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booklist

Crooks, G. 2005. Can I take My Panda Daddy? Brisbane: Boolarong Press. http://www.boolarongpress.com.au or (07) 38488200  ISBN# 1 921054 54 9. Written by The father of Sean. The journey of a male nurse when his son was diagnosed with a brain stem glioma. Very touching and emotional book. A worthy tribute to such a beautiful child.

Foote, P. 1998. How are you? Manage your own medical journey. San Luis Obispo, CA: Medical Journeys Network. http://www.medicaljourneys.com. ISBN# 0-9665166-0-5. Written by a survivor of multiple brain and spinal tumours (hemangioblastomas) associated with von Hippel-Lindau disease. Addresses recovery from surgery, Gamma Knife radiosurgery and rehabilitation in detail.

Gunther, J. 1949, 1998. Death be not proud: A memoir. New York: Harperperennial Library. http://www.harpercollins.com/catalog/book_xml.asp?isbn=0060929898. ISBN# 0060929898. The father of a young man diagnosed with glioblastoma multiforme wrote this 50-year-old classic.

Libutti, R. L. 1997. That's unacceptable. Surviving a brain tumour: My personal story. Martinsville, NJ: Krystal Publishing. http://www.krystalpublishing.com/tu.cfm or call The Tattered Cover Bookstore, (800) 833-9327. Written by a four-year survivor of glioblastoma multiforme, "that's unacceptable!" was the author's first response to the initial discouragement she received about pursuing aggressive treatment.

Murphy, R. F. 1990. The body silent. An anthropologist embarks into the world of the disabled. New York: W.W. Norton. http://www.wwnorton.com. ISBN# 0-393-30702-6. Diagnosed at midlife in the early 1980s with an inoperable (and, at the time, untreatable) ependymoma of the spine, an anthropologist frankly discusses his progressive disability.

Price, R. 1995. A whole new life: An illness and a healing. New York: Penguin USA. ISBN# 0-452-27473-7. New hardcover edition (April 2000) available through Scribner. ISBN: 0684872552. Order through http://www.amazon.com. The Duke University professor and prize-winning author describes over ten years of survivorship and spiritual growth since the diagnosis of a malignant spinal cord astrocytoma. Includes hard-to-find information about pain management, biofeedback and visualization.

Roloff, P.A. 1995. Navigating through a strange land: A book for brain tumor patients and their families. West Fork, AR: Indigo Press. (888) 294-8127 or order through http://www.amazon.com. ISBN# 0-9641214-1-7. Includes several patient and family profiles. A second volume is in the works.

Smith, G.W. & Naifeh, S.W. 1998. Making miracles happen. New York: Woodward/White (Dell Trade Paperbacks). http://www.bestdoctors.com. ISBN# 0-440-50837-1. Profiled on 60 minutes, the author, an 11- year survivor of a rare hemangiopericytoma, discusses how he learned to take charge of his health.

Tuscon, K. 1996. Unselfish courage. Raleigh, NC: Pentland Press, Inc., (919) 782-0281 or order through http://www.amazon.com. ISBN# 1-57197-105-X. A woman chronicles her husband's two-year battle with glioblastoma multiforme. Details the late stages of this illness.

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cancer, chronic illness and care giving

Babcock, E.N. 1997. When life becomes precious: A guide for loved ones and friends of cancer patients. New York: Bantam Books. http://www.randomhouse.com. ISBN# 0-553-37869-4. How to support the person diagnosed with cancer.

Caring for the patient with cancer at home. 1999. Atlanta: ACS. 99-35M-No.4656-HCP. Free handbook, call (800) ACS-2345 or see http://www.cancer.org. This practical guide includes material on blood counts, chemotherapy, confusion, loss of mobility, falls, fatigue, hospice care, seizures, steroids, tubes and IV lines, weight changes, and much more.

Carter, R. with Golant, S.K. 1994,1996. Helping yourself help others: A book for caregivers. New York: Times Books. ISBN# 0182925912. Strategies to avoid burnout and depression, and advice on how to deal with the problems that caregiving can cause in a marriage.

