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Patient-Centered Guides

November 27, 2001

Childhood Brain Tumors:
New Parent Resource for a Devastating Diagnosis

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
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