In 2010, Emily Whitehead was diagnosed with Acute Lymphoblastic Leukemia, a cancer of certain cells in the immune system.

This is the most common form of childhood cancer, her parents were told, and Emily had a good chance to beat it with chemotherapy. Remission rates for the most common variety were around 85 percent.

It would be 20 months before they’d understand the shadow behind that sunny statistic, and the chilling prospect of volunteering their daughter as patient zero for the world’s first living drug.

From the book The Breakthrough: Immunotherapy and the Race to Cure Cancer, Copyright (c) 2018 by Charles Graeber. Buy on Amazon. Twelve Publishing

Emily started on the 26-month chemotherapy regimen. She lost her hair and most of her kid energy, and the curative poison seemed to be doing its job, sickening her body as it killed the disease. But her cancer, like all cancers, was alive, a constellation of mutant cells that continued to mutate into new variations. Some of these new mutants were immune to the chemotherapy and continued to thrive.

By October 2011, Emily had relapsed; in the language of immunotherapists, her cancer had “escaped.” Her physicians at Pennsylvania’s Hershey Medical Center could only offer more chemo, more aggressively. In February 2012 she relapsed again.

Now it was painfully obvious that Emily was one of the 15 percent of kids with leukemia for whom chemotherapy did not work. The cancer was doubling daily in her bloodstream, and it was too late for a bone marrow transplant—she was too sick. Oncologists now referred to Emily’s cancer as “terminal.” She was 6 years old.

Cancer is shitty and unfair, but that shitty unfairness reaches a whole other level when it happens to a kid. Tom and Kari Whitehead were told that they needed to consider hospice for their daughter. Or, if they wanted, she could die at home. Traditional medicine had nothing else to offer her. But a researcher at the Children’s Hospital of Philadelphia might, if Emily’s parents were willing to take the risk.

The Whiteheads learned of this possibility on a Sunday. By Monday, they were in Philadelphia. Emily Whitehead would be the world’s first kid to try an experimental cancer therapy, called CAR-T. Researchers were offering to reprogram her immune cells into a clone army of cancer-targeting serial killers.

A CAR-T cell is a reengineered T cell that has been removed from the cancer patient, tweaked in the lab to recognize that patient’s cancer, and then injected back into the patient. Because each of these reengineered cells is a monstrous robocop-like assemblage of immune cell parts, researchers had given their invention the equally monstrous name of “Chimeric Antigen Receptor T cell” (in Greek mythology, the chimera is a patchwork monster combining aspects of a lion, goat, and serpent), but “CAR-T” sounds much better.