The following excerpt is taken from Appendix D of
Childhood Cancer: A Parent's Guide to Solid Tumor Cancers
, 2nd Edition, by Honna Janes-Hodder & Nancy Keene, copyright 2002 by
O'Reilly & Associates, Inc. For book orders/information, call
1-800-998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
A wealth of information is available through libraries and computers. This resource article briefly describes how to get the most from these resources and lists specific books and online sites that you might find helpful when researching your child's medical condition or treatment.
The information provided has been organized by topic. If you cannot find a book in your bookstore or library, the following organizations may have copies available as well as additional resources for all age groups.
Candlelighters Childhood Cancer Foundation. Bibliography and Resource Guide. 1998. (800) 366-CCCF, or for CCCF-Canada, (800) 363-1062. Extensive listing of books and articles on childhood cancer, coping skills, death and bereavement, effects on family, long-term side effects, medical support, and terminal home care. Excellent resource.
Centering Corporation. Creative Care Package. (402) 553-1200. Lists more than 350 books and videos on coping with serious illness, loss, and grief.
Bearison, David J. They Never Want to Tell You: Children Talk About Cancer. Cambridge, Massachusetts: Harvard University Press, 1991. Several children and teenagers living with cancer candidly discuss their feelings. Written by a developmental psychologist.
Bombeck, Erma. I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise. New York: Harper & Row Publishers, 1989. Funny, touching book about children surviving cancer. This book is out of print but may be in your local library.
Connolly, Harry. Fighting Chance: Journeys Through Childhood Cancer. Woodholm House, 1998. Contains more than 200 pictures of patients, families, and caregivers battling childhood cancer.
Cousins, Norman. Head First: The Biology of Hope and the Healing Power of the Human Spirit. New York: E.P. Dutton, 1990. After 25 years as editor of Saturday Review, Cousins spent a decade on the medical staff of UCLA researching the biological basis for hope. He presents the mounting volume of evidence that positive attitudes help combat disease. Also contains excellent information on enhancing the doctor/patient relationship.
Johnson, Joy, and S. M. Johnson. Why Mine? A Book for Parents Whose Child Is Seriously Ill. Omaha, Nebraska: Centering Corporation, 1981. To order, call (402) 553-1200. Quotes from parents across the country make this a valuable book for families of seriously ill children. Addresses fears, feelings, marriages, siblings, and the ill child.
Kushner, Harold. When Bad Things Happen to Good People, rev. ed. Boston: G.K. Hall, 1997. A rabbi wrote this comforting book on how people of faith deal with catastrophic events.
Lerner, Michael. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Medicine. Cambridge, MA: The MIT Press, 1996. A comprehensive overview of both conventional and complementary approaches to cancer treatment, including nutritional therapies, physical therappies, psychological and spiritual approaches, traditional medicines from around the world, and methods for living with cancer. compassionate and objective. Also available online at:
National Institute of Health. Young People With Cancer: A Handbook for Parents. 67-page booklet. To obtain a free copy call (800) 422-6237. This booklet describes the different types of childhood cancer, medical procedures, coping skills, and family issues, and gives sources of information.
National Cancer Institute
Detailed descriptions of types of cancers, treatment, and clinical trials.
This guide to cancer resources is produced by the National Coalition for Cancer Survivorship.
Pediatric Oncology Resource Center
Edited by Patty Feist, this site is the best single source of information on the Internet for parents of children with cancer. Contains detailed and accurate material on diseases, treatment, family issues, activism, and bereavement. Also provides links to helpful cancer sites.
Steve Dunn's CancerGuide
A great place to start when looking for information. Steve Dunn, a cancer survivor, clearly explains cancer types and staging, chemotherapy, pathology reports, and the advantages and disadvantages of researching your own cancer. He also recommends books, includes inspirational patient stories, and has links to many of the best cancer sites on the Web.
Center for Limb Differences. Children with Limb Loss: A Handbook for Families. Booklets for ages birth to 5 and 6 to 12. Costs $2.75. To order call (800) 528-8989, ext. 4346, or visit
Chernus-Mansfield, Nancy, MA, and Marilyn Horn, LCSW. My Fake Eye: The Story of My Prosthesis.. Institute for Families, 1991. (323) 669-4649.
Crary, Elizabeth. Dealing with Feelings. I'm Frustrated; I'm Mad; I'm Sad Series. Seattle: Parenting Press, 1992. Fun, game-like books to teach preschool and early elementary children how to handle feelings and solve problems.
Foss, Karen. The Problem with Hair: A Story for Children Learning about Cancer. Centering Corporation, 1996. A poem about a group of friends and what happens when one of them loses her hair from chemotherapy.
Hautzig, Deborah. A Visit to the Sesame Street Hospital. New York: Random House, 1985. Grover, his mother, Ernie, and Bert visit the Sesame Street Hospital in preparation for Grover's upcoming operation.
