If you sit down to one longread today, let it be this one.
T he New York Times Magazine features Melanie Thernstrom's reporting on a 14-month-old boy named Andrew Levy and his battle with an extremely rare form of leukaemia. As Thernstrom puts it, "their medical team said getting it was like being bitten by a shark and struck by lightning at the same time."
Andrew's parents, Dan and Esther, were told that their son had a genotype that put his survival rate at about 1 in 10. He also carried a phenotype with a survival rate of 1 in 6. Doctors had yet to see a patient with an equivalent diagnosis.
Multiple rounds of chemotherapy and a bone marrow transplant using marrow donated by Andrew's older brother, were performed. Andrew remained seriously ill, forcing his mother, Esther, to move into the hospital with him. That left Dan and the couple's other two children behind.
A short remission offered some hope, but it was short-lived. Doctors informed the family that Andrew's cancer had returned and the prognosis was grim. Though chemotherapy and another transfusion were suggested as treatments, the Levys recognised that their son's chances of survival were slim and another family separation was unthinkable.
"The odds that it [further treatment] would cause all of us more suffering were 100%," Esther explained.
Ultimately, the couple decided to stop treatment and bring Andrew home so he could live out his remaining days with his siblings. There were deep, dark lows, with Esther having to carry a sick Andrew all day. There were intermittent moments of activity and signs of good health, though each burst of energy was seen as a cruel reminder of what they would soon be mourning.
Nearly a year on, Andrew is still alive. His hair has grown back and he's able to play with his brother and sister. Despite the medical prognosis, his cancer is gone. Doctors suspect that the family's refusal to undergo more chemo, which would have killed off his white blood cells and suppressed his immune system, saved Andrew's life.
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