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Communication | Reference
The following references are materials used by the Strouds and other families battling leukemia. Free publications are noted. Other publications can be purchased through you local bookstore. Helpful support organizations are highlighted in Boldface.
| What to Expect | Parents |
Advanced Cancer: Living Each Day (1994) National Cancer Institute - Booklet that addresses living with a terminal illness, how to cope, and practical considerations for the patient, the family, and friends. 1-800-4-CANCER. Cost: Free. www.nci.nih.gov
Candlelighters Childhood Cancer Foundation - A helpful organization created by parents whose children have or had cancer. Headquartered in Washington, D.C., it produces newsletters, offers information and assistance in forming support groups. P.O. Box 498, Kensington, MD 20895, 1-800-366-2223 or 301-962-3520. www.candlelighters.org
Children With Cancer, A Comprehensive Reference Guide For Parents (1986) Jeanne Barcken - Thorough guide to information relating to children with cancer.
Children's Hospice International - When treatment is not successful and the child's disease becomes terminal, some parents may wish to have their child die at home rather than in the hospital. We found it possible to provide quality care for Jennifer at home during this time. This organization can provide referrals for home care and hospice care in your area. Informational materials are also available. Children's Hospice International, 901 North Pitt Street, Suite 230, Alexandria, VA 22314, (703) 684-0330 or 1-800-242-4453. www.chionline.org
Eric (1976) Doris Lund - Precious book about Eric's five-year struggle with leukemia as told by his mother.
The Leukemia & Lymphoma Society - A voluntary health agency that provides detailed information on leukemia. They offer a broad range of programs including financial aid, support groups for patients and families, and referrals to other means of local assistance. 1311 Mamaroneck Avenue, White Plains, NY 10605, 914-949-5213, or 800-955-4572. www.leukemia.org
Questions And Answers About Pain Control: A Guide For People With Cancer And Their Families (1992) National Cancer Institute - An in depth publication that discusses pain control using both medical and non medical methods. The emphasis is on explanation, self-help, and patient participation. 1-800-4-CANCER. Cost: Free.
What You Need To Know About Cancer - Leukemia (1995) National Cancer Institute - National Cancer Institute's brochure that discusses symptoms, diagnosis, treatment, emotional issues, and questions to ask the doctor regarding leukemia. Includes glossary of terms and other useful resources. 1-800-4-CANCER. Cost: Free.
When Cancer Recurs: Meeting the Challenge Again (1993) National Cancer Institute - Booklet detailing the different types of recurrence, types of treatment and coping with cancer's return. 1-800-4-CANCER. Cost: Free.
Young People With Cancer: A Handbook For Parents (1994) National Cancer Institute - This booklet discusses the most common types of childhood cancer, treatments and side effects. Good discussion of the issues that may arise when a child is diagnosed with cancer. Offers medical information and practical tips gathered from parents. 1-800-4-CANCER. Cost: Free.
| What to Expect | Child |
Coping With Childhood Cancer (1984) David Adams and Eleanor Deveau - Complete handbook on the subject of childhood cancer for patients and their families.
Ellie: A Child's Fight Against Leukemia (1982) Jonathan Tucker - Book sharing three patient's battles with leukemia. It describes the diagnosis and treatment of childhood leukemia and its emotional aspects as well.
Facing Forward: A Guide For Cancer Survivors (1993) National Cancer Institute - Booklet presents a concise overview of important survivor issues, including ongoing health needs, psychosocial concerns, insurance and employment. East-to-use format includes cancer survivors' experiences, practical tips, record-keeping forms, and resources. 1-800-4-CANCER. Cost: Free.
Get Relief From Cancer Pain (1994) National Cancer Institute - Brochure informing patients how medicine and other treatments can reduce cancer pain. The child is encouraged to talk the doctor or nurse as soon as cancer pain begins. 1-800-4-CANCER. Cost: Free.
I Want To Grow Hair, I Want To Grow Up, I Want To Go To Boise (1989) Erma Bombeck - Delightful book about children surviving cancer. Recommended for patients.
Patient Guide: Managing Cancer Pain (1994) National Cancer Institute - Brochure that summarizes information on managing cancer pain. Recommended for parents and teenage patients. 1-800-4-CANCER. Cost: Free.
Patient To Patient: Cancer Clinical Trials and You - American College of Surgeons Commission On Cancer and National Cancer Institute - 15 minute video tape provides simple information for patients and families about clinical trials process. 1-800-4-CANCER. Cost: Free.
Talking With Your Child About Cancer (1994) National Cancer Institute -Booklet designed for the parent whose child has been diagnosed with cancer. It addressed the health-related concerns of young people of different ages. It suggests ways to discuss disease-related issues with a child. 1-800-4-CANCER. Cost: Free.
