Appendix 5: Recommended Reading and Audiovisual Materials - This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers

APPENDIX 5

RECOMMENDED READING AND AUDIOVISUAL MATERIALS

Included here are general reading and audiovisual materials that are recommended resources. The references for this book contain additional information on specific topics. Cancer associations and clinics can be very helpful in locating these materials.

• READING MATERIALS FOR CHILDREN AND TEENAGERS
• READING MATERIALS FOR OTHERS
• AUDIOVISUAL MATERIALS

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READING MATERIALS FOR CHILDREN AND TEENAGERS

A primer of brain tumors. A patient's reference manual. (Fifth edition). The Association for Brain Tumor Research (1991). Chicago.
An excellent resource for older teenagers, this manual describes brain anatomy, types of tumours, diagnostic procedures and treatment. This organization also provides a number of pamphlets addressing the specific kinds of tumours seen in children as well as information on emotional coping.

Bone marrow transplants: a book of basics for patients. Stewart SK (1992). Highland Park: BMT Newsletter.
This comprehensive and practical book is written by patients for patients, with assistance from doctors and nurses. The fundamental medical concepts of bone marrow transplantation are well-described, as are the emotional and psychological aspects. The book also includes a list of resources and a glossary. It is suitable for older teenagers.

Childhood cancer: information for the patient and family. Barr RD (Ed.) (1988). Toronto: Canadian Cancer Society.
For older children and teenagers, this book provides medical and practical information about many kinds of childhood cancer and their treatments. Of great value is the section on investigative tests and how their results are used in selecting therapy. The medical team is described as well as the resources available to families. A drug list and glossary enhance this accomplished manual.

Children with limb loss: a handbook for families (birth to five years). Area Child Amputee Center (1990). Grand Rapids: West Michigan Printing Inc.
Children with limb loss: a handbook for families (six to twelve years). Area Child Amputee Center (1990). Grand Rapids: West Michigan Printing Inc.
Adolescents with limb loss: a handbook for adolescents and their families. Area Child Amputee Center. (1990). Grand Rapids: West Michigan Printing, Inc.
This three-part series is designed to help children, adolescents and their parents understand the medical and psychosocial implications of limb loss. These books are informative and practical.

Hang tougHF. [sic]. Lancaster M (1983). Mahwah: Paulist Press.
This book was written by a 10-year-old with Ewings sarcoma for school-age children with cancer. It uses humour and illustrations to describe chemotherapy, radiation, hospitalization and procedures, and it includes helpful coping strategies.

Help yourself. Tips for teenagers with cancer. Adria Laboratories Inc., the National Cancer Institute (1983).
This is a booklet written and designed for teenagers with cancer using information, ideas and experiences from other young people with cancer. Part of its attraction is the varied format, employing different colours, type, page layouts and photographs. Everyday language and quotes from teenagers are used. The booklet is divided into short, easy-to-read sections. It gives many practical suggestions on how to deal with diagnosis, treatment, hospital, appearance, eating, family and friends, school, relapse and the future. It offers points of view from both the teenagers themselves and others. Additional readings are included, as well as information on other National Cancer Institute materials and the cancer information service.

I want to grow hair, I want to grow up, I want to go to Boise. Bombeck E (1989). Toronto: Harper and Row, Publishers.
Humour, optimism and the inner strength of children with cancer are the focus of this book. Erma Bombeck, a well-known humourist, interviewed children with cancer and their families, and included their stories and artwork. Children show remarkable courage and resilience, and maintain their sense of humour. They share optimism and insight. The book focusses on survivors of cancer. It is appropriate for any audience, particularly children with cancer and their families.

My book for kids with cansur: a child's autobiography of hope. Gaes J (1987). Aberdeen: Melius Publishing Corp.
Jason Gaes wrote this from-the-heart story after he was diagnosed with cancer. He wanted other children with cancer to have hope. Lettering and spelling are Jason's own. His brothers drew the illustrations. This book is also excellent for families, volunteers, teachers and health professionals.

Straight from the siblings. Another look at the rainbow. The Center for Attitudinal Healing (1982). Millbrae: Celestial Arts.
This is a book that siblings of a child or teenager with cancer will appreciate. Thirty-four children with terminally ill brothers and sisters share their experiences.

There is a rainbow behind every dark cloud. The Center for Attitudinal Healing (1978). Millbrae: Celestial Arts.
Eleven children share their experiences with terminal illness, especially the ways they helped each other cope with the prospect of death.