Frank, A.W. 1992. At the will of the body: Reflections on illness. Boston: Houghton Mifflin Company. www.houghtonmifflinbooks.com. ISBN# 0-395-62430-4. The author emphasizes the value of moving through illness, not around it.

Gullo, S.M. & Glass, E. (Eds.). 1997. Silver linings: The other side of cancer. Pittsburgh: Oncology Nursing Press, Inc. (412) 921-7373. http://www.ons.org. ISBN# 1-890504-01-7. A few brain tumour patients are profiled.

Harpham, W.S. 1994. After cancer: A guide to your new life. New York: HarperCollins Publishers. http://www.harpercollins.com. ISBN# 0-06-097678-0. Coping with long term survivorship and the after-effects of treatment.

Harpham, W.S. 1992. Diagnosis cancer: Your guide through the first few months. New York: W.W. Norton & Co. http://www.wwnorton.com. ISBN# 0-393-31691-2. The author, a physician and mother, is a survivor of five recurrences of lymphoma.

Hoffman, B. (Ed.). 1996. A cancer survivor's almanac: Charting your journey. Minneapolis: Chronimed Publishing (National Coalition for Cancer Survivorship). http://www.catalog.wiley.com. ISBN# 0-471-34669-1. The sections on health insurance, employment rights, legal and financial concerns, and advocacy are particularly strong.

Houts, P.S. & Bucher, J.A. 2000. Care giving. A step-by-step resource for caring for the person with cancer at home. Atlanta: American Cancer Society. (800) ACS-2345; http://www.cancer.org. ISBN#: 0944235204. How to deal with situations or conditions that may occur when giving care to a person with cancer.

Landay, D.S. 1998. Be prepared: The complete financial, legal and practical guide to living with cancer, HIV, and other life-challenging conditions. New York: St. Martin's Press. (212) 674-5151; http://www.stmartins.com. ISBN#: 0-312-18048-9. Getting, keeping and using health and life insurance; going back to work, changing jobs, preparing for disability, assisted living, financial planning and much more.

Lang, S.S. & Patt, R.B. 1994, 1995. You don't have to suffer: A complete guide to relieving cancer pain for patients and their families. New York: Oxford University Press. http://www.oup-usa.org. ISBN# 0-19-508419-5. Understanding cancer pain, pain medications, and additional approaches.

McCue, K. with R. Bonn. 1996. How to help children through a parent's serious illness. (3rd edition). New York: St. Martin's Griffin. ISBN# 0-312-14619-1. Offers step-by-step, compassionate advice based on children's developmental needs.

Moyers, B. 1993, 1995. Healing and the mind. New York: Doubleday. http://www.randomhouse.com. ISBN# 0-385-47687-6. Includes an outstanding chapter highlighting the value of oncology support groups.

Schimmel, S. R. 1999. Cancer talk. Voices of hope and endurance from "The Group Room." New York: Broadway Books. http://www.broadwaybooks.com. ISBN# 0-7679-0325-0 (pbk.). Coping with diagnosis, treatment, and recovery as discussed by those who are living with cancer.

Schover, L.R. 1997. Sexuality and fertility after cancer. New York: John Wiley & Sons, Inc. http://www.catalog.wiley.com. ISBN# 0-471-18194-3. A comprehensive resource guide for all cancer survivors.

Spiegel, D. 1993. Living beyond limits: New hope and help for facing life-threatening illness. New York: Random House. http://www.randomhouse.com. ISBN# 0-449-90940-9. A Stanford University psychiatrist reviews 15 years of scientific research and its implications for enhancing quality of life.

Teeley, P. & Bashe, P. 1998. The complete cancer survival guide. New York: Doubleday. http://www.randomhouse.com. ISBN#0-385-48605-7. Just under 1000 pages, this encyclopaedia covers treatment for all cancers. Includes a six-page section on brain metastases.

