The following excerpt is
taken from Appendix D of Childhood Leukemia: A Guide for Families, Friends,
and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 by O'Reilly &
Associates, Inc. For book orders/information, call (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.
Information provided in this
appendix has been organized by topic. If you cannot find a book in yo ur
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. 1994 with an update
in 1998. (800) 366-CCCF. 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.
Candlelighters
Childhood Cancer Foundation Canada. Resource Catalog. 1999. (800)
363-1062 (Canada only) or (416) 489-6440. Extensive listing of books, articles,
and videotapes on all aspects of childhood cancer. Excellent resource.
Centering
Corporation. Creative Care Package. Lists more than 300 books and videos
on coping with serious illness, loss, and grief. (402) 553-1200.
Compassionate
Friends. Resource Guide. Contains hundreds of books, pamphlets, videos,
and audiotapes on all aspects of grief. (630) 990-0010.
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, 1989. 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.
Dorfman,
Elena. The C-Word: Teenagers and Their Families Living with Cancer.
Portland, Oregon: New Sage Press, rev. ed. 1998. A cancer survivor (treated from
age sixteen to eighteen) spent four years interviewing and photographing the
daily lives of five teenagers with cancer and their families. This book portrays
in words and powerful pictures some of the deepest emotions experienced by teens
with cancer and those close to them. Four of the five teens featured have
leukemia.
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.
Krumme,
Cynthia. Having Leukemia Isn't So Bad. Of Course It Wouldn't Be My First
Choice. Winchester, Massachusetts: Sargasso Enterprises, 1993. To order,
call (718) 729-9037; 14 Wildwood Street, Winchester, MA 01890. Personal story of
Catherine Krumme, diagnosed with leukemia at age four, relapsed at age seven,
finished treatment at age ten. Catherine is now working on a master's degree in
special education.
Kushner,
Harold. When Bad Things Happen to Good People. Boston: G.K. Hall, rev.
ed. 1997. A rabbi wrote this comforting book on how people of faith deal with
catastrophic events.
Lazlo,
John, MD. The Cure of Childhood Leukemia: Into the Age of Miracles.
Rutgers University Press, 1996. Fascinating book that describes researchers and
scientific developments that resulted in the high rate of cures for childhood
leukemia.
Lerner,
Michael. Choices in Healing: Integrating the Best of Conventional and
Complementary Approaches to Medicine. Cambridge, Massachusetts: The MIT
Press, 1996. A comprehensive overview of both conventional and complementary
approaches to cancer treatment, including nutritional therapies, physical
therapies, psychological and spiritual approaches, traditional medicines from
around the world, and methods for living with cancer. Compassionate and
objective. It is also available online at http://www.commonweal.org/choicescontents.html.
National
Institute of Health. Young People with Cancer: A Handbook for Parents. 67-page
booklet. To obtain a free copy, call (800) 4-CANCER. This booklet describes the
different types of childhood cancer, medical procedures, dealing with the
diagnosis, family issues, and sources of information.
CANSearch
http://www.cansearch.org/canserch/canserch.htm
A
guide to cancer resources on the Internet, produced by the National Coalition
for Cancer Survivorship.
GrannyBarb
and Art's Leukemia Links
http://www.acor.org/diseases/hematology/Leukemia/leukmain.html
The
best adult /child leukemia information on the Internet. It includes
leukemia-specific information, leukemia organizations, and links to useful
resources such as CancerNet, PDQ, abstracts, cancer literature, Internet support
groups, bone marrow transplant sites, and cord blood transplant sites.
Pediatric
Oncology Resource Center
http://acor.org/diseases/ped-onc
Edited
by Patty Feist-Mack, this site is the best single source of information about
pediatric cancers on the Internet. It contains detailed and accurate material on
diseases, treatment, family issues, activism, and bereavement. It also provides
links to helpful cancer sites.
Steve
Dunn's CancerGuide
http://www.cancerguide.org
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 pros and cons of researching your own cancer. He also
recommends books and includes inspirational patient stories. He has links to
many of the best cancer sites on the Web.
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/story about a group of friends and what
happens when one of them loses her hair from chemotherapy.
Hairballs
on my Pillow. CARTI. P.O. Box 55050,
Little Rock, AR 72215. (800) 482-8561 or (501) 664-8573. Videotape 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 and its
treatment, dealing with returning students, and additional resources.
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.
