Introduction

xvii
We are all in the same boat, in a stormy sea, and we
owe each other a terrible loyalty.
—G. K. Chesterton
MY LIFE ABRUPTLY CHANGED on Valentine’s Day, 1992, when my 3-year-old daughter
was diagnosed with acute lymphoblastic leukemia (high-risk). At the time, I was the
full-time mother of two small daughters, Katy, 3 years old, and Alison, 18 months.
The phone call from my pediatrician informing me of Katy’s probable diagnosis
began my transformation into a “hospital mom.” On the two-hour trip to the nearest
children’s hospital, I naively thought that my background would equip me to deal
with the difficulties ahead. I had a degree in biology, and had worked my way
through the university in a series of hospital jobs. I had experience in the blood bank,
the emergency room, the coronary care unit, and the IV (intravenous) team. After
college, I was a paramedic with a busy rescue squad and for several years taught
emergency medical technician courses at the local community college. I understood
the science and could speak the jargon; I thought I was prepared.
I was wrong. Nothing prepares a parent for the utter devastation of having a child
diagnosed with cancer. My brain went on strike. I couldn’t hear what was being said.
I felt like I was trapped in a slow-motion horror movie.
I came home from Katy’s first hospitalization with two shopping bags full of book-
lets, pamphlets, and single sheets containing information on a wide variety of topics.
I didn’t know how to prioritize what I needed to learn, so I started by researching
everything that I could about leukemia. With the help of my wonderful family and
hardworking friends, I began to rapidly fill several file cabinets with information on
the medical aspects of the disease.
Emotionally, however, I felt lost. Since most of Katy’s treatment was outpatient, I lived
too far away to benefit from the hospital’s support group, and I knew no local parents
whose child had leukemia. I felt isolated. Then I discovered Candlelighters. (See
Appendix C, Resource Organizations.) This marked a turning point in my ability to deal
effectively with my daughter’s disease. I began networking with the parents and made
marvelous friends. I soon realized that we shared many of the same concerns and were
dealing with similar problems. Advice from “veteran” parents became my lifeline.
Why I wrote this book
As I approached the end of Katy’s treatment, I realized that I had amassed not only a
library of medical information, but scores of first-person accounts of how individual
parents coped. It saddened me to think that most parents of children with leukemia
would, like me, have to expend precious time and energy to collect, assess, and
prioritize information vital to their child’s well-being. After all, parents are busy pro-
viding much of the treatment that their child receives. They make all appointments,
prepare their child for procedures, buy and dispense most medicines, deal with all of
the physical and emotional side effects, and make daily decisions on when the child
needs medical attention. In a sense, this book grew out of my concern that other
overwhelmed parents should not have to duplicate my efforts to gather and organize
information.
What this book offers
This book is not intended to be autobiographical. Instead, I wanted to blend basic
technical information in easy-to-understand language with stories and advice from
many parents and children. I wanted to provide the insight and experiences of parents,
who have all felt the hope, helplessness, anger, humor, longing, panic, ignorance,
warmth, and anguish of their children’s treatment for cancer. I wanted parents to know
how other children react to treatment, and I wanted to offer tips to make the experi-
ence easier.
Obtaining a basic understanding of topics such as medical terminology, common side
effects of chemotherapy, and how to interpret blood counts can only improve the
quality of life for the whole family suffering along with their leukemic child. Learn-
ing how to develop a partnership with your child’s physician can vastly increase your
family’s comfort and 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. Just knowing that there are other kids on
chemotherapy who refuse to eat anything but tacos or who have frequent rages
makes one feel less alone. My hope is that parents who read this book will encounter
medical facts simply explained, will find advice that eases their daily life, and will feel
empowered to be a strong advocate for their child.
The 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. There are no composites, no editorializing, and no rewrites—just
the actual words of people who wanted to share what they learned with others.