Wilkes, G.M., Ades, T.B., & Krakoff, I.H. 2000. American Cancer Society consumer's guide to cancer drugs. Sudbury, MA: Jones & Bartlett. http://www.jbpub.com. ISBN#0763711705.

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paediatrics

Charkins, H. 1996. Children with facial difference: A parent's guide. Bethesda MD: Woodbine House. http://www.woodbinehouse.com. ISBN# 0-933149-61-1. Covers diagnostic workup, interdisciplinary treatment, education, speech and language issues, and emotional adjustment.

Fromer, M.J. 1995. Surviving childhood cancer: A guide for families. Washington, D.C.: American Psychiatric Press, Inc. http://www.appi.org. ISBN# 0-88048-668-6. Includes information for siblings and grandparents.

Geller, R. 1998. Victoria's smile. 1998. New York: Scholastic Inc. ISBN: 0-590-13453-1. Schools receive a free copy by calling the National Cancer Coalition at (206) 575-9864. A schoolteacher tells the story of Victoria, a first-grader who was unable to smile after a brain tumour destroyed her facial nerves. Students rally around Victoria rather than ridiculing her as they had once done.

Harpham, W.S. 1997. When a parent has cancer: A guide to caring for your children/Becky and the worry cup: A children's book about a parent's cancer. (2-book package). New York: Harper Collins Publishers. http://www.harpercollins.com/hc. ISBN# 0-06-018709-3. The most comprehensive book on this important subject.

Holbrook, M.C. (Ed.). 1995. Children with visual impairments: A parent's guide. Baltimore, MD: Woodbine House. http://www.woodbinehouse.com. ISBN# 0-933149-36-0. Straightforward discussion of pertinent medical, emotional, social, educational, and family issues.

Keene, N., Ruccione, K. & Hobbie, W.L. 2000. Childhood cancer survivors: A practical guide to your future. Sebastopol, CA: O'Reilly & Associates. http://www.oreilly.com/catalog/chsurviv/. ISBN# 1-56592-460-6. Follow up care, navigating the system, emotions and relationships, insurance and employment, medical issues.

Meyer, D. (Ed.). 1997. Views from our shoes. Growing up with a brother or sister with special needs. Bethesda, MD: Woodbine House. http://www.woodbinehouse.com. ISBN# 0-933149-98-0. 45 children ages 4-18 discuss life with a sibling with special needs. Several of the special needs children have neurological conditions, but not one is a cancer or brain tumour survivor.

O'Brien, E. R. M. 1996. Ellen Rose's story. Boston: The Brain Tumour Society. Read it here. An eight-year-old's perspective on having a brain tumour.

Steen, G.R. & Mirro, J. (Eds.). 2000. Childhood cancer: A handbook from St. Jude Children's Research Hospital. Perseus Press. http://www.perseuspublishing.com. ISBN#: 0-7382-0277-0. A highly readable introduction to children's cancers. The chapter on brain tumours is 20 pages long rather than just a few paragraphs.

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children's fiction

Note: While children's books often go out of print quickly, they can usually be found at public libraries or through Interlibrary Loan.

Benning, E. 1993. Life without Alice. New York: HarperPaperbacks. (Out of print) ASIN# 0-06-106156-5. High school twins; one has a malignant brain tumour, the other is certain she cannot face life without her.

King, B. 1990. Silicon songs. New York: Dell Books. ISBN# 0385300875. 17-year-old computer whiz Max has no family except Uncle Pete who is fighting brain cancer. Pete provides the fathering that Max so desperately needs and teaches him how to cope with loss.

Krisher, T. 1992. Kathy's hats: A story of hope. Morton Grove, IL: Albert Whitman & Company. ISBN# 0807541168. Kathy's family and classmates support her efforts to cope with hair loss from chemotherapy. Reading level: Ages 4-8.

Karp, G. 1998. Choosing a wheelchair: A guide for optimal independence. Sebastopol, CA: O'Reilly & Associates, Inc. (800) 998-9938; http://www.patientcenters.com. ISBN#: 1-56592-411-8. Reviews the selection process, manufacturers, features and options, and funding with a focus on the wheelchair as a mobility tool.

