Hope and Suffering: Children, Cancer, and the Paradox of Experimental Medicine

Gretchen Krueger paints a vivid picture of deformity, disfigurement, and suffering and offers an equally compelling depiction of hope and incremental advances in the history of pediatric cancers in her book, Hope and Suffering: Children, Cancer, and the Paradox of Experimental Medicine. Krueger’s offering is laid out in chronological order, but several themes manage to permeate throughout: cures and reasonable treatment for childhood cancers, specifically leukemia, have only been available since the 1970s. Research for cancer historically has been done on the backs of desperately ill children at major cancer centers. The psychological burden of cancer has weighed heavily on parents and patients alike, often with little-to-no acknowledgment by medical caregivers, who frequently disagreed professionally about how to handle difficult conversations with families. Lastly, Krueger familiarizes the reader with key moments in pediatric oncology history. This book, as suggested by the title, spends much of its time discussing the role that children have had in cancer research, specifically leukemia research, which is one of the most common childhood cancers. As early as the 1920s, childhood cancer was recognized as a threat to the well-being of the next generation, but it wasn’t until the end of World War II that public health campaigns and foundations began to bring awareness to the disease. Throughout the 1950s, children diagnosed with cancer usually lived less than one month following admission to a major cancer center hospital, even though the care was considered state-of-the-art. It was not until the late 1960s that children had a realistic opportunity for prolonged remissions. Krueger is at her best when she is discussing the psychosocial effects of the disease, and her chapter dedicated to the bestselling illness narrative, Death Be Not Proud, is a particular highlight. In Death Be Not Proud, John and Frances Gunther detail the experience of watching their son succumb to leukemia. Death Be Not Proud was the first to give a voice to the experience of an adolescent cancer patient and his parents, who were forced to helplessly watch their child expire from this disease. Krueger repeatedly shows the reader the traumas that patients underwent in the hopes of “finding a cure” or having their deaths or those of their children not be “in vain.” The consequences, however, of aggressive research were a double-edged sword. Krueger explains that “progress in treating and curing childhood cancers became the justification for increased cancer research funding … the transformation of leukemia … from acute, invariably fatal diseases to nearly chronic conditions created unforeseen challenges …” Hope and Suffering is one best suited for the casual medical historian. Krueger’s writing is not overly technical, and, while she does discuss the medical and scientific advancements made in the field of pediatric oncology, the science behind such breakthroughs is quite slim. Krueger’s most compelling writing is found when she is discussing death and dying and the psychosocial aspects of the disease. Her deliberate choice to arrange the book in chronological order — instead of with a more cohesive theme — works, given its historical nature. However, some of the chapters can feel misplaced. In fact, Krueger writes, “… the history of pediatric cancers splintered into three separate narratives: illness and incurability, short- and long-term survival, and death and dying,” and there are times when the reader wishes she had taken that direction. Overall, Krueger offers a well-researched, interesting work that brings primary source material to light and places the sometimes controversial history of pediatric oncology in a social and cultural context.