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 childhood 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 devastating 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 childrens 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.
* Ariel, I.M., and A.T. Pack, eds. Cancer and Allied Diseases of Infancy and Childhood. Boston: Little, Brown & Company, 1960.
This most complete parent guide available covers not only detailed and precise medical 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 anyone, 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."1' 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."
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 Childrens Hospital Portland, Oregon
1 Van Eys, J., ed. The Truly Cured Child: The New Challenge in Pediatric Cancer Care. Baltimore: University Park Press, 1977.
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