Krishner, Trudy. Kathy's Hats. Concept Books, 1992. (800) 255-7675. A charming book for ages 5 to 10 about a girl whose love of hats comes in handy when chemotherapy makes her hair fall out.
Leukemia Society of America. I'm Having a Bone Marrow Transplant. For a free copy, call (800) 955-4572. Coloring book for young children that helps to explain what to expect during a BMT for any type of cancer.
Nessim, Susan, and Barbara Wyman. Draw Me a Picture. A coloring book for children with cancer (ages 3 to 6). Marty Bunny talks about how it was when he was in the hospital for cancer and invites readers to draw pictures about their experiences. Order from (310) 203-9232 or http://www.cancervive.org.
Nessim, Susan, and Barbara Wyman. A Friend for Life. Cancervive, 1994. For ages 7 to 11. Helps children understand their illness, its treatment, and social and academic interruptions. Order from (310) 203-9232 or http://www.cancervive.org.
Richmond, Christina. Chemo Girl: Saving the World One Treatment at a Time. Jones and Bartlett Publishers, 1996. Written by a twelve-year-old with rhabdomyosarcoma, this book describes a superhero who shares hope and encouragement.
Rogers, Fred. Going to the Hospital. New York: G. P. Putnam's Sons, 1997. With pictures and words, TV's beloved Mr. Rogers helps children ages three to eight learn about hospitals.
Rogers, Fred. Some Things Change and Some Things Stay the Same. American Cancer Society. Order by calling (800) 227-2345. Very comforting book for preschool-age children with cancer and their siblings.
Romain, Trevor. Bullies are a Pain in the Brain. Minneapolis, MN: Free Spirit Publishing, 1997. Full of warmth and whimsy, this book teaches children skills to cope with teasing and bullying.
Schultz, Charles. Why, Charlie Brown, Why? New York: Topper Books, 1990. Tender story of a classmate who develops leukemia. Available as a book or videotape. For video availability, call the Leukemia and Lymphoma Society, (800) 955-4572.
Center for Limb Differences. Adolescents with Limb Loss: A Handbook for Adolescents and their Families. To order call (800) 528-8989, ext. 4346, or visit http://www.mfbrc.com.
Dorfman, Elena. The C-Word: Teenagers and Their Families Living with Cancer. New Sage Press, 1998. Contains photos and the stories of five teenagers with cancer.
Gravelle, Karen and Bertram A. John. Teenagers Face to Face with Cancer. New York: Julian Messner, 1986. Seventeen teenagers talk openly about their cancer, including diagnosis, dealing with doctors, chemotherapy, relationships with others, planning for the future, and relapse. A heartfelt, honest, yet comforting book. Out of print, but may be available from a library or used book store.
Lazar, Linda and Bonnie Crawford. My Journal: Reflections on Life. Centering Corporation. (402) 553-1200. Journal for teens coping with life threatening or terminal illness. Includes chapters called "Things Accomplished in My Life," "I've Been Thinking," and "Questions I'd Like Answered."
My Journal: Reflections on Life. Omaha, NE: Centering Corporation. (402) 553-1200. Journal for teens with life-threatening illnesses.
American Cancer Society. When Your Brother or Sister Has Cancer. To obtain a free copy, call (800) 227-2345. This sixteen-page booklet describes the emotions felt by siblings of a child with cancer.
O'Toole, Donna. Aarvy Aardvark Finds Hope: A Read Aloud Story for People of All Ages About Loving and Losing, Friendship and Hope. Compassion Books, 1988. Aarvy Aardvark and his friend Ralphie Rabbit show how a family member or friend can help another in distress.
Peterkin, Allan. What About Me? When Brothers and Sisters Get Sick. Magination Press, 1992. Describes the feelings of siblings whose brother or sister is hospitalized.
Neuroblastoma Hope. An informative newsletter produced quarterly by The Neuroblastoma Children's Cancer Society to educate, support, and increase awareness. Call (800) 532-5162 or fax: (847) 490-0705.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippencott-Raven, 2002. Chapter 28, "Retinoblastoma." Chapter 29, "Neuroblastoma." Chapter 30, "Tumors of the Liver." Chapter 31, "Renal Tumors." Chapter 32, "Rhabdomyosarcoma and the Undifferentiated Sarcomas." Chapter 33, "Ewing's Sarcoma Family of Tumors." Chapter 34 "Other Soft Tissue Sarcomas of Childhood." Chapter 35, "Osteosarcoma." Extremely technical.
Retinoblastoma Support News. A quarterly newsletter distributed by The Institute for Families of Blind Children. Call (323) 669-4649.
Association of Pediatric Oncology Nurses. Neuroblastoma: A Handbook for Families, 1997; Ewing Sarcoma Family of Tumors: A Handbook for Families, 1999; Osteosarcoma: A Handbook for Families, 1999; Wilms Tumor: A handbook for Families, 1999. $5 for members; $10 for non-members.. Call (847) 375-4724 or email:
Coping with procedures
Benson, Herbert, MD. The Relaxation Response. New York: Avon Books, 1990. This is an excellent resource for the relaxation method of pain relief.
