Foreword

EVERY YEAR IN THE UNITED STATES approximately 12,000 children and adolescents under
the age of twenty years are diagnosed with cancer. Of these children, approximately
2,500 will be afflicted with acute lymphoblastic leukemia and 500 with other types of
childhood leukemia. Significant progress has been made in the treatment of childhood
cancer over the past four decades, best illustrated by the dramatically improved cure rate
for children diagnosed with acute lymphoblastic leukemia. A leading textbook on child-
hood cancer published in 1960* described leukemia in childhood as being “incurable.”
Today, the cure rate for children diagnosed with acute lymphoblastic leukemia is 75
percent overall, and over 85 percent in certain groups of children with particular
types of leukemia.
Not every child with leukemia, however, is guaranteed a cure, and progress in the
treatment of certain types of leukemia has been definite but slow. Long-term effects
following childhood cancer and its treatment are now common as more children are
cured of cancer. Thus the diagnosis of any form of cancer in a child remains devastat-
ing to a family suddenly thrust into a foreign and threatening world of new and
frightening words, medical tests and treatments, uncertainty about the future and,
perhaps worst of all for parents, loss of control in guiding their child’s life.
The best resource to help survive this new world is knowledge. Nancy Keene has
taken her experience following the diagnosis of leukemia in her 3-year-old daughter,
Katy, melded this with the experiences of more than 100 other families, and produced
an invaluable source of knowledge for parents of children diagnosed with cancer.
Although the book focuses on leukemia, it contains information that will prove
extremely helpful to parents and families coping with any type of childhood cancer.
Keene writes in her introduction, “I wanted to provide the insight and experiences of
veteran 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 it easier.” She has clearly succeeded.
This most complete parent guide available covers not only detailed and precise medi-
cal information about leukemia and the various treatment options from chemotherapy
to bone marrow and stem cell transplantation, but also day-to-day practical advice
including how to handle 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. The cumulative experiences of so many
families who have faced the entire spectrum of what can happen in caring for a child
with leukemia, and the comprehensive bibliographies, make this such a unique and
helpful resource.
This book, however, is not only for parents. It will prove equally instructive for any-
one, but particularly for all healthcare professionals involved in the treatment of
children with cancer. The honest and candid opinions expressed by children being
treated for cancer, their siblings, and parents serve as a reminder of the continual
need for the highest standards of competence and compassion in helping families
manage the difficult and sometimes overwhelming physical, emotional, social, and
financial burdens they face. Chapter 6, Forming a Partnership with the Medical Team, is
an especially important chapter because it is this partnership and honest sharing of
knowledge that returns as much control as possible to parents in making necessary
decisions about the care of their child. Every child is different, as is every hospital,
and not every physician or medical center will necessarily follow all of the guidelines
described in the book. Treatments evolve and change. Nonetheless, the knowledge
gained by reading this book will enable parents to ask the right questions and to
become an integral part of the partnership in their child’s treatment.
We still strive for the universally “truly cured child.” As described by Dr. Jan van Eys, a
pioneer in childhood cancer treatment: “Truly cured children are not just biologically
cured, free of disease, but developmentally on a par with their peers and at ease with
their experience of having had cancer.Ӡ 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
The Robert C. Neerhout Professor of Pediatrics
Chief, Division of Pediatric Hematology/Oncology
Oregon Health and Science University
Director, The Kenneth W. Ford Northwest Children’s Cancer Center
Doernbecher Children’s Hospital
Portland, Oregon