Too Old To Cry...Too Young To Die (1980) Edith Pendleton - Book compiling 35 young patients' experiences with cancer.
What Are Clinical Trials All About? (Rev. 1996) National Cancer Institute - This booklet is designed for patients who are considering taking part in research for new cancer treatments. It explains clinical trials to patients in easy-to-understand terms. 1-800-4-CANCER. Cost: Free.
Why Charlie Brown, Why? (1990) Charles Schultz - Humorous, but insightful book featuring the Peanuts gang, which deals with the physical and emotional stages of childhood leukemia.
You And Leukemia: A Day at a Time (2001) Lynn Baker - Explains childhood leukemia in children's terms. Recommended for patients, siblings and friends. Call Harcourt Health Sciences 1-800-545-2522. Cost: $16.95.
| What to Expect | Brothers and Sisters |
Coping With Childhood Cancer (1984) David Adams and Eleanor Deveau - Complete handbook on the subject of childhood cancer for patients and their families.
I Want To Grow Hair, I Want To Grow Up, I Want To Go To Boise (1989) Erma Bombeck - Delightful book about children surviving cancer.
Taking Time: Support For People With Cancer And The People Who Care About Them (1992) National Cancer Institute - Sensitive booklet for patients and their families regarding the feelings and concerns of others in similar situations and how they have coped. 1-800-4-CANCER. Cost: Free.
When Someone In Your Family Has Cancer (1994) National Cancer Institute - Booklet written for young people whose parent or sibling has cancer. Helpful information on the disease, its treatment, and emotional concerns. 1-800-4-CANCER. Cost: Free.
Why Charlie Brown, Why? (1990) Charles Schultz - Humorous, but insightful book featuring the Peanuts gang, which deals with the physical and emotional stages of childhood leukemia.
You And Leukemia (1988) Lynn Baker - Explains childhood leukemia in children's terms. Recommended for patients, siblings and friends.
| What to Expect | Spiritual |
A Grief Observed (1961) C. S. Lewis - A timeless and inspiring affirmation of faith by C.S. Lewis about his agony and despair after his wife's death.
Finding God (1993) Dr. Larry Crabb - A fellow sufferer talks about God's top priority is not our comfort and gratification, but His glory. A must book for those struggling with the question, "How can God let this happen to my child"?
Hope Again (1996) Charles R. Swindoll - A guide to finding hope to press on, hope to endure, hope to focus, and hope to see dreams fulfilled when life hurts and dreams fade.
Lament For A Son (1987) Nicholas Wolterstorff - A daily meditation by a fellow sufferer that helps parents express their grief in a simple and honest way.
Riches Stored In Secret Places (1994) Verdell Davis - Book by a fellow sufferer that shares her agonizing readjustment, relentless soul searching, and profound transformation after her husband's tragic plane crash.
The Problem Of Pain (1962) C. S. Lewis - A book that discusses how human suffering raises almost intolerable intellectual problems with one's faith.
This Is The Child (1983) Terry Pringle - Precious book about his young son's 20 month battle against leukemia and its debilitating treatments.
Tracks Of A Fellow Struggler (1974) John Claypool - Comforting book about the author's eight year old daughter and her eighteen month battle against leukemia. His testimony to grief and his faith helps the reader to bear it.
When Bad Things Happen To Good People (1981) Harold S. Kushner - An insightful book by a father who watched his son suffer and die at the age of 14. He wrestles with his faith and provides some perspectives that can help grieving parents.
When God Doesn't Make Sense (1993) James Dobson - A practical book for those who are struggling with trials and heartaches they can't understand.
When You Can't Come Back (1992) Dave and Jan Dravecky - A story of courage and grace when the San Francisco Giants major league pitcher lost his pitching arm to cancer and how he deals with depression, burn out, stress and suffering.
Where Is God When It Hurts? (1977) Philip Yancey - An honest and open book that admits the inadequacy of words to unravel problems of suffering that go back to the patriarch of Job.
| Treatments | Chemotherapy |
Anticancer Drug Information Sheets (Current) - U.S. Pharmacopeial Convention - Fact sheets (in English and Spanish) that provide most helpful information about side effects of common drugs used to treat cancer, their proper usage, and precautions for patients. A must for parents deciding on experimental drugs. 800-822-8772, 301-881-0666.
Chemotherapy and You: A Guide To Self-Help During Treatment (1993) National Cancer Institute - Booklet in question-and-answer format, addresses problems and concerns of patients receiving chemotherapy. Emphasis is on explanation and self-help. 1-800-4-CANCER. Cost: Free.
