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.
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.
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.
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.
