ATLANTA - On a shelf in her Commerce, Georgia, bedroom, Briley Lamon stores her Beads of Courage.
"I have, like, two bottles full of beads," Lamon says
She has been collecting them, each bead tied to a medical procedure or step in her story, for 12 years.
Born on Okinawa, in 2010, Briley was just hours hold, when Brigitte Lamon says her husband noticed something was not right with their baby.
"It looked like she had run a race," Lamon remembers. "It looked like she had been running. She was panting. So, he called in the nurse."
Briley was diagnosed with Tetralogy of Fallot, a combination of 4 congenital heart defects that affect the heart's ability to pump blood out of the heart and into the rest of her body.
Briley Lamon, 12, is photographed at the hospital next to an image of her enlarged heart. (Lamon Family photo)
At 4 months, she underwent an open-heart surgery to remove her faulty pulmonary valve.
The Lamons knew she would need another surgery down the road to replace the valve.
But Children's Healthcare of Atlanta's Dr. Fawwaz Shaw, a congenital cardiac surgeon and surgical director of the pediatric heart transplant program says Briley, like many kids with this heart issue, was able to have a typical, active childhood.
"They're able to go to school," Dr. Shaw says. "They're able to keep up with their peers and participate in all activities. But, as they grow older, the right side of the heart will start to dilate and start to get bigger in size."
By the age of 3, Briley's heart was getting larger.
By 7, they were considering that follow-up surgery, but Riley grew pale, and lethargic, and started spiking strange fevers.
Back at Children's Healthcare for a heart checkup, her parents learned the problem was not Briley's heart at all.
(Lamon Family photo)
SShe had Acute Lymphoblastic Leukemia (or ALL), a blood cancer.
Briley spent nearly a month at Children's Healthcare, undergoing aggressive chemotherapy.
"It's traumatic," Brigitte Lamon says. "I mean, to see your child decline from what they are when they walk in at diagnosis to what they are when they leave post-diagnosis, it looks like a completely different child."
Eventually, Briley transitioned to weekly then monthly chemo infusions.
"It was extremely tough," her mother says. "It was hard. The travel was hard. Going weekly was hard.
Briley spent 2 and half years in treatment, putting the active life she loved on hold.
"I was very weak, and I couldn't really do a lot of stuff," she says.
In December 2022, finished with her cancer treatment, Riley finally had her second open-heart surgery, a valve replacement.
(Lamon Family photo)
Dr. Shaw says Briley will likely not need surgery for at least a decade.
If she does need a new valve, he says, the one he put it will allow the team to place a new valve without requiring open-heart surgery.
Lamon's classmates don't know much about what she's been through.
"I try to explain to them like what it's like, but they just don't understand because they've never done it."
So Briley Lamon will her Beads of Courage tell her story.