Krisher,
Trudy. Kathy's Hats: A Story of Hope. Concept Books, 1992. (800)
255-7675. A charming book for ages five to ten 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. To obtain a free
copy, call (800) 955-4LSA. Coloring book for young children helps to explain
what to expect during the BMT for any type of cancer.
Leukemia
Society of America. Sam Fights Back. To obtain a free copy, call (800)
955-4LSA. A coloring and activity book to help three- to six-year-old leukemia
patients learn about leukemia and discuss their feelings.
Nessim,
Susan, and Barbara Wyman. Draw Me a Picture. A coloring book for children
with cancer (ages three to six). Marty Bunny talks about how it was when he was
in the hospital for cancer and invites readers to draw about their experiences.
Send $7.45 check to Cancervive, 6500 Wilshire Blvd., #500, Los Angeles, CA
90048.
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) ACS-2345. Very comforting book for preschoolage
children with cancer and their siblings.
Mr.
Rogers Talks About Childhood Cancer.
1990. Videotapes (2), guidebook, storybook. Forty-five minutes. VHS. Available
from American Cancer Society. (800) ACS-2345. Mr. Rogers talks to children and
uses characters from the Land of Make Believe to stress the importance of
talking about feelings.
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.
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 Society of America, (800) 955-4LSA.
Childife Council. For
Teenagers: Visiting the Hospital. 1996. Helps acquaint adolescents with
hospital routines and policies, staff, and common medical terms. $2.00. Can
order at:
http://www.childlife.org/publications/pubs.htm.
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.
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."
Richter,
Elizabeth. The Teenage Hospital Experience: You Can Handle It. New York:
Coward, McCann, and Geohegan, 1982.
American Cancer Society. When
Your Brother or Sister Has Cancer. To obtain a free copy, call (800)
ACS-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.
Baker, Lynn, MD. You and
Leukemia: A Day at a Time. Philadelphia: W.B. Saunders Company, 1988 .
Leukemia
Society of America. Acute Lymphocytic Leukemia. Acute Myelogenous Leukemia.
Chronic Mylo genous Leukemia. (800) 955-4LSA. Booklets that explain the
diseases, symptoms, diagnosis, progno sis, and treatments.
Pizzo,
Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of
Pediatric Oncolog y. Philadelphia: Lippencott-Raven, 1997. Extremely
technical.
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. With warmth and understanding, Dr.
Kuttner explains the role and meaning of pain, how to assess pain, and many
methods to alleviate it. Excellent, thorough resource.
Kuttner,
Leora, PhD. No Fears, No Tears. Videotape. Available through the Canadian
Cancer Society: 265 West Tenth Avenue, Vancouver, BC V5Z 4J4, Canada. Phone:
(604) 872-4400; http://www.bc.cancer.ca/.
Documentary of eight young children and their parents as they learn how to
manage the pain of cancer treatment. Runs 27 minutes.
Kuttner,
Leora, PhD. No Fears, No Tears-13 Years Later. Videotape. To order, fax
your request to (604) 294-9986 or send email to: leora_kuttner@sfu.ca.
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. Runs 46 minutes,
42 seconds.
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.
Center for Attitudinal
Healing. Advice to Doctors and Other Big People from Kids. Berkeley,
California: Celestial Arts, 1991. Book written by children with catastrophic
illnesses offers suggestions and expresses feelings about health care workers.
Wise and poignant, it reminds us how perceptive and aware children of all ages
are, and how absolutely necessary it is to involve them in medical decisions.
Keene,
Nancy. Working with Your Doctor: Getting the Healthcare You Deserve.
Sebastopol, California: O'Reilly & Associates, Inc., 1998. Book provides
practical guidance to help patients take an active role in maintaining health
and steps to 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.
Leff,
Patricia Taner, and Elanie H. Walizer. Building the Healing Partnership:
Parents, Professionals & Children with Chronic Illnesses and Disabilities.
Brookline, Massachusetts: Brookline Books, 1992. This book uses parents' and
caretakers' personal stories to explore the feelings of both families and
members of the medical team. Empathetic and practical guide for caring to
children with chronic illnesses or disabilities.
Keene, Nancy. Your Child
in the Hospital: A Practical Guide for Parents. Sebastopol, California:
O'Reilly & Associates, rev. ed. 1999. A pocket guide full of parent stories
to help parents prepare their child 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, California: 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.
