SEBASTOPOL, CA -- Over 2,500 children are diagnosed with
brain and spinal cord tumors each year, and that number is growing.
A diagnosis of a brain or spinal cord tumor in a child is
emotionally devastating to the family. Extended family, school
classes, and entire communities are affected. Support is
crucial for the family to weather the diagnosis and the long,
grueling treatment regimes.
Parents need to make treatment decisions quickly. However,
understanding the complexity of the condition and treatment
options can be daunting. Significant advances in medical care
make it imperative that families actively participate in care and
choose options that will give them the fewest side effects,
longer remissions, and the best chance for cure. For example,
better surgical results are obtained by having the child's
surgery performed by a pediatric neurosurgeon. Participation in
clinical trials can give access to state-of-the-art treatments,
such as a new delivery method of radiation or chemotherapy which
may reduce side effects in the brains of growing children.
Resources for parents dealing with this diagnosis are increasing.
A number of nonprofit organizations now exist to help parents
with emotional support, access to information on clinical trials,
and/or research dollars. (Organizations listed at the end of this release).
The first ever book for parents, Childhood Brain & Spinal Cord
Tumors, has just been released. Written by two well-known
pediatric nurse practitioners and one parent of a child with a
brain tumor, it has been reviewed by the top pediatric
neuro-oncologists and neurosurgeons in the world.
This complete
parent guide includes detailed and precise medical information
about both benign and malignant brain and spinal cord tumors that
strike children and adolescents. In addition, it offers
day-to-day practical advice on how to cope with procedures,
hospitalization, family and friends, school, social and financial
issues, communication, feelings, and, if therapy is not
successful, the difficult issues of death and bereavement.
Woven among the medical details and the practical advice are the
voices of parents and children who have lived with cancer and its
treatments. As many parents have already found, advice from
"veteran" parents can be a lifeline.
Obtaining a basic understanding of topics such as medical
terminology, how drugs work, common side effects of chemotherapy,
and how to work more effectively with medical personnel vastly
improves the quality of life for the whole family suffering along
with their child. Having parents describe their own emotional
ups and downs, how they coped, and how they molded their family
life around hospitalizations can be a tremendous comfort. Just
knowing that there are other kids on chemotherapy who refuse to
eat anything but tacos or who have frequent rages can make one
feel less alone.
Parents who read this book will encounter medical facts simply
explained, advice to ease their daily life, and tools to be a
strong advocate for their child.
Includes extensive resources and a pull-out medical record-keeper.
Press may receive a complimentary copy of this book.
About the Authors
Tania Shiminski-Maher received her BSN and MS in pediatric
primary care from Columbia University. She is certified as a
pediatric nurse practitioner, clinical neuroscience registered
nurse, and pediatric oncology nurse. She has worked as a
pediatric nurse practitioner in pediatric neurosurgery and
pediatric neuro-oncology for the past fifteen years. She has
published extensively in the area of pediatric brain tumors,
hydrocephalus and multidisciplinary team communication. She has
been a member of the nursing committee of the Children's Cancer
Group for the past fifteen years and a member of the nursing
steering committee for ten years. She holds academic appointments
to the faculty of New York University School of Nursing and
Hunter-Bellevue School of Nursing.
Patsy Cullen received her BSN in nursing from the University of
California, her MS from the University of Kansas, and her
pediatric nurse practitioner training from the University of
Colorado. She has worked as a pediatric nurse practitioner in
Pediatric Oncology for more than 20 years and is currently a
member of the staff of Childhood Hematology-Oncology Associates
and the Rocky Mountain Children's Cancer Center in Denver,
Colorado. She has published extensively in the areas of general
pediatric oncology, radiation oncology and neuro-oncology. She
has been a member of the Children's Cancer Group for twenty
years, has served on the Nursing Discipline committee as
Vice-Chair and now chairs the clinical trials subcommittee.
Additionally, Patsy is now a Principal Investigator in the
Children's Oncology Group, administratively heading the program
at Presbyterian-St. Luke's Medical Center and was recently
elected to serve on the group's Nominating Committee. She has
held nursing appointments on many national pediatric CNS tumor
trials and is currently on the CNS Tumor Steering Committee for
the Children's Oncology Group.
Maria Sansalone has a Bachelor's in English from American
International College, and an Associate's in Science degree. She
has worked in the past in hospital settings in the area of health
information management, and for the last ten years as a Cross
Reference editor for Merriam-Webster, Inc., the dictionary and
reference publishers. Her position allows her access to
information from almost every field. But, nothing, she says,
prepared her for her son's diagnosis of an optic glioma. "It was
a completely shocking and shattering experience, and it's taken
many years to find a balance. Listening to families relate their
own experiences for this book was immensely influential. I think
it helped to bring things back full circle."
Editor Nancy Keene has been author or co-author of three other
books on childhood cancer and is well-known for her advocacy
work.
The Foreword is written by Henry S. Friedman, MD, James B.
Powell, Jr. Professor of Neuro Oncology, The Brain Tumor Center
at Duke.
Advance Praise
"This book should be handed to every family at the moment of
diagnosis. Its unique power is that it unites state-of-the-art
medicine with state-of-the-heart care. Everyone who cares about a
child with a brain or spinal cord tumor, and everyone who cares
for them, will find this book essential and indispensable."
--Fred Epstein, MD, Beth Israel Medical Center
"A must-read for both parents and professionals."
--Henry Friedman MD, Co-Director, The Clinical Neuro-Oncology
Program of the Brain Tumor Center at Duke
About Patient-Centered Guides
Patient empowerment is the core of Patient-Centered Guides. We
believe that people are empowered when they have the knowledge
and skills to partner with their doctor or healthcare provider to
get the best medical care possible.
We publish books that contain clear, concise, easy to understand
information about the medical, practical and emotional aspects of
health issues. Our authors are patient activists, knowledgeable
about specific conditions and diseases, who have built strong and
networked communities of patients, families, and caregivers. In
addition to our books, we publish
in-depth patient information on the web at www.patientcenters.com.
Patient-Centered Guides is a wholly-owned subsidiary of O'Reilly
& Associates, Inc. O'Reilly is recognized worldwide for its
technical books that provide value to people who are experiencing
information pain. O'Reilly publishes books that make a difference
in people's lives.
Childhood Brain & Spinal Cord Tumors:
A Guide for Families, Friends & Caregivers
By Tania Shiminski-Maher, Patsy Cullen, and Maria Sansalone
$29.95, 568 pages, 7"x9", trade paperback
ISBN: 0-596-50009-2
PUBLICATION DATE: December 1, 2001
Childhood Brain Tumor Resources for Parents
-
American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018
(800) 886-2282
http://www.abta.org/
-
The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
(800) 770-8287
http://www.tbts.org
-
Candlelighters Childhood Cancer Foundation
3910 Warner Street
Kensington, MD 20895
(800) 366-CCCF
http://www.candlelighters.org
-
Childhood Brain Tumor Foundation
20312 Watkins Meadow Drive
Germantown, MD 20876
(301) 515-2900
http://www.childhoodbraintumor.org
-
Children's Brain Tumor Foundation
274 Madison Avenue, Suite 1301
New York, NY 10016
(866) 228-4673
http://www.cbtf.org
-
The National Brain Tumor Foundation
414 Thirteenth Street, Suite 700
Oakland, CA 94612
(800) 934-2873
http://www.braintumor.org
-
Musella Foundation for Brain Tumor Research and Information
http://www.virtualtrials.com