"They never want to tell you." Children talk about cancer. Bearison D (1991). Cambridge: Harvard University Press.
Psychologist, David Bearison, asked children with cancer to express their feelings and concerns. Their narratives are compelling, and honestly reveal their hopes and fears. Common themes offer important insights into the child's experience with cancer and coping with it. Children suggest ways to help others with cancer adjust to the disease. This book is also helpful for families, health professionals, volunteers and teachers.

When your brother or sister has cancer. American Cancer Society (1984). Atlanta.
This booklet is for school age children with a sibling with cancer. It was adapted from a booklet prepared by Laura A. Rudolph for The Children's Orthopedic Hospital and Medical Center, Seattle, Washington. Topics include feelings of sadness, guilt, anger, jealousy and anxiety about parents.

Why, Charlie Brown, why? a story about what happens when a friend is very ill. Schultz C (1990).
New York: Pharos/Topper Book.
This is a story about what happens when a classmate of Linus' is diagnosed with leukemia. The cartoon characters talk about various aspects of the illness, such as chemotherapy, blood tests, baldness, visiting hospital and returning to school. The emphasis throughout is on caring relationships.

You and leukemia: a day at a time. Baker L (1987). Toronto: W.B. Saunders Company.
A physician uses children's language and illustrations to explain and help children cope with cancer. The book comprehensively describes possible causes of cancer, diagnosis, tests, treatments and potential complications, and includes an excellent section on how the body functions. Suggestions for living with cancer provide helpful ideas for children on coping. This book is easily understood by the school-age child. Children eight years and older could read it themselves. The text could be adjusted for preschoolers who would benefit from the illustrations. This resource is also appropriate for families, volunteers, teachers and health professionals.

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READING MATERIALS FOR OTHERS

A window to heaven. Komp DM (1992). Grand Rapids: Zondervan Publishing House. A pediatric oncologist shares her observations of dying children. Her strong faith is central, making this book a rich memoir.

Adolescents and death. Corr CA, McNeil JN (1986). New York: Springer. This book provides a framework for understanding adolescents' reactions and adaptations to death.

Allogeneic bone marrow transplantation. Franco T, Gould DA In: Semin Oncol Nurs 1994;10:3-11. This article provides a technical overview of allogeneic bone marrow transplantation. It describes the diseases that are treated this way and the steps taken to minimize the likelihood of graft-versus-host disease. Patient care issues and potential problems are examined for each stage of the transplant process. Finally, areas for future development are identified.

Annotated resource list for families of children with cancer and the professionals who care for them.
Candlelighters Childhood Cancer Foundation Canada (1992). Toronto.
This resource provides several hundred references (annotated) for books and journal articles addressing the medical and psychosocial aspects of childhood cancer. It is a comprehensive collection.

Armfuls of time. The psychological experience of the child with a life-threatening illness.
Sourkes BM (1995). Pittsburgh: University of Pittsburgh Press. Barbara Sourkes is a psychologist who specializes in psychotherapy with children with cancer and other serious diseases. In this book she provides a window into her therapy sessions, allowing us to listen with her to the children's stories and conversations, and to see their drawings. Her therapeutic techniques, particularly play with stuffed animals, enable the children to express the experience of living with the threat of loss. Her analyses and interpretations lead the reader into a world of extraordinary challenges and exceptional resilience.

Cancer 1993;71(Supplement).
This volume contains the proceedings from the American Cancer Society Workshop on Children with Cancer (Naples, Florida, Sept.5-6/91). The papers are organized around seven major themes: patterns of care, care of adolescents and young adults, psychosocial issues, long-term survival, resources for care, prevention and detection, and the laboratory-clinical interface.

Childhood cancer and the family: meeting the challenge of stress and support. Chesler M, Barbarin O (1987). New York: Brunner/Mazel Publishers.
This comprehensive book focusses on stress, coping and the social supports families need. It stresses the importance of hope and optimism, open communication, and normalization of lives. Suggested coping strategies are based on research and families' own reports. This is an excellent resource for health professionals, volunteers and families.

Childhood cancer survivors. Past, present, and future.
Neglia JP In: Cancer 1994;73:2883-5.
This editorial is a brief overview of the outlook for childhood cancer survivors. It discusses life adjustment and long-term medical complications of therapy.