McAllister,
Robert M., MD, and Sylvia Horowitz, PhD. Cancer. New York: Basic Books,
1993. This book is divided into three parts: description of cancer, the cancer
patient, and the ten most common cancers. Includes an excellent and detailed
chapter on all aspects of clinical trials and a good basic description of how
cancer cells operate.
National
Cancer Institute. What Are Clinical Trials All About? To obtain a free
copy, call (800) 4-CANCER. Twenty-two page booklet covers basic information
about clinical trials.
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.
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.
Leukemia
Society of America. Directory of Prescription Drug Patient Assistance
Programs. To obtain a free copy, call (800) 955-4LSA. Directory lists
companies that provide prescription drugs to eligible patients either free or at
minimal cost.
Leukemia
Society of America. Understanding Chemotherapy. To obtain a free copy,
call (800) 955-4LSA. Thirty-six-page guide includes general information on side
effects of chemotherapy and detailed information on drugs used to treat
leukemia, lymphoma, and multiple myeloma.
National
Institutes of Health. Chemotherapy & You: A Guide to Self-Help During
Treatment. To obtain a free copy, call (800) 4-CANCER. Fifty-six-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. Reference, issued yearly, lists authoritative
information on all FDA-approved drugs. Technical language. Available at the
reference desk in most libraries.
Pizzo,
Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of
Pediatric Oncology. Philadelphia: Lippencott-Raven, 1997. Chapter 9,
"General Principles of Chemotherapy." Chapter 44, "Management of
Nausea and Vomiting." 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 nonmedical language. Available in most libraries.
McKay, Judith and Nancee
Hirano. The Chemotherapy and Radiation Survival Guide. Oakland,
California: 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. To order a free copy, call (800) 4-CANCER. Fifty-two-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, New York: Lion
Press, 1988. Eighty-nine-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, 1997. Chapter 11,
"General Principles of Radiation Therapy." Extremely technical.
Adams, David, and Eleanor
Deveau. Coping with Childhood Cancer: Where Do We Go From Here? Toronto:
Kinbridge Publications, rev. ed. 1993. Contains an excellent chapter on relapse,
which covers such topics as the impact of relapse, how relapse strikes,
feelings, pain, siblings, adjustment to living, the adolescent patient, and some
thoughts for single parents. This book is out of print, but may be available in
your local library. It can still be ordered from Canadian Candlelighters.
National
Cancer Institute. When Cancer Recurs: Meeting the Challenge Again. To
obtain a free copy, call (800) 4-CANCER. Booklet describes different types of
recurrence, types of treatment, and coping with the return of the cancer.
National
Cancer Institute. Advanced Cancer: Living Each Day. To obtain a free
copy, call (800) 4-CANCER. Thirty-two page booklet provides practical
information to make living with advanced cancer easier.
Blood and Marrow
Transplant Newsletter, (888) 597-7674.
This extremely informative and up-to-date newsletter is written and published by
a former BMT patient. It is published six times a year, and is available by
writing or calling the above number. It is also electronically published on the
Internet at http://www.bmtnews.org.
It is 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.
Johnson,
F. Leonard, MD, and 31 others. The Candlelighters Guide to Bone Marrow
Transplants in Children. Bethesda, Maryland: Candlelighters, 1994. (800)
366-CCCF. Free to families. Straightforward, informative guide designed to
educate parents about what a BMT is, types of BMTs, long-term medical effects,
financial issues, psychosocial effects, impact on schooling and family life,
what happens if the transplant fails, and seven family stories on their
experiences.
National
Cancer Institute. Bone Marrow Transplantation and Peripheral Blood Stem Cell
Transplantation. 1994. To obtain a free copy, call (800) 4-CANCER and ask
for NIH Pub. No. 95-1178. Excellent 50-page booklet covers the purpose of BMTs,
the types of BMTs, complications, long-term effects, financial considerations,
psychosocial considerations, the future of BMTs, clinical trials and PDQ, and
resources.
Pizzo,
Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of
Pediatric Oncology. Philadelphia: Lippencott-Raven, 1997. Chapter 14,
"Bone Marrow Transplantation in Pediatric Oncology." Extremely
technical.
Stewart,
Susan. Autologous Stem Cell Transplants: A Handbook for Patients. Blood
& Marrow Transplant Information Network, 2900 Skokie Valley Road, Highland
Park, IL 60035, (888) 597-7674 or (847) 433-3313. This is the next generation of
Susan Stewart's 1992 Book Bone Marrow Transplants: A Book of Basics for
Patients, updating previous information and focusing exclusively on the
issues pertinent to autologous transplantation.