Kuttner, Leora, PhD. A Child In Pain: How to Help, What to Do. Point Roberts, Washington: Hartley & Marks, 1996. Thoroughly explains how to understand, assess, and alleviate pain. Excellent resource.
Lewis, Sheldon, and Sheila Lewis. Stress-Proofing Your Child: Mind-Body Exercises to Enhance Your Child's Health. 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.
Partnership with medical team
Center for Attitudinal Healing. Advice to Doctors and Other Big People from Kids. Berkeley, CA: Celestial Arts, 1991. Written by children with catastrophic illnesses; offers suggestions and expresses feelings about healthcare workers. Wise and poignant.
Keene, Nancy. Working with Your Doctor: Getting the Healthcare You Deserve.Sebastopol, CA: O'Reilly & Associates, Inc., 1998. Practical guidance to help patients take an active role in maintaining health, and steps to help improve the doctor/patient relationship.
Komp, Diane M., MD. Children Are Images of Grace: A Pediatrician's Trilogy of Faith, Hope, and Love. Grand Rapids, Michigan: Zondervan Publishing House, 1996. Written by a Christian pediatric oncologist, this book combines three previous books that describe her feelings for her patients and her warm and loving approach to caring for children with cancer.
Keene, Nancy. Your Child in the Hospital: A Practical Guide for Parents, 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.
Kellerman, Johnathan. Helping the Fearful Child. 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.
Finn, Robert. Cancer Clinical Trials: Experimental Treatments and How They Can Help You. Sebastopol, CA: O'Reilly & Associates, 1999. Excellent guide that explains the structure, ethics, and types of clinical trials. Also covers how to evaluate a trial and deal with financial issues.
National Cancer Institute. Taking Part in Clinical Trials: What Cancer Patients Need to Know. To obtain a free copy, call (800) 422-6237. Eighteen-page booklet covers basic information about clinical trials. Online version at
The Centerwatch Clinical Trials Listing Service at
http://www.centerwatch.com contains a searchable database of 7,500 current clinical trials in all areas of medicine, including cancer treatment.
Dodd, Marylin J., RN, PhD. Managing the Side Effects of Chemotherapy & Radiation Therapy: A Guide for Patients and Their Families. UCSF Nursing, 1996. This book contains thorough explanations of possible side effects of chemotherapy and radiation and suggestions for managing them.
Pharmaceutical Research and Manufacturers of America (PhRMA). Directory of Prescription Drug Patient Assistance Programs. To obtain a free copy, call (800) 762-4636. Directory lists companies that provide prescription drugs either free or at minimal cost to eligible patients.
National Institutes of Health. Chemotherapy & You: A Guide to Self-Help During Treatment. For a free copy, call (800) 4-CANCER. 56-page booklet includes answers to commonly asked questions about chemotherapy, its side effects, emotions while on chemotherapy, and nutrition.
Physicians Desk Reference. Oradell, New Jersey: Medical Economics Data, 1996. Issued yearly, lists authoritative information on all FDA approved drugs. Technical language. Available at reference desk in most libraries.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippencott-Raven, 2002. Chapter 10, "General Principles of Chemotherapy." Chapter 43, "Symptom Management in Supportive Care." Extremely technical.
USP DI, Volume II, Advice for the Patient: Drug Information in Lay Language. United States Pharmacopeial Convention, Inc., 1995. Contains detailed drug information in non-medical language. Available in most libraries.
McKay, Judith and Nancee Hirano. The Chemotherapy and Radiation Survival Guide. Oakland, CA: New Harbinger, 1998. Basic, understandable guide to chemotherapy and radiation and their side effects.
National Cancer Institute. Radiation Therapy and You: A Guide to Self-help During Treatment. For a free copy, call (800) 4-CANCER. 52-page booklet clearly defines radiation, explains what to expect, describes possible side effects, and discusses follow-up care.
O'Connell, Avice, MD, and Norma Leone. Your Child and X-Rays: A Parents' Guide to Radiation, X-Rays and Other Imaging Procedures. Rochester, NY: Lion Press, 1988. 89-page book explains x-ray treatments in easy-to-understand language.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippencott-Raven, 2002. Chapter 13, "General Principles of Radiation Oncology." Extremely technical.
Center for Limb Differences. Your Personal Best. Booklet for young amputees that has a fun format to guide them through the healing process. Includes exercises, with several difficulty levels, a child can do with the help of their physical therapist. Costs $2.75. To order call (800) 528-8989, ext. 4346, or visit http://www.mfbrc.com
O'Neill, James A., ed. Pediatric Surgery. St. Louis: Mosby-Year Book, 1998. Extremely technical.
Pizzo, Phillip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippencott-Raven, 2002. Chapter 12, "General Principles of Surgery." Extremely technical.