Karp. G. 1999. Life on wheels. For the active wheelchair user. Sebastopol, CA: O'Reilly & Associates, Inc. (800) 998-9938; http://www.patientcenters.com. ISBN#: 1-56592-253-0 (pbk). Addresses medical issues, adjustment to life change, day-to-day living, access, psychological and social issues for people who want to take charge of their own life experience.

Watson, M.A. & Sinclair, H. 1992. Balancing Act: For People with dizziness and balance disorders. Portland, OR: Vestibular Disorders Association. ISBN# 0-9632611-0-X. To order call (503) 229-7705 http://www.teleport.com/~veda/. Excellent tips for managing a condition that is not well understood by the public.

Doris Stickney Water Bugs and Dragonflies 1997

Carolyn Nystrom What Happens When we Die? 1997 

Alicia M Sims Am I Still a Sister? 1986

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grief and bereavement support

Bair, A. 1998. A Table for two: A mother and her young daughter face death together. Intercourse, PA: Good Books. http://www.mennolink.org/books. ISBN# 1-56148-218-8. A Christian family faces the loss of its youngest member to a brain tumour.

Bernstein, J. R. & Donaghy, N. (Ed.). 1998. When the bough breaks: Forever after the death of a son or daughter. Andrews McMeel Publishing. http://www.andrewsmcmeel.com. ISBN# 0836252829. Based on interviews with 55 bereaved parents.

Carroll, D. 1991. Living with dying. A loving guide for family and close friends. New York: Paragon House. ISBN# 1-55778-356-X. Caring for a dying person at home.

Christ, G. H. 2000. Healing children's grief: Surviving a parent's death from cancer. New York: Oxford University Press. http://www.oup-usa.org. ISBN# 0-19-510591-5. Geared towards healthcare professionals, this book explains why children at different developmental levels experience the loss of a parent differently. Numerous case examples are included.

Fitzgerald, H. 1992. The grieving child: A parent's guide. New York: Simon & Schuster.    http://www.simonandschuster.com. ISBN# 0-671-76762-3. Written by the director of the first grief program in the nation established in a community health centre; her husband died of a brain tumour.

Fitzgerald, H. 2000. The grieving teen: A guide for teenagers and their friends. New York: Simon & Schuster (Fireside). http://www.simonandschuster.com. ISBN# 0-684-86804-0. Written not only about but also for teenagers by a woman whose husband died of brain cancer.

Fitzgerald, H. 1995. The mourning handbook. New York: Simon & Schuster (Fireside). http://www.simonandschuster.com. ISBN# 0-684-80161-2 (pbk). Written as a companion to those mourners in need of practical and emotional assistance before and after the death of a loved one.

Kushner, H. S. 1981. When bad things happen to good people. New York: Avon Books. http://www.AvonBooks.com. ISBN# 0-380-60392-6. A compassionate and hopeful book written by a Rabbi whose son died of a rare disease.

Lohmann, J. 1989. Gathering a life: A journal of recovery. Santa Barbara: John Daniel & Co. http://www.danielpublishing.com. ISBN# 0-936784-77-6. A poet's experiences coping with the loss of her husband from brain cancer.

McCracken, A. & Semel, M. (Eds.). 1998. A broken heart still beats: When your child dies. Hazelden Information Education. http://www.htbookplace.org. ISBN# 1568382014. i>A collection of articles, essays and fictional accounts assembled by two bereaved mothers.

Prend, A.D. 1997. Transcending loss: Understanding the lifelong impact of grief and how to make it meaningful. New York: Berkley Books. ISBN# 042515775-X. A hopeful book that focuses on how grief changes through the years.

Rosof, B. D. 1995. The worst loss: How families heal from the death of a child. Henry Holt. ISBN# 080503241X. Written by a child psychotherapist with an emphasis on the first year of grieving.

Schaefer, D. & Lyons, C. 1988. How do we tell the children? New York: Newmarket Press. ISBN# 1-55704-015-X. Helping a child cope with loss by understanding their special needs.

