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Hope and suffering: children, cancer, and the paradox of experimental medicine, Baltimore, Johns Hopkins University Press, 2008, pp. x, 216, £23.50, $35.00 (hardback 978-0-8018-8831-1).
Between the 1930s and the 1980s, the expectations of families facing cancer in a child changed so remarkably that the disease changed its meaning—from a time when cancer was believed to be exceptionally rare in children, it came to be seen in the developed world as the second largest killer of children after accidents, and the likely outcome shifted from being a rapid decline and inescapable death to a complete recovery with a normal life thereafter. Over these five decades, billions of dollars were poured into research by the American government and by charities with aggressive advertising campaigns, and the treatments offered diversified and intensified into today’s multiple and cutting-edge protocols.
Krueger’s account of childhood cancer during these middle years of the twentieth century shows that one cannot tell this history without simultaneously tracing stories of personal heartache and uncertainty, and of clinical stumbling blocks and breakthroughs. That childhood cancer has these twin realities should come as no surprise, but this book tells both stories deftly, and weaves them together, presenting rich evidence in a highly readable style that will see it reach wide audiences. It is a very particular story, focusing only on the United States, and thus lays down a challenge to scholars elsewhere to present their own archival treasures in ways that connect with and illuminate this history. International histories of the development of cancer services and research have shown that there are marked differences between countries in how services are prioritized, funded, allocated, and accepted—see for example, David Cantor (ed.), Death in the twentieth century (Baltimore, 2008).
Hope and suffering centres around the memoir Death be not proud written by John and Frances Gunther in 1949; it recounts the battle of their son Johnny, who died from a brain tumour the same year. Krueger makes wonderful use of a large archive of letters written by other families to the Gunthers, and the Gunthers’ replies, to paint a careful picture of how parents and children responded to this level of suffering in their own families and in one another’s.
Earlier chapters similarly foreground the experience of one sick child, one family, allowing Krueger to probe deeply public reactions to cancer through newspaper and court reactions, as well as private correspondence. The closing chapters move further into the clinical history, following researchers into the lab and presenting families’ accounts of how they felt about their children being experimental subjects. The conclusion explores why childhood cancer has been such a popular topic for the American media since the 1930s, and why it is seen as a disease of common interest, worth state funding and close press attention, a disease of the community and not just the private family.
Throughout the book, then, Krueger sets close textual analyses of private experiences alongside accounts of the available clinical options, and shows that until the major breakthroughs of the 1960s, the ultimate responsibility for a child’s health, or death, was seen to lie firmly with the mother: the widespread belief that cancer could be treated most successfully if only it was treated hard and at its first appearance, translated to an understanding—shared by parents and clinicians—that mothers should be more watchful of their offsprings’ health. Only with the advent of curative treatments did the burden to rescue these sick children fall on scientific medicine itself.
The Gunthers’ memoir was frequently set as a text in American high schools in the 1950s to encourage teenagers to broaden their powers of empathy. As Krueger shows, fictional and fictionalized accounts of death from childhood or adolescent cancer remained popular through to at least the 1970s, and a quick search through any library or bookshop in the United Kingdom will show that the topic still draws a large readership here; cancer story-lines in soap operas and films also attract a substantial viewer share. The belief that the drama of childhood cancer is somehow of interest or value to us all persists. Krueger’s book takes us back stage and shows the painful and brave complexity behind each battle. It would be of value in any medical humanities course.