Susan and Scott Reinart were preparing to take their three young sons on vacation when 9-year-old Will’s low-grade fever, fatigue, and aching legs just wouldn’t go away. Susan took Will to an urgent-care clinic in their hometown of Cedar Falls, Iowa, for what they thought would be a quick checkup.
“When his blood tests came back, the doctor’s face was just as white as a sheet,” Susan recalls.
Further testing confirmed it: Will had acute lymphoblastic leukemia.
“We were in complete disbelief,” Susan says.
After the shock wore off, the Reinarts and Will’s doctors agreed upon a treatment plan of chemotherapy for three years. All seemed well for a year after that—and then Will’s leukemia came back.
Will’s care team recommended that the family go north to University of Minnesota Masonic Children’s Hospital, an internationally respected pioneer in the field of blood and marrow transplantation (BMT)—which would be Will’s next line of therapy.
“We did a lot of soul searching, but we did a lot of research, too,” Scott says about going to Minnesota. “When we first went up there, we felt welcome. They answered all of our questions. And with [Will’s lead BMT physician] Dr. Troy Lund, we felt a connection. The doctors, the nurse coordinators, the entire staff, including the social workers—they really made us feel at home.”
It also helped to know that doctors at the University of Minnesota performed the world’s first successful bone marrow transplant in 1968, almost 50 years before Will’s treatment. And they have continued to make advances in the field since, thanks to their deep knowledge of the technique, a bit of ingenuity, and continued support from benefactors such as the Killebrew-Thompson Memorial Golf Tournament.
Will was in remission after his BMT for a year before the cancer came back again. Then he had a second transplant—and relapsed six months later.
But this cascade of bad news couldn’t rattle the Reinarts beyond hope.
“Every time something happened, Dr. Lund would say, ‘We’re going to get the team together, and we’re going to figure this out. We can treat this,’” Susan says. “So that gave us confidence moving forward.”
Lund and his colleagues approached the Reinarts about a brand-new therapy that was still in clinical trials. It was called CAR T-cell therapy, and it was designed to redirect a patient’s own immune system to fight cancer. (CAR T-cell therapy has since been approved by the U.S. Food and Drug Administration.)
The new technique involves removing T-cells, a type of blood cell that fights infection, from Will’s blood; manipulating and supercharging the T-cells in the lab; and then giving them back to Will intravenously, where they’ll find and attack the leukemia cells.
The family was nervous at first, but they put their confidence in the Masonic Children’s Hospital team once again.
A brighter future
Will’s last cancer therapy was more than two years ago. The CAR T-cell therapy did its job, and the family is back in Cedar Falls figuring out what their “new normal” looks like.
Will suffered a stroke, which has limited the use of his left arm and leg, shortly before receiving his CAR T-cell therapy. But with determination and grit, he attends two intense physical therapy sessions per week, and he’ll be back at his high school full time in the fall to complete his senior year.
For someone who has already spent too much of his life in hospitals, somehow Will isn’t sick of them yet. He plans to pursue a career in the medical field.
“I’ve seen good and bad,” he says. “I feel like I can really relate to patients and understand what they’re going through.”