Family donation will continue Aiden Bartley's fight and could save others – Butler Eagle

The parents of 11-year-old Aiden Bartley, who died from a rare form of pancreatic cancer in children, have donated his tumor to research in the hope that the disease will be studied and a cure found before another child or adult succumbs to the disease.

Aiden Bartley, who died Tuesday, Sept. 17, was 9 years old when he was diagnosed with metastatic pancreatic adenocarcinoma, said his mother, Megan Bartley.

“Never in my life did I think this would happen,” she said.

The disease historically occurs in adults, she said.

When Aiden first complained of an upset stomach in the fall of 2022, Bartley suspected he might have the flu. Then she wondered if the stomach pain could be related to anxiety or nervousness about starting school.

Knowing her son had suffered from acid reflux as a baby, she made an appointment with a gastrointestinal specialist. She said Aiden developed jaundice as a result.

“I’ve never seen anyone so yellow in my life,” Bartley said.

The doctor advised her to take Aiden to the emergency room.

Ten days later there was a diagnosis.

“They started by saying, 'Oh, it's liver failure,' then 'It's pancreatitis,' then acute pancreatitis, and finally 'Okay, it's cancer, but the treatable kind,'” she said. “Then they came to us at 10 p.m. and said, 'We've never seen anything like this before.'”

The doctors the Bartleys worked with said they had never seen a child diagnosed with this form of pancreatic cancer, Aiden's mother said.

Pittsburgh Children's Hospital was not equipped to perform the biopsy, she said.

Given Aiden's complex diagnosis, finding treatment was complicated. Bartley said the family traveled each week so Aiden could receive treatment at the Chan Soon-Shiong Institute for Medicine in California.

Bartley described her son as “a fighter” in the face of the aggressive disease.

“He fought hard,” she said.

“He was a fighter who persevered and took cancer with him,” she said. “(Cancer) does not define who he is or who he was.”

Bartley said she and her husband, Mike, made the “mutual decision” to donate Aiden’s tumor to the Cleveland Clinic Cancer Center.

“It was a very, very difficult decision,” Bartley said.

Even though it won't bring her son back, she said she and her husband hope their decision can make a difference for someone else.

“If a child – or adult – is ever diagnosed again, there may be a chance to find a cure beforehand,” she said.

Aiden is the brother of Jack (4) and Carmella (6), who filled his hospital room with drawings before their older sibling underwent surgery.

“We told them Aiden is no longer with us,” Bartley said.

“Jack will tell you – if you ask him where Aiden lives – he says, 'In my heart,'” she said.

“So nice and loving”

Aiden was “a normal kid,” Bartley said.

He played baseball and loved playing deck hockey like his father and uncle, she said, and started playing deck hockey when he was 3 years old.

“He played video games. He played with his friends. He went to school,” Bartley said. “He was an excellent student. He loved being with his cats.”

“He was full of life and so kind and loving,” she said. “He definitely didn't deserve this. No one deserves this.”

“I never thought his life would end like this,” she said.

Bartley said Aiden's YouTube videos reflected his personality. He was witty and articulate, she said. Although he had a speech impediment when he was younger, he sometimes sounded like an adult.

Aiden can also be very blunt, his mother said.

“He told you what it was like,” she said. “When he was diagnosed, he told the nurse, 'You know what they call people who use that much blood? Murderers.'”

Before his death, Bartley said his two best friends visited him. She said she asked them to speak at the funeral.

“I don't think he ever knew he was going to die,” she said, noting that he suffered liver and kidney failure at the end of his life. “But last week in the intensive care unit, he looked at me and said, 'Mommy, I'm sick. Mommy, I'm sick.'”

“Just before he died, I held his hand in mine,” she said. “His face was in mine. I said, 'Buddy, it's OK. Mom and Dad are going to be OK. You can go.'”

Visits to the funeral home will be spread over two days, Bartley said, in light of the number of people she expects to come to pay their respects at the funeral home.

Since Aiden's diagnosis, the Butler community has rallied around the family and organized events to support them. A candlelight vigil organized by Riding for the Cure was held on Wednesday evening, Sept. 18. A farewell bike ride is planned for the funeral procession, she said.

Bartley said anyone wishing to donate to the family can do so on GoFundMe. The fundraiser is run by Connie Wetzel, Aiden's grandmother, and the page can be found by searching for “Aiden's Journey” on the website. Charitable donations in Aiden's memory can be sent to Jamie's Dream Team at 412-979-0470, she said.

“We're dealing with it day by day,” Bartley said Friday. “Yesterday I wrote his obituary. That was the hardest thing. How do you sum up in just one paragraph how much he meant not just to us, but to everyone?”

Bartley said she will remember her son just as she did the first time she held him when he was born. Aiden was a happy baby, she said; he is her first grandchild, her firstborn.

Aiden's obituary appears in the Sunday, September 22, edition of the Butler Eagle.

Aiden Bartley, 10, enjoys the Butler Farm Show on Wednesday, Aug. 9, 2023, at the Butler Farm Show. Aiden died Tuesday, Sept. 17, from a very rare and aggressive form of cancer. Butler Eagle file photo

In support, bracelets were made for Aiden Bartley at his home in Butler on Saturday, December 10, 2022. Aiden died on Tuesday, September 17 from a very rare and aggressive form of cancer. Butler Eagle File Photo

Justin Guido

Aiden Bartley holds a book full of signatures from McQuiston Elementary School students at his home in Butler on Saturday, Dec. 10, 2022. Aiden died Tuesday, Sept. 17, from a very rare and aggressive form of cancer. Butler Eagle File Photo

Justin Guido