Lilli: A Princess in Action

Today on National Princess Day, we’re highlighting a real–life princess in action.

One day four-year-old Lilli went to bed peacefully and woke up the next morning seeing double with her left eye severely crossed. Her mother Courtney called the ophthalmologist right away and they said she probably just needed new glasses and scheduled an appointment for a few days later. In the meantime, Courtney followed up with Lilli’s pediatrician and they sent her in for an MRI.

The MRI showed she had an optic nerve glioma, a benign tumor that was located between her eyeball and brain. At first, her family did not know if it would need to be treated or kept on a watch-and-wait protocol. However, they later found out the tumor was growing quickly and Lilli would need chemotherapy to stop its growth. If left untreated, her tumor could cause blindness in her left eye.

When she began her year of weekly chemotherapy treatments in February 2019, Lilli chose to wear a yellow Belle costume from Beauty and the Beast to her first appointment. She was greeted with smiles and excitement.

For 52 weeks, Lilli’s princess dresses became her suit of armor, giving her the courage to face treatments and frequent trips to UPMC Children’s Hospital of Pittsburgh.

The night before each appointment, Lilli would spend time picking out the perfect dress to wear. She never repeated an outfit, which made every week a surprise for the hospital’s care team. Lilli’s dresses were her way to share “princess joy” with everyone, transforming a very tough situation into something that her family could look forward to.

“She looked forward to going to chemo which is crazy,” says Courtney. “Every Thursday night we would pick out a dress and when we would get ready for her appointment in the morning, she was excited to go because she couldn’t wait to show off her dress. She couldn’t wait to see what everybody would say. She would request the IV polls with flat bottoms so she could stand on them and ride around the hall. She wanted to do the princess wave, so it really turned into a positive experience for her.”

Through her bravery and compassion for other kids like her, Lilli inspired the formation of Costumes for Courage, which gifts costumes, ranging from princesses to superheroes, to children receiving treatment for cancer and other chronic illnesses. They hope that, just like it did for Lilli, a costume gives a child that extra bit of strength and courage when they need it most.

In addition, Lilli’s family found community within the Pediatric Brain Tumor Foundation and our annual Ride for Kids program. The ability to connect with other families who have walked a similar journey makes the annual motorcycle ride so special for the entire family, but especially Courtney who appreciates having a space to meet and talk with other parents.

“It’s nice to have this family of people who have gone through it, know your struggles, and can connect you with resources. People that I can reach out to and say, ‘Hey, I need some help here.’”

If you or a family you know are facing a pediatric brain tumor, you’re not alone. PBTF is here to help with resources and community support that address every family member’s needs. Contact us today at [email protected] and 800–253–6530 or visit curethekids.org/family-resources to learn more.