Lilah

Lilah Grace is such a bright soul. She has the ability to connect with everyone she meets. She has always been a happy girl, and there were no indications of any underlying health issues.

On February 24th, 2025, Lilah's mother went into labor with her little brother. While her parents were at the hospital to welcome her baby brother into the world, Lilah experienced a seizure. She was rushed to the ER, where a CT scan revealed a mass in her brain. Before her transfer to a nearby children's hospital, the nurses took Lilah upstairs to see her mom and dad. She was the life of the party in that hospital room. brought life to the hospital room. Looking at her, you would have no idea she just had a seizure hours before.

An MRI confirmed the mass was a tumor, located on her right temple and approximately 3cm in diameter. Fortunately, the tumor was not causing pressure or swelling on her brain. On March 3rd, 2025, Lilah underwent successful brain surgery, resulting in the complete removal of the tumor. She handled surgery so well! The morning after surgery she was back to playing like her normal self. She went home three days after surgery. She was discharged three days later.

On March 10th, a week after surgery, the official diagnosis of ATRT was received. Lilah begin chemotherapy on March 21st. Her treatment plan includes two rounds of chemotherapy and three rounds of stem cell treatment with a higher dose of chemotherapy. Radiation is being considered for the future, following the completion of her stem cell treatment.

Lilah is remarkably strong, a feisty little girl who won’t take no for an answer. The future is uncertain, but it is clear that Lilah will put up a fight!

Update on Lilah's Journey for her 2nd birthday, August 2025:

Lilah's tumor has the MYC subtype, and she had a full tumor resection on March 3rd, 2025. She has now completed chemo and will be getting an MRI in the next few weeks to check on her tumor status. Lilah’s last MRI, which was in May just before high-dose chemo, showed two small persistent foci that may or may not be tumor regrowth. This next MRI will determine whether or not she will need a biopsy before radiation. Lilah will be getting six weeks of radiation, starting sometime in September or October. She is handling everything very well.

You can follow along with Lilah's's journey on Instagram here: instagram.com/standwithlilah