Bone marrow and stem cell transplantation
Blood and Marrow Transplant Newsletter. This informative and up-to-date newsletter is written and published by a former BMT patient. To subscribe, call (888) 597-7674. Also electronically published on the Internet at http://www.bmtnews.org. Free, but donations are accepted (and appreciated). Includes articles on medical aspects of BMTs, personal stories, and reviews of books and videos on the topic.
Pizzo, Phillip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippencott-Raven, 2002. Chapter 16, "Stem Cell Transplantation in Pediatric Oncology." Extremely technical.
Stewart, Susan. Bone Marrow Transplants: A Book of Basics for Patients. Published by BMT Newsletter, (888) 597-7674 or (847) 433-3313. One-hundred-fifty-seven-page book clearly explains all medical aspects of bone marrow transplantation, the different typesof transplants, emotional and psychological considerations, pediatric transplants, complications, and insurance issues. Technically accurate, yet easy to read.
Stewart, Susan. Autologous Stem Cell Transplants: A Handbook for Patients. BMT InfoNet, 2000. Order by calling (888) 597-7674, (847) 433-3313, or visiting http://www.bmtnews.org/.
American Cancer Society
Provides useful information about cancer treatments, news, and research.
Canadian Cancer Society
Provides useful information about cancer and includes a link to its research partner, the National Cancer Institute of Canada.
Terms and definitions of words commonly used in cancer care.
CancerWEB Online Medical Dictionary
One of the most complete medical dictionaries available on the Internet.
Provides patients and professionals with in-depth educational information on specific diseases. Also includes information on reimbursement and a treatment guide.
National Cancer Institute
Huge, revamped site provides accurate information on cancer, its treatment, and clinical trials.
Offers a wide variety of cancer-related information, including articles, handbooks, case studies, writings by patients and their families, and visual images, including a children's art gallery.
The National Library of Medicine's free search service provides access to more than nine million citations in MEDLINE and PREMEDLINE (with links to participating online journals) and other related databases. Also includes frequently asked questions (FAQs), news, and clinical alerts.
Site devoted to explaining questionable cancer treatments.
Rx List--The Internet Drug Index
TeleSCAN-Telmatics Services in Cancer
The first European Internet service for cancer research, treatment, and education, providing a hypermedia interface to primarily European information resources and services related to cancer.
Stem cell transplantation
The Anthony Nolen Bone Marrow Trust
A leading research center and the United Kingdom register for potential donors. This site references other international BMT sites.
The BMT Newsletter
All issues of the BMT Newsletter are online, as well as the book Bone Marrow Transplants: A Book of Basics for Patients.
Bone Marrow Donors Worldwide
Maintains a database of volunteer bone marrow donors and cord blood units. Participants are 50 bone marrow donor registries from 37 countries, and 28 cord blood registries from 18 countries. The current number of donors and cord blood units is over 7 million.
The National Marrow Donor Program
A nonprofit, single point of access for all sources of stem cells used in transplantation: marrow, peripheral blood, and umbilical cord blood. Currently has over 4.5 million donors registered.
Patient-Centered Guides Survivor Resource Center
Contains portions of the book Childhood Cancer Survivors, a bibliography on survivorship issues, and a list of institutions that have comprehensive follow-up clinics.
Babcock, Elise NeeDell. When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients. New York: Bantam Books, 1997. Written by a counselor with over two decades of experience helping cancer patients, this book is full of practical advice for caregivers of cancer patients. It explains with great warmth how to be supportive, handle special occasions, explain cancer to children, and take care of yourself.
Leukemia and Lymphoma Society. Emotional Aspects of Childhood Leukemia. To obtain a free copy, call (800) 955-4572. Thirty-four-page booklet covers feelings of parents, ill child, and siblings from diagnosis through end of treatment or death. Includes many parent experiences.
Sourkes, Barbara M., PhD. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. University of Pittsburg Press, 1995. Written by a psychologist, this eloquent book features the voices and artwork of children with cancer. It clearly describes the psychological effects of cancer on children as well as explains the power of the therapeutic process. Highly recommended.
Bogue, Erna-Lynne, ACSW, and Barbara K. Chesney, MPH. Making Contact: A Parent-to-parent Visitation Manual. Bethesda, MD: The Candlelighters Childhood Cancer Foundation, 1987. (800) 366-CCCF. For parents of children with cancer. Includes guidelines for selection of parent visitors, training to improve parent-visitor contact, developing referral systems, and support resources.
Chesler, Mark A., PhD, and Barbara Chesney. Cancer and Self-Help: Bridging the Troubled Waters of Childhood Illness. 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.
National Cancer Institute. Taking Time: Support for People with Cancer and the People Who Care About Them. NIH Publication No. 88-2059. To obtain a free copy, call (800) 422-6237. 61-page booklet includes sections on sharing feelings, coping within the family, and what to do when you need assistance.
