Where My Shadow Fell

Where My Shadow Fell

– John Graham-Pole, MD, MRCP-UK, Professor emeritus of pediatric oncology and palliative care, University of Florida

In this essay I reflect on my journey through the evolving field of pediatric oncology—from a time when childhood cancer was nearly always fatal to the gradual emergence of cures. Drawing on my personal experiences with patients and their families, I examine the ethical complexities, emotional burdens, and medical milestones that shaped both my career and my conscience. It is a candid reckoning with the cost of progress and the shadow that healing often casts.

The Early Years

The first evidence that children’s cancer could respond to chemotherapy came early in the nineteen-forties. But it would be many years before we would start to see long term remissions of these diseases, let alone cures. In 1968, early in my pediatric residency, eight-year-old Tracy came into our Emergency Room with a high fever and severe tummy cramps. I could feel a large mass arising out of her pelvis, and moving her legs caused her to cry out in pain. X-rays revealed the telltale signs of widespread neuroblastoma, a highly malignant and invasive cancer. She was the first child with cancer I had ever seen. We treated her with the best chemotherapy available at that time, and Tracy had a complete response that lasted for eight months, at which time she had a widespread recurrence.

This was also the first of many occasions when I had to break the news to young parents that we had given their child the best treatment we had available, and that all remained was to keep her comfortable. During those early years it was all too often my task to let parents know that their child’s cancer had recurred despite our best efforts—always a horribly painful duty. We had learned to use the best therapy we had when a child’s cancer was first diagnosed, so I knew that secondary treatment was almost certain to fail and might well cause worse side effects. Those second-line treatments were vitally important to us as researchers, because they included new and little tested chemotherapy drugs, some of which would in time find their way into our frontline treatment protocols. But I never said this to parents in so many words. Fully informed consent is especially hard in this setting because of the complexity of our research studies, the emotional state of the families, and their dependence on us physicians to do our very best for their child. Explaining the purpose of testing these essentially experimental treatments to young parents was hard and could raise conflicts between our research goals and our focus on family-centred care.

But long term successes, which eventually came to be labelled cures, were still decades away. One of my first patients during my pediatric oncology fellowship in London in 1970 was a thirteen-year-old girl, Shirley, who had already received several potent treatment protocols and had responded each time for shorter and shorter periods. She died in hospital with a widespread recurrence of her cancer shortly before I finished my fellowship. We certainly learned a great deal from her responses—or lack of them—to our increasingly experimental therapies. But would it give her parents solace today to know that since that time thousands of children have climbed over their daughter’s dead body, and that today most of them are achieving long term remissions and even cures of their cancers? It certainly gives me little solace to know that almost all the children I treated during the first half of my working life—from the mid-sixties to the mid-eighties—died of their cancer despite my treatment. It was only during the second half of my career—from the mid-eighties to 2007 when I retired—that a fast-growing number of children were cured as a result of what we had learned from our earlier experiments.

Experiments and Hope

Oncology is unique among the many medical specialties in allowing us to develop and test several sequential treatment protocols for different forms of cancer. Because children with cancer not only respond to protocols that incorporate several chemotherapy drugs but are also far more resilient than adults, our treatments grew more and more intensive. In 1976, I returned to my alma mater, St. Bartholomew’s Hospital in London, to establish the UK’s first unit dedicated to childhood cancer. I at once ran afoul of the head nurse on the unit when I introduced an intensive chemotherapy regimen for a child with acute myeloblastic leukemia—a highly aggressive form of cancer that had only recently started to yield to such chemo protocols. I still remember her horror at the treatment I was proposing:

“You are giving these poor parents quite unjustified  hope, doctor. No one has ever been cured of this form of leukemia. You are simply condemning this little girl to unwarranted suffering. I wish to register my strongest objection to your proposed treatment!”

I had learned to pay good attention to the advice of nurses. They aren’t the ones who develop these treatment protocols, but it is they who have to implement them, and to care for the patients when they inevitably develop severe side effects. But I had been hired to test these experimental treatments, so I pressed on in the face of this senior nurse’s strong objections. It was touch and go over the next many weeks until eventually the little girl responded completely to my treatment and never looked back. So for me the end justified the means. But it could well have gone the other way, and she might well have died a miserable death from the side effects of my treatment, as did so many of my patients.

