I am 10 years old, and in the 5th grade. My name is Ronald Joseph Frank Voigt. I have had cancer for more than a year. This may well be two years. I’m determined to keep a dairy. Right now to January, I will be getting antibiotics. I remember how to do it, but my Mom does it. . . .
The nurse is going to come tomorrow to do my port. Sometimes, all this makes me mad, or sad, or all the others, or all of them. Riting to you makes all my tense go away. Christmas is coming up, and I can’t wait. On our three-foot tree, it has a big angel on the top, lots of angels, santas and reindeers.
Well, good-bye. See you tomorrow night.*
During my postdoctoral fellowship at the Johns Hopkins University, R.J. Voigt was repeatedly admitted to the university’s Children Center’s Pediatric Oncology unit. Unfortunately, I never had the opportunity to meet R.J. or his family personally during their many stays, but I am grateful to have learned much about his short life and his family’s heartrending tale through a Grand Rounds lecture based on “If I Die,” a four-part series published in the Baltimore Sun. The lecture, an annual event sponsored by a family who had lost a son to cancer after extensive treatment at the research facility, was established to help teach doctors, nurses, and other medical professionals about families’ experiences of childhood illness and death. As the Sun writer spoke, R.J.’s trips back and forth between his home on Maryland’s Eastern Shore to the medical campus, his daily hospital routines, and, most poignantly, his alternating periods of remission and relapse—times of great hope and suffering—came alive.
R.J.’s plight was at the heart of the reporter’s narrative, yet the stories and photographs vividly illustrated that he was never alone in his struggle. His mom, along with a large multidisciplinary team of technicians, therapists, social workers, teachers, nurses, pediatricians, and oncologists, shared responsibility at every phase of the boy’s care. Through R.J.’s personal journals, his medical records, and extensive interviews with eighteen other families and seventy medical professionals at Hopkins, the journalist carefully untangled the complexities of modern pediatric cancer care. I am indebted to the Voigts and to all of the families who have shared their experiences so openly; to the authors and scholars who laid the groundwork for this study; to the archivists and librarians who provided access to valuable sources; and to the advisors who guided this project to completion. Without such rich sources and dedicated support, this book (and the dissertation that preceded it) would have been impossible.
Many mentors have shared their wisdom and their time. My two undergraduate advisors at Truman State University, Philip Wilson and Janna McLean, engaged me in original research and opened my eyes to the intellectual excitement that enlivens academic communities. They prepared me well for the rigor of graduate school. At Yale University, John Warner and Naomi Rogers pushed the bounds of my dissertation ever outward, and Daniel Kevles was an exacting teacher as he supervised my work in the classroom and carefully reviewed the scientific aspects of each chapter. I owe an especially large debt to my advisor and friend, Susan E. Lederer, who shared her expansive knowledge about the history of medical ethics, the use of children as research subjects, and popular health, thus helping me build a firm foundation for this project. She was also unfailingly generous with her time and insisted on high-quality writing, clear thinking, and clean prose, habits that have improved this book immeasurably and are lasting gifts that will serve me throughout my career. Others provided crucial feedback and support at this stage. Barron Lerner, David Cantor, Keith Wailoo, Janet Golden, Leslie Reagan, and countless others provided key sources, critical feedback, or a new contact at key moments during the writing process. My editor, Jacqueline Wehmueller, saw the promise of this project at an early stage and provided direction. Her involvement and encouragement propelled me from first chapter to dissertation to book manuscript.
I found another intellectual home and refuge for writing at the Institute for the History of Medicine at the Johns Hopkins University. Through the support of this community and the American Society of Clinical Oncology (ASCO), I was given three years to focus on my book project and to deepen my understanding of twentieth-century cancer research and treatment. Many colleagues, including Randall Packard, Mary Fissell, Harry Marks, Jesse Ballenger, and Deborah Whippen, helped me refine my ideas and translate them for various audiences and publications. Two vibrant communities also added new dimensions to my project at key junctures: the Center for Children and Childhood Studies at Rutgers University–Camden and an international group of historians and sociologists focused on cancer organized largely by John Pickstone at the Center for the History of Science, Technology and Medicine at the University of Manchester.
Funding from Yale University and several departmental grants facilitated my research, travel, and writing. I would like to extend my sincere thanks to the following institutions and individuals for providing assistance and valuable sources: the American Cancer Society in Atlanta, Georgia and its Media Division in New York City; Charles Balch and Lisa Persinger at the American Society of Clinical Oncology; the Columbia Oral History Collection; Bill Schaller and the Dana-Farber Cancer Institute; James Holland at Mt. Sinai Hospital; George Canellos at Dana-Farber Cancer Institute; the Lymphoma and Leukemia Society of America; the National Archives at College Park, Maryland; Special Collections of the Regenstein Library at the University of Chicago; Rockefeller Archive Center, Pocantico Hills, New York; and the Schlesinger Library at the Radcliffe Institute, Cambridge, Massachusetts. My colleagues in the Family, Business, and Medical History Center at Wells Fargo Bank enabled me to complete the final phase of editing.
I would also like to thank the Bulletin of the History of Medicine for allowing me to reprint sections of an article (“Death Be Not Proud: Children, Families, and Cancer in Postwar America” 78/4 [Winter 2004]: 836–863) that appear in chapter three. This article, awarded honorable mention by the Shryock Committee of the American Association for the History of Medicine, benefited from the judges’ excellent suggestions. Chapters two and four reprint portions of “‘For Jimmy and the Boys and Girls of America’: Publicizing Childhood Cancers in Twentieth-Century America” 81/1 (Spring 2007): 70–93, from the same journal.
Drafting chapters and making revisions are activities best done in isolation, but writers would surely be lost without the close companionship of friends and the love of family. My parents, Rick and Jean Krueger, told me that anything was possible and helped me live my dreams. My husband, Jim Schuck, believed in me at times when I had lost faith in myself. He has cheered and sustained me from the first word to the last, despite three years living on opposite coasts. I am grateful to all who opened their homes and lent a needed hand to keep us connected across the miles.
* Excerpts from the journal of R.J. Voigt, Baltimore Sun, December 19, 2004, www.baltimoresun.com/news/health/bal-angelsjournal,0,5178698.story.