Journal of Pediatric Hematology/Oncology:
Kamen, Barton A. MD, PhD
Department of Pediatrics and Pharmacology, Cancer Institute of New Jersey, Robert Wood Johnson Medical School, New Brunswick, NJ
Reprints: Barton A. Kamen, MD, PhD, Department of Pediatrics and Pharmacology, Cancer Institute of New Jersey, Robert Wood Johnson Medical School, New Brunswick, NJ (e-mail: email@example.com).
In this issue of the journal we are privileged to share some very private time with a courageous family as they battled Wilms tumor in one of first-born twin boys. The year was 1954 to 1955 and the fraternal twins David and Josh had been born a year earlier. The accounting of the Odyssey is in reality the diary of the boys' mother. The last days of the patient's life were written in “real time.”
The text was shared with me initially by Dr Goldstein, the younger brother who was not yet born at the time of the events. I received the original typed manuscript about the time of Mrs Goldstein's 80th birthday last year. As I read, it took on a life of its own, a short novella that I could not read fast enough. Even after being a pediatric oncologist for approximately 3 decades, the account here was remarkable for the clarity of feelings. I could feel myself getting emotional, and waiting for the next test result, along with the family. I could feel their anguish, as they had to make decisions about a life changing illness as a new family and a new job that displaced them across a continent during a time when socially cancer was kept in the closet. When the disease recurred, we go with them to Boston to see Dr Sidney Farber at the newly formed Jimmy Fund Clinic at Boston Children's Hospital. David gets drops of what was apparently some sort of mustard agent but did not have a name, and I also knew, as an historian of our trade, that Farber was testing an antibiotic, actinomycin, during this time. I was hoping for a miracle cure!
Much has changed with regard the care of our patients with this now very curable disease, but even more than 50 years after it was written, a treatment failure is a treatment failure, whether there was a 20% or a 90% chance of cure. The author wrote that one of her favorite physicians was the radiotherapist. When they asked him what the odds were, he said in essence, with each patient, the odds are all or none! As the family spends much time at the Jimmy Fund the author's feelings for the other patients (and their families) and the staff are poignant. I could relate to all, especially the professionals that were liked as technically good caretakers, but not necessarily good for the soul and the other way around. Her worries about the interactions of the 2 boys when the patient was home are detailed and as we may have expected, better than a mom could have wished for.
As I waited for the events to run their course, I realized how much I was getting caught up in coincidences in my life relating to this time. Farber and I share the same birthday, September 30; the first report using aminopterin was in my birth year, 1948, and my colleagues and I have been reinvestigating aminopterin. Moreover, in 1954 my mother had twins also, fortunately, though premature, still healthy today. But back to the Goldsteins. The battles the family fought and the decisions they made then remain the same today, but we as oncologists have better medicines for both tumors and palliative care, we face these issues less often. However, as the radiotherapist noted, the odds are still all or none and we still need to deal with families one at a time.
I am very thankful and honored that Mrs Goldstein allowed us to read about a very private year in her life and I wish her continued good health.
For the record, the names of the patients and staff in this diary, except for the very public figure, Sidney Farber have been changed by Dr Goldstein who served as the technical editor for us, so for any “oldtimers” who may read this, the names are fictitious, the text was otherwise only retyped and spell checked in the modern era.
© 2008 Lippincott Williams & Wilkins, Inc.