It was terrible news: little Ava Oeding, who’d had suspicious bumps on her face and a series of nagging fevers for over a year, was diagnosed with the very rare juvenile myelomonocytic leukemia (JMML) when she was just 2 years old.
“It was such a scary time,” said Ava’s mom, Stephanie Oeding. “I don’t think we realized then just how lucky we were to be at the U.”
Two years later, while her vibrant daughter bounced around their home in Becker, Minn., Stephanie Oeding took a moment to reflect on her daughter’s journey. She can’t but marvel at the number of care providers at University of Minnesota Masonic Children’s Hospital who worked together to help Ava back to health.
Ava and the Oeding family first met Pediatric Hematologist/Oncologist Lucie Turcotte, MD. Because of the rarity and complexity of Ava’s disease, the family ultimately worked with dozens of nurses, doctors, and other staff at the hospital and the Pediatric Specialty Care Journey Clinic.
“It’s found in only about 1 in 1.6 million children under the age of 5. We only see one or two cases of JMML here each year,” said Margaret MacMillan, MD, Ava’s pediatric blood and marrow transplant specialist.
The only potential cure for JMML is a bone marrow transplant, which requires a compatible donor. Luckily, Ava’s big brother, T.J., who was 5 when she was diagnosed, was a match.
In January 2015, Ava and Stephanie moved into the blood and marrow transplant unit at Masonic Children’s Hospital, leaving dad Andy and T.J. at home. To prepare for the transplant, Ava underwent chemotherapy for roughly one week. The chemo suppressed Ava’s immune system—a necessary step to ensure that Ava’s body would not reject her brother’s donor cells.
Twenty-one days after the procedure, when a blood test showed that Ava’s body was producing healthy white blood cells, the family celebrated together. Now, two years after that celebration, Ava’s chance of a relapse is small. The energetic little girl is on the road to becoming a “healthy, fabulous young lady,” MacMillan said.
MacMillan is motivated by Ava and her other patients to continuously improve pediatric cancer care.
“These little kids do not have time on their side. We can’t just wait for the next breakthrough to come along,” MacMillan said. “We’re constantly focused on research, on developing new clinical trials and improving the standard of care for every single child who comes through our doors.”
Ava’s mom, Stephanie, is grateful for the dedication of MacMillan and other members of the care team.“I truly don’t know how they do it every day,” said Stephanie Oeding of the extended care team who helped Ava before, during, and after her 41-day hospital stay. “They treated Ava like their own child. We thank the Lord we had these amazing people to help us.”