Westberg, G.E. 1971. Good grief. Philadelphia: Fortress Press. http://www.augsburgfortress.org. ISBN# 0-8006-1114-4. A small book that focuses one at a time on the different feelings experienced as grief.

Zunin, L.M. & Zunin, H.S. 1991. The art of condolence. New York: HarperCollins. http://www.harpercollins.com/hc. ISBN# 0060921668. How to sensitively reach out to another at a time of loss.

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Preparing children for the death of a friend

Leo Buscaglia The Fall of Freddy the Leaf

Nancy Dodge Thumpy's Story A Story of Love and Grief

Martha Hickman Last Week My Brother Anthony Died

Bryan Mellonie and Robert Ingpen Lifetimes The Beautiful Way to Explain Death to Children

Janice Cohn and Gail Ownes I Had a Friend Named Peter Peter Talking to Children about the Death of a Friend

Marilyn E. Gootman, Pamela Espeland (Editor), Deborah Prothrow-Stith When a Friend Dies A Book for Teens About Grieving & Healing

Earl Grollman Beacon Press, Boston. 1977 Living When a Loved One Has Died

Charles Ben Bissell Tilden Press, NY. 1983 Letters I Never Wrote, Conversations I Never Had

Vann Wesson Painting the Sunsets With the Angels

Darden & Adams The Everlasting Snowman

Joyce C. Mills Gentle Willow A Story for Children about Dying

Marilyn Maple On the Wings of a Butterfly  

Elisabeth Kubler Ross Remember the Secret

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complementary therapies

American Cancer Society's guide to complementary and alternative cancer methods. 2000. Forward by David S. Rosenthal, M.D. Atlanta: ACS. http://www.cancer.org. ISBN# 0-944235-24-7. Understanding what works, what's dangerous, and how to evaluate efficacy claims.

Todd, A.D. 1994. Double vision: An East-West collaboration for coping with cancer. Hanover, NH: The University Press of New England. http://www.dartmouth.edu/acad-inst/upne/. ISBN# 0-8195-6289-0. A medical sociologist discusses the use of a macrobiotic diet and other therapies to minimize the side effects of radiation therapy for her son's chondrosarcoma.

Lerner, M. 1994. Choices in healing: Integrating the best of conventional and complementary approaches to cancer. Cambridge: The MIT Press. http://www-mitpress.mit.edu. ISBN# 0-262-12180-8. Includes a 30-page chapter discussing Dr. Burzynski's antineoplaston treatment.

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general reference

Brady, C. A. 1997. A concise introduction to medical terminology. (4th edition). Stamford CT: Appleton & Lange. ISBN# 0-8385-4321-9. Over 700 commonly used medical terms and word elements (prefixes, suffixes, and stems) presented in an engaging and entertaining manner.

Diamond, M.C., Scheibel, A.B. & Elson, L.M. 1985. The human brain colouring book. New York: Harper Perennial. http://www.harpercollins.com/hc. ISBN# 0-06-460306-7. Provides a means for adults to learn about the structure and function of the human brain through directed colouring. Developed by internationally recognized neuroscientists and teachers.

Schneider, J.S. & Lidsky, T.I. 1998. The doctor's always in. A guide to 1,100+ best health and medical information on the Internet. Cherry Hill NJ: Neuro Informatics Publishing. http://www.neuroinformatics.net. ISBN# 0-966-4949-0-3. How to obtain reliable, up-to-date medical information while avoiding many pitfalls of the Internet.

Schultz, R. 1992. X-Ray vision: Looking inside the brain. Santa Fe, NM: John Muir Publications. http://www.earthlife.net/insects/pub/j-muir.html. ISBN# 1-56261-064-3 (pbk.). For readers 8 and up; especially appropriate for middle-school children. Detailed and well illustrated.

Simon, S. 1997. The brain: Our nervous system. New York: Morrow Junior Books. ISBN# 0688146406. Simple explanations with colour photographs for elementary-school readers by an award-winning author.

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