Toddler Lilah Smoot celebrates cancer-free Christmas after battling rare brain tumor

MADISON, N.C. — This Christmas Eve looks very different for the Smoot family.

After months of aggressive treatment for a rare brain cancer, 2-year-old Lilah Smoot’s most recent MRI and spinal fluid tests show no evidence of disease. Her parents say doctors confirmed earlier this month that there is no detectable cancer in her body.

“I feel like we got the best Christmas gift ever,” said her mother, Katelynn Smoot.

Lilah’s journey began in February, when she suffered a seizure while Katelynn Smoot was in labor with the family’s second child, William. Doctors found a mass in Lilah’s brain that was later diagnosed as atypical teratoid rhabdoid tumor, or AT/RT, a rare and aggressive form of brain cancer.

“It’s a stage four tumor, so it’s really aggressive,” Katelynn Smoot said. “There was a lot of uncertainty about what the next year was going to look like, or if she was even going to make it through treatment.”

Doctors moved quickly, beginning chemotherapy soon after diagnosis. Over the next nine months, Lilah underwent multiple rounds of chemotherapy, followed by high-dose chemotherapy with stem cell rescue and six weeks of proton radiation. Much of that time was spent in hospitals and away from home.

“There’s just a lot of living in the hospital, a lot of being away from family,” Katelynn Smoot said. “We’ve met so many families whose kids didn’t even make it this far.”

After completing treatment, doctors waited several weeks before ordering follow-up scans to determine how Lilah’s cancer responded. Lilah’s MRI and spinal fluid results came back clear on Dec. 17. Katelynn Smoot said doctors walked the family through the images at the hospital before the official results appeared in their online medical chart.

“As soon as I got that notification, everything was perfect,” she said. “There’s no detectable cancer at all in this little girl’s body.”

Lilah’s story drew national attention earlier this fall after videos posted by her mother went viral on social media. One video showing Lilah dancing to Taylor Swift’s music reached millions and prompted an outpouring of support.

In October, Swift donated $100,000 to Lilah’s GoFundMe, writing, “Sending a hug to my friend, Lilah.” Donations from around the world followed, many in increments of $13, a number associated with the singer.

The financial support allowed both parents to step away from work and remain by Lilah’s side throughout treatment.

Before the viral moment, the family said support from their local community in Madison had already been strong, with neighbors, businesses and strangers rallying around them.

Now, doctors will continue to monitor Lilah closely. Because of the aggressive nature of AT/RT and its high relapse rate, she will undergo MRI scans every three months.

“There’s really not a lot you can do during the waiting period,” said her father, Tyler Smoot. “Right now, she’s cancer-free, and that’s amazing. And now we just go back to living a normal life and waiting on the next scan.”

Katelynn Smoot said the family has done everything possible to reach this point.

“We did everything we could to keep this girl cancer-free,” she said. “So, we just hope and pray that it stays that way.”

For now, Lilah is back home, full of energy and embracing life as a toddler again. Her parents say finishing treatment revealed just how much she has bounced back.

“Now that we’re done with chemo, we’re like, oh, this is what it’s like to have a toddler,” Katelynn Smoot said. “She has so much more energy.”

As the family heads into Christmas, Lilah’s focus remains simple.

“I want to see Santa more,” she said.