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 Praise for previous editions of Childhood Cancer
“This practical guide will empower parents to understand the disease better and participate
more actively in the treatment process. Recommended for all consumer health collections.”
—Library Journal

“There’s only one word to describe this book—terrific! It is definitive, comprehensive, and easy
to read…I recommend this guide to health professionals in pediatric oncology and all parents
coping with a child with a solid tumor.”
—Denise Cain-Jones, MSW, ACSW
Update Newsletter, Association of Pediatric Oncology Social Workers

“In my 15 years of experience as a pediatric oncology nurse, I have never come across a book
as informative, easy-to-read, honest, and encouraging as Childhood Cancer… [It] will truly
empower those who read it to be better advocates for their children. I am recommending this
book to all the pediatric oncology nurses, social workers, and family support personnel I know.”
—Kari Yarwood, ND, RN, CPON
Pediatrics Special Interest Group Newsletter, Oncology Nursing Society

“Having a child diagnosed with cancer is an emotional time that often leaves a family feeling
helpless and without control. Written by parents who have walked in the shadow of childhood
cancer, this book provides detailed information, open-armed support, and the arsenal of tools
needed to fight the battle that lies ahead.”
—Clarke Anderson, MD
Children’s Center for Cancer and Blood Diseases, Children’s Hospital Los Angeles

“Childhood Cancer is an exceptional resource for parents who are forced to navigate the
complex world of childhood cancer. It is invaluable for all family members.”
—Eleanor Pask, RN, MScN, EdD, Executive Director
Candlelighters Childhood Cancer Foundation ~ Canada
“This guide is written specifically for the families and caregivers of newly diagnosed children…
The authors blend technical information in easy-to-understand language with advice from
scores of parents and survivors…The book is sensitively and thoughtfully rendered.”
—Today’s Librarian
“An excellent, supportive, and well-needed book.”
—Alan Rees
Consumer Health, A Majors Report

“This book uniquely succeeds in meshing clinical knowledge of impeccable scientific quality
with a pragmatic, ‘been there done that’ sensibility of what is important to parents and
caregivers. I recommend it most highly for those in need of helpful knowledge that will
empower and help parents and caregivers to cope.”
—Mark Greenberg, MD
Professor of Paediatrics & Surgery, University of Toronto Chair, Paediatric Oncology Group
of Ontario

“We are eternally grateful for the invaluable information and advice found in this book! As
parents, a patient, and participants in this project, it is truly a gift of guidance, hope, and
comfort. Not only would I recommend it for anyone in need, but it definitely should hold a
proud place on the book shelf of every pediatric facility.”
—Cheryl, Michael, and Shoshana Tobias
Childhood cancer survivor and her parents

“Patient empowerment is the theme, and this new book gives parents and caregivers the
knowledge and skills to partner for the best medical care possible.”
—School Nurse News

“I am a physician and the parent of a child with cancer. The toll that pediatric cancer takes on
families is unquantified, but it includes physical and psychiatric illness in the child and in
family members, divorce, and tremendous financial stress. Having a resource for coping with
all the hardships is the first step toward putting the world back together, and Nancy Keene’s
books are the best solution I have found.”
—Catherine L. Woodman, MD, parent of a childhood cancer survivor
Departments of Psychiatry and Family Medicine, University of Iowa
Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, Third Edition

by Anne Spurgeon and Nancy Keene

Copyright © 2016 Childhood Cancer Guides.

Published by Childhood Cancer Guides, P.O. Box 31937, Bellingham, WA 98228. Printed in
the United States of America.

Printing History:
1997: First Edition
2002: Second Edition
2016: Third Edition

All rights reserved, including the right to reproduce this book or portions thereof in any
form whatsoever. Contact the publisher at [email protected] for
information.

For information about special discounts for bulk purchases, please contact Independent
Publishers Group Special Sales at [email protected].

This book is meant to educate and provide general information. It is not intended as, and
should not be used as, medical advice for individual patients or as an alternative for
professional medical care. In researching this book, the authors have gathered information
from sources they consider to be reliable and current. However, neither the authors nor
Childhood Cancer Guides guarantee or warrant the accuracy, completeness, or currency of
the information provided in this book. In no event will the authors or Childhood Cancer
Guides be liable for any direct, indirect, consequential, or other damages resulting from
reliance on or use of the information provided in this book.

Certain pharmaceuticals, devices, treatments, other products and services, and companies
have been referred to in this book by the trademarks, service marks, or trade names of their
providers. Such references are made for the sole purpose of identifying the item or company
in question and without intent to infringe upon the rights of the respective owners of the
trademarks, service marks, or trade names referenced.

ISBN 978-1-9410-8990-3
Library of Congress Cataloging-in-Publication Data

Names: Spurgeon, Anne, author. | Keene, Nancy, author.