Stewart,
Susan. Bone Marrow Transplants: A Book of Basics for Patients. Published
by the Blood & Marrow Transplant Information Network, 2900 Skokie Valley
Road, Highland Park, IL 60035, (888) 597-7674 or (847) 433-3313. 170-page book
clearly explains all medical aspects of bone marrow transplantation, the
different types of transplants, emotional and psychological considerations,
pediatric transplants, complications, and insurance issues. Technically
accurate, yet easy to read.
Alternative Medicine
Homepage
http://www.pitt.edu/~cbw/altm.html
American
Cancer Society
http://www.cancer.org
Provides
useful information about cancer treatments, news, and research.
Canadian
Cancer Society
http://www.cancer.ca/
Provides
useful information about cancer and includes a link to its research partner, the
National Cancer Institute of Canada.
CancerNet
Phone: (800) 4-CANCER
Web: http://pdqsearch@icicc.nci.nih.gov/
Email: CancerNet@icicc.nci.nih.gov
Subject:
none or use a dash if required. Message: help (if you use a signature, suppress
it). You will receive a list of available publications and instructions on how
to get the information you want. By far the most comprehensive and up-to-date
source of information about cancer. It is maintained by the US National Cancer
Institute. Many of the resources listed in this book are available from the
database.
If
you would like to be notified by email when CancerNet is updated each month,
send email with the word subscribe or subs as the body of the message. CancerNet
will then send you a message each month telling you what has been updated. To
cancel this service, send email with the word unsubscribe or unsubs as the body
of the message.
CancerWEB
Online Medical Dictionary
http://www.graylab.ac.uk/omd/index.html
One
of the most complete medical dictionaries available on the World Wide Web.
EMF-Link
http://infoventures.com/emf/
Hypermedia
Clinical Practice Guidelines for Cancer Pain
http://www.statsci.com/talaria/talaria.html/
Med
Help International
http://www.medhelp.org/
A
nonprofit organization that provides medical information written in nontechnical
language in order to support patients and their families. The all-volunteer
staff is comprised of physicians and other healthcare professionals who are
electronically connected.
Medicine
Online
http://www.meds.com/
Provides
patients and professionals with in-depth educational information on specific
diseases. Also includes information on reimbursement and a treatment guide.
MediStudy.com
3-304 Stone Road West, Suite 337
Guelph ON, Canada N1G 4W4
Telephone: (519) 827-9203/(877) 702-6334
Fax : (519) 827-9063
Email: contact@medistudy.com
Web: www.medistudy.com
A
source of clinical trial information for Canada, including a searchable database
of trials recruiting patients.
MedWeb:
Oncology
http://www.medweb.emory.edu/MedWeb/
The
Multimedia Medical Reference Library
http://www.med-library.com/medlibrary/
Oncolink
http://cancer.med.upenn.edu
A
text and multimedia service available through the Internet. This service was
started by E. Loren Buhle, Jr., PhD, the parent of a child with leukemia.
Oncolink 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.
Oncolink,
Pediatric Leukemia Page
http://cancer.med.upenn.edu/disease/leukemia
Contains
a large amount of information on childhood leukemia, including bone marrow
transplantation.
Patient
Support.com
http://www.patientsupport.com
PharmInfoNet
http://pharminfo.com
Devoted
to delivering useful, up-to-date, and accurate pharmaceutical information to
healthcare providers, pharmacists, and patients.
Preventing
Central Venous Catheter Infections
http://www.med.umkc.edu/cvcsite/
Designed
to provide useful information to help reduce the risk of central venous catheter
infections.
PubMed
http://www.ncbi.nlm.nih.gov/PubMed/
The
National Library of Medicine's free search service provides access to nine
million citations in MEDLINE and PREMEDLINE (with links to participating online
journals), and other related databases. Also includes FAQs, news, and clinical
alerts.
Rx
List-The Internet Drug Index
http://www.rxlist.com
TeleSCAN-Telmatics
Services in Cancer
http://telescan.nki.nl/
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.
The
Anthony Nolen Bone Marrow Trust
http://www.anthonynolan.org.uk/index.html
A
leading research center and the United Kingdom register for potential donors.
This site references other international BMT sites.
The
BMT Newsletter
http://www.bmtnews.org
All
issues of the BMT newsletters are online, as well as the book Bone Marrow
Transplants: A Book of Basics for Patients.