Pizzo, Philip A., MD, and David G. Poplack, MD. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven, 2002. Chapter 46, "Psychiatric and Psychosocial Support for the Child and Family." Chapter 47, "The Other of Side of the Bed: What Caregivers Can Learn from Listening to Patients and Their Families."
Speigel, David, MD. Living Beyond Limits. New York: Random House, 1993.
Dr. Speigel devised the landmark study that showed that support groups for women with breast cancer not only lowered rates of depression, but significantly increased their life spans. This book is an excellent guide for coping with cancer, strengthening family relationships, controlling pain, dealing with doctors, and evaluating alternative medicine claims. This book is out of print, but may be available from your local library.
ACOR, The Association of Cancer Online Resources, Inc.
ACOR offers access to 131 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. It hosts several pediatric cancer discussion groups, including PED-ONC (a general pediatric cancer discussion group), and PED-ONC SURVIVORS (for parents of survivors).
A resource devoted to parents and children with cancer to facilitate networking. This resource is oriented to the family aspects of childhood cancer. SpeciaLove, Inc. was started in 1983 by Tom and Sheila Baker, who lost their thirteen-year-old daughter to leukemia.
An uplifting and practical web site to encourage and empower parents of children with cancer when they are feeling discouraged and powerless.
Camps for kids with cancer
Children's Oncology Camping Associates International
An international assembly of people providing camping experiences for children with cancer.
Pediatric Oncology Resource Center
Maintains a list of camps for children with cancer organized by state and province.
Faber, Adele, and Elaine Mazlish. Siblings Without Rivalry: How to Help Your Children Live Together So You Can Live Too. New York: Avon Books, 1998. Required reading for parents with fighting siblings. Offers dozens of simple yet effective methods to reduce conflict and foster a cooperative spirit.
Leukemia Society of America. Emotional Aspects of Childhood Leukemia. (800) 955-8484. 32-page booklet deals with the gamut of emotions experienced by all members of the family, including siblings.
Murray, Gloria, and Gerald Jamplosky, eds. Straight from the Siblings: Another Look at the Rainbow. Millbrae, CA: Celestial Arts, 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.
Feelings, communication, and behavior
Faber, Adele, and Elaine Mazlish. How to Talk So Kids Will Listen...and Listen So Kids Will Talk, 20th ed. New York: Rawson, Wade Publishers, 1999. The classic book on developing new, more effective ways to communicate with your children, based on respect and understanding. Highly recommended.
Kurcinka, Mary Sheedy. Raising Your Spirited Child: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive and Energetic. New York: Harper Collins, 1992. Many of the strategies in this reassuring guide are very effective for children stressed by cancer treatment.
Nelsen, Jane. Positive Discipline. rev. ed. New York: Ballantine Books, 1996. Written by a psychologist, educator, and mother of seven, this book teaches parents how to promote self-discipline and personal responsibility.
Leeland, Jeff. One Small Sparrow: The Remarkable Real-Life Drama of One Community's Compassionate Response to a Little Boy's Life. Sisters, OR: Multnomah Books, 1995. Contains numerous ideas for methods to raise funds. Christian perspective.
Pammenter Tolley, Diane. Finding the Money: A Guide to Paying Your Medical Bills. 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.
Peterson, Sheila. A Special Way to Care. 1988. Available from Friends of Karen, Box 217, Croton Falls, NY 10519. Free guide for those who wish to provide financial/emotional support for families of ill children. Discusses how to differentiate between interference and advocacy. Explains how to organize, manage, and perpetuate a support fund. Excellent resource.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven, 2002. Chapter 52, "Financial Issues in Pediatric Cancer."
Crespo, Clare. The Secret Life of Food. Hyperion, 2002. A cookbook for making fun foods for kids. Includes recipes for such things as "spider web soup" and "mutant chicken."
National Cancer Institute. Managing Your Child's Eating Problems During Cancer Treatment, and Eating Hints for Cancer Patients. (800) 4-CANCER. These booklets cover how cancer treatments affect eating, how to cope with side effects, special diets, family resources, and recipes.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven, 2002. Chapter 42, "Nutritional Supportive Care."
Wilson, J. Randy. Non-Chew Cookbook. Glenwood Springs, CO: Wilson Publishing, Inc., 1986. P.O. Box 2190, 81602. (303) 945-5600. Contains recipes for patients unable to chew due to the side effects of chemotherapy and/or radiation.
Anderson, Winifred, Stephen Chitwood, and Deidre Hayden. Negotiating the Special Education Maze: A Guide for Parents and Teachers. Bethesda, MD: Woodbine House, 3rd ed. 1997. Step-by-step guide to obtaining help for your child. If you only read one book on this subject, this should be the one.
