Oakley’s Story: Strength Through Infant Leukemia

A Rare Diagnosis, a Brave Beginning

When Kayla gave birth to her daughter, Oakley, on December 30, 2024, she expected a joyful new beginning. But within minutes, it was clear something was wrong. Oakley wasn’t crying, struggled to breathe and was covered with a mysterious rash.

Doctors quickly discovered her white blood cell count was dangerously high. When a snowstorm prevented a transfer to Children’s Nebraska, nurses manually performed an emergency transfusion for three and a half hours to keep Oakley stable. Then, at just one day old, she was airlifted to Children’s, where her parents learned Oakley had congenital acute myeloid leukemia (AML), a cancer so rare it affects only one in five million births.

As the only pediatric hospital in the region with the advanced expertise and therapies required to treat rare and complex childhood cancers, Children’s Nebraska was uniquely equipped to care for Oakley. For Oakley’s family, it also meant compassionate, family-centered support through every step of their journey.

Facing Infant Leukemia

At only 2 days old, Oakley began chemotherapy. Over the next seven months, she received multiple rounds of treatment, surgery to remove a mass near her bladder and countless other procedures.

Oakley was the first patient at Children’s Nebraska to try red light therapy for mouth sores caused by chemotherapy. This new treatment helped her avoid stronger pain medicine like morphine. Her care team monitored her closely for other risks, including:

• Central nervous system (CNS) involvement, which develops when leukemia cells spread to the fluid around the brain and spinal cord and requires additional targeted treatment.

• Neutropenia, which can leave children especially vulnerable to infections and make even a minor cold or cut life-threatening.

“She was so tiny, and yet she fought with everything she had,” Kayla recalls.

Compassion Every Step of the Way

Through each challenge – including a shrinking liver that revealed another mass, complications like intestinal air bubbles and the discovery of a congenital heart defect – Oakley’s family leaned on Children's nurses who had become their lifeline.

“They explained things when I didn’t know what questions to ask,” Kayla says. “They held Oakley when we couldn’t be there. They even played Taylor Swift at night when she was upset. She became known around the hospital as Miss Oakley – everyone loved her.”

Compassionate, family-centered care is at the heart of every journey at Children’s Nebraska. Nurses, providers and team members walk alongside families, supporting them through even the most uncertain circumstances.

A Celebration of Hope

In July, after seven months in the hospital, Oakley’s care team lined the halls for her “clap out,” a joyful tradition marking the end of treatment. Kayla describes the moment as overwhelming: “It felt real – that we were finally going home.”

Now at eight months old, Oakley is in remission. She’s learning milestones she missed during treatment, like rolling over and sitting up, and continues monthly follow-ups with Children's expert team. Doctors say if she remains cancer-free through her first five years, her chances for a long, healthy life grow even stronger.

Stories like Oakley’s, and others like Maggie’s Journey with Leukemia, show that with the right care and support, children can overcome extraordinary health challenges.

Looking Ahead with Gratitude

For her parents, Oakley’s journey is one filled with both gratitude and hope. Gratitude for her care team and the community that rallied around her family – and hope for Oakley's future.

“Every step forward felt like two steps back,” Kayla says. “But Oakley never stopped fighting. She is truly one in five million.”

Oakley’s story shows how Children’s Nebraska provides advanced, specialized care for even the rarest and most complex pediatric cancers. Innovative treatments, like pioneering therapies for side effects, give children better outcomes and quality of life. With Children's expert Hematology and Oncology teams by their side, families can discover renewed strength in moments of greatest doubt.

Learn more about pediatric Hematology and Oncology care at Children’s Nebraska.