The mysterious story of a boy who survived a rare and deadly cancer

What would you do if your toddler had a very rare blood cancer and his treatments were failing? At what point would you decide that it was time to stop those treatments and make him as comfortable and happy as possible for whatever time he had left?

That was the terrible decision faced by the parents of Andrew Levy, who was diagnosed at 14 months old with a form of leukemia so unusual and deadly that his doctors at Lucile Packard Children’s Hospital Stanford didn’t know if anyone had ever survived it. Today, a feature story in the New York Times Magazine tells of the Levy family’s harrowing experience: Andrew’s diagnosis, chemotherapy and bone marrow transplant from his brother. How, when the chemo and transplant didn’t get rid of his cancer, his parents, Dan and Esther, made the difficult choice to forgo further cancer therapies and took him home so that the whole family, including Andrew’s siblings Wills and Lea, could be together near the end of Andrew’s life. How, in July 2014, he seemed very close to death, ceasing to eat and sometimes, momentarily, to breathe. How they waited:

The vigil stretched on through the summer, and what they called “mirages” began to appear. In late July, Esther was sitting outside with [Packard Children’s palliative care psychologist] Dr. Barbara Sourkes, holding Andrew and watching Wills shoot baskets. Suddenly Andrew sat up and reached for a ball and managed to throw it through his own little basketball hoop. Esther and Barbara were speechless.

At first the mirages were brief — Andrew would laugh when Lea showed him her bellybutton or would stack blocks for 10 minutes — and then he would lapse back into pained lethargy for the rest of the day. But soon these episodes began to lengthen. For Esther, the mirages did not feel like miracles but “evil tricks.” She went through intense surges of anger. “I felt like, How many trials are we going to have to endure?” she says. “Are we being spared nothing?”

Esther started sending the medical team videos. “Andrew is eating pizza, Andrew is sitting up, Andrew is laughing,” [Norman] Lacayo, MD, their oncologist, recounts. “And we are like, What?”

In August, as the team struggled to account for what was happening, they theorized that in July, when everyone assumed Andrew was dying of cancer, he must have had a terrible infection instead, which passed. It didn’t change the prognosis: The doctors stressed that, while Andrew might continue to recover from that infection as his new immune system took hold, the cancer cells were also growing and would eventually overwhelm him.

But instead, Andrew gradually grew stronger. In October 2014, Andrew was doing so well that his bone marrow was examined for leukemia. To the astonishment of his family and physicians, the cancer was gone:

The medical team grasped for a scientific explanation. Because Andrew had received no treatment over the summer, the answer had to lie in the bone-marrow transplant of Wills’s cells. Their main theory was that the infection that nearly killed Andrew in July had triggered a huge increase in his new white blood cells — and that heightened immune response had attacked not only the infection but the cancer cells as well.

The entire story is worth reading, as the writer does an excellent job capturing the complicated choices that Andrew’s parents faced and the difficult emotional dimension of their experience.

It’s also worth noting that immune therapy for cancer is a growing area of expertise at Stanford, where our scientists are working to figure out how to harness the power of the immune system to fight cancer in a well-defined, systematic way. Ultimately, the goal is to help children and adults with challenging diagnoses like Andrew’s to have an easier road to cancer-free recovery.

Via Scope

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