Pediatric leukemia

Spunky little Ada battles leukemia

Ada riding a tricycle down a hallway in the American Family Children's Hospital.

You can’t blame Tami Swenson for being in denial when she first learned that her sweet, energetic 3-year-old daughter Ada was diagnosed with leukemia.

Sure, Ada complained about some pain in her knee and bruises to her shins, but, she thought, how did that turn into cancer?

“You have to repeat the tests! That can’t be my child,” Tami remembered thinking after Ada’s highly abnormal blood counts came back.

A scientist herself who is married to another (Joel), the Swensons knew all too well what lay ahead for their little girl and how the family’s life would be upended.

“Kids should never have to deal with the toxic side effects of chemotherapy, like hair loss and throwing up,” Tami said. “My background is in toxicology and Joel’s is in cell biology, so we were quite familiar with the makeup of these drugs.”

Even more unnerving, Ada’s disease didn’t fall into one of the usual two types of childhood leukemia.

“We classify leukemia based on certain markers that we see on the cancer cells,” said Dr. Margo Hoover-Regan, a UW Health Kids Cancer doctor. “Either you have acute lymphoblastic leukemia (ALL) or acute myeloid leukemia (AML). Ada’s cancer cells showed no markers of either type, which is why her disease is called acute undifferentiated leukemia, something we had not seen before.”

After consulting colleagues at other institutions, Hoover-Regan and her team chose to treat Ada with the same aggressive course of chemotherapy used for kids diagnosed with AML.

“Kids with AML always receive the most aggressive course of treatment, so erring on the side of caution, we followed that path to give her the best chance of long-term survival,” said Dr. Christian Capitini, another UW Health Kids Cancer physician who cared for Ada.

Treatment began on Mother’s Day

Ada’s treatment, which consisted of three multi-week cycles of chemotherapy at American Family Children’s Hospital, began on Mother’s Day 2022.

Lynae Meinholz, Ada’s primary nurse, says admitting a 3-year-old to the hospital can go one of several ways.

“She wasn’t scared at all,” Lynae said. “She was actually excited to be admitted. She has so much energy. We knew from the first night that the biggest struggle would be keeping Ada in her room.”

Before long, hospital staff found a tricycle that Ada couldn’t stop riding up and down the hallways of the childhood cancer unit.

“She would ride that trike all the time, even when she wasn’t feeling well,” Tami said. “Even a 104-degree fever wouldn’t stop her. One time she was riding and suddenly stopped for a minute to throw up, and then kept pedaling down the hall like nothing happened.”

UW Health's Child Life staff, who are trained to help kids cope with fears of being hospitalized, have a special place in their heart for children like Ada.

“She is so imaginative and creative in the way she plays,” said child life assistant Rachel Lodahl. “We loved it when she played ‘car wash’ by mixing shaving cream and water in a bucket to wash her toy cars. She always loved making a mess.”

“And then she’d come back from the playroom smelling like a man,” said child life assistant Heather Sheehan.

Bone marrow transplant gives Ada best long-term prognosis

Because leukemia is a blood cancer, doctors examined Ada’s bone marrow under the microscope after each cycle of chemotherapy and also performed more sensitive tests to see if very small amounts of leukemia, known as minimal residual disease, or MRD, remained.

Unfortunately, Ada still had MRD in her bone marrow after her first four-week cycle of chemotherapy, placing her in a higher risk group. This was the moment her doctors went to Plan B: A bone marrow transplant, also known as a stem cell transplant.

“We had already determined that Ada’s big brother, Oliver, was a complete bone marrow match just in case she would need a transplant,” said Dr. Capitini. “We might have watched and waited had there not been as good of a bone marrow match, but it made sense to transplant Ada knowing that her brother matched so well.”

Oliver, who was 7 years old at the time, couldn’t have been more thrilled to help his little sister out.

“He was so excited except when he had to get needle pokes,” Tami said. “We had to bribe him every time they needed to take his blood.”

Ada and Oliver’s big day — the day Oliver would donate bone marrow to his sister — came Sept. 13. Oliver was taken to an operating room, where Dr. Capitini extracted bone marrow from the back of his hip bones. Just a few hours later, Oliver’s marrow was infused into Ada’s bloodstream. That night, Oliver couldn’t go into Ada’s room, but smiled in wonder at her as he pressed his face against the window of his little sister’s room.

Ada, who also has a 1-year-old sister Ellie, turned 4 not long before the transplant, but with her body getting used to new bone marrow, Ada’s immune system resembles that of a newborn. To minimize the chance of infection, Ada had to isolate from non-family members for the next several months until she starts making healthy blood cells from the donated bone marrow.

Just 23 days after the transplant, Ada came home from the hospital. To see her now, you would never know everything she has been through.

Parents put their trust in Ada’s UW Health team

As scientifically knowledgeable as they are, Tami and Joel didn’t hesitate to put their trust in the UW Health Kids Cancer team.

“Sometimes we had to resist doing more research ourselves, but we trusted Ada’s team because they are the real experts,” Tami said.

Ada braved her intense course of treatment quite admirably. Children often get quite sick for a while after a bone marrow transplant, but Ada had minimal complications. She also loved her doctors, nurses and Child Life staff so much that she didn’t want to go home.

“She was treated like a queen at the children’s hospital,” Tami said. “She never thought of the hospital as a place for sick kids and didn’t even think of herself as a sick child. For her, it was mostly a fun place to hang out with her doctors, nurses and new friends. Now, we just hope the cancer stays away and she grows up healthy.”