Center for Limb Differences. Children with Limb Loss: A Handbook for Teachers. Booklet costs $2.75. To order call (800) 528-8989, ext. 4346, or visit
Chai Lifeline. Back to School: A Handbook for Educators of Children with Life-threatening Diseases in the Yeshiva/Day School System. 1995. Write to: 151 West 30th St., New York, NY 10001, 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.
Gliko-Braden, Majel. Grief Comes to Class: A Teacher's Guide. Centering Corporation, 1531 N. Saddle Creek Rd., Omaha, NE 68104. (402) 553-1200. Comprehensive guide to grief in the classroom.
Leukemia and Lymphoma Society. The Trish Greene Back-to-School Program for Children with Cancer. 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. http://www.leukemia-lymphoma.org or (800) 955-4572.
Levine, Mel, MD. All Kinds of Minds. 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.
Levine, Mel, MD. Keeping a Head in School: A Student's Book About Learning Abilities and Learning Disorders. Cambridge, Massachusetts: Educator's Publishing Service, Inc., 1991. Book about different learning styles for junior high and high school students.
Peterson's Guides. 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.
Pizzo, Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven, 2002. Chapter 50, "Educational Issues for Children with Cancer."
Silver, Larry, MD. The Misunderstood Child: Understanding and Coping with Your Child's Learning Disabilities, 3rd ed. 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.
The Compassionate Friends. Suggestions for Teachers and School Counselors. P.O. Box 3696, Oak Brook, IL 60522. (630) 990-0010.
Practical support online
Advocates for Children's Pain Relief
Bandaids and Blackboards-When Chronic Illness Goes to School
Caring for Young Persons with Cancer at Home
Physicians Who Care-The HMO Page
Scholarships for Survivors of Childhood Cancer
Accurate, up-to-date information on special educational law for parents, advocates, and attorneys.
US Food and Drug Administration
Social Security Benefits for Children with Disabilities
US Environmental Protection Agency (EPA)
US Department of Justice
Americans with Disabilities Act Homepage
Healthcare Financing Administration
Health Insurance Portability and Accountability Act
US Department of Health and Human Services
Hoffman, Barbara, JD, eds. A Cancer Survivor's Almanac: Charting Your Journey. National Coalition for Cancer Survivorship, 1998. Comprehensive guide to the issues of cancer survivorship. Includes sections on dealing with doctors and hospitals; the mind/body relationship; support services; peer support; employment, insurance, and money matters; dealing with the family; appendix on survivor resources.
Harpham, Wendy Schlessel. After Cancer: A Guide to Your New Life. HarperPerrennial, 1995. Written in a question and answer format, doctor and cancer survivor Harpham addresses the medical, psychological, and practical issues of recovery.
Keene, Nancy, Wendy Hobbie, and Kathy Ruccione. Childhood Cancer Survivors: A Practical Guide to Your Future. Sebastopol, California: O'Reilly & Associates, 2000. A user-friendly, comprehensive guide on late effects of treatment for childhood cancer. Full of stories from survivors of all types of childhood cancer. Also covers emotional issues, insurance, jobs, relationships, and ways to stay healthy.
Pizzo, Philip A., MD, and David G. Poplack MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven, 2002. Chapter 49, "Late Effects of Childhood Cancer and Its Treatment." Chapter 53, "Pediatric Cancer: Advocacy, Legal, Insurance, and Employment Issues." Chapter 56, "Preventing Cancer in Adulthood: Advice for the Pediatrician."
Callanan, Maggie, and Patricia Kelley. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. New York: Poseidon Press, 1992. Written by two hospice nurses with decades of experience, this book helps families understand and communicate with terminally ill patients. Highly recommended.
Modlow, D. Gay, and Ida M. Martinson. Home Care for the Seriously Ill Child: A Manual for Parents. 1991. $7.95 from Children's Hospice International, (703) 684-0330. Helps parents explore the possibility of home care for the dying child.
Pizzo, Philip A., MD, and David G. Poplack , MD, eds. Principles and Practice of Pediatric Oncology. Philadelphia: Lippincott-Raven Publishers, 2002. Chapter 51, "Care of the Dying Child."
Bernstein, Judith R. When the Bough Breaks: Forever After the Death of a Son or Daughter. Kansas City, Missouri: Andrews & McMeel, 1998. A serious and sensitive look at how to cope with the loss of a child.
Kubler-Ross, Elisabeth, MD. On Children and Death. 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.
Morse, Melvin, MD. Closer to the Light: Learning from Near Death Experiences of Children. 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.
Rando, Therese, PhD, ed. Parental Loss of a Child. 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.
Wild, Laynee. I Remember You: A Grief Journal. 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.
Sibling grief (adult reading)
Doka, Kenneth, ed. Children Mourning, Mourning Children. 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.
Grollman, Earl. Talking About Death: A Dialogue Between Parent and Child, 3rd ed. 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.
Schaefer, Dan, and Christine Lyons. How Do We Tell the Children? A Step-by-Step Guide for Helping Children Two to Teen Cope When Someone Dies, 3rd ed. New York: Newmarket Press, 2002. If your terminally ill child has siblings, read this book. In straightforward, uncomplicated language, the book describes how to explain the facts of death to children and teens and shows 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.