Bone
Marrow Donors Worldwide
http://BMDW.ORG/
The
National Marrow Donor Program
http://www.marrow.org
Numerous medical journals
are on the World Wide Web. If you do not have access to a medical library, the
Web may be your best bet for finding abstracts from technical journals.
American
Medical Association Home Page
http://www.ama-assn.org
Allows
access to current and past issues of the Journal of the American Medical
Association (JAMA), as well as other journals published by the AMA.
British
Medical Journal
http://www.bmj.com
Links
to sites of medical interest.
The
Multimedia Medical Reference Library
http://med-library.com/medlibrary/Medical_Reference_Library/
Provides
links to many medical journals.
The
New England Journal Online
http://www.nejm.org
Contains
full text of editorials, opinion pieces, and letters, but has only abstracts of
most other articles.
HospitalWeb
http://neuro-www.mgh.harvard.edu/
hospitalweb.shtml/
A
list of hospital sites on the Internet.
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.
Family
Portrait: Coping with Childhood Cancer.
Videotape. Twenty-five minutes. VHS. Purchase from: Films for the Humanities and
Sciences, P.O. Box 2053, Princeton, NJ 08543. (800) 257-5126. Videotape of 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).
Leukemia
Society of America. Emotional Aspects of Childhood Leukemia. To obtain a
free copy, call (800) 955-4LSA. Thirty-four-page booklet covers feelings of
parents, ill child, and siblings from diagnosis through end of treatment or
death. Includes many parent experiences.
Mr.
Rogers Talks with Parents About Childhood Cancer.
1990. Videotapes (2) guidebook, pamphlet. Forty-seven minutes. VHS. Available
from American Cancer Society. (800) ACS-2345. The first tape consists of
interviews with parents which illustrate ways to deal with emotions during
diagnosis and treatment. The second tape sensitively deals with bereavement.
Sourkes,
Barbara M., PhD. Armfuls of Time: The Psychological Experience of the Child
with a Life-Threatening Illness. Pittsburgh: University of Pittsburgh Press,
1995. Written by a psychologist at the Dana-Farber Cancer Institute and
Children's Hospital in Boston, 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.
American Psychological
Association. Finding Help: How to Choose a Psychologist. To obtain a free
brochure, send a self-addressed stamped envelope to Finding Help APA Public
Affairs Office, 750 First St. NE, Washington, DC 20002-4242. The brochure
provides information about psychotherapy, the types of problems that people take
into therapy, and how to choose a therapist.
Bogue,
Erna-Lynne, ACSW, and Barbara K. Chesney, MPH. Making Contact: A
Parent-to-Parent Visitation Manual. Bethesda, Maryland: The Candlelighters
Childhood Cancer Foundation, 1987. To obtain, call (800) 366-CCCF. Step-by-step
guide on planning and running a parent-to-parent visitation program 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: The University of Wisconsin
Press, 1995. Written for and about the parents of children with cancer, this
book provides explanations of how self-help groups are formed, how they function
and recruit, and why they are effective. The authors explain how, through
self-help groups, parents improve their coping abilities and become better
advocates for their child in an increasingly complex healthcare system.
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) 4-CANCER. Sixty-one-page booklet includes sections on sharing
feelings, coping within the family, and when you need assistance.
Pizzo,
Philip A., MD, and David G. Poplack, MD. Principles and Practice of Pediatric
Oncology. Philadelphia: Lippincott-Raven, 1997. Chapter 47,
"Psychiatric and Psychosocial Support for the Child and Family."
Chapter 48, "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 which 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.
http://www.acor.org
ACOR
is currently offering 79 information and support electronic groups to patients,
caregivers, or anyone looking for answers and support about cancer and related
disorders. ACOR hosts several pediatric cancer discussion groups, including
PED-ONC (a general pediatric cancer discussion group) and PED-ALL (pediatric
leukemia).
ALL_KIDS
Childhood Acute Lymphoblastic Leukemia
http://www.all-kids.org/mailing_lists/
ALL_KIDS
is an unmoderated discussion group for parents, siblings, and friends of
children up to age seventeen diagnosed with Acute Lymphoblastic Leukemia.
Members discuss clinical trials, chemotherapies, coping, and any issue
surrounding the care of a child with ALL. Members also provide support,
resources, and their personal experiences.
