A Data Set Of One

When you hear hoofbeats, think horses, not zebras. Dr. Theodore Woodward

The pediatric neuro-oncologist’s face was grim when she entered the exam room.

“I’ve reviewed Jimmy’s MRI with the radiologist, and the news isn’t what we’d hoped for. The cancerous lesions in the ventricles, the original area of recurrence, and those in the areas we radiated have all diminished in size. But there are at least six new white spots on the scan that I believe are aggressive, progressive disease.”

Her voice caught, and she began to cry. “It’s clear we aren’t going to get the outcome we all wanted. I think it’s time to prepare for the worst and engage hospice.”

I stopped listening. How can this be happening? Jimmy was just nine weeks past high dose chemotherapy. Only one of the thirty children whose stories I followed had recurred this quickly after the same treatment, and his brain cancer had been far more aggressive than Jimmy’s. Even the little girl who’d had 38 tumors when her cancer recurred had had a slightly improved scan after high dose. It made no sense.

From far away, I could hear Dan’s voice breaking as he asked questions, but I couldn’t make out the words.

I forced myself to pay attention. Still too stunned to respond to the doctor’s hospice recommendation in front of Jimmy, I got her to agree to write to six of the best pediatric neuro-oncologists in the country and ask them to review the scans, offer an opinion on what they saw and, if appropriate, suggest treatment options.

When the doctor forwarded the note she’d sent out a few days later, I got furious. Instead of asking the experts to react to the raw data, she pronounced the white spots “recurrence” and “further progression of disease.”

I had corresponded directly with all six doctors after Jimmy’s cancer had recurred eight months earlier. Too devastated by the news about the scan and the introduction of hospice, I didn’t think I could handle reaching out to them. But the anger cleared my head. Surely there were other explanations, other treatment options left to try. So I wrote my own note and asked the doctors to get back to me directly.

In medical school, young doctors are taught to look for horses, not zebras, when they hear the sound of hoofbeats. The principle is simple – common things are common. It was the textbook approach the pediatrician had used when diagnosing Jimmy’s increasingly debilitating headaches as teenage-onset migraines, even though the pain was manifesting in the wrong location. Although I vehemently disagreed with his cavalier pronouncement, I came to understand it in hindsight. Just 300 kids a year in the United States are diagnosed with medulloblastoma, Jimmy’s form of brain cancer. He had, as nine-year-old Molly pointed out, a better chance of winning the lottery.

The more I thought about it, the less sense Jimmy’s scans made. His original recurrence two years after his initial diagnosis had been small and slow growing. Dr. Nicholson, Dan and I had chosen a treatment protocol that called for four to six rounds of chemotherapy, followed by a single round of high dose chemo. The initial five rounds had eliminated almost all of the metastases. Why would the cancer have suddenly become so aggressive just nine weeks after an intensive, week-long chemotherapy protocol?

Dr. Nicholson had stepped away from being in charge of Jimmy’s care just before high dose after receiving a big promotion that limited his time in clinic. We’d had other concerning issues with his younger partner, but because Dan and I had been able to handle them, I hadn’t allowed myself to question her critical thinking skills.

I reflected back on Jimmy’s initial recurrence eight months earlier. The way Dr. Nicholson had remained calm, despite his deep concern. Most kids whose medulloblastoma recurs are dead within three to six months. Yet Dr. Nicholson had focused on how slow-growing Jimmy’s was, how healthy he was a year past his initial treatment, the fact that there were a number of treatment options available. And he’d insisted that before we do anything, Jimmy undergo a biopsy to confirm that the changes on the scan were in fact cancerous.

While I waited for the second opinions, I spent my time researching scan changes after high dose chemo. As I uncovered more and more studies that found these white lesions were usually treatment-related, a small flame of hope began to grow.

When the doctors emailed their opinions, I asked for a phone call and peppered them with questions. While the first four to respond all believed Jimmy’s cancer had spread, one was open to the possibility that the changes on the scan were treatment-related. Another believed that because Jimmy was young and strong, he had many more options available and a better chance of responding to treatment than most kids.

I took the phone call from a brash young oncologist at Memorial Sloan Kettering in the garage so that Jimmy wouldn’t overhear my conversation. The fifth doctor to respond, his view was the bleakest. Convinced that the white spots were aggressive disease, he offered little hope that Jimmy would live much longer. I asked him to consider my theory that the white spots were actually treatment-induced changes. He rejected the idea. I cited a series of studies. He dismissed them as irrelevant. I pushed harder, asking him to point to the evidence that supported his theory. He got annoyed and said, “It’s recurrence. I know it’s recurrence because my radiologist says so.”

After I hung up the phone, I leaned back against my car, oblivious to how dusty it was and took a deep breath. “He’s wrong,” I thought.

Dan and I asked for a meeting with Dr. Nicholson. Although he was concerned about the white spots, unlike his younger colleague, Dr. Nicholson remained hopeful that he was wrong and said that there were still treatments left to try. He believed that medicine was both art and science, and that if anyone could beat this disease, it was Jimmy. We asked him to resume his role as the head of Jimmy’s care, and he agreed.

A few days later, the last doctor from D.C. Children’s weighed in, saying that he and his radiologist (“the best in the country”) were adamant that there was no evidence of active disease on Jimmy’s scan.

Five weeks after that devastating scan, Jimmy had another MRI. Four of the six white spots were almost gone, and the other two were fading. The areas of enhancement were disappearing, and there were no new concerning areas. Instead of aggressive, progressive disease, the changes had proved to be treatment-related.

Jimmy lived another six years. During that time, he graduated from high school, matriculated at Stanford, majored in Religious Studies and raised money for LIVESTRONG. He refuse to spend time worrying about his quarterly MRIs, saying there was nothing he could do about them anyway and he trusted me and Dr. Nicholson to develop a plan if the results were worrisome.

At Jimmy’s celebration of life, Dr. Nicholson said he had no medical explanation for why Jimmy lived as long as he did, calling him “Jimmy Fowkes, data set of one.” A beautiful reminder that we are each our own scientific experiment, unique and ultimately unpredictable. A zebra in a field of horses.

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