Childhood Cancer: A Parent's Guide to Solid Tumor
Cancers (Childhood Cancer Guides)
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—Today’s Librarian
“An excellent, supportive, and well-needed book.”
—Alan Rees
Consumer Health, A Majors Report
“is 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 gi 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. e 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, ird 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: ird 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].
is 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: ird 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.
Identi ers: 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.
Classi cation: 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
e immediate future
2. Bone Sarcomas
e skeletal system
Osteosarcoma
Ewing sarcoma family of tumors
Information on standard treatments
3. Liver Cancers
e liver
Signs and symptoms
Diagnosis
Hepatoblastoma
Hepatocellular carcinoma
Undifferentiated embryonal sarcoma
Choriocarcinoma of the liver
Liver transplantation
Information on standard treatments
4. Neuroblastoma
e sympathetic nervous system
e adrenal glands
Who gets neuroblastoma?
Signs and symptoms
Diagnosis
Staging
Prognosis
Treatment
Information on standard treatments
Newer treatment approaches
5. Retinoblastoma
e eye
Who gets retinoblastoma?
Signs and symptoms
Diagnosis and staging
Prognosis
Treatment
Information on standard treatments
6. So Tissue Sarcomas
Muscles and connective tissues
Signs and symptoms
Diagnosis of so tissue sarcomas
Rhabdomyosarcoma
Non-rhabdomyosarcoma so tissue sarcomas
Information on standard treatments
7. Kidney Tumors
e 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
e protocol
Clinical trials
Making a decision
e 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
e tumor board
Finding an oncologist
Types of relationships
Communication
Getting a second opinion
Con ict resolution
Changing doctors
12. Hospitalization
e room
e oor
Food
Parking
e 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
e 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 erapy
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
e transplant
Emotional responses
Paying for the transplant
Complications aer 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
e 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
Aer treatment
Federal laws
Section 504 of the Rehabilitation Act of 1973
Individuals with Disabilities Education Act
Individual healthcare plan (IHCP)
Your legal rights (Canada)
e 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
Camps
24. Nutrition
How treatment affects eating
What kids should eat
Making eating fun and nutritious
Vitamin supplements
What kids really eat
Dietitian/nutritionist
Parent advice
Commercial nutritional supplements
Feeding by tube and IV
25. Medical and Financial Record-keeping
Keeping medical records
Keeping nancial records
Coping with insurance
Sources of nancial assistance
26. End of Treatment and Beyond
Emotions
Last treatment
Catheter removal
Ceremonies
What is normal?
Initial follow-up care
Long-term follow-up care
Treatment summaries
Employment
Health insurance
27. Recurrence
Signs and symptoms
Emotional responses
Goal setting and treatment planning
Making a decision about treatment
28. Death and Bereavement
Transitioning from active treatment
Supportive care
Dying in the hospital
Dying at home
Involving siblings
e funeral
e role of family and friends
Sibling grief
Parental grief
Appendices
A. Blood Tests and What ey Mean
Values for healthy children
Values for children on chemotherapy
Common blood tests
Your child’s pattern
B. Resource Organizations
Solid tumor organizations (United States)
Solid tumor organizations (Canada)
Solid tumor organizations (Australia)
Solid tumor organization (Germany)
Other service organizations (United States)
Other service organizations (Canada)
Other service organizations (Australia)
Camps
Educational and legal support
Financial help
Free air services (United States)
Free air service (Canada)
Free air service (Australia)
Insurance
Medications (low-cost or free)
Sports organizations
Stem cell transplantation
Wish ful llment organizations (United States)
Wish ful llment organizations (Canada)
Wish ful llment organizations (Australia)
Hospice and bereavement (United States)
Hospice and bereavement (Canada)
Hospice and bereavement (Australia)
C. Books, Websites, and Support Groups
How to nd the information you need
Books
Websites
Online support groups
Foreword
Considerable progress has been made in the last 20 to 30 years in treating
children with cancer. Currently, about 80 percent of all children diagnosed
with cancer can be cured, including those diagnosed with solid tumors.