Sibling grief (young child reading)
Buscaglia, Leo. The Fall of Freddy the Leaf: A Story of Life for All Ages. 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.
Hickman, Martha. Last Week My Brother Anthony Died. 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.
Mellonie, Bryan, and Robert Ingpen. Lifetimes: The Beautiful Way to Explain Death to Children. New York: Bantam Books, 1983. Beautiful paintings and simple text explain that dying is as much a part of life as being born.
Sibling grief (school-aged children)
Romain, Trevor. What on Earth Do You Do When Someone Dies? Minneapolis, MN: Free Spirit Publishing, 1999. Warm, honest words and beautiful illustrations help children understand and cope with grief.
Temes, Roberta, PhD. The Empty Place: A Child's Guide Through Grief. Far Hills, NJ: 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.
White, E.B. Charlotte's Web. New York: Harper, 1952. Classic tale of friendship and death as a part of life. (The videotape is widely available to rent.)
Sibling grief (teens)
Gravelle, Karen, and Charles Haskins. Teenagers Face to Face with Bereavement. Englewood Cliffs, NJ: J. Messner, 1989. The perspectives and experiences of seventeen teenagers coping with grief.
Grollman, Earl. Straight Talk About Death for Teenagers: How to Cope with Losing Someone You Love. Boston, MA: 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.
Some of the videotapes listed in this section are available free from national organizations. Others can be purchased for a modest fee. Some, however, are quite expensive. You might consider asking your hospital social worker or resource room librarian to purchase it for their collection.
Children and Teens
Hairballs on My Pillow. CARTI. (800) 482-8561 or (501) 664-8573. Interviews children with cancer and their friends about friendship and returning to school. $35 for video and newsletters for students, exercises and activities for students, and a teacher's notebook of information about cancer, its treatment, and dealing with returning students.
Mr. Rogers Talks About Childhood Cancer. Videotapes (2), guidebook, storybook. 45 minutes. Available free from some local American Cancer Society chapters. (800) 227-2345. Mr. Rogers talks to children and uses characters from the Land of Make Believe to stress the importance of talking about feelings.
Operation Sneak-A-Peek. 20 minutes. Helps children feel more comfortable and safe in a hospital environment. Puppets take children on a comforting and humorous tour of the operating and recovery rooms. Aquarius Healthcare Videos (888) 420-2963, or
Plastic Eggs or Something!?. Video with attitude from the Starbright Foundation. Offers insight into and strategies for dealing with hospital life, such as making friends with the hospital staff, dealing with the many boring hours, and finding a little privacy in the hospital. Free to teens with cancer. (310) 442-1560, ext. 10, or
Rising to the Challenge: Youngsters Speak Their Truth with Cancer. 15 minutes. Depicts the thoughts and feelings of children with cancer, ages 10 and older. Filmed during a rafting trip. Aquarius Healthcare Videos (888) 420-2963, or
Welcome Back. 14 minutes. Produced by the Child Life Department at Johns Hopkins Medical Center. Children with cancer talk about their fears, expectations, and experiences when they go back to school. Explains cancer and dispels myths in terms children understand. Aquarius Healthcare Videos: (888) 420-2963, or http://www.aquariusproductions.com. ($112)
What Am I-Chopped Liver? Video with attitude from the Starbright Foundation. Helps teens deal with their doctor in a proactive and age-appropriate manner. (310) 442-1560, ext. 10, or
Why, Charlie Brown, Why? Tender story of a classmate who develops leukemia. Available as a book or videotape. For video availability, call the Leukemia and Lymphoma Society, (800) 955-4572.
You Don't Have to Die: Jason's Story. 27 minutes. Video of Jason Gaes' book, My Book for Kids With Cansur: A Child's Autobiography of Hope. To order, call Ambrose Video Publishing at (800) 526-4663.
CancerEd: Necessary Pictures Film and Media. A workshop presentation kit for schools or communities designed to engage, empower, and enlighten students and teachers about the social, emotional, physical, and psychological aspects of childhood cancer. Consists of a video and workbook to connect students, teachers, schools, families, and communities. (800) 221-3170.
