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 Praise for Previous Editions
“Keene has written a comprehensive handbook to serve as a road map for others, from
diagnosis through treatment.”
— Library Journal,
*starred* review and chosen for “Nursing Your Children’s Health Collection”

•••••
“This most complete parent guide available covers not only detailed and precise medical
information about leukemia and the various treatment options, but also day-to-day practical
advice…. Parents who read this book will have the opportunity to ensure that, as much as
possible, they can give their child the very best opportunity to be ‘truly cured.’”
— F. Leonard Johnson, MD,
Chief, Division of Pediatric Hematology/Oncology Oregon Health Sciences
University

•••••
“This wonderful book is an informative addition to the House library, and one we will
recommend wholeheartedly. By providing this resource to the children and families staying
here, you enable them to find a bit of hope and peace of mind in a time of great difficulty and
confusion.”
— Peggy Enright, House Director,
Boston Ronald McDonald House

•••••

“As the mother of a two-time survivor of ALL—yes it can recur, in my daughter’s case after a
14-year remission—I can vouch that the road to cure is bumpy, filled with life-threatening
complications and requiring aggressive in-hospital care. A valuable resource to help parents
and children regain their equilibrium after diagnosis and during the two to three years of
treatment.”
— Patricia Dane Rogers,
The Washington Post

•••••
“Highly recommended. In this new edition, Keene provides updates on treatment including
bone marrow transplants, chemotherapy drugs, and methods of dealing with side effects….
Poignant and supportive.”
— Alan Rees,
Consumer Health, A Majors Report

•••••
“Of all the many kinds of help we had (and we had lots) Childhood Leukemia was the single
best gift we received. It was the gift of knowledge, so we could ask intelligent questions about
our daughter’s care. It was the gift of security, allowing us to foresee much of what was coming,
and giving us the tools we needed to cope. And it was the gift of hope, for we could see that
many children do, indeed, get through this trying time, and come through the grueling
treatment intact.”
— Kim Warren,
mother of a child with leukemia

•••••

“The great value of Nancy Keene’s exceptional book is that it puts the facts and explanations
into understandable terms while acknowledging and dealing with the emotional aspects as
only parents who have had similar experience can.”
— Mark L. Greenberg, MD,
Medical Director, Pediatric Oncology Group of Ontario

“Our 7-year-old daughter was diagnosed with ALL. We have found Childhood Leukemia to
be our absolute bible. Not only do we use it for general information, but we rely heavily on this
book for reassurance in times of crisis (real or potential). I cannot imagine not having the
information so close at hand and so well organized.”
— Jocelyn Hillman,
mother of a child with leukemia

•••••
“This book is an extraordinary resource. In its pages the reader will find clear, concise, and
understandable information about childhood leukemia. And even more powerfully, the reader
will ‘hear’ the voices of parents who share their experiences in their own words: what worked,
what didn’t, what helped, what hurt.”
— Kathy Ruccione, PhD, MPH,
 Children’s Hospital of Los Angeles

•••••

“I am the great grandmother to a little four-year-old girl who has the type of leukemia known
as ALL. Your book has been so helpful to the parents and they recommended it to all the rest of
the family, so I read it. I am 90 years old and had been a bookseller for 25 years…. Your book is
so complete and so helpful in every way, that I couldn’t resist sending you my compliments for
writing it. Bless you.”
— Alice H. Sobey,
great grandmother of a child with ALL

•••••

“This book is an invaluable reference for children, their family and their health care providers.
It provides important information written in ways families can understands. Ms. Keene
presents difficult and sometimes troubling information in a sensitive and balanced manner. I
highly recommend it for patients, family members and health care providers.”
— Debra L. Friedman, MD,
Director, Division of Hematology-Oncology, Vanderbilt

•••••
“This is the most comprehensive resource available for parents and caregivers of children
diagnosed with leukemia. These families must become immediate experts and Childhood
Leukemia: A Guide for Families, Friends & Caregivers presents up-to-date information in
understandable language. Parents find the vignettes helpful, comforting and encouraging. We
believe so strongly in this book that a copy is given to each family.”
— Mary McSherry, ACSW, LSW,
The Children’s Hospital of Philadelphia

•••••

“Childhood Leukemia is the very best book on the subject that I have read, and I’ve read
everything I could put my hands on. It is absolutely correct in the subject matter it covers and
the approach. I wish someone had put a copy in my hands the day after the diagnosis. It
literally will be a life-saving book.”
— Rebecca Laird,
mother of a child with leukemia
 •••••

“Nancy Keene, whose daughter survived childhood leukemia, offers help and support in this
comprehensive guide for families, friends, and health care providers of childhood leukemia
patients. Leukemia Society staff and volunteers regularly use this guide as a valuable reference
tool.”
— NewsLine, Leukemia and
Lymphoma Society
Childhood Leukemia: A Guide for Families, Friends & Caregivers, 5th Edition, by Nancy
Keene

Copyright © 2018 Childhood Cancer Guides. All rights reserved.

Printed in the United States of America.

No part of this book may be used or reproduced in any manner whatsoever without written
permission, except in the case of brief quotations embodied in reviews. For information,
contact the publisher at Childhood Cancer Guides, P.O. Box 31937, Bellingham, WA 98228
or [email protected].

To obtain 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 978-1-941089-040

Library of Congress Cataloging-in-Publication Data

Names: Keene, Nancy, author.

