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Colin Seaman is the boy with the Harry Potter cells

In spring of 2021, the Lyons-Seaman family was preparing to face their worst nightmare for a second time. Their eight-year-old son’s leukemia had relapsed after two years in remission.

“Colin relapsing just felt like a nightmare because he had such a hard course the first time around,” said Dr. Allison Lyons, Colin’s mother and a primary care doctor at UVa Hospital.

Colin Seaman started experiencing fever and bone pain at just five years old. After a visit and some tests at the UVa Pediatrics Clinic in 2018, Seaman was diagnosed with Philadelphia positive acute lymphoblastic leukemia. He spent more than 120 days in the hospital between October 2018 and October 2020. Lyons said her son’s two years in treatment “weren’t easy at all.”

According to the National Institutes of Health, chemotherapy sends only 20% to 30% of children with Philadelphia chromosome-positive into remission. Colin’s diagnosis is rare and classified high-risk; fewer than 5% of pediatric patients with acute lymphoblastic leukemia have this.

Because of the rare nature of Colin’s diagnosis, his family and doctors had to enroll him in a hybrid location clinical trial at the UVa Hospital and the Children’s Hospital of Philadelphia. At the latter, he had to spend days at a time away from his father and younger sibling. He struggled with gastrointestinal bleeding and pancreatitis during treatment.

“Colin, through the original two years of chemotherapy, was in and out of the hospital and was so deconditioned,” Lyons said. “He was doing physical therapy all the time and at times couldn’t walk because he was so nauseous. He had to be tube fed and TPN, which is feeding through an IV. He was so incredibly sick.”

Colin’s leukemia went into remission in October 2020, after two years of consistent chemotherapy. Lyons says he was recovering well until his routine bloodwork “looked off” during a visit to UVa Hospital in June 2021. She was terrified by the idea of subjecting her son to the same harmful treatment that he had to endure during his first round of treatment.

UVa hospital pediatric oncologist Dr. Daniel Lee told Colin and his family that his leukemia had returned.

While developing a treatment plan, Lee introduced the family to a revolutionary treatment option for some patients with leukemia. Colin was a candidate for this new treatment, one that uses the body’s own T-cells, part of the body’s immune system, to fight the disease. The first therapy developed using this revolutionary technology was approved in 2017. Since then, five other therapies have been approved, all for cancers of the blood.

Dr. Lee helped Colin and his family feel comfortable while facing the nightmare of Colin’s relapse while assuring them about the science behind his new treatment.

“We were just so afraid that of what was going to happen during relapse treatment because we knew he was going to have to go through a bone marrow transplant,” Lyons said. “We were afraid for all of the chemotherapy he was going to have to go through to get ready for that. Dr. Lee decided that CAR T-cell therapy was the best way to get there.”

CAR T-cell therapy is a leukemia and lymphoma treatment that weaponizes T-cells, which are natural immune cells, to make them more effective cancer killers. T-cells are removed from a patient and sent to a lab to be transformed into cells with proteins on them known as chimeric antigen receptors, or CARs. These proteins recognize and bind to specific proteins, or antigens, on the surface of cancer cells.

Once the modified cells return from the lab, they are multiplied by the millions and infused into the patient’s bloodstream to find and attack the cancer. That’s when the superhero science kicks in, said Lee.

“When I talk to kids about what we’re doing, I find out who their favorite superhero is and tell them ‘we’re going to make a gazillion Superman cells and give them back to you so your Superman cells can go off and fight cancer,” Dr. Lee said. “The power in them is that, once we place them back into the patient, they expand exponentially, making copies. We establish this forward loop of superhero cells that are all going around doing one thing: killing off your cancer.”

In Colin’s case, his superhero is Harry Potter, so to Colin, new Harry Potter cells were coming to save the day.

CAR T-cell therapy is different from common treatments like immunotherapy or chemotherapy. One modified T-cell can kill up to 100,000 cancer cells with limited side effects. Rather than rounds of treatment as with chemotherapy, CAR T-cell therapy is a one-time treatment, which doctors monitor for just one month. This meant that Colin had to spend about 10 days in the hospital instead of 120 days.

Colin’s mother compares his responses to chemotherapy and CAR T-cell therapy as “night and day.”

During the clinical trial at UVa, Colin had to be hospitalized so his doctors could monitor any side effects from the treatment. Fever and neurological confusion are some common side effects of children in CAR T-cell therapy. Although Colin usually hates going to the hospital, his mother says that he made the most out of it by doing Pokémon Go walks in the hallway and taking laps around the hospital floor.

Although he was out of school for the year, he participated in lessons via Zoom and opened letters of encouragement from caring classmates.

“CAR T was a walk in the park for us compared to what he usually does at chemotherapy,” Lyons said. “It was our healthiest hospitalization ever. He was doing amazing and it made it so much easier for him to get the transplant because he was healthy going into it. Instead of being sick and nauseous and losing weight before the bone marrow transplant, he was basically healthy that whole summer.”

After years of being sick and immobilized by leukemia and treatment, Colin was excited about his own body fighting his cancer while he got to enjoy being a normal kid. By October 2021 Colin had received a successful bone marrow transplant along with the good news that his leukemia went into remission again.

Colin’s CAR T-cell therapy success story illustrates the significant improvement that the treatment has had on childhood cancer treatment. Dr. Lee leads the CAR T-cell therapy clinical trial at UVa Hospital. The treatment offers a 70% response rate, meaning the cancer shrinks or goes into remission, which is virtually “unheard of, especially in kids,” Lee says.

CAR T-cell therapy gives patients a lifelong preventative measure for keeping cancer in remission. Once the T-cells serve their cancer-fighting purpose, most of them die off, but the few remaining cells create a memory pool that can theoretically stay in the body and fight cancer for a lifetime, Lee said.

Because he began CAR T-cell therapy right before his third-grade school year began and was not allowed to return to school until his immune system recovered from the bone marrow transplant.

Today, Colin is a fourth-grader at Brownsville Elementary School. After two years of remote learning, two years in chemotherapy, one year out of school for CAR T-cell therapy and a bone marrow transplant and more than one year in remission, Colin is enjoying a traditional school year for the very first time.

“He’s so happy to be back in school,” Lyons said. “We’re really lucky because he’s still immunocompromised and he’s just starting to get all of his childhood immunizations again. CAR T and a transplant wipe out your [body’s] entire memory of any immunizations, so he’s had to get completely revaccinated. But Brownsville has a class of kids and parents who have volunteered to mask for him. That’s made him feel really safe and comfortable to go back to school.”

In Dec. 2022, Seaman’s parents and 11 other families settled a lawsuit that challenged Governor Youngkin’s executive order that allowed allowing masks to be optional for schoolchildren. The parents and the ACLU, who represented the families, argued that the order violates the Americans With Disabilities Act and other federal law. The parents won the right to require students and teachers to wear masks to protect young people from Covid.

“This settlement is a major step toward righting a wrong,” Colin’s father Chris Seaman said at the time.

Source: www.dailyprogress.com

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