness, physical symptoms, and depression. Charts methods to help teens work through their feelings at their own pace.

When a Friend Dies: A Book for Teens About Grieving & Healing

Marilyn E. Gootman, Pamela Espeland (Editor), Deborah Prothrow-Stith

(not sure which age group)

Talking with Angel: About Illness, Death and Survival

Evelyn Elsaesser-Valarino, Floris Books, 2005, ISBN 9780863154928
website

This book is about a young girl who realizes she is going to die from leukemia. The author is interested in near death experiences. While this book was not recommended by a parent, it looks interesting. [PF, 2011]

Living When a Loved One Has Died

Earl Grollman Beacon Press, Boston, 1977

Letters I Never Wrote, Conversations I Never Had

Charles Ben Bissell Tilden Press, NY, 1983.

Painting the Sunsets With the Angels

Vann Wesson

The Everlasting Snowman

Darden & Adams

Gentle Willow: A Story for Children about Dying

Joyce C. Mills

On the Wings of a Butterfly

Marilyn Maple

Remember the Secret

Elisabeth Kubler Ross

Links to more lists of bereavement books

Centering Corporation, Compassionate Friends

Lists more than 350 books and videos on coping with serious illness, loss, and grief.

Links to other lists of childhood cancer books/pamphlets

For more printed materials, see the links just below and also check your local hospital, Candlelighters/American Childhood Cancer Organization, Leukemia Society, Cancer Society, and public library for books and free pamphlets. Sometimes a search of an online bookstore turns up new and interesting titles on childhood cancer.

American Childhood Cancer Organization

Under "Information", a listing of available pamphlets and books. Some are available free of charge.

Association of Pediatric Oncology Nurses

offers several books on childhood cancer concerns.

NCI page on childhood cancers

offers Young People with Cancer: A Handbook for Parents.

Childhood Cancer Guides

on childhood cancers lists books, web sites, and videos.

FreeBooks4Doctors

Free, online, full-text medical texts. The Cancer Medicine text has comprehensive sections on childhood cancer and childhood cancer survivorship issues. (4/03)

UT Health Center Medical Research Library

Links to books and journals available online. Extensive resources.

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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