Sickkids
Mailing List
Email:
listserv@maelstrom.stjohns.edu
Moderated
(with adult supervision) email support group for children under eighteen who
have serious illnesses. The children share information, establish friendships,
ask questions, and exchange humor. There is a team of children who serve as
discussion managers. To subscribe, leave the subject line blank. Message:
subscribe SICKKIDS, your first and last name (if you have a signature, delete
it). Although adults may not participate in the group, they can email questions
or concerns to an adult advisor at: sickkids-request@maelstrom.stjohns.edu.
SpeciaLove
http://www.speciallove.org
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.
Touchstone
Support Network
http://www-med.stanford.edu/touchstone/
A
nonprofit, nonsectarian, completely volunteer organization that provides
emotional and practical support services for children with chronic and
life-threatening illnesses. They help seriously ill children and their families
cope with the day-to-day stresses of their overwhelming situations to help them
maintain as much stability as possible at home, school, work, and in the
community.
Commercial
online services
Most
commercial online services offer a number of health-related topics for which
there are support groups, speaker forums, databases, and other services. If you
subscribe to America Online, for example, click on the Health channel. You can
access MedLine under "Medical Reference." As of March 1999, the
following support groups were active:
Sunday, 7 p.m. EST: Living
with Cancer: Self Help Group
Sunday, 10 p.m. EST: Parents of Kids with Cancer
Monday, 7 p.m. EST: Kids and Cancer
Monday, 9 p.m. EST: Compassionate Friends
Monday, 10 p.m. EST: Cancer Survivors Mutual Support
Consult
the "Help" feature of your service to find what is offered.
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 astonishingly simple yet effective
methods to reduce conflict and foster a cooperative spirit.
Leukemia
Society of America. Emotional Aspects of Childhood Leukemia. To obtain a
free copy, call (800) 955-8484. Thirty-two-page booklet deals with the gamut of
emotions experienced by all members of the family, including siblings.
Murray,
Gloria, and Gerald Jampolsky, eds. Straight from the Siblings: Another Look
at the Rainbow. Millbrae, California: 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. Contains beautiful artwork by the children as well as wise words from
the heart about reactions to the news, feelings, facing death, making choices,
being part of a group, and thoughts for other siblings in a similar situation.
Faber, Adele, and Elaine
Mazlish. How to Talk So Kids Will Listen, and Listen So Kids Will Talk.
New York: Rawson, Wade Publishers, 1995. 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. Reassuring guide for how to effectively parent children who are more
intense, sensitive, perceptive, persistent, energetic, or uncomfortable with
change than average children. Many of the strategies are very effective for
children stressed by cancer treatment.
National
Cancer Institute. Talking with Your Child About Cancer. (800) 4-CANCER.
Excellent sixteen-page booklet on talking with your child about diagnosis. Full
of helpful hints on how to answer many commonly asked questions.
Nelsen,
Jane. Positive Discipline. New York: Ballantine Books, rev. ed. 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, Oregon: Multnomah Books, 1995.
Written by the father of a baby with leukemia, this heartwarming true story
describes how a community raised the entire cost of a successful bone marrow
transplant. Contains numerous ideas for methods to raise funds. Christian
perspective.
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, 1997. Chapter 53,
"Financial Issues in Pediatric Cancer."
Bohannon, Richard, and
others. Food for Life: The Cancer Prevention Cookbook. Contemporary
Books, 1998. Written by an oncologist, a chef, and a writer, this book follows
American Cancer Society guidelines. Contains many tasty recipes.
National
Cancer Institute. Managing Your Child's Eating Problems During Cancer
Treatment. To obtain, call (800) 4-CANCER. Thirty-two-page booklet which
covers how cancer treatments affect eating, how to cope with side effects, and
how to serve more protein and calories.
National
Cancer Institute. Eating Hints for Cancer Patients. To obtain, call (800)
4-CANCER. Ninety-six-page booklet covers eating well during cancer treatment,
managing eating problems, 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, 1997. Chapter 42,
"Nutritional Supportive Care."
Wilson,
J. Randy. Non-Chew Cookbook. Wilson Publishing, Inc., 1986. P.O. Box
2190, Glenwood Springs, CO 81602. (303) 945-5600. Contains recipes for patients
unable to chew due to the side effects of chemotherapy and/or radiation.
