Childhood Leukemia Survivor Shares Her Experience With ALL, Relapse and CAR-T

Hannah Koepsell was 11 years old when she was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood and bone marrow. Two years of chemotherapy followed, and in 2024, she rang the bell at Roswell Park Comprehensive Cancer Center.

Five months later, the leukemia returned.

Her father, Jason, understands her experience firsthand. He was treated for Hodgkin lymphoma at 17 and has been in remission for 22 years.

“Seeing my daughter go through it is awful,” he said. “It was awful, every bit of it.”

For Hannah and her family, childhood cancer has meant years of chemotherapy, long hospital stays and two relapses. Now in remission, Hannah and her father are sharing what those years looked like beyond the milestones people often see from the outside.

What does treatment for childhood leukemia look like?

“I had one game left, and I just wanted to finish softball,” she recalled.

Hannah's diagnosis arrived during softball season. Hannah had also done cheer for eight years and dance since she was 3, but both had to stop during treatment. She was homeschooled for weeks at a time, and being away from school also changed some of the friendships she had built there. Classmates sometimes treated her differently during treatment and even after she returned.

How do long hospital stays affect a child with leukemia and their siblings?

During Hannah's first 39-day hospital stay, hospital policy kept her younger brother, Jackson, who was 7 at the time, from visiting her room. Friends her age could not visit either. Only two older friends, both 13, met the hospital's age requirement.

When Hannah and Jackson were finally reunited, they barely left each other's side for a week.

Once the rules eased, Jackson visited every day. Hannah said simply having him in the room changed how she felt during long days in the hospital.

“We didn't even have to talk to each other. It was just better when he was in the same room,” she said. “When he was there, I was always up and around walking, and when he wasn't there, I wanted to be in my bed.”

Her longest hospital stay lasted 53 days. Fevers repeatedly sent her back to the hospital because low white blood cell counts made it harder for her body to fight infection. Each fever meant staying for at least four days while doctors monitored her and waited for her counts to recover.

What happens when childhood leukemia relapses?

Hannah's first relapse was discovered after what seemed like a routine checkup. Her family was already driving home when Roswell Park called and asked them to return for another round of bloodwork.

While waiting for the results, Hannah still went to her school dance. There, she pulled aside a friend who had also been through leukemia and shared what she already suspected. The confirmation came in the car afterward.

The family spent the rest of the night together in her parents' room before Hannah returned to the hospital for more than 40 days. During that stay, she experienced two seizures and was transferred to the intensive care unit twice.

Her younger brother, Jackson, was a 100% match and donated bone marrow for her transplant.

When the leukemia came back again last fall, Hannah received CAR-T cell therapy, which uses a patient's own immune cells that are modified to better recognize and attack cancer cells.

What does survivorship look like after CAR-T cell therapy?

Hannah no longer produces B cells, a type of white blood cell that helps the body make antibodies and fight infection. Because of this, she receives intravenous immunoglobulin (IVIG) infusions every eight weeks.Treatment did not end after remission.

She takes a tyrosine kinase inhibitor (TKI), a targeted therapy designed to block the genetic driver of her leukemia, for three weeks followed by one week off. Both treatments are expected to continue long term.

What do people misunderstand about childhood cancer?

Hannah's family runs a page called Hannah Strong, sells bracelets and holds charity events. But what people see online often represents the milestones rather than the hardest days in the hospital.

Hannah said that can leave people with the wrong idea about what life with childhood cancer actually looks like.

“People at school only see the good stuff,” she said. “You don't understand what actually happens. So don't assume everything is good.”

Her father, Jason, noted that families facing a new pediatric cancer diagnosis may look to pages like Hannah Strong for hope, so the family often keeps some of the hardest moments private.

His advice to other parents is to take the experience one day at a time, find something positive even on difficult days and understand that treatment can be a long process.

Jason has also seen how cancer treatment has changed since he went through it himself. Some of Hannah's early chemotherapy drugs were the same ones he received 22 years ago, but he said newer approaches can target cancer while reducing some of the effects on the rest of the body.

“The way that they can use less, so it doesn't affect you as much and you don't get as sick as you used to, that's a huge benefit,” he said.

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