Like all good internships, Lauren Hacker’s summer stint in the lab of Dr. Soheil Meshinchi has been hands-on. She’s been busy pipetting DNA samples into tiny vials, working with exotic-sounding instruments like thermocycles and cranking out copies of genetic material.
The high school senior from Omaha, Nebraska, seems at home amidst the white coats and glass beakers. But while the Meshinchi Lab at Fred Hutchinson Cancer Research Center looks like a standard scientific setting, it’s not. It is one of the few places in the world trying to unlock the molecular mysteries of pediatric acute myeloid leukemia, primarily by studying tumor DNA donated by patients.
Patients who include Lauren.
“When I’m in the lab, I keep reminding myself that everyone here isn’t just studying stuff,” Lauren said. “The cells around me come from actual kids, in actual beds, going through it.”
Lauren — “Lolo” to her friends — went through it. Twice. She was first diagnosed with AML in 2012, when she was a fifth grader. She relapsed in eighth grade. So Lauren went back to the hospital, back to an isolation room where severely immunocompromised patients must stay.
She has spent nearly a year of her life in those rooms.
One of the few bright spots during her lengthy hospital stays was her care team. At night, her nurses would come in and have dance parties with her. Or they would sit on her bed and watch the latest episodes of "Grey’s Anatomy" or "Project Runway."
“They were like my family,” Lauren said.
She now wants to be a pediatric oncology nurse and take care of kids suffering from the same disease. But even as a high school student she’s already helping them. Lauren’s family started a nonprofit called Lolo’s Angels that raises money for pediatric AML research. It’s donated $65,000 to support the work of the physician-scientist who sequenced Lauren’s tumor DNA, the researcher she befriended and calls “a teddy bear.”
The researcher who is thrilled to have her as a summer intern.
“I love that Lolo can come here and see what we’re doing, so this work is more than just a vague concept,” said Meshinchi, a pediatric AML specialist at Fred Hutch. “She’s putting on lab gloves and amplifying genes that are critical to our understanding of how best to treat children with AML.”
The name for the Hacker family’s nonprofit was born one wintry day in Omaha during Lauren’s first stay in the hospital. A snowstorm had closed local schools. Her fifth-grade classmates pulled on boots, hats and gloves and gathered in a field across from Lauren’s hospital room.
As Lauren watched from a window, they plopped down and started making snow angels. A parent who was there wrote “Lolo’s Angels” in the snow.
When Lauren’s family decided to start a nonprofit, they knew they already had a name. They kicked off with their fundraising with an event in their backyard that raised $16,000.
“As a family, when we started looking into how underfunded pediatric AML research was, and how many kids were dying from it, we just decided we couldn’t waste any more time,” said LesLee Hacker, Lauren’s mom.
They soon heard about Meshinchi and his work identifying key differences between the molecular signatures of the disease in young and old patients. That work has upended the belief that AML therapies developed for the elderly will work for younger patients — as doctors have been doing for four decades.
Meshinchi and collaborators first characterized those vast genomic dissimilarities through an effort called TARGET AML, one of five pediatric/young adult cancer projects funded through the National Cancer Institute’s TARGET Initiative. (TARGET stands for Therapeutically Applicable Research to Generate Effective Treatments.) Now, under Meshinchi’s leadership, scientists around the world have been delving into the genomes of more than 2,000 young AML patients, searching for new ways to guide treatment. This latest, donor-funded effort, the largest of its kind, is called Target Pediatric AML. It’s now nearly complete, Meshinchi said.
“Pediatric AML is so rare,” he said. “Most therapies and discoveries are made in older adults, but they don’t provide useful information for younger patients. Patient cells are our most valuable source of learning.”
Which is why, in addition to money, the Hacker family donated something invaluable: Lauren’s cells. Meshinchi sequenced her tumor DNA and sent back a report. That report, with its promise of precision medicine, represents a hopeful future for pediatric AML patients.
But it’s bittersweet, too. If Lauren’s tumor DNA had been sequenced before she relapsed, her treatment would have been different. Doctors would have realized one of the chemotherapy drugs she took wasn’t going to be effective. That drug damaged Lauren’s heart, and she now takes cardiac medication.
“I feel like with pediatric AML, doctors just give patients the hammer,” Lauren said. “But they don’t actually know if it's going to work.”
Yet she’s still here. And the data underscored just how remarkable that is because it showed how aggressive her disease was.
“Every parent thinks their kid is a miracle when they survive AML,” LesLee said. “When you see the data that says your kid shouldn’t have survived, it’s even more amazing.”
Lauren has never been a fan of the spotlight. Not even when, in eighth grade, all the students in her school stood and clapped as she left and headed back to the hospital.
But she doesn’t shy away from what life has thrown at her. During that second bout with AML, her care team wanted her to wait until November to go back to school. Lauren was having none of it. Her mom asked if she wanted to get a wig for school, but it was too hot. So Lolo walked into her first day of high school, bald head held high.
Her mom still tears up thinking about the moment. As a biology teacher at the school, LesLee got a daily reminder of it every time she walked by the freshman class photo in the hall. It was taken that first day. Lauren’s face stood out from the front row, surrounded by students tan from their summer vacations.
“Every day when I walked by that picture, I was struck by just how brave she was,” LesLee said.
Now Lauren wants to help those kids who, like her, must be brave. She’ll get hands-on with them, just like her care team did. Like the nurse who braided her hair before it fell out. Lauren liked how it looked, but it was also a necessity. She needed her hair out of the way; she was throwing up constantly because of the chemo.
Lauren knows she’s been through hell. Twice. But there’s just one more hurdle she must clear before starting her nursing career.
“I have a huge fear of needles,” Lauren admitted. “During treatment, I just had to suck it up and deal. Now I don't want to be anywhere near them. But I'm working on that.”
Jake Siegel, a staff writer at Fred Hutchinson Cancer Research Center, has covered health topics at UW Medicine and technology at Microsoft. He has an M.A. from the Missouri School of Journalism. Reach him at firstname.lastname@example.org.
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