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.
Children with brain cancer can’t wait another week, another day, another minute for your support. When you donate to the Pediatric Brain Tumor Foundation, you help fund life-changing research and provide families with the resources and support they need. Don’t let pediatric brain cancer steal another future.
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.
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
In June 2018, Valentina was diagnosed with a pediatric low-grade glioma with a BRAF mutation. At the time, she was only one year old. Surgery was not an option, so her family had two choices for treatment—traditional chemotherapy or an experimental treatment suitable for her type of mutation.
Combining her love for reading and desire to give back to help kids with brain tumors like her, Zoe created Books 4 Brains to raise money for pediatric brain cancer research. Join her upcoming Books 4 Brains read-a-thon and support the Pediatric Brain Tumor Foundation's research funding efforts.
The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.
Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.