Children with cancer: a comprehensive reference guide for parents. Bracken JM (1986).
New York: Oxford University Press.
In this reference for families of children with cancer, Jeanne Bracken used her experience as a mother of a child with cancer and her skill as a reference librarian to compile information on cancer, treatments and coping. This book is well-organized and easy to understand. It includes resources, international clinics and organizations.

Coping with childhood cancer: where do we go from here? Adams DW, Deveau EJ (1988).
Reston: Reston Publishing Company.
Although very helpful for professionals, this book is written to help parents cope with the emotional and social impact of childhood cancer. It addresses both the medical and emotional issues relevant at different stages of the disease process, including grief reactions. Patient and family experiences add to the usefulness of this book.

Current concepts in autologous bone marrow transplantation. Crouch MA, Ross JA In: Semin Oncol Nurs 1994;10:12-9.
This technical article reviews the theoretical considerations for autologous bone marrow transplantation, marrow purging, peripheral stem cell transplants and the role of colony-stimulating factors. In addition, it looks at the role of autologous bone marrow transplantation in the treatment and outcome of specific diseases. Finally, it addresses avenues for future development.

Everyone's guide to cancer therapy. How cancer is diagnosed, treated and managed day to day. Dollinger M, Rosenbaum EH, Cable G. Adapted by the Canadian Medical Association: Hasselback R (Ed.) (1992).
Toronto: Somerville House Publishing.
This is a comprehensive resource for cancer patients and families. It reviews cancer diagnosis, treatment and recovery. Strategies for coping as well as a glossary and resources are included. A section is devoted to cancer in children.

Facts on ... Canadian Cancer Society.
These are short pamphlets that are easy and quick to read. Each covers a different cancer and includes information for adults and children. Cancer in general is introduced and the part of the body affected by the particular cancer is described. Possible causes of the particular cancer, detection and diagnosis, treatment and the future are discussed. These pamphlets are revised and reprinted as information changes.

Making cancer less painful: a handbook for parents. McGrath PJ, Finley GA, Turner CJ (1992). Halifax: Izaak Walton Killam Children's Hospital & Dalhousie University.
This is an excellent resource proposing that the child with pain is the expert who can best describe when pain is adequately managed. It describes a variety of techniques to control pain and promotes the team approach, with parents being actively involved with health professionals. This book is available from provincial Astra Pharma Inc. representatives.

Principles and practice of pediatric oncology. Pizzo PA, Poplack DA (Eds.). (1989). Philadelphia: J B Lippincott Co.
A very comprehensive oncology textbook for professional health care providers. All aspects of childhood cancer are addressed in depth: causes, types, treatments, management, side effects, late effects and advocacy issues.

Psychosocial consequences of childhood cancer. Hymovich DP, Roehnert JE In: Semin Oncol Nurs 1989;5:56-62.
This is a clearly written article examining the late psychosocial consequences of childhood cancer on long-term survivors. It incorporates results from studies and includes factors that influence the emotional, social, educational and economic costs to survivors, their parents and siblings. Risk factors for psychosocial problems are identified and the issues of prevention and intervention are mentioned.

School re-entry resource manual. Candlelighters Childhood Cancer Foundation Canada (1992). Toronto.
This resource manual is available through Candlelighters Childhood Cancer Foundation Canada and provides a thorough collection of material for educators, health professionals and parents. It includes resources available, pamphlets, annotations and journal references.

Sibling grief. Davies B. (1989). Edmonton: Proceedings from Conference "We can help ourselves" for families of children with cancer.
This book discusses sibling grief in terms of its immediate and long-term effects, including its impact on self-concept and family relationships. Grief is considered as both a family and individual experience. Although written for families, this is an excellent resource for health professionals, volunteers and teachers.

Students with cancer. A resource for the educator. National Cancer Institute, Washington and Metropolitan Candlelighters, Department of Pediatric Hematology-Oncology, University of Kansas Medical Center. Reprinted by the Canadian Cancer Society (1985).
This booklet is aimed at teachers who have a child or teenager with cancer in their class. Insights from teachers who have taught children with cancer are incorporated into suggestions on how to plan for this situation and improve the quality of the school experience. Ideas are offered in areas such as co-ordination with treatment staff and parents, dealing with classmates' knowledge and acceptance of the student with cancer, and integrating the student into regular classes. Special concerns of adolescents are discussed, such as independence and peer acceptance. A section is devoted to coming to terms with a young person's terminal illness and death. A bibliography and addresses of Candlelighters and the Canadian Cancer Society Divisions are included.

