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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.
Call (800) 770-8287 or see http://www.tbts.org to order. 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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