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

Hope and Suffering: Children, Cancer, and the Paradox of Experimental Medicine
By Gretchen Krueger. 216 pp., illustrated. Baltimore, Johns Hopkins University Press, 2008. $35. ISBN: 978-0-8018-8831-1

Hope and Suffering is an apt title for this dense, encyclopedic, and riveting book. It includes narratives from patients and their family members that detail the hope, suffering, and despair of the first two decades of cancer therapy, followed by the optimism and successes of the present. A scant 60 years have passed since the article by Sidney Farber et al. on temporary remissions in acute leukemia induced by aminopterin appeared in the Journal, but the battle against childhood cancers began more than a decade earlier in New York City at the Memorial Hospital for Cancer and Allied Diseases (which has since been incorporated into the Memorial Sloan-Kettering Cancer Center).

The history of the development of effective therapies for pediatric cancers is the quintessential story of triumph over tragedy, played out before naysaying and often hostile physicians, desperately ill children, despairing parents, an expectant public, and a hungry press. It is not always possible to adhere to the maxim “primum non nocere,” and that was — and is — the paradox of experimental medicine. No parents want their sick child to be a guinea pig for new potential therapies, but how else are we to make breakthroughs and improve outcomes? Physicians who were trying to change the face of pediatric cancer were often admonished by colleagues to leave their patients alone and were referred to publicly as “baby killers” and “murderers.”

Author Gretchen Krueger recounts these stories in considerable detail and references them exquisitely, highlighting the contributions of physicians like Farber, Emil Frei III, Emil Freireich, James Holland, Gordon Zubrod, Joseph Burchenal, and many others. Perhaps not enough credit is given to Donald Pinkel and his colleagues at St. Jude Children's Research Hospital in Memphis for their studies of the central nervous system in childhood leukemia. Institutions such as Memorial Sloan-Kettering in New York and the Dana-Farber Cancer Institute (with its Jimmy Fund) in Boston, along with cooperative groups such as the Pediatric Oncology Group, are given a fair airing.

Krueger tells an inspiring story of children who wanted to live and grow up and of their families, who supported them and were willing to allow them to undergo new experimental treatments before there were consent forms, institutional review boards, or double-blind controlled studies. It is a story of the hope, courage, and determination of children, their parents, their doctors, and those who ran institutions.

Readers have to be steely to get through this book — the detail, pathos, and heartbreak are almost too much. But that is exactly the reason that everyone involved in oncology today should read it — not just to understand the distance that has been traveled but also to appreciate the deep and abiding faith of all who were involved in this early experimental medicine that they could make discoveries that would save lives. Their faith has led us to extraordinary advances in the treatment of pediatric cancers as well as many adult cancers.

Those who enroll patients in clinical studies should also read this book and should reflect on the incredible obstacles that have been overcome by the systematic thinking and the perseverance of physicians, patients, and patients' families.

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