After an ‘Avalanche’ of a Diagnosis, Ellie Thrives on the Slopes

The O’Keefe family upholds a few special people as heroes. 

First and foremost is Ellie, their teenaged middle daughter.  

The second is Dr. Alicia Lenzen, or “Dr. Lish” to Ellie – the oncologist who saved her life.  

Ellie and Dr. Lish met when at just six years old, Ellie was diagnosed with an aggressive tumor near the brain’s optic nerves in 2018. The tumor, known as pilocytic astrocytoma, is often slow to grow, but its placement can cause significant complications.  

Fortunately, the team at Lurie Children’s are equipped to urgently handle cases like Ellie’s with expertise and compassion. Lurie Children's is ranked 7th in the nation in Neurology & Neurosurgery by U.S.News & World Report. 

“When we heard the diagnosis, we were in disbelief,” recalls Ellie’s dad, JJ. “What’s crazy is how quickly the avalanche starts. Next thing you know, you’re meeting with oncologists.”

In addition to world-class clinical care, the brain tumor program offers support and education for the whole family – a great comfort to JJ and Ellie's mom Samantha. “Luckily, Lurie Children’s had people to teach us and walk us through what we were about to endure as a family.”  

The team quickly formed a plan to ensure Ellie would thrive. She underwent neurosurgery with Dr. Tord Alden within a week of her diagnosis. The tumor wrapped around the major blood vessels of her brain, meaning parts of it could not be safely removed.

After healing and gaining strength in physical therapy, Ellie began an intensive chemotherapy protocol.

Unfortunately, it did not stop the tumor’s growth, and the team looked for a new way forward for Ellie. 

Ellie began a new treatment plan with Dr. Lish’s reassurance. Once a week, she visited the Ambulatory Infusion Center to receive a drug designed to stop the tumor’s growth. The MRI soon showed the results that Ellie and her family had been waiting for: The drug was working.

For the next year, Ellie continued with treatment, gradually gaining strength and stability. Due to the placement of the tumor, she had to adapt to the loss of her peripheral vision, working with physical, occupational and visual therapists to cope. In August 2019, Ellie rang the end-of-chemo bell surrounded by her family. 

Today, Ellie undergoes one MRI per year as part of the STAR program (Survivors Taking Action & Responsibility) at Lurie Children’s. She also works with a behavioral health provider she adores to process her treatment, build coping skills and practice self-empowerment.  

Away from the hospital, Ellie is preparing for high school in the fall, running and playing basketball. She loves being with her siblings, William and Tess, and all 60 of her cousins – and doesn’t wish to be treated any differently than them.  

Ellie’s determination recently led her to the ski slopes of Aspen, thanks to the Shining Stars Foundation, an adaptive ski program for children with cancer and other life-threatening conditions. She loved learning to master her new skills on the slopes and meeting other kids whose journeys resembled her own.  

“Watching her progress has been incredible,” JJ says. “She’s a pretty impressive kid.” 

About Lurie Children’s Brain Tumor Program

Lurie Children’s Brain Tumor Center offers highly specialized, state-of the-art care for children with brain tumors, the most common solid tumor diagnosed in children. The center is designed specifically to treat children with brain and central nervous system tumors. Lurie Children's is ranked 7th in the nation in Neurology & Neurosurgery by U.S.News & World Report.