Nevertheless, having a child with cancer must be one of the most traumatic
experiences one can imagine. is book was developed to help educate
parents and caregivers of children with solid tumors to make the experience
easier to endure.
For most people, it is easier to cope with a difficult situation if they
understand what is happening and why. is book will help parents gain a
much better understanding of childhood cancer, its treatments, and their
consequences. It also provides suggestions and guidelines for dealing with
the practical, as well as the emotional, aspects of this experience. e more
parents understand about their child’s disease, the more effectively they can
participate in their child’s care and the decisions about treatment.
is book presents a comprehensive view addressing many of the common
experiences of having a child with cancer: understanding clinical trials;
general principles of surgery, radiation therapy, chemotherapy, and their
side effects; stem cell transplantation; novel approaches to therapy; choosing
a central venous catheter; coping with procedures; and dealing with
hospitalizations. ese chapters can be extremely helpful in preparing for
therapy. Nutrition can be a very important component in tolerating
chemotherapy, and this is also addressed in considerable detail. ere are
also practical tips about record keeping and nances, as well as dealing with
schools and addressing your child’s educational needs.
Six chapters are devoted to the major solid tumors of childhood (excluding
brain tumors): neuroblastoma, kidney tumors, retinoblastoma, liver tumors,
so tissue sarcomas, and bone sarcomas. ese chapters provide
information about the origin and spread of these tumors; the signs and
symptoms of disease; diagnosis and staging; prognostic indicators; treatment
(surgery, chemotherapy, radiation, stem cell transplants); and future
directions. e chapters are organized in a very consistent manner, so
information is easy to nd. Furthermore, many points are illustrated with
stories from the experiences of individual patients to make some of the
information more accessible.
Finally, there are chapters dealing with more emotional and psychological
components of the experience: the importance of siblings, family, and
friends; other sources of support; dealing with feelings, behavior, and
communication; anticipating the end of treatment and beyond; and even
preparing for the possibility of relapse or death. Again, these sections are
generously illustrated with stories that provide examples from real-life
situations.
ere are general themes that pervade this book that make it particularly
valuable. For example, there is considerable empowerment in having a better
knowledge base and understanding about the disease and its treatment. It is
important for parents to participate in an active way in their child’s care, and
in the decision-making process. Also, it is important to be realistic but
optimistic. Cancer is a serious and life-threatening illness, even in the best of
circumstances. ere are some cancers that can be cured reliably in the
majority of cases, and others in which only a minority survive. Nevertheless,
it is difficult to say with certainty at diagnosis whether any individual patient
will survive or not, so there is always reason for optimism. Indeed, the
majority of children with solid tumors can be cured, but the chances of cure
depend on the diagnosis, extent of disease, and certain other biological or
genetic features that in uence response to therapy and prognosis.
e rate of improvement in cure rates has reached a plateau, and we are
encountering long-term effects of cancer and its treatment in the survivors.
Nevertheless, this is also a time of great optimism. Laboratory studies of
cancer cells have revealed a number of clues about what genetic changes are
responsible for cells becoming malignant. ese genes, proteins, and
pathways represent unique features of cancer cells that should allow us to
develop more targeted approaches to therapy. ese novel approaches
should substantially improve the cure rates and have much less toxicity than
current approaches.
—Garrett M. Brodeur, MD
Audrey E. Evans Endowed Chair, Professor of Pediatrics
Chief, Division of Oncology
Children’s Hospital of Philadelphia
Introduction
We are all in the same boat, in a stormy sea, and we owe each other a terrible loyalty.
—G. K Chesterton
Anne and Nancy each have children who survived cancer—Anne’s son had
rhabdomyosarcoma and Nancy’s daughter had high-risk leukemia. Both
children were diagnosed as preschoolers and each had surgery, radiation,
and chemotherapy. We understand that nothing prepares a parent for the
utter devastation of having a child diagnosed with cancer. We have walked
the path from that life-changing moment through information gathering,
treatment, and rehabilitation. We know that fear and worry are lessened by
having accurate information and through hearing the stories of other
children and families who have walked the path before us. We are honored
to share with you what we and many other parents and healthcare providers
have learned.
