Children with cancer evoke emotions of angst, foreboding, empathy, joy and gratitude in their physicians and nurses. I lived it all and felt it all years ago, not long after I entered private practice of medical oncology in Los Angeles. It took just two young boys to teach me more than I ever wanted to know about cancer in kids.
I had been in practice for just a couple of years. There were not many of us cancer doctors in community practice; most were still affiliated with medical schools. Physicians in private practice were just beginning to interact with us on a routine basis. Our patients were their patients and they observed our treatments and oversaw our manner of care like mother hens protecting their chicks.
There were few chemotherapy drugs available to treat cancer. During my fellowship training I found that I was most comfortable when I had the freedom to adjust drug dosages and intensity of treatment to maximize both a patient’s quality of life and survival—an option not readily available in academic centers where drug administration was designed to be pushed to the limit.
Against this background, I was asked to treat a beautiful tow-headed kid with a Ewing’s sarcoma of his shoulder. His parents had taken him to USC where the cancer surgeons had demanded that he undergo a forequarter amputation– removal of the arm, shoulder girdle, upper chest wall, and back. Chemotherapy would do no good, the family was told.
But he was four years old.
His parents said “No Way!” and somehow they wound up in my office.
He was a brave little guy, and after careful explanation of his options to his parents, he took our treatments stoically. After his first chemotherapy treatment, the mass in his shoulder was smaller!
But the child had a singular side effect from chemotherapy. We called it anticipatory nausea and vomiting. When he got within sight of the facility where he’d been treated, he’d begin to vomit…and vomit…and vomit. He couldn’t help himself. He could not enter the hospital for a second treatment.
I had admitting privileges at a host of hospitals in the San Gabriel Valley in Southern California. I had carefully selected and trained nurses and staff at many of them so I could be confident that my patients would receive the care that I expected, even when I was not present. So every month, my staff arranged admission for the kid to a different hospital. And the boy bravely entered each new facility without vomiting his guts out before he got to the door..
So about every three to four weeks in the early evening, I would set out to Hospital X, with my young patient in the back seat of my car. His mother and assorted kin in tow, we’d get him admitted, and put to bed. I placed his I.V., and administer his chemotherapy myself. Then I’d dope him up with the best anti-thrower-uppers known to man, and send him home as soon as he was able.
Our efforts bought him functional, pain-free time, but not a cure. After several months, the Ewing’s sarcoma began to grow. His shoulder was painful and tender.—the joint was useless. His arm was grotesquely swollen.
He lost his appetite; lost his strength, and became apathetic. He looked gaunt. Radiation therapy to his primary tumor improved the pain. But the tumor had spread to other organs. He died about 15 months after we first saw him. Part of me died then, too, as it had with each patient who died under my care, and as it would for the next three decades.
But this was a child!
I am still haunted by those blue eyes and flaxen hair.
After the child died, my own office nurses approached me as a group. Many of them had small kids of their own. The psychological strain on them had been terrible.
They pleaded, “No more babies! Please!”
I understood. And I promised to refuse refusal to accept any more pediatric tumor patients.
But about 6 moths later, a second kid arrived. He was about seven years old. He had told his parent about a lump in his neck. Biopsy showed Hodgkin’s lymphoma; the staging work-up showed widespread lymph node involvement, indicating the need for chemotherapy.
My nurses glared at me. They howled in protest.
“No More Kids!!! You promised!” they cried. I had agreed with them. The price I myself had paid in stress, anguish, sleepless nights, and sorrow had been too high. We made arrangements to send the boy to Children’s Hospital in Los Angeles.
But he woman and her son spread their bodies on my waiting room carpet like protestors at a political convention.
They would not be moved. I dangled every therapeutic carrot I could before the mother, but she was adamant. She announced repeatedly, “No!! I was sent to you My doctors said you were the best. You will be his doctor.”
So I treated him. His cancer was more treatable, even curable. He suffered. He rebounded. He survived. And he was tumor free. After a decade or so, he graduated valedictorian of his high school.
Maybe it was because they were kids; I could not bear to lose another child on my watch. Maybe it was the pain I felt among my office nurses, and adopted as my own Perhaps the Fates gave us a second, more curable child to offer reassurance for my inability to save the little boy with the blue eyes. Whatever the cause, I carry the special memory of those two little boys deep in a part of my soul. It remains painful, like a wound that never heals.
These two children formed an inseparable matched pair deep in my consciousness. The first child battered me with the unbearably painful, gut wrenching limitations of my role as healer. The second child–now a man going about the affairs of his life–is a victory, of course. But he did most of the heavy lifting himself.
In many ways, these two youngsters represent the raw bedrock of the caregiver’s role in treatment of all cancer patients. One gives as much of him/herself as is needed to fight a dreadful foe: Although I learned early that the truth of prognosis is easier for families to faces than lies of evasion or false hope.
As a rule, I felt that honesty towards my patients and families only disguised my silent hope that I could–I really would do the improbable, or the impossible.
In my heart, where very few, including my wife, my children and grandchildren, my friends, and my comrades in healthcare ever dare to go, there is a quixotic clarion that says,”
“I will give whatever I have in me to give as we reach for what is likely unattainable goal.”
Then the doctor retreats to a world more grounded in reality. He/she goes home and apologizes to one’s long-suffering partner for the late hour, bats his/her babies on the bum, and, unable to clear his head of his failure, reads late into the night while dining on soup that has long since assumed room temperature.
And, if I sleep, I rise before the next sunrise only to seek the next patient who will be brought to me to receive my best effort and my love, as if I carried no wounds from the day before.
But in a more literal sense, these two boys are testament to the unique skills and indomitable psychological and character strength of my colleagues in pediatric oncology. They see kids like this every day…
My hat is off to them, and my head is bowed in respect.
Peter Kennedy MD, December 2015