Title: Childhood leukemia : a guide for families, friends & caregivers / Nancy Keene.
Description: Fifth edition. | Bellingham, WA : Childhood Cancer Guides, [2018] | Includes
index.
Identifiers: LCCN 2017031837 (print) | LCCN 2017032121 (ebook) | ISBN 9781941089064
(pdf) | ISBN 9781941089071 (mobi) | ISBN 9781941089118 (ebook) | ISBN
9781941089040 (pbk. : alk. paper)
Subjects: LCSH: Childhood Leukemia.
Classification: LCC RJ416.L4 (ebook) | LCC RJ416.L4 K44 2018 (print) | DDC
618.92/99419--dc23
LC record available at https://lccn.loc.gov/2017031837

This book is printed on acid-free, recycled paper. Childhood Cancer Guides is

committed to using paper with the highest recycled content available consistent with
high quality.
In memory of Bill and Doris Keene
 Table of Contents

Introduction

1. Diagnosis
Signs and Symptoms
Where Should Your Child Receive Treatment?
Physical Responses
Emotional Responses
The Immediate Future

2. Overview of Childhood Leukemia

Leukemia Is a Blood Disease
Definition of a Blast
When Leukemia Begins
Types of Leukemia
Who Gets Leukemia?
Basic Genetics
Best Treatments for Childhood Leukemia

3. Acute Lymphoblastic Leukemia

ALL Is a Blood Disease
Who Gets ALL?
Signs and Symptoms
Diagnosis
Prognosis
 Treatment
Information on Current Treatments

4. Acute Myeloid Leukemia

AML Is a Blood Disease
Who Gets AML?
Signs and Symptoms
Diagnosis
Prognosis
Treatment
Information on Current Treatments

5. Juvenile Myelomonocytic Leukemia

JMML Is a Blood Disease
Who Gets JMML?
Signs and Symptoms
Diagnosis
Prognosis
Treatment
Information on Current Treatments

6. Chronic Myelogenous Leukemia

CML Is a Blood Disease
Who Gets CML?
Signs and Symptoms
Diagnosis
Prognosis
Tyrosine Kinase Inhibitors
Treatment
Information on Current Treatments
7. Telling Your Child and Others
Telling Your Child
Telling the Siblings
Notifying the Family
Notifying Friends and Neighbors
Notifying Your Child’s School

8. Choosing a Treatment
Treatment Basics
Standard Treatment
Clinical Trials
Making a Decision
The Entire Clinical Trial Document
Protocol Changes

9. Coping with Procedures

Planning for Procedures
Pain Management
Procedures

10. Forming a Partnership with the Medical Team

Choosing a Hospital
The Doctors
Finding an Oncologist
Types of Relationships
Communication
The Tumor Board
Getting a Second Opinion
Conflict Resolution
Changing Doctors
11. Hospitalization
The Room
The Floor
Food
Parking
The Endless Waiting
Working with the Staff
Staying with Your Child
Preventing Mistakes
Playing

12. Central Venous Catheters

External Catheter
Subcutaneous Port
Peripherally Inserted Central Catheter
Choosing Not to Use a Catheter
Making a Decision
Adhesives

13. Chemotherapy and Other Medications

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 Drugs and Their Possible Side Effects
Chemotherapy Drugs
Prophylactic Antibiotics
Colony-stimulating Factors
 Antinausea Drugs Used During Chemotherapy
Drugs Used to Relieve Pain
Complementary Treatments
Alternative Treatments

14. Common Side Effects of Treatment

Bed Wetting
Changes in Taste and Smell
Constipation
Dental Problems
Diarrhea
Fatigue and Weakness
Hair Loss
Learning Differences
Low Blood Cell Counts
Mouth and Throat Sores
Nausea and Vomiting
Osteonecrosis
Rehabilitation
Serious Illnesses
Skin and Nail Problems
Steroid Problems
Pets

15. Radiation Therapy

Overview
Children Who Need Radiation Therapy
Questions to Ask About Radiation Treatment
Radiation Therapy Facilities
Radiation Oncologist
 Radiation Therapist
Radiation Simulation
Sedation
Cranial Radiation
Testicular Radiation
Total Body Radiation
Possible Short-term Side Effects
Possible Long-term Side Effects

16. Stem Cell Transplantation

When Are Transplants Necessary?
What Is a Match?
Types of Transplant
Finding a Donor
Choosing a Transplant Center
Stem Cell Harvest and Storage
The Transplant
Emotional Responses
Paying for the Transplant
Complications after Transplant

17. Siblings
Emotional Responses of the Siblings
Sibling Experiences
Helping Siblings Cope
Positive Outcomes for the Siblings

18. Family and Friends

Restructuring Family Life
The Extended Family
Friends
19. Communication and Behavior
Communication
Common Behavioral Changes in Children
Common Behavioral Changes in Parents
Improving Family Life

20. 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
Individual Healthcare Plan (IHCP)
Your Legal Rights (Canada)
The Terminally Ill Child and School

21. Sources of Support

Hospital Social Workers
In-person Support Groups for Parents
Online Support Groups for Parents
Support Groups for Children with Cancer
Support Groups for Siblings
Hospital Resource Rooms
Individual and Family Counseling
Clergy and Religious Community
Camps

22. Nutrition
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