Cancervive Back to School Kit. A comprehensive package of materials developed to assist children and adolescents re-entering the school setting. The kit contains a "Teachers Guide for Kids with Cancer" and two award-winning documentary videos: "Emily's Story: Back to School After Cancer" and "Making the Grade: Back to School After Cancer for Teens."
http://www.cancervive.org/materials.html. Item No. 123. ($79.95)
Coping with Childhood Cancer. 28 minutes. Five family portraits covering issues such as guilt, sibling rivalry, divorce, the adopted child, and involvement of other family members in the care of the child. Introduction and closing by Bob Keeshan (Captain Kangaroo). Purchase from: Films for the Humanities and Sciences, P.O. Box 2053, Princeton, NJ 08543. (800) 257-5126. Item No. 2519. ($89.95)
Financial Management During Crisis. 24 minutes. Healthcare providers, utility and credit companies, and families of seriously ill children tell how to sucessfully manage your insurance, work with creditors, establish a workable budget, and find outside help. Aquarius Healthcare Videos: (888) 420-2963, or
Talking about Death with Children. 13 minutes. Dr. Earl Grollman explains what death means, how it happens, and why there is a funeral. Includes a tour of a funeral home. Batesville Management Services: (800) 446-2504, ext. 7788. ($99)
No Fears, No Tears. 27 minutes. By Leora Kuttner, PhD. Documentary of eight young children with cancer and their parents learning how to manage the pain of cancer treatment. Distributed by Fanlight Distributors: (800) 937-4113, or email@example.com.
No Fears, No Tears-13 Years Later. By Leora Kuttner, PhD. Thirteen years after learning how to manage their painful cancer treatments, seven survivors of childhood cancer make sense of their early traumatic experiences and demonstrate the power of mind-body pain relief. To order, fax your request to (604) 294-9986 or send email to firstname.lastname@example.org.
Mr. Rogers Talks with Parents About Childhood Cancer. Videotapes (2), guidebook, pamphlet. 47 minutes. Available at some chapters of the American Cancer Society. (800) 227-2345. First tape consists of interviews with parents about ways to deal with emotions during diagnosis and treatment. Second tape includes sensitive interviews with three bereaved parents.
When a Child Has Cancer: Helping Families Cope. Discusses marriage, siblings, finances, and other topics. Available at some chapters of the American Cancer Society. (800) 227-2345.
Drying Their Tears. For information, call (800) 482-8561. Video and manual to help counselors, teachers, and other professionals help children deal with the grief, fear, confusion, and anger that occur after the death of a loved one. Has three segments: one about training facilitators, one for children ages 5 to 8, and one for ages 9 to teens. Each section includes interviews with children and video from children's workshops.
The Learning Disabilities Association of Massachusetts has several videos on different aspects of coping with learning disabilities, including: Einstein & Me: Talking About Learning Disabilities; Meeting with Success: Ten Tips for a Successful I.E.P.; Planning for Success: The College Application Process for Students with Learning Disabilities; Portraits of Success: Fostering Hope and Resilience in Individuals with Learning Disabilities; and Stop and Go Ahead with Success: An Integrated Approach to Helping Children Develop Social Skills. For more information, visit
The Healing Path. The Compassionate Friends sibling video addresses concerns of surviving siblings, such as sadness, pain, anger, and fear. Video explores eight topics: facing the reality of death, who will listen, changed family life, special days, visiting the cemetery, parental overprotection, feelings and expectations, and looking to the future. For information, call (877) 969-0010 or (630) 990-0010.
Understanding Grief: Kids Helping Kids. 14 minutes. Appropriate for ages 9 to 14. Children who lost a parent or a loved one discuss their feelings. Advice on the four T's (talk, touch, teach, time) developed by Dr. Earl Grollman. Batesville Management Services: (800) 446-2504, ext. 7788. ($99)
Several videos on grief are available from the Centering Corporation. Go to
http://www.centering.org and search for "video" to get a complete list of the products available.
Most libraries now have a computerized database of all materials available in their various branches. Some libraries may still use a manual card catalog system. Ask a librarian if you need help learning to use these systems. A librarian can also tell you how to request a book from another branch and how to put a book on hold if it is currently checked out.
If a book is not in your library's collection, ask the librarian if she can obtain it from another library by requesting an inter-library loan. This is a common practice, and you might be able to get medical texts from university or medical school libraries.
In addition to books, you can find relevant magazine and medical journal articles at the library. The librarian can show you how to use the database to search for relevant articles and where to find the periodicals. Public libraries usually subscribe to only the most popular medical journals such as the New England Journal of Medicine. If you are able to visit a university or medical school library, you will find many more medical journals available. To find the nearest medical library open to the public, call the National Network of Libraries of Medicine at (800) 338-7657. If you do not live close to one of these libraries, ask your local librarian if she can help you obtain copies of the articles you want.
There is an astonishing amount of information available through the Internet. Libraries from all over the world can be accessed, and you can download information in minutes from huge databases like MedLine or Cancerlit. Obtaining information from large medical databases, established journals, or large libraries is exceedingly helpful for parents at home with sick children. However, the huge numbers of people using the Internet has spawned chat rooms, bulletin boards, and thousands of FAQs (frequently asked questions), which may or may not contain accurate information. You may want to adopt the motto "Let the buyer beware."
If you do not have a home computer, many libraries provide Internet access. Ask the librarian to help you connect to MedLine, Physician's Data Query (PDQ), or other databases you wish to search. Don't hesitate to ask for assistance in finding web sites or whatever else you need on the Internet.