Helping Yourself During Chemotherapy: 4 Steps For Patients (1994) National Cancer Institute - Booklet helps children and parents understand the importance of telling the doctor about medicine coordination, reporting any side effects that occur to the doctor, and telling him/her about any emotional problems that arise. 1-800-4-CANCER. Cost: Free.
PDQ Database - The National Cancer Institute has developed PDQ, a computerized database designed to give doctors quick and easy access to: the latest treatment information for most types of cancer; descriptions of clinical trials that are open for patient entry; and names of organizations and physicians involved in cancer care. Also available for patients 1-800-4-CANCER.
Radiation Therapy And You: A Guide To Self-Help During Treatment (1993) National Cancer Institute - Addresses the concerns of patients receiving forms of radiation therapy. Emphasis is on explanation and self help. 1-800-4-CANCER. Cost: Free.
The Immune System - How It Works (1992) National Cancer Institute - Brochure that explains the human immune system in simple terms. It describes the sophistication of the body's immune responses, the impact of immune disorders, and the relation of the immune system to cancer therapies present and future. Parents find it helpful in answering children's questions. 1-800-4-CANCER. Cost: Free.
What Are Clinical Trials All About? (1996) National Cancer Institute - This booklet is designed for patients who are considering taking part in research for new cancer treatments. It explains clinical trials to patients in easy-to-understand terms. 1-800-4-CANCER. Cost: Free.
| Treatments | Transplants |
Coping With Survival: Support For People Living With Adult Leukemia And Lymphoma (2000) The Leukemia & Lymphoma Society - Booklet on psychological aspects of cancer. It contains practical and useful information to parents. 914-949-5213 or 1-800-955-4572. Cost: Free. www.leukemia.org
Going For The Cure (1989) F. M. Thompson - Touching book as a young orthopedic surgeon who was the first patient at Dana-Farber Cancer Institute to have an autologous bone marrow transplant for multiple myeloma.
International Bone Marrow Transplant Registry - This research organization collects and analyzes data about allogeneic bone marrow transplantations. Staff are available to answer parent's questions about the procedure. Donor matches are not made by this registry. Statistical Center/Medical College of Wisconsin, 8701 Watertown Plank Rd. Milwaukee, WI 53226, 414-456-8325.
Managing Your Child's Eating Problems During Cancer Treatment (1994) National Cancer Institute - Booklet containing information about the importance of nutrition, the side effects of cancer and its treatment, ways to encourage your child to eat, and special diets. 1-800-4-CANCER. Cost: Free.
National Marrow Donor Program - The National Marrow Donor Program (NMDP) is federally funded to improve the efficiency and effectiveness of the donor search. The organization is extremely helpful and professional. 3001 Broadway Street Northeast, Suite 500, Minneapolis, MN 55413, 800-MARROW2 (627-7692) in U.S. and Canada. Outside U.S. (612) 627-5800. www.marrow.org
Research Report: Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation (1995) National Cancer Institute - Brochure that covers current knowledge of bone marrow transplantation and peripheral stem cell transplantation as treatment options for some types of cancer. It explains in medical terms the possible complications and long-term effects of transplantation. It also presents helpful financial and psychosocial considerations. 1-800-4-CANCER. Price: Free
We Have A Donor (1988) M. Dowie - Book written about solid organ transplantation which informs parents about bone marrow transplant patients, including some history, ethics, and politics of transplantation.
| Treatments | Nutritional |
A Guide To Good Nutrition During And After Chemotherapy And Radiation (1988) S. Aker and P. Lenssen - Book for the cancer patient and family in overcoming poor appetite and eating problems caused by cancer treatment. Helpful suggestions for specific problems, calorie and protein guide, recipes, and lots of helpful hints are provided.
Action Guide For Healthy Eating (1995) National Cancer Institute - Brochure that delivers overall nutrition and cancer prevention message to the general public. Self guide to lower fat and increase intake of fiber, fruits, and vegetables. 1-800-4-CANCER. Price: Free.
BMT/PBSCT Nutrition Care Criteria (1995) Fred Hutchinson Cancer Research Center, et. al. - Book for the nutritional management of patients undergoing high dose chemotherapy and/or irradiation followed by transplantation from a stem cell source.
Creative Food Experiences for Children (1980) M. T. Goodwin and G. Pollen - Combines education and fun to teach children about good eating habits and nutrition. Available from the Center for Science in the Public Interest, 1875 Connecticut Avenue, NW, Suite 300, Washington, DC 20009-5728. 202-332-9110 ext. 393 $7.95 Code:23 www.cspinet.org
Eating Hints For Cancer Patients (1994) National Cancer Institute - Cookbook-style booklet includes recipes and suggestions for maintaining optimum nutrition during treatment. Effective and tasteful recipes. 1-800-4-CANCER. Price: Free.