American Cancer Society. Back
to School: A Handbook for Parents of Children with Cancer. To obtain a free
copy, call (800) ACS-1234. Sixteen-page introductory booklet covers school
reentry, classroom presentations, the importance of advocates, legal issues,
IEPs, and special needs.
Anderson,
Winifred, Stephen Chitwood, and Deidre Hayden. Negotiating the Special
Education Maze: A Guide for Parents and Teachers. Bethesda, Maryland:
Woodbine House, 3rd ed. 1997. Excellent, well-organized text which clearly
explains the step-by-step process necessary to obtain help for your child. Has
up-to-date resource list and a comprehensive bibliography. Essential reading for
parents of children with special educational needs. If you only read one book,
this should be the one.
Deasy-Spinetta,
Patricia, and Elisabeth Irvin. Educating the Child with Cancer.
Candlelighters Childhood Cancer Foundation. Single copies free to families of
children with cancer, all others $7.50 per copy. Call (800) 366-CCCF for an
order form. This 137-page book discusses all aspects of educating the child with
cancer including educational issues, peer relationships, school reentry, liaison
programs, classroom presentations, cognitive late effects, preparing for
college, college alternatives, legal aspects, and siblings. Includes a
bibliography.
Candlelighters
Childhood Cancer Foundation Canada. School Reentry Resource Manual. 1992.
Write to: CCCFC, 10 Alcorn Ave., Suite 200, Toronto, Ontario M4V 3B1, Canada or
call (416) 489-6440. Sections for parents, educators, and healthcare
professionals regarding siblings, adolescence, survivor's quality of life,
programs, bereavement, and grief.
Chai
Lifeline. Back to School: A Handbook for Educators of Children with
Life-threatening Diseases in the Yeshiva/Day School System. 1995. Write to:
48 West 25th St. New York, NY 10010 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. Includes chapters on grief responses, the bereaved
student, teen grief, developmental changes, sample letter to parents, sample
teacher/parent conference, and suggestions for dos and don'ts.
Hairballs
on my Pillow. CARTI. P.O. Box 55050,
Little Rock, AR 72215. (800) 482-8561 or (501) 664-8573. Videotape 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.
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. Princeton, NJ: Peterson's Guides, 5th
ed. 1997. 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, 1997. Chapter 51,
"Educational Issues for Children with Cancer."
Silver,
Larry, MD. The Misunderstood Child: Understanding and Coping with Your
Child's Learning Disabilities. Times Books, 3rd ed. 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.
Air
Care Alliance
http://www.aircareall.org
A
nationwide association of humanitarian pilots who help needy patients travel to
facilities for necessary treatment.
Patient
Advocacy Numbers
http://infonet.welch.jhu.edu/advocacy.html
Food
and Drug Administration
http://www.fda.gov
For
information on specific drugs, telnet to fdabbs.fda.gov and login as
"bbs."
National
Institutes of Environmental Health Sciences
http://www.niehs.nih.gov
The
US Environmental Protection Agency (EPA)
http://www.epa.gov/children/eleven1.htm
The
US Environmental Protection Agency (EPA) has a Children's Health Resources
branch that maintains publications on children's health topics, information on
hotlines, and links to Internet resources.
Americans
with Disabilities Act information
available on electronic bulletin boards
The
following are telephone numbers of electronic bulletin boards from which ADA
documents can be downloaded if you have a computer with a modem.
US
Department of Justice (202) 514-6193
Disability Law Foundation (205) 854-9074
Compuserve Disability Forum: Call (800) 635-6225 for your local access number.
GEnie Disability Round Table: Call (800) 638-9636 (GEnie subscribers only) for
your local access number.
Project Enable: (304) 755-7842
Washington State access to self-help: (206) 767-7681
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/cancer
survivor Harpham addresses the medical, psychological, and practical issues of
recovery.
Keene,
Nancy, Wendy Hobbie, and Kathy Ruccione. Childhood Cancer Survivors: A Guide
to the Future. Sebastopol, California: O'Reilly & Associates, 2000. A
user-friendly, comprehensive guide on late effects of treatment for childhood
cancer. This book, full of stories from survivors of all types of childhood
cancer, also covers emotional issues, insurance, jobs, relationships, and ways
to stay healthy.
Leukemia
Society of America. Coping with Survival. To obtain a free copy, call
(800) 955-4LSA. Thirty-two-page booklet includes information on diagnosis,
communicating with physicians, treatment, life after treatment, and services and
support.
