When Esther and Dan Levy's son Andrew was 14 months old, he received a diagnosis of a kind of leukemia so rare that their medical team said getting it was like being bitten by a shark and struck by lightning at the same time.
Leukemia, a cancer of those cells in the bone marrow that produce new blood cells, has many varieties, but the most common type in children, acute lymphocytic leukemia, is largely curable. Andrew's cancer, however, a subtype of acute megakaryoblastic leukemia (AMKL), affects only about 45 children a year nationwide and is much more difficult to treat. The odds of surviving this type of AMKL are roughly even — unless the child is one of a handful who happen to have a particular genotype, in which case these odds plummet to a mere one in 10. Genetic analysis revealed that Andrew was in this tiny group.
There was more bad news. Two weeks after the diagnosis, Andrew's doctor, Norman Lacayo, an oncologist at Lucile Packard Children's Hospital at Stanford University, received an urgent call from Michael Loken, the president of Hematologics Inc., a Seattle lab that was analyzing Andrew's cells. Loken had recently discovered that a small percentage of children with AMKL had a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient's initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. Andrew had this phenotype too.
"Has anyone ever survived this kind of cancer?" Dan asked Lacayo. "All I wanted to know is that it was not impossible," Dan recalls. Lacayo said yes, but Dan felt his answer was "foggy." The truth was that the team couldn't find a single equivalent case in the literature.
Beginning on that December morning in 2014 when Esther took Andrew to the E.R., she recalls, she felt as if they had stepped into a horror movie, the unfolding events both surreal and evil. Up to that point, Esther and Dan had led, in her words, "charmed lives — picture perfect." Only a small subset of people would sincerely say that nothing truly bad has ever happened to them; before the diagnosis, Esther and Dan say, they were among them. When Andrew got sick, they were in their mid-30s and energetic, optimistic and extroverted. They had both attended Stanford — Dan majored in industrial engineering, Esther in human biology, with a minor in dance — before going on to successful careers. Dan founded a sports-related start-up, then became vice president of small business at Facebook, while Esther worked at Kurbo, a start-up focused on weight management for kids, and taught spin classes at a Jewish community center for fun. Their own families were stable and close-knit; to recall any true adversity in either family, they had to think back to a grandmother of Dan's whose family perished in the Holocaust.
Once Andrew's illness was diagnosed, he needed a bone-marrow transplant as swiftly as possible. First the doctors had to kill the leukemic cells in Andrew's bone marrow with chemotherapy, then replace them with a donor's cells. Andrew's 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, and in the family's first bit of luck since the diagnosis, Wills turned out to be a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure.
The Levys had created a Helping Hands website, where friends signed up to host play dates or deliver meals (as did our family because our children were in the same school as Wills), and a Facebook group for updates on Andrew's illness, which 1,700 people joined. But despite all the support, Esther felt deeply "alone with the experience," she says. Her former life had vanished: She was living in Andrew's hospital room, sleeping on a sofa that opened into a hard bed. She had left her job and the rest of her family while Dan continued to work and live at home with Wills and Lea. Her nights were punctured by Andrew's cries; her days were spent frantically trying to distract him from his pain and nausea, cleaning up his vomit, holding him down during blood draws and making stressful medical decisions. He screamed if she left him for a few minutes, even to use the bathroom or shower.