Childhood Cancer Survivors A Practical Guide to Your Future By Nancy Keene, Wendy Hobbie & Kathy Ruccione 1st Edition May 2000 1-56592-460-6, Order Number: 4606 350 pages (est.), $27.95 (est.)

Introduction

Nancy's story: 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, Kathryn, 3 years old, and Alison, 18 months.

I came home from Kathryn's first hospitalization with two shopping bags full of booklets, pamphlets, and single sheets containing information on a wide variety of topics. I began to learn everything I could about childhood leukemia. With the help of my wonderful family and hardworking friends, I rapidly filled several file cabinets with information on the medical aspects of the disease.

Emotionally, however, I felt lost. I began networking with other parents of children with cancer 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.

My daughter was treated for over two years. During that time, I wrote a book called Childhood Leukemia that included small sections on late effects of treatment. I grew concerned about what the future might hold and continued researching. I went to a national conference and met Wendy Hobbie, who was a featured speaker on the late effects of treatment. Wendy became my after-treatment guide for the next several years and helped ensure that my daughter got state-of-the-art follow-up care.

The very busy children's hospital where my daughter was treated did not provide comprehensive care for survivors. When I asked when Kathryn's first post-treatment echocardiogram would be, I was told, "We don't do those unless there are symptoms." Initially I managed to patch together follow-up care through research, a wonderful local pediatrician, and phone calls to Wendy. Later, Kathryn and I flew 1,000 miles every year to go to a comprehensive follow-up clinic. We now see a specialist in late effects of childhood cancer much closer to our home.

As I learned more about the huge variability in services for survivors of childhood cancer, I began to encourage Wendy to write a book for survivors in easy-to-understand language. She and Kathy Ruccione were two of the authors of a technical book for healthcare providers called Survivors of Childhood Cancer: Assessment and Management. We felt strongly that survivors needed the same information in lay terms. After much discussion at yet another conference, Wendy, Kathy, and I decided to write the book together.

Wendy's story: Seventeen years ago, while in graduate school at the University of Pennsylvania, I met the two people who most influenced my career. Jean Fergusson was my clinical preceptor, who shared her love and knowledge regarding the significant role that nurse practitioners have in caring for children with cancer and their families. Jean was a mentor in every sense of the word--a wise and trusted teacher. Anna Meadows, a physician at Children's Hospital of Philadelphia, generously shared her wealth of knowledge regarding survivors and late effects of therapy. Her energy and commitment to clinical excellence and research were contagious. These two women are largely responsible for the nurse practitioner I am today.

Anna Meadows and I developed one of the first comprehensive care programs for survivors of childhood cancer in 1983. However, it became evident over the years that many survivors did not have access to such programs. Therefore, developing educational materials for survivors became a priority.

Several years ago, I met Nancy Keene, and she later contacted me to review a late effects chapter in her now famous Childhood Leukemia book. I was so impressed with her knowledge, compassion, and writing style that I knew we would work together again in the future.

Kathy Ruccione and I have known each other for many years and shared the goal of educating children with cancer. Our first step was to develop a pamphlet that assisted survivors in organizing information about their disease and potential late effects. We then went on to publish a book to educate healthcare providers regarding the unique physical and psychological needs of childhood cancer survivors. Finally, we have come together with Nancy to create our dream--a book for survivors about survivors.

Kathy's story: When I was a student nurse at Children's Hospital Los Angeles in the 1960s, very few children survived cancer. In my mind's eye, I still see children who were admitted to the hospital, diagnosed, and died there in a scant three months. Our very best nursing skills were directed at keeping these children as comfortable as possible and helping their families prepare for the loss of their child.

I returned to Children's Hospital in the 1970s to work with a remarkable pediatric oncologist, the late Myron Karon, MD. It was a very exciting time of progress and discovery. There had always been a few long-term survivors--kids who survived in spite of the less than curative state-of-the art treatment--but now a new generation was completing treatment and surviving. Our eyes were on the prize: a cure. I remember Dr. Karon summing up the spirit of the past by comparison when he said, "If someone lived long enough to develop complications, we would jump for joy and treat the complications." Now our nursing skills could be focused on helping families prepare for survival, advocating open communication about the disease and treatment, putting new emphasis on quality of life, and educating ourselves about new discoveries in biology, treatment modalities, and supportive care.

Dramatic improvements in survival continued into the 1980s, but what I remember most from that era was the emerging awareness of late effects. In the cooperative group meetings, I watched as pediatric oncologists I admired began to talk about collecting data to see how common these complications were. Organizing studies of late effects was an uphill battle, and I always believed that was at least partly due to a general desire to avoid the "bad news" aspect of improving survival: that, as Dr. D'Angio said, "Cure has its price."

Not surprisingly, it was often the nurses that young people and their families talked with about their long-term complications, confiding their worries and concerns, and their desire not to burden their doctors with these issues because it might seem they weren't grateful for being cured. Several of us took a special interest in these problems, participating in studies of late effects, and organizing long-term follow-up clinics, largely because of the remarkable long-term relationships we had formed with young people in the pioneering generation of survivors as they grew into adulthood.

My own life had changed profoundly with the birth of my son in 1986. Deafness and serious congenital anomalies requiring multiple surgeries were among the challenges this bright, funny, and creative child faced. As I grappled with learning sign language, tracking down resources, mastering the technology, and finding silver linings while living with loss and grief, I began to see parallels in how any of us cope with life-changing and lifelong threats to health and well-being. It helps so much to have signposts along the way, for others with similar experiences to share their personal stories.

Wendy and I had been friends and colleagues since the early 1980s, having met through a mutual mentor, a pioneer in pediatric oncology nursing and late effects, Jean Fergusson. Wendy and I had collaborated on a survivor's follow-up guide, and together we dreamed about writing a book. That first book evolved into a medical textbook, and I still longed to write a book that would weave survivors' personal stories with clear and basic health information for lifetime follow-up. Then, in 1997, I saw Nancy's book on childhood leukemia, a treasure trove of solid medical information, earned wisdom shared by families who had "been there," and concrete suggestions for managing life when a child has leukemia. In Nancy's leukemia book I saw a foreshadowing of what our survivor book could be. And in that "it was meant to be" way that some things happen, soon all these threads wove themselves together, and I found myself, with Wendy and Nancy, fully engrossed in bringing this book, this dream, to life.

Back to: Childhood Cancer Survivors