Pizzo,
Philip A., MD, and David G. Poplack MD, eds. Principles and Practice of
Pediatric Oncology. Philadelphia: Lippincott-Raven, 1997. Chapter 50,
"Late Effects of Childhood Cancer and Its Treatment." Chapter 54,
"Pediatric Cancer: Advocacy, Legal, Insurance, and Employment Issues."
Chapter 57, "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: Bantam Books, 1997. Written by two
hospice nurses with decades of experience, this book helps families understand
and communicate with terminally ill patients. Compassionate, comforting, and
insightful, Final Gifts movingly teaches us how to listen to and comfort the
dying. 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. It contains practical information on what to expect, methods for pain
relief, and control of medical problems. There are appendices on medications,
bibliographies, and dos and don'ts for helping bereaved parents.
Pizzo,
Philip A., MD, and David G. Poplack, MD, eds. Principles and Practice of
Pediatric Oncology. Philadelphia: Lippincott-Raven, 1997. Chapter 52,
"Care of the Dying Child."
Bereavement: A Magazine
of Hope and Healing. Founded in 1987
by a bereaved mother to provide support for those grieving, it allows direct
feedback from the bereaved to helping professionals, and helps the nonbereaved
learn what helps and what hurts. For a free copy or to subscribe, write or call:
Bereavement Publishing, Inc., 8133 Telegraph Drive, Colorado Springs, CO 80920.
(719) 282-1948.
Bernstein,
Judith R. When the Bough Breaks Forever: After the Death of a Son or
Daughter. Kansas City, Missouri: Andrews & McMeel, 1997.
Kubler-Ross,
Elisabeth, MD. On Children and Death. New York: Macmillan, 1983. In this
comforting book, Dr. Kubler-Ross offers practical help in living through the
terminal period of a child's life with love and understanding. She 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 written and photographic memories during the first year of
mourning. Beautiful book filled with quotes and comfort.
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. To obtain, write: Taylor
and Francis, 1900 Frost Road, Suite 101, Bristol, PA 19007. $14.95 plus $2.50
for shipping and handling.
Grollman,
Earl. Talking About Death: A Dialogue Between Parent and Child. Boston:
Beacon Press, 1990. One of the best books for helping children cope with grief.
It contains a children's read-along section to explain and explore children's
feelings. In very comforting language, this 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. It 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. New York: Newmarket
Press, updated ed. 1993. If your terminally ill child has siblings, read this
book. In straightforward, uncomplicated language, the authors describe how to
explain the facts of death to children and teens and show 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.
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.
Houston, Gloria. My
Brother Joey Died. New York: J. Messner, 1982. Simple, caring book describes
one child's journey through grief after the death of her sibling. Describes the
sister's feelings about the funeral, the changed family, her parents' grief, her
grandparents' role, and the comfort of a support group.
Temes,
Roberta, PhD. The Empty Place: A Child's Guide Through Grief. Far Hills,
New Jersey: 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.)
Gravelle, Karen, and Charles
Haskins. Teenagers Face to Face with Bereavement. Englewood Cliffs, NJ:
J. Messner, 1989. The perspectives and experiences of seventeen teenagers
comprise the heart of this book, which focuses on teens coping with grief.
Grollman,
Earl. Straight Talk About Death for Teenagers: How to Cope with Losing
Someone You Love. Boston: Beacon Press, 1993. Wonderful book that talks to
teens, not at them. Discusses denial, pain, anger, sadness, physical symptoms,
and depression, as well as charts methods to help teens actively work through
their feelings at their own pace.
Drying Their Tears.
Produced by CARTI, Communication Division, Markham University, P.O. Box 55050,
Little Rock, AR 72215. For information, call (800) 482-8561 or (501) 660-7614.
Ask for Mary Machen. 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. There are three segments: training
facilitators, a section for children aged five to eight, and one for ages nine
to teens. Each includes interviews with children and video from children's
workshops.
Mr.
Rogers Talks with Parents About Childhood Cancer.
Videotapes (2), guidebook, pamphlet. Forty-seven minutes. VHS. Available from
the American Cancer Society. (800) ACS-2345. The first tape consists of
interviews with parents about ways to deal with emotions during diagnosis and
treatment. The second tape includes sensitive interviews with three bereaved
parents.
The
Healing Path. The Compassionate
Friends sibling video addresses concerns of surviving siblings, such as sadness,
pain, anger, and fear. The 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 (630) 990-0010 or fax (630) 990-0246.