Ten years ago, Stephan Grupp, MD, PhD, plunged into an unexplored area of pediatric cancer treatment with a 6-year-old patient for whom every treatment available for herGrupp, a pioneer in cellular immunotherapy at Children's Hospital of Philadelphia , had just got the green light to launch the first phase 1 trial of chimeric antigen receptor T-cell therapy for children.
But the Whiteheads had no time to waste and nowhere else to turn. Her father, Tom, recalls saying:"This is something outside the box, this is going to give her a chance." "It does not matter how many cells you give to a patient, what matters is that the cells grow in the patient to the level needed to control the leukemia," he said.
But for Emily, on day 3 of her CAR T-cell infusion, there was a ferocious reaction storm that later came to be called cytokine release syndrome . They ordered a broad cytokine panel that included 30 analytes. The results showed that a number of cytokines"were just unbelievably elevated," he said. Among them was interleukin-6 .
Now, he says, the challenge from the bedside is to keep parents' and patients' expectations realistic about what they see as a miracle cure. Despite their fierce belief in the science that saved Emily, they also acknowledge there was luck — and faith. Early in their journey, when Emily experienced relapse after her initial treatments, Tom drew comfort from two visions, which he calls"whispers," that guided them through several forks in the road and through tough decisions about Emily's treatment.
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