Lili: Using Her Story to Spread Awareness for Pediatric Brain Tumors

Lili was an active, healthy child who was involved in many sports and other activities growing up. She was often called the “mayor of her school” in Georgia because she was friends with everybody, and everyone knew her.

Her life changed on September 10, 2019, when she suddenly had a seizure at school. She never had one before, so her parents Mike and Erin took her to the emergency room to find the cause of her sudden seizure.

A CT scan showed there was a mass or a lesion on her brain, but doctors could not get a clear look. After an MRI, a neurosurgeon told the family that it looked like a tumor and they needed to do a biopsy to find out more details. After a few weeks and two biopsies, it was confirmed Lili had grade three anaplastic astrocytoma.

At that time, doctors thought surgery would be too risky. Lili had 30 treatments of proton radiation that killed most of the tumor but left a lot of necrotic tissue that sat in her brain and caused swelling and migraines.

“She had to be in the dark and regular painkillers didn’t work. It’s just terrible. So we kept asking if we could at least go in there and get the dead stuff out and give her some extra area to swell into so she’s not in awful pain. It was too risky, and she was on steroids for forever. She got little stretch marks on her arms because she gained a lot of weight from the steroids and Cushing syndrome,” said Erin.

Since there is no reliable standard of care for pediatric brain tumor patients, Lili’s parents had to do their own research to find additional treatment options.

They discovered a study in New York for an experimental treatment targeting a specific protein found in glioblastoma tumors. It showed positive results in adults, but children were not included in the trial. Her parents petitioned the FDA, and Lili became the first child to receive this treatment through a compassionate care exemption. Lili’s parents also met another patient family in a Facebook support group that connected them with a neurosurgeon in Texas who did a debulking surgery to remove more of the tumor.

Lili found the strength to endure her journey through her friends and family. Although she was not able to see loved ones in person often due to the COVID-19 pandemic, she loved to use her iPad to connect with others. She constantly video chatted with people like her aunt Mickey who kept her company every morning.

When Lili’s tumor started to progress, she had to stop the clinical trial in New York. Her family tried two more trials, but progression remained aggressive. On Mother’s Day of this year, Lili passed away after a two-and-a-half-year fight.

“We feel that if people are put here for a reason, then her reason was to help bring awareness to pediatric brain tumors, and help advance the effort towards finding a cure,” shared her father Mike. “Our Warrior Princess fought with everything she had and turned her diagnosis into a mission to live, laugh, and love the things that were the most important to her. Sharing her battle with the world and raising awareness in the fight against pediatric brain tumors was certainly one of them.”

Although her family’s hearts are filled with sorrow, they are also filled with warmth knowing that her journey will give hope to other children in her situation. A consortium of 20 children’s hospitals will now receive and be able to treat their pediatric brain tumor patients with the experimental immunotherapy that Lili paved the way to get approved.

The Pediatric Brain Tumor Foundation will continue to spread awareness for families like Lili’s, and you can join us in our fight. Sign up to learn more about how you can advocate for better treatment options: http://www.curethekids.org/stay-connected.