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A story of “Will Power”—Will fights leukemia with the help of CAR T-cell therapy

Diagnosed with leukemia at age 9, Will Reinart endured chemotherapy, a blood and marrow transplant and three relapses before an innovative new treatment called CAR T-cell therapy changed everything.
Will’s leukemia returned three times. Running out of treatment options, he participated in a clinical trial for CAR T-cell therapy at University of Minnesota Masonic Children’s Hospital.

Susan Reinart, her husband Scott and their three sons were preparing for a family vacation. One of their 9-year-old twin boys, Will, hadn’t been feeling well, so the family visited an urgent care clinic before they left on their trip.

“We thought it was a cold or a little virus,” Susan Reinart recalled. “We did not expect anything like leukemia.”

But Will did have leukemia, a type of cancer that affects the tissues that produce blood cells, including bone marrow and the lymphatic system, both of which are crucial parts of the body’s immune system. There are several types of leukemia, some of which are more common in children.

After his diagnosis in 2009, Will was initially treated with chemotherapy. “For all leukemia, the cure rate is 90 percent, so we were very confident that this was going to work,” Susan said. Following three years of chemotherapy, Will’s cancer went into remission for a year. At his annual follow-up appointment in 2013, however, the family was devastated to learn that the cancer had returned.

Seeking other options

Will’s oncologist recommended a blood and marrow transplant (BMT)—sometimes called a hematopoietic cell transplant—for Will, which would remove the cancerous cells in Will’s bone marrow and replace them with healthy donor cells. Over time, those healthy cells would create a new immune system for Will and hopefully eliminate his cancer. The oncologist suggested that Will and his family seek care through the University of Minnesota Masonic Children’s Hospital’s renowned blood and marrow transplant program.

This year, the University of Minnesota celebrates the 50th anniversary of the world’s first successful matched, related donor bone marrow transplant—which was performed in 1968 at University of Minnesota Medical Center by Robert Good, MD. Since then, the institution has performed nearly 8,000 blood and marrow transplants for the treatment of various blood cancers.

Learn more about the pediatric blood and marrow transplant program at University of Minnesota Masonic Children’s Hospital.

The Reinart family followed their oncologist’s suggestion and traveled to University of Minnesota Masonic Children’s Hospital. There, they met with Pediatric Hematologist/Oncologist Troy Lund, MD, PhD, a BMT expert. Lund and members of the BMT team specialize in treating high-risk leukemia patients, including those whose cancer has returned.

“Some leukemias tend to recur, and it only takes one leukemia cell to come back and multiply again,” Lund said. “That means that if there are any leukemia cells left in the body after treatment, the disease can return.”

Will received a cord blood transplant, a type of BMT that uses donated blood collected from an umbilical cord. Cord blood transplants have a lower risk of graft-versus-host disease, and do not have to be as closely matched as a standard blood and marrow transplant.

Will endured his first transplant without any major complications. However, after just one year of remission, the leukemia came back again. Will returned to University of Minnesota Masonic Children’s Hospital for a second cord blood transplant. That time, Will’s cancer returned after only six months.

After three relapses, an innovative therapy offers hope

Lund told the Reinart family about a clinical trial for a new type of cellular therapy, called CAR T-cell therapy, that could help Will beat leukemia once and for all.

 “We all have a certain type of white blood cells, called T-cells, that can fight and attack leukemia. In some patients, however, these T-cells don’t work very well,” Lund said. “During CAR T-cell therapy, we collect some of the body’s T-cells from the patient’s blood. Then, we modify those T-cells so that they are more effective against leukemia. Finally, we infuse the modified cells into the patient’s body so that they can find the leftover leukemia cells and attack them.”

University of Minnesota Health is one of only 30 centers in the country to offer CAR T-cell therapy. Learn more about this innovative treatment.

The CAR T-cells can last in the body for 20 years and continue to attack any leukemia cells that develop, all with minimal side effects.

“We can’t say enough good about [CAR T-cell therapy],” said Susan Reinart. “I feel fortunate that Will was able to pave the way for other children, that they don’t have to go through all of the BMTs like he did and can go straight to CAR T.”

Will underwent CAR T-cell therapy in 2015. Since then, he has been in long-term remission. He is currently a senior in high school and plans to pursue a career in the medical field.

“I’ve been around doctors and hospitals for a long, long time, and I’ve seen good and bad. I feel like I can really relate to patients and understand what they’re going through,” he said.

In addition to the treatment Will received, the Reinarts appreciated the BMT program’s family-centered care approach.

“The doctors, the nurse coordinators, the entire staff including the social workers, they really made us feel at home,” said Scott Reinart, Will’s father. “Dr. Lund made himself available 24/7. He took as much time as we needed to address all of our questions through the entire journey."