What this book offers
is book is not autobiographical. Instead, we wanted to blend basic
technical information in easy-to-understand language with stories and
advice from many parents and children. We wanted to provide the insights
and experiences of parents who have all felt the hope, helplessness, anger,
humor, longing, panic, ignorance, warmth, and anguish of their children’s
cancer treatment. We wanted parents to know how other children react to
treatment, and we wanted to offer tips to make the experience easier.
Obtaining a basic understanding of topics such as medical terminology,
common side effects of treatment, and how to interpret laboratory results
can help improve quality of life for the whole family. Learning how to
develop a partnership with your child’s doctor can vastly increase your
family’s peace of mind. Hearing parents describe their own emotional ups
and downs, how they coped, and how they molded their family life around
hospitalizations is a tremendous comfort. And knowing there are other
parents out there who hold their breath with each scan hoping for good
news can help you feel less alone. Our hope is that parents who read this
book will nd understandable medical infomation, obtain advice that eases
their daily life, and feel empowered to be strong advocates for their children.
e parent stories and suggestions in this book are absolutely true, although
some names have been changed to protect children’s privacy. Every word has
been spoken by the parent of a child with cancer, a sibling of a child with
cancer, or a childhood cancer survivor. ere are no composites—just the
actual words of people who wanted to share what they learned with families
of children newly diagnosed with a solid tumor.
How this book is organized
We have organized the book sequentially in an attempt to parallel most
families’ journeys through treatment. We all start with diagnosis, then learn
about the tumor and its treatment, try to cope with procedures, adjust to
medical personnel, and deal with family and friends. We all seek out various
methods of support and struggle with the strong feelings felt by our child
with cancer, our other children, and ourselves. We also try to work with our
child’s school to provide the richest and most appropriate education for our
ill child.
Because it is tremendously hard to focus on learning new things when you
are emotionally battered and extremely tired, we tried to keep each chapter
short. e rst time we introduce a medical term, we de ne it in the text.
Because both boys and girls get cancer, we did not adopt the common
convention of using only masculine personal pronouns (e.g., he, him). We
do not like using he/she, so we alternated personal pronouns (e.g., she, he)
within chapters. is may seem awkward as you read, but it prevents half of
the parents from feeling that the text does not apply to their child.
All the medical information contained in this third edition of Childhood
Cancer is current as of 2015. As treatment is constantly evolving and
improving, there will inevitably be changes. For example, the technology
that supports surgery and radiation treatments continues to improve.
Scientists are currently studying some new medications and genetically
determined responses to speci c drugs that may dramatically improve
treatments. You will learn in this book how to discover the newest and most
appropriate treatments for your child. However, this book should not be
used as a substitute for professional medical care.
We have included three appendices for reference: blood tests and what they
mean; resource organizations; and books, websites, and support groups.
How to use this book
While conducting research for this book, we were repeatedly told by parents
to “write the truth.” Because the “truth” varies for each person, more than
140 parents, children with solid tumors, and their siblings share portions of
their experiences. is book is full of these snapshots in time, some of which
may be hard to read, especially by families of newly diagnosed children.
Here are our suggestions for a positive way to use the information contained
in this book:
• Consider reading only the sections that apply to the present or the
immediate future.
• Realize that only a fraction of the problems that parents describe will
affect your child. Every child is different; every child sails smoothly
through some portions of treatment but encounters difficulties during
others.
• Take any concerns or questions that arise to your child’s oncologist and/or
nurse practitioner for answers. e more you learn, the better you can
advocate for your child.
• Share this book with family and friends. Usually they desperately want to
help and just don’t know how. is book not only explains the disease and
treatments but also offers dozens of concrete suggestions for helpful
things family and friends can do.
Best wishes for a smooth journey through treatment and a bright future for
your entire family.
Acknowledgments
is book is truly a collaborative effort—without the help of many, it would
simply not exist. We give heartfelt thanks to our families and friends who
supported us along the way. Special thanks to our editor, Sarah Farmer, for
her excellent editorial skills, as well as humor, patience, tact, and honesty