Ted and the  Transplant Era

But what serendipity that I should have lived through this period when the success of chemotherapy for cancer emerged in full force. Because it was both the responsiveness of these young patients and their resilience to these horribly toxic drugs that finally led us to recognize that chemotherapy could cure cancer. In 1987, I was in charge of our bone marrow (now mostly called stem cell) transplant center at the University of Florida when Ted Haines came into my life. Thirty-five years after I first met him in our pediatric oncology unit, he has recently turned up again to prompt me with old memories. Now approaching his fiftieth birthday, he just emailed me to say thank you for saving his life—and to update me on his last three decades and more. Much water under many bridges.

Ted was blessed with that rarity of an identical brother, Rick. Less than 30% of children have fully matched family members who can donate enough stem cells for a successful transplantation to one who needs them. Identical twins are a rarity—perhaps two percent of births, though such twinning is getting commoner as in vitro fertilization grows in popularity. It was Ted’s special stroke of fortune that, when at the age of thirteen he developed B-cell leukemia, brother Rick was right there to become his bone marrow donor, because we knew that a stem cell transplant was the best treatment for this highly aggressive cancer.

He entered our unit around Easter time in 1987 and came through almost unscathed by our intensive treatment. I don’t remember those daily poker games he wrote about in his email, which he says I let him win, but I do know that Ted would go on to become one of our early cures.  Our treatment protocol of chemotherapy and radiation  was the most intensive that anyone could tolerate—and without an immediate infusion of stem cells Ted would not have recovered. He was cured of his cancer, and the price he paid—diabetes, thyroid and neurological troubles, along with other less severe long term effects—were unquestionably worthwhile to him, so once more the result certainly seemed to justify the means.

But in the eighties, most pediatric oncologists still considered stem cell transplants an excessively intensive form of therapy. I had become a transplanter almost ten years earlier and had gathered a band of “transplant buddies” from across North America to develop treatment protocols for children with several different forms of leukemia and other pediatric cancers that we judged incurable with less intensive treatment. Were we right in our judgment? I know today, and in truth I knew back then, that a proportion of these children could have been cured with more conventional chemotherapy—treatment that stopped short of the high intensity that required a stem cell infusion. We had come to expect such steady improvements, but the choice of treatment was entirely in the hands of the pediatric oncology team working at the centre where the patient happened to show up. Essentially, it was a straight choice between more aggressive and less aggressive therapies.

Ethical Reflections

Healing and harm often walk hand-in-hand together. How much did ego and self-advancement go into the treatment I chose for my patients? Medical research is far from a pristine and selfless entity. A member of our hospital ethics committee challenged me about who paid for these experimental and often very expensive treatments? She saw it as highly unethical to charge our patients, which was exactly what we were doing. I had no argument to oppose her view, and shortly afterwards resigned from the ethics committee so I didn’t have to face such challenging questions.

I remember an interview at that time with the head of the national Pediatric Oncology Group (POG), and how she forbade me to study this ethical issue. I wanted the ethics committee I had recently formed to study whether enrolling patients on POG treatment protocols, which were paid for with federal government money, was coercive. I knew the answer, and so did she. It was indeed coercive, but we never explained to the parents of children with newly diagnosed cancer that by enrolling their child on a POG protocol the cost would be met entirely by the government, whereas if the parents chose against enrollment they would have to pay for it out of their own pockets. Rather than explain this during our informed consent forms, it was far easier to duck the issue by shielding our families from this stark truth. Money is at the heart of many treatment choices parents to consent to—whatever that word consent really means.

Soon after that interview, I wrote a poem about this very issue:

Consensus and Consent

Eleven-year-old Kyle’s cancer can still be cured.

At least so we believe, though based on shifting grounds,

its intransigence having stacked the odds against him.

True, more experimental therapies await our testing,

whatever that word experimental has come to mean.

Yesterday’s conference had brought us to consensus,

our new resident quoting from an obscure publication

that highlighted new drugs showing definite promise,

although they were yet to be tested on Kyle.

Kyle, consulted today, says: “No, I want to go home.”

So be it. He has, we allow, reached the age of consent,

whenever that may be. We feel—all in all, taking everything

into consideration—relief that we’ve chanced upon a decision.

So it was eleven-year-old Kyle who made his own decision to forgo more experimental treatment. And he had the blessing of his parents, who took him home that very day to die of his cancer in his own bed.  The overall costs of experimental therapies, in terms of lives lost and their attendant suffering of both the children and their families, is beyond measure. But where my shadow once fell on so many young lives, I now see the light of those who survived—children like Ted, grown to adulthood. That’s the shadow I now choose to walk beside.