Then & Now: Ashleigh’s Cancer Story
Meet Ashleigh
Family. Faith. Fortitude. Those three words can be used to summarize the life of 25-year-old Ashleigh, whose family and faith have given her the courage to make it through many trials and tribulations after a scary diagnosis.
Family
Born and raised in the college town of Warrensburg, Mo., home of the University of Central Missouri (UCM), Ashleigh’s life began like many others in a small town. Her parents, Adam and Tricia, are both professors at UCM, so Ashleigh and her 2 siblings, older brother Cameron and younger sister Raegan, spent a lot of time on campus, in the community and at their local church.
But at the age of 2, Ashleigh’s life took a drastic turn, and the family had to depend on their faith more than they’d ever had to before. Her parents realized something was wrong when their 2-year-old toddler wasn’t her usual happy self. Ashleigh was nauseous and weak, so her parents quickly sought medical attention. While her primary care physician was trying to come up with a diagnosis, Ashleigh’s condition worsened. Her doctor scheduled an outpatient MRI to be done at Children’s Mercy in the weeks to come, but Ashleigh came down with a virus. She became too weak to get up without vomiting. When Ashleigh couldn’t even hold a snack steadily in her hand, Tricia knew it was time for desperate measures.
She loaded Ashleigh up in their van early on a Monday morning, arrived at her doctor’s building before it opened, and waited in the parking lot to show the doctor how sick Ashleigh was. When the doctor arrived, she took one look at little Ashleigh and sent them straight to the Emergency Department at Children’s Mercy, calling ahead to let the hospital know they were on their way.
When Tricia, Ashleigh and Adam got to Children’s Mercy, the care team ordered an X-ray and CT scan. It didn’t look good. To confirm what they were seeing with absolute certainty, they also did an MRI. The family would quickly learn of a diagnosis they weren’t expecting.
“Around 2 days after I turned 2.5 years old, we went to Children’s Mercy, and they diagnosed me with a brain tumor,” Ashleigh recalled. “I remember I got there, they did some testing and diagnosed it that same day. The next day, I was in surgery to have a shunt placed.”
Because Ashleigh’s neurological control was still good after her initial testing, her doctors decided they could wait until the next day to do the surgery for shunt placement.
Faith
“The initial counsel we received centered on the hope that she would live at least until 5 years of age, but to prepare to lose her in 3 to 5 months,” recalled Tricia. “I can still remember sitting by her bedside with tears rolling down my face, surrendering our beautiful daughter to God, knowing that she was only ours to care for as parents, and that God loved Ashleigh much more than we did.”
Ashleigh’s diagnosis of a tectal glioma, a rare type of low-grade brain tumor, meant that surgeons couldn’t biopsy or remove the tumor because it was in such a critical part of the brain.
According to Karen Lewing, MD, Hematologist/Oncologist and Clinical Informaticist at Children’s Mercy, surgery is not usually recommended for patients like Ashleigh because the tectum is in a part of the midbrain that is responsible for sensory, vision and hearing processing. In many cases, the tumor will remain and not grow, but sometimes, the tumor can block spinal fluid from exiting the brain.
“That’s how Ashleigh presented,” said Dr. Lewing, who cared for Ashleigh during her time at Children’s Mercy. “The spinal fluid had built up in her brain and caused increased pressure, so she had to have a shunt put in to drain that fluid.”
Ashleigh suffered from hydrocephalus, a build-up of fluid on the brain, so a ventriculoperitoneal (VP) shunt was surgically placed to drain excess cerebrospinal fluid from Ashleigh’s brain ventricles into her abdominal cavity, where it could be absorbed by her body. Ashleigh then spent 2 to 3 days in recovery at Children’s Mercy and was discharged.
Fortitude
Over the next 2 years, Ashleigh had regular follow-up MRIs every 3 months to monitor for tumor activity. As time went on and the tumor stayed the same, her life expectancy projection changed and gave her family renewed hope. Now, their goal was to focus on boosting her immune system any way they could so she could live a long, healthy life.
But when Ashleigh was 4 years old, her MRI showed progression of the tumor, so her care team decided to place her on chemotherapy treatment. Every 6 weeks, she received 3 different oral chemo medications plus 2 doses of IV chemo through her port to keep the tumor at bay. Though this went on for a year, the family welcomed this option; they were willing to do whatever it took to make their daughter better.
Their persistence paid off: Ashleigh defied the odds and has been in remission ever since.
Just as she was about to transition her care to an adult facility, Ashleigh’s Children’s Mercy team found a very small cyst on her pituitary gland during a routine MRI, so they continued to monitor her here for another couple of years. Thankfully, by the following year, neither her tumor nor the cyst had changed at all, so she was then transitioned to an adult health care system. In 2024, her new neuro-oncologist did an MRI on her pituitary gland to find that the cyst had disappeared!
Forward
Today, at the age of 25, Ashleigh can reflect on her time at Children’s Mercy and her journey as a cancer survivor:
“I was so young. In the years since my diagnosis, I’ve had friends and strangers who hear my story ask me how much I remember. While I can recall select sights, sounds and feelings of the sickness I faced through treatment, my most vivid memories are of the community of friends and family that walked with me through it.
“Every day, I wake up thankful for Children’s Mercy and my incredible care team who championed me on, every step of the way. Most of all, as I’ve spent time reflecting on how they cared for me during this time of great trial, I have the utmost admiration for the pillars of strength my parents were then and continue to be now.”
While the last couple of years, and life in general, have continued to be a whirlwind for Ashleigh, it still hasn’t shaken her faith. As a survivor, she’s navigated college and graduate school (at UCM, of course!), cross-country moves, a hurricane and even a car fire, but through it all, she’s grateful to be living the healthy life her parents prayed for. Her wedding in August was a beautiful celebration of hope for her future.
Today, Ashleigh and her new husband, Kenny, both work for the same faith-based organization, which is committed to providing spiritual and physical aid to hurting people around the world.
Offering a few words of encouragement to any families facing cancer, Ashleigh said: “I hope that in hearing my story, you know that there is hope. You may not know the outcome of your family’s journey now, or why God allowed it to happen. However, I pray that you would find comfort in knowing that he knows what he’s doing, and he has a plan far greater than you can possibly imagine for your story.”