Innovative Treatment Approach Gives Makenzie a Second Chance at Childhood

When you look at 12-year-old Makenzie, you see a spunky, energetic fifth grader who loves singing, dancing and all things Taylor Swift. What you may not see so readily is her strength and resilience.

According to her mother, Sheila, Makenzie was a typical baby. She was happy, healthy and easily took to breastfeeding. It wasn’t until she stopped breastfeeding at 14 months that things changed. 

“She started getting sick all the time,” said Sheila. “We thought it was typical kid stuff, [except she] was having a hard time recovering.” 

When Makenzie developed an infection in one of her arteries, she was admitted to the hospital—her first in what would be a long line of hospital stays. 

Following a rigorous course of medication, Makenzie returned home but quickly relapsed. That’s when doctors referred her to an immunologist who diagnosed Makenzie with DNA ligase IV, a rare immune deficiency. She was just 18 months old.

The First Diagnosis: DNA Ligase IV

DNA ligase IV is a genetic disorder, which means Makenzie had this condition at birth. It went undiagnosed because, in 2012, newborns weren’t routinely tested for immune deficiency disorders.  

People with this condition are deficient in both B and T cells. (B cells are the memory cells that help your body remember vaccines to fight off infections; T cells are the soldier cells that fight off infections.) Simply put, Makenzie was constantly sick because her body didn’t make the cells needed to fight off infections. 

To treat her disorder, Makenzie had chemotherapy and a stem cell transplant in March 2014 when she was only 2 years old. The transplant was a success despite Makenzie only having one functioning kidney (another condition she was born with). However, a year later, the family learned her stem cell donor was diagnosed with acute myeloid leukemia (AML) and there was an extremely high probability Makenzie would develop AML as well.

The Second Diagnosis: Acute Myeloid Leukemia

It wasn’t until Makenzie turned 5 that she started showing signs of developing the same bone marrow cancer as her stem cell donor. 

“At first, she became very pale and tired. She couldn’t walk up or down stairs, and she bruised easily,” remembered Sheila. “When she developed the flu and strep repeatedly and in quick succession, I knew something was very wrong.” 

The family was referred to a pediatric oncologist in South Bend, Indiana, where Makenzie received blood and platelet transfusions every four to seven days. Because of her rare immune disorder, the oncologist recommended the family get a second opinion at Cincinnati Children’s with Kasiani Myers, MD. 

“I remember thinking, because we’re in Northwest Indiana and we’re closer to a few other hospitals, why would she recommend Cincinnati Children’s to us? It’s four hours away,” said Sheila. 

Looking back, the family is glad she did. 

The Second Opinion: Cincinnati Children’s Provides Innovative Approach 

The Cincinnati Children’s world-renowned Cancer and Blood Diseases Institute is the No. 1 pediatric cancer program in the country, according to U.S. News & World Report, and Dr. Myers specializes in medically complex cases like Makenzie’s.

Having DNA ligase IV—and only one functioning kidney—meant Makenzie’s body wouldn’t be able to tolerate standard chemotherapy and radiation, the typical course of action for stem cell transplantation. Dr. Myers was willing to tailor Makenzie’s treatment to account for her unique conditions.

“We knew we needed a comprehensive, innovative approach to treat Makenzie,” said Dr. Myers. “And we knew we needed to get her here as quickly as possible.”

Within days, Dr. Myers developed a personalized treatment plan for Makenzie, and the Bone Marrow Transplant team secured a donor for her second stem cell transplant—something that typically takes weeks to schedule. 

Teamwork Makes the Dream Work

Makenzie was admitted to Cincinnati Children’s in May 2018, when she was 6 years old. Unfortunately, she had developed AML by then—which meant Dr. Myers needed to adjust her plans, and so did the family.

“We thought we’d only be there for a little over a month, but once we learned Makenzie’s AML had advanced, we were told to pack for six months,” recalled Sheila.

“It was horrible, seeing my child so sick,” added Erik, Makenzie’s dad. “The only good thing was Cincinnati Children’s. When we got there, it felt like home. And it wasn’t just because of the environment. It was the people—everyone on Makenzie’s care team was amazing.”

According to Dr. Myers, to help Makenzie, the first step was to reduce her leukemia cells enough to perform a second stem cell transplant. That required a multidisciplinary team of specialists, something Cincinnati Children’s is known for. 

“We needed to be inventive and find a cutting-edge therapy that was less toxic than the standard chemotherapy and radiation treatments,” explained Dr. Myers. “Our Pharmacy division pioneered what is typically an adult medication to a pediatric setting, tailoring it to Makenzie’s size and immune disorder. Our Nephrology division assisted to ensure we didn’t damage her one functioning kidney.”

Makenzie responded well to the personalized treatment and had her second stem cell transplant a few weeks later. Unfortunately, that second stem cell transplant failed, but hope wasn’t lost.

At Cincinnati Children’s, every family is a part of their child’s care team. When the search team determined Makenzie’s mom, Sheila, was a viable stem cell donor, Sheila agreed without hesitation.

“Obviously, I’m going to do anything I can for my child,” she said.   

A Second Chance at Life

Makenzie’s third stem cell transplant was successful, but she developed a 108-degree fever and nonstop vomiting.

“I felt all icky inside. I couldn’t leave my room,” Makenzie remembered. “It wasn’t good.”

Once her care team was able to diagnose a cortisol insufficiency and prescribe steroids, Makenzie started to recover.

Now, six years removed from her third transplant, Makenzie is still cancer-free. Because some of the original donor cells are still in her, she’s on regular maintenance care. The leukemia could come back, but right now, she’s doing great and living her best preteen life.

“Makenzie’s case is the perfect example of changing patient outcomes together,” said Dr. Myers. “Through innovation, personalization and teamwork, we were able to give Makenzie back her childhood, and that is the best reward there is.”

Her parents agree.

“Everything directed us to Cincinnati Children’s. It’s where she was supposed to be,” said Sheila.

“Cincinnati Children’s gave Makenzie another chance at life,” Erik added. “And we are forever grateful.”

(Published November 2024)