Non-Chew Cookbook (1985) J. Randy Wilson,Wilson Publishing, Inc. - Information and recipes for patients who are unable to eat solid food because of oral surgery or side effects from radiation therapy or chemotherapy. Minnesota Wilson Publishing, c/o Sandy Olson, 5708 Nicolette Avenue, South Minneapolis, MN 55419. To order: 800-843-2409. $23.95
Nutrition and the Cancer Patient (1983) J.D. Margie and A.S. Bloch - This book discusses nutrition-related problems and addresses their management, including caring for children with cancer. Includes helpful recipes for appetizers, beverages, main entrees, and desserts.
Time To Take Five: Eat 5 Fruits And Vegetables A Day (1995) National Cancer Institute - Brochure that contains information on the importance of eating five or more fruits and vegetables a day. It is written in an easy-to read, upbeat fashion. Informative text for parents on snacking, using the microwave, and keeping fruits and vegetables visible and plentiful. 1-800-4-CANCER. Price: Free
| Financial |
American Bone Marrow Donor Registry - An association of independent donor registries throughout the United States. Individuals wishing to act as marrow donors for this group can call 800-745-2452. Persons wishing access to the registries on behalf of a patient should call 800-7-AMATCH. P.O. Box 8841, Mandeville, LA 70470. www.abmdr.org
Children's Leukemia Foundation of Michigan - This organization helps Michigan residents and gives valuable guidance to non-residents, 29777 Telegraph Rd., Suite 1651, Southfield, MI 48034. 248-353-8222, 800-825-2536. leukemiamichigan.org
Corporate Angel Network - This organization of businesses may provide air transportation for cancer patients on their corporate airplanes when space allows. Westchester County Airport, One Loop Road, White Plains, New York 10604, 914-328-1313. www.corpangelnetwork.org
National Marrow Donor Program - The National Marrow Donor Program (NMDP) is federally funded to improve the efficiency and effectiveness of the donor search. The organization is extremely helpful and professional. 3001 Broadway Street Northeast, Suite 500, Minneapolis, MN 55413, 800-MARROW2 (627-7692) in the U.S. and Canada. www.marrow.org. Outside the U.S. 612-627-5800.
Ronald McDonald Houses Charities - Ronald McDonald Houses may be available for families of seriously ill children and provide lodging at economical rates. There are more than 174 local charities serving in 32 countries. Ronald McDonald House Charities, One Kroc Drive, Oak Brook, IL 60523, 630-623-7048. www.rmhc.com.
American Cancer Society - A national voluntary organization offering programs of cancer research, education, and patient service and rehabilitation. SouthEast Division Office, 11 South Boylan, Suite 221, Raleigh, NC 27603. 800-227-2345. www.cancer.org
The Leukemia & Lymphoma Society - A voluntary health agency that provides detailed information on leukemia and offers a broad range of programs including financial aid, support groups for patients and families and referrals to other means of local assistance. 61311 Mamaroneck Avenue, White Plains, NY 10605, 914-949-5213, or 800-955-4572. www.leukemia.org
| Spanish Publications |
Anticancer Drug Information Sheets (Current) - U.S. Pharmacopeial Convention - Fact sheets (in English and Spanish) that provide most helpful information about side effects of common drugs used to treat cancer, their proper usage, and precautions for patients. A must for parents deciding on experimental drugs. 1-301-881-0666, or 800-822-8772.
Celebre La Cocina Hispana: Health Hispanic Recipes (1995) National Cancer Institute - Recipe booklet featuring 18 bilingual recipes from Latin American countries and the Caribbean. 1-800-4-CANCER. Price: Free
Coma Menos Grasa Tipsheet (1960) National Cancer Institute - Tipsheet is easy reading on ways to limit fat in food preparation, cooking and serving. 1-800-4-CANCER. Price: Free
Datos Sobre El Tratamiento De Quimoterapia Contra El Cancer (1991) National Cancer Institute - Booklet provides a brief introduction to cancer chemotherapy. 1-800-4-CANCER. Price: Free
El Tratamiento De Radioterapia: Guia Para El Paciente Durante El Tratamiento (1992) National Cancer Institute - Booklet addresses the concerns of patients receiving radiation therapy for cancer. Emphasis is on explanation and self-help. 1-800-4-CANCER. Price: Free
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User's Guide |
What to Expect Parents Your Child Brothers & Sisters Friends |
Treatments Chemotherapy Bone Marrow Transplants Nutritional Alternative/ Homeopathy |
Communication History Mission Statement Reference Correspondence Sponsors |