Title: Childhood cancer : a parent’s guide to solid tumor cancers / Anne Spurgeon, Nancy
Keene.
Description: Third edition. | Bellingham, WA : Childhood Cancer Guides, 2016. | Series:
Childhood cancer guides | Revision of: Childhood cancer / Honna Janes-Hodder &
Nancy Keene. 2002. 2nd ed. | Includes bibliographical references and index. | Description
based on print version record and CIP data provided by publisher; resource not viewed.
Identifiers: LCCN 2015045112 (print) | LCCN 2015044034 (ebook) | ISBN 9781941089910
(pdf) | ISBN 9781941089927 (mobi) | ISBN 9781941089934 (eBook) | ISBN
9781941089903 (pbk. : alk. paper)
Subjects: LCSH: Cancer in children--Popular works.
Classification: LCC RC281.C4 (print) | LCC RC281.C4 J36 2016 (ebook) | DDC
362.19892/994--dc23
LC record available at http://lccn.loc.gov/2015045112
 To our children—Alison, Julia, Kathryn, Nate, Peter
and
To all children with cancer—past, present, and future—and those who love
them
 Table of Contents

Foreword

Introduction

1. Diagnosis
Signs and symptoms
Where should your child receive treatment?
Physical responses
Emotional responses
The immediate future

2. Bone Sarcomas
The skeletal system
Osteosarcoma
Ewing sarcoma family of tumors
Information on standard treatments

3. Liver Cancers
The liver
Signs and symptoms
Diagnosis
Hepatoblastoma
Hepatocellular carcinoma
Undifferentiated embryonal sarcoma
Choriocarcinoma of the liver
Liver transplantation
Information on standard treatments
4. Neuroblastoma
The sympathetic nervous system
The adrenal glands
Who gets neuroblastoma?
Signs and symptoms
Diagnosis
Staging
Prognosis
Treatment
Information on standard treatments
Newer treatment approaches

5. Retinoblastoma
The eye
Who gets retinoblastoma?
Signs and symptoms
Diagnosis and staging
Prognosis
Treatment
Information on standard treatments

6. Soft Tissue Sarcomas

Muscles and connective tissues
Signs and symptoms
Diagnosis of soft tissue sarcomas
Rhabdomyosarcoma
Non-rhabdomyosarcoma soft tissue sarcomas
Information on standard treatments

7. Kidney Tumors
The kidneys
Signs and symptoms of kidney tumors
Wilms tumor
 Other types of childhood kidney cancers
Information on standard treatments

8. Telling Your Child and Others

Telling your child
Telling the siblings
Notifying the family
Notifying friends and neighbors
Notifying your child’s school

9. Choosing a Treatment
Treatment basics
Standard treatment
The protocol
Clinical trials
Making a decision
The entire clinical trial document
Removing your child from a clinical trial
Protocol changes

10. Coping with Procedures

Planning for procedures
Pain management
Procedures

11. Forming a Partnership with the Medical Team

Choosing a hospital
The tumor board
Finding an oncologist
Types of relationships
Communication
Getting a second opinion
Conflict resolution
 Changing doctors

12. Hospitalization
The room
The floor
Food
Parking
The endless waiting
Working with the staff
Staying with your child
Preventing mistakes
Playing

13. Venous Catheters

External catheter
Subcutaneous port
Peripherally inserted central catheter
Cost
Choosing not to use a catheter
Making a decision
Adhesives

14. Surgery
Pediatric surgeons
Types of surgery
Presurgical evaluation
Anesthesia
The surgery
Discharge
Rehabilitation

15. Chemotherapy
How chemotherapy drugs work
 How chemotherapy drugs are given
Dosages
Different responses to medications
Questions to ask the doctor
Guidelines for calling the doctor
Chemotherapy drug list
Chemotherapy drugs and their possible side effects
Prophylactic antibiotics
Colony-stimulating factors
Antinausea drugs used during chemotherapy
Drugs used to relieve pain
Topical anesthetics to prevent pain
Complementary treatments
Alternative treatments

16. Common Side Effects of Treatment

Bed wetting
Changes in taste and smell
Constipation
Dental problems
Diarrhea
Fatigue and weakness
Hair loss
Learning disabilities
Low blood cell counts
Mouth and throat sores
Nausea and vomiting
Rehabilitation needs
Serious illnesses
Skin and nail problems
Can pets transmit diseases?
17. Radiation Therapy
Children who need radiation therapy
Types of radiation therapy
Questions to ask about radiation treatment
Where should your child go for radiation treatment?
Radiation oncologist
Radiation therapist
Immobilization devices
Sedation
What to expect during a radiation treatment
Possible short-term side effects
Possible long-term side effects

18. Stem Cell Transplantation

What is a peripheral blood stem cell transplant?
When are transplants necessary?
Choosing a transplant center
Stem cell harvest and storage
The transplant
Emotional responses
Paying for the transplant
Complications after transplant
Long-term side effects

19. Siblings
Emotional responses of the siblings
Sibling experiences
Helping siblings cope
Positive outcomes for the siblings

20. Family and Friends

Restructuring family life
The extended family
 Friends

21. Communication and Behavior

Communication
Common behavioral changes in children
Common behavioral changes in parents
Improving communication and discipline

22. School
Keeping the school informed
Keeping the teacher and classmates involved
Keeping up with schoolwork
Helping siblings
Returning to school
Avoiding communicable diseases
After treatment
Federal laws
Section 504 of the Rehabilitation Act of 1973
Individuals with Disabilities Education Act
Individual healthcare plan (IHCP)
Your legal rights (Canada)
The terminally ill child and school

23. Sources of Support

Hospital social workers
Support groups for parents
Online support
Support groups for children with cancer
Support groups for siblings
Parent-to-parent programs
Hospital resource rooms
Clergy and religious community
Individual and family counseling
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