Liliana Thompson: The Toddler Who Beat the Odds

Southern Research Insight 2018

Many parents look back with a certain level of affection on their child’s “terrible twos.” Anna Thompson wishes she could be so lucky—her daughter Lilianna’s twos were terrible, but not because of classic toddler behavior. Lilianna spent her twos in the hospital undergoing intensive treatment for acute myeloid leukemia.

Lilianna endured numerous rounds of chemo during her 16 months of treatment, including treatment with the anticancer drug fludarabine. Today, after a bone marrow transplant, Lilianna’s terrible twos are behind her, and she’s now a happy, healthy third-grader at a school in Chilton County, Alabama—seemingly miraculous after a very different life five years ago.

Terrible

It started on a family vacation with a persistent fever and a lack of appetite. Her family thought she had a virus, something she’d just get over as is so frequently the case with toddlers. But it didn’t break. A doctor at an urgent-care clinic there at the beach diagnosed her with strep throat, but with Lilianna in such discomfort, they returned home—home to her familiar house and home to her regular pediatrician.

It wasn’t strep. It was something that required testing and re-testing, and testing at a nearby hospital, until finally the truth was undeniable: Lilianna had acute myeloid leukemia, AML, which is a blood cancer that is difficult to treat and kills more than 10,000 people in the U.S. every year. “The pediatrician came in with tears in his eyes, and I knew something was wrong,” Mrs. Thompson said.

Resolute

Lilianna was admitted to Children’s Hospital in Birmingham that same day, and she would stay there for six weeks—six weeks of minor victories and great frustrations, and when she finally was able to leave the hospital, the cancer was still raging inside her. AML is aggressive, hard to treat and increasingly uncommon in children—the average age of an AML patient is 67. The first round of chemo slowed the rapidly-progressing disease but didn’t stop it. An attempt at a stem-cell transplant was rejected, and an attempt at a cord blood transplant taunted them with what looked like success until the AML returned.

“We would have gone to the ends of the earth to make Lilianna better,” said Mrs. Thompson. “And the treatment that saved her was just down the road.”

Lilianna’s doctors were baffled but resolute. “They said there was not much else they could do, but they were not giving up,” said Mrs. Thompson. “They said, ‘If you’re willing to keep going, we’ll keep going with you.’”

The Thompsons were willing to keep going, and the doctors kept their promise, despite more setbacks and frustrations. Another round of chemo was ordered for the now 3-year-old, and after she seemed to be in remission for a few months, she relapsed. And then there was a spark of hope: Lilianna’s doctors found a bone marrow match.

Unfortunately, that meant that treatment would have to get harder for Lilianna, not easier, as they prepared her for the transplant. The process necessary to stabilize her meant a still-stronger round of chemo and full-body radiation that left the toddler unwilling to eat, drink or even get out of bed. She relied on a feeding tube to eat and on her mother’s insistence to get up and get dressed.

But it worked.

“She’s thriving. She’s alive and well,” Mrs. Thompson said. “She’s an absolute miracle.”

Essential

In August, Mrs. Thompson and a thriving 9-year-old Lilianna made a special trip to Birmingham to visit the institution responsible for one of the drugs that helped save Lilianna’s life. Mrs. Thompson was surprised to learn that fludarabine, the drug that kept Lilianna in remission before the cord blood transplant, was developed in Birmingham at Southern Research.

Fludarabine was discovered by organic chemists John Montgomery and Kathleen Hewson in 1968, and it was approved by the FDA for medical use in 1991. Effective against chronic lymphocytic leukemia, lymphoma and AML as part of a combination therapy called the FLAG regimen, the drug is included on the World Health Organization’s Model List of Essential Medicines.

But in 2012, to the Thompsons, it was just one of the drugs that helped Lilianna stay on the road to recovery. And in 2018, the Thompsons were able to see the birthplace of that drug and talk with Rebecca Boohaker, Ph.D., a research scientist in Southern Research Drug Discovery who is conducting research into the disease that tried, and failed, to take Lilianna’s life. “I called my mom when we left and said, ‘Lilianna and I got to meet a real-life scientist,’” Mrs. Thompson said. “It’s just great that they are doing cancer research and helping to save lives.”

“It is very motivating, as a scientist, to see patients’ lives extended by therapies developed at Southern Research. A cancer diagnosis can be devastating, especially when the patient is a child,” Boohaker said. “Meeting with such a resilient and positive kid like Lilianna only underscores the importance of the work that we do here—constantly pursuing new therapeutic avenues for treatment of cancers in general, but particularly those that are rare and difficult to treat.”

“We would have gone to the ends of the earth to make Lilianna better,” said Mrs. Thompson. “And the treatment that saved her life was just down the road.”