Georgia girl's life inspires $20M gift by Peach Bowl to fund childhood cancer research
ATLANTA - Visiting the Aflac Cancer and Blood Disorders Center at Children's Healthcare of Atlanta at Scottish Rite, to have the IV medication in his backpack switched out, it is easy to see why neighbors of Nick Colley have nicknamed the 10-year-old "the mayor" of their cul-de-sac.
"Nick is a big personality," his mother, Melanie Colley, says. "I think God gave him that personality, so we were able to know, when that wasn't there, that something was off."
This summer, Nick wasn't being "Nick."
"I wasn't eating my favorite foods," Nick Colley says. "Like, I wasn't eating."
"He wasn't as energetic as he normally is," his mother says.
"I mean, I like staying up late and watching movies. And I would go to bed at like 6 p.m.," Nick Colley says.
10-year-old’s braves battle against blood cancer
One night in July, Nick spiked a high fever they could not bring down with Motrin.
"Then, he woke up in the middle of the night with excruciating leg pain, and he was unable to walk," his mother says.
That is when Melanie and Ben Colley decided to rush Nick to the emergency department at Children's Healthcare of Atlanta at Scottish Rite.
That is where, on July 18, Nick was diagnosed with acute lymphoblastic leukemia, or ALL, a type of blood cancer.
"It was a whirlwind," Melanie Colley remembers. "When you have leukemia you don't leave the hospital when you're diagnosed."
Two days later, through a port in his chest, Nick began chemotherapy.
However, when he had a severe allergic reaction to the high-dose methotrexate, the Colleys say they got a break.
Children's Healthcare of Atlanta offers hope in the fight against acute lymphoblastic leukemia
Nick's doctors had a backup plan.
They switched him to a targeted immunotherapy drug, blinatumomab, which is what he carries in his backpack.
The drug is approved by the Food and Drug Administration for adults but is still being studied in kids.
Unlike the chemo he was on, Nick Colley says, he has almost no side effects.
"I just feel like normal, like I did before I got diagnosed with leukemia. I feel, like, perfect," he says.
Because he can carry his IV medication in the backpack, Nick Colley is back in school, and the hair he lost to chemo is growing back in.
"It's better than all of the other medicines that I've had," Nick says.
Georgia parents reflect on daughter's fight against acute myeloid leukemia
About 30 miles away, in Buford, Benji and LeAnna Hollis know the world of childhood cancer.
In spring 2018, their oldest daughter, 6-year-old Anna Charles, who went by her nickname, "AC," was diagnosed with acute myeloid leukemia, or AML.
"When we loaded her up, and went down the Scottish Rite, and heard those words, 'Mom, dad, your child has cancer,' the whole world stopped," Benji Hollis says.
When AC Hollis was diagnosed, her father says, they did not have a clinical trial she could join.
So, she pushed through surgery, chemotherapy, paralysis, and a brief remission, before the cancer returned.
AC Hollis died just 5 months after her diagnosis with AML.
What is the Peach Bowl LegACy Fund?
As Benji, LeAnna, and their daughter, Everlee, mourned, Benji's boss, Gary Stokan, who is the CEO and president of the Chick-fil-A Peach Bowl, tried to find a way to help remember AC.
"We wanted to celebrate her life because she was full of life, and we wanted to remember her," Stokan says.
So, he convinced the Peach Bowl's board of directors to donate $20 million to Children's Healthcare of Atlanta to create the Peach Bowl "LegACy Fund" in memory of the young girl.
It is a hyper-focused fund, with all the money earmarked for pediatric cancer research, focusing on the most promising potential treatments and therapies.
"We want to get something to the end-zone," Stokan says. "We want to get something FDA-approved."
He says 12 pediatric cancer trials involving 37 children are being funded by the LegACy Fund, most of them at Children's Healthcare, as of December.
Children’s Healthcare of Atlanta launched hopeful AML treatment trial
This past spring, Children's launched a clinical trial for a new treatment for AML, the cancer that took AC Hollis' life.
The study, which is hoping to enroll 50 children, is being led by her former oncologist.
"The hope is basically to give a kid another day, another little month, another year, another life, maybe, if we can find some trials and cures that work," Stokan says.
Benji and LeAnna Hollis hope the research studies will give other families hope.
"I know it's a blessing to them," Benji Hollis says. "So, to know that AC's life impacted that. We know she's not coming back, but we know that her life is still having a major impact."
LeAnna Hollis says she can picture AC dancing on the hearth of their fireplace, so full of life.
"I know she's smiling down right now, just thankful that she's made a difference," her mother says.
"She was a blessing," Benji Hollis says. "God sent her to this world to make some changes, and mission accomplished."