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May 17, 2016

Cancer was his death sentence—but this boy lived anyway

Daily Briefing

Andrew Levy received a cancer death sentence when he was 14 months old. Eventually, his parents accepted he would die—and then a "miracle" happened, Melanie Thernstrom reports for New York Times Magazine.

The prognosis

Esther and Dan Levy received the worst news a parent could imagine. Their son, Andrew, had acute megakaryoblastic leukemia (AMKL), which afflicts only about 45 children annually in the United States. For most patients, the odds of survival are about 50 percent—but Andrew had a particular genotype and phenotype that reduced his odds of survival even further.

Andrew's doctor, Norman Lacayo, an oncologist at Lucile Packard Children's Hospital at Stanford University, and his team couldn't find a single case in the literature of a patient surviving with the cards that Andrew had been dealt.

They decided to perform a bone-marrow transplant as quickly as possible. Luckily, Andrew's brother, Wills, was a perfect match. Before the surgery, Andrew underwent chemotherapy—but testing revealed traces of cancer remained when the surgery was performed, making the odds of success low.

Post-surgery, Andrew was in agony and extremely vulnerable to infections. Caring for him was a full-time job that put tremendous stress on the family. "Esther remained Andrew's full-time nurse, responsible for a dizzyingly complex regimen of medications and sterile changes of the IV," Thernstrom writes.

In April, a bone-marrow test suggested Andrew was in remission. But by June, the doctors had bad news: Andrew's cancer had returned. The team wanted to do another round of chemotherapy and another bone-marrow transplant.

The Levy family couldn't bear the thought of months of chemo for Andrew. They decided to stop treatment. "It is not about the length of life that matters, but the quality of life," Esther wrote in a Facebook post. "We are going to focus on quality."

But waiting for Andrew's death turned into an emotional roller coaster. Each sign of life was a torment for Esther. "I can't think of anything more painful than spending time with your precious baby knowing that he is going to die soon," she posted on Facebook.

By July, it looked like his death was near. Andrew was extremely ill, in pain, and at risk of bleeding to death because of a low blood count. "A hospice nurse told them to buy dark towels for Andrew's crib, so that if he started to bleed uncontrollably, the sight would be less frightening for his siblings and for them," Thernstrom writes.

Andrew's breathing was labored and he could hardly move.

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But then he didn't die. Over the summer, Andrew began to show signs of improvement: He played with blocks. He sat up. He laughed. The Levys began sending Lacayo videos of such moments.

The doctors theorized that Andrew's brush with death in July was due, not to cancer, but to a terrible infection. They cautioned the Levy's that his cancer likely would still progress and end Andrew's life.

Later, their palliative care doctor convinced the Levys to give Andrew a blood transfusion so that he wouldn't bleed to death. When the family took Andrew to the hospital, test results showed something unexpected: Andrew's platelets—necessary for his blood to clot—were increasing, not going down.

A 'miracle'—and a possible explanation

By October, Andrew was walking and playing with his siblings. "None of the doctors had ever seen this kind of recovery before," Thernstrom writes. "They decided to bring him back to the hospital for a bone-marrow test."

Michael Loken, who had analyzed Andrew's blood work and determined his poor prognosis, got "goose bumps" looking at his latest bone-marrow test results. "The cancer had disappeared," Thernstrom writes.

Jennifer Willert, the pediatric oncologist who oversaw Andrew's transplant, says it felt like a "miracle," a sentiment echoed by other members of the care team.

But there may be an explanation. Andrew's doctors theorized that the infection that nearly killed Andrew also produced a "huge" increase in his white blood cells. The heightened immune response, in turn, may have attacked and killed his cancer cells.

Timing may have played a role, with Andrew's cancer returning from remission just as his immune system was rebounding. "A critical part of why transplants work is that some of the white blood cells, the T cells, that grow from the transplanted bone marrow will attack any lingering cancer cells, an effect known as graft versus leukemia," Thernstrom explains.

Willert increased the odds of that scenario when she deviated from Stanford's standard protocol. She "had advocated a rapid early taper of Andrew's immune-suppressing drugs" so there would be an increased likelihood that Andrew's immune cells would attack his cancer.

"The final, critical decision was made against medical advice," Thernstrom notes. "Esther and Dan's resolution to stop treatment and let Andrew die. Had they permitted more chemotherapy, the treatment would have killed Wills's cells, which were what ultimately enabled Andrew to live" (Thernstrom, New York Times Magazine, 5/12).

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