Suffer the little children: the battle against childhood cancer. Demers J (1986). Montreal: Eden Press.
This is a moving account by a pediatric oncologist of personal experiences in caring for children with cancer. It includes information on the diagnosis, treatment and long-term effects of childhood cancer.

Talking about death: a dialogue between parent and child. (3rd Edition). Grollman E (1976). Boston: Beacon Press.
This is a classic book to help children understand the concepts of death. It encourages parents to discuss death openly and honestly and it explains the relevance of developmental stages in relation to understanding death concepts. Words to interpret death to children are suggested. A story about a grandfather's death can be read to a child. This book includes a guide for parents and a resource list of books, films and tapes for children. It is an excellent illustrated resource for family, friends and health professionals.

The bereaved parent. Schiff H (1977). New York: Penguin Books.
This book is written by a parent who lost a child. She presents some of the grief reactions parents encounter and guidelines for coping with the overwhelming experience. This is a sensitive, helpful book for parents who have lost a child.

The deepening shade: psychological aspects of life-threatening illness. Sourkes BM (1982). Pittsburgh: University of Pittsburgh Press.
This book focusses on the impact of living with a life-threatening illness - how lifestyles are disrupted, the heightened sense of time, and loss of control. Interviews with patients provide glimpses of what it is like to live with cancer. The book offers many ideas to help patients and families cope and is directed to health professionals and volunteers.

The Candlelighters guide to bone marrow transplants in children. The Candlelighters Childhood Cancer Foundation (1994). Bethesda.
This book is a useful guide for any parent whose child may be undergoing a bone marrow transplant. The medical information is presented well, as is the practical information about coping emotionally and with school re-entry.

The private worlds of dying children. Bluebond-Langner M (1978). Princeton: Princeton University Press.
Myra Bluebond-Langner writes about her field research with dying children. She addresses the awareness and communication patterns in terminally ill children as well as staff and parental reactions. The book provides insight into children's thoughts and feelings as well as theory for professionals working with children and their families.

Your child has retinoblastoma. Savard-McQuigge H, Gallie BL (1989). Canadian Cancer Society.
This is a booklet for parents of a child newly diagnosed with retinoblastoma. Using clear language, it provides a practical, step-by-step approach to understanding this disease. Topics include: the impact of the disease on the family; medical aspects, such as diagnosis, hospital visits, and treatments; facets of life after treatment; and genetic information. A glossary and list of some community resources are included.

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AUDIOVISUAL MATERIALS

Mister Rogers talks about childhood cancer. (1989). Atlanta: Mister Rogers' Neighborhood and American Cancer Society.
The characters from The Land of Make Believe interview children about feelings (fear, anger, guilt, sadness). Two VHS tapes: Program 1 - 25:30 mins; Program 2 - 26:07 mins.

Mister Rogers talks with parents about childhood cancer. (1989). Atlanta: Mister Rogers' Neighborhood and American Cancer Society.
Parents share ways of handling frustration and confusion during diagnosis and treatment, as well as bereavement experiences. Two VHS tapes: Program 1 - 25:30 mins; Program 2 - 22:06 mins.

No fears... no tears: children with cancer coping with pain. Kuttner L (1986). Vancouver: Multimedia Productions Inc. and Canadian Cancer Society, B.C./Yukon Division.
This video demonstrates techniques of distraction, deep breathing, relaxation, imagery and hypnosis to decrease pain and anxiety. Parents are taught the techniques and eventually coach their children. Leora Kuttner is an experienced child psychologist from B.C. Children's Hospital. (27:57 mins.)

Pictures from camp. (1992).
Canadian Cancer Society, Alberta/NWT Division and Red Motel Pictures, Calgary.
Videos for different audiences show the activities, pleasures and friendships of a camp for children with cancer. Children who are hesitant to attend camp will be convinced they want to go after seeing this video. Parents who are reluctant to let their child attend camp will be reassured that camp is a positive experience. There are three versions of this video - for potential campers (15 mins.); for potential donors (15 mins.); for television (24 mins.).

Why, Charlie Brown, why? Schultz C (1990).
American Cancer Society.
This video is adapted from the book, Why, Charlie Brown why? - a story about what happens when a friend is very ill. It is available from the Canadian Cancer Society Division offices. Please see previous annotation on the book. (30 mins.)

 

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