DeKALB – Joey Siwe is an avid video gamer interested in video production as a junior at DeKalb High School. He is also about to get his stomach removed in order to stave off a genetic mutation causing the same rare form of stomach cancer that killed his older brother, Billy.
“I wouldn’t say I bawled my eyes out but I was definitely crying, mostly in shock,” Siwe, 17, said, recalling the moment he learned about his diagnosis in December. He was 13 when Billy died at age 20. “It was shock that it was this early. I thought I was going to have to deal with this when I was, like, hopefully, 23 or something.”
The Siwe-Feece clan’s cancer journey began in January of 2015, and mom, Julie Feece, wants to share it in the hopes that it may prevent others from suffering with a cancer that’s as undetectable as it is deadly. In 2015, Feece’s oldest son, Billy Siwe, 20, began feeling full after eating only a few bites. After months of losing weight and being shuffled around doctor’s offices who didn’t think to check a 20-year-old for cancer and instead diagnosed him with severe gastritis or pneumonia, he was rushed to urgent care in May of 2015 after trouble breathing. At Northwestern Medicine Kishwaukee Hospital, doctors found cancer in his bones. Three days later, he died.
Now, Joey’s been diagnosed with signet ring cell adenocarcinoma, cancerous spots in his stomach which could be deadly if they moved into the lining as they did with Billy.
“I just keep telling everybody [Joey] just seems to be taking it all in stride,” Julie said, sitting in her kitchen next to Joey, who wore a #SiweStrong t-shirt memorializing her son.
Billy went into cardiac arrest and died during a procedure to biopsy his lungs. Joey was the only one in the family not at the hospital that day.
“The coroner came back with the report that said it was stomach cancer and that he had not seen a stomach like that in his 30 years,” Feece said.
Working through grief, Feece researched stomach cancer and learned of the CDH1 gene, a genetic mutation that makes men 70% more likely to develop stomach cancer in their lives, and women 50% more likely. She decided to test her three other children from her first marriage for the gene, and Joey was confirmed to have it.
He was 13 at the time his mom and dad, Dean Feece – Julie’s second husband after her first, Bill Siwe, passed away in 2003 from a heart attack, age 44 – sat him down and told him he had the CDH1 gene.
“I felt a little awkward about the whole thing,” Siwe said. “I didn’t really know what to think.”
Feece said the gene was likely passed down paternally by Bill Siwe, and she likes to think Billy’s death is what’s saving Joey’s life.
“Here, my 20-year-old son had stage four stomach cancer and they couldn’t find it,” Feece said. “The majority of people who had this mutation opt to have their stomachs removed, and it’s the recommendation of doctors because the risk is so high.”
Since Joey’s 2015 gene mutation discovery, he’s undergone annual endoscopes to detect stomach cancer if and when it occurs. Feece thought her youngest son would make it through high school without worrying about the procedure. That all changed in December.
“Joey can feel anything he wants to,” Julie said. “He has a right to be pissed off and sad, but I think he also understands that this is what we have to do. But we have a positive outcome so we just have to trust in that and have faith and have lots of support.”
He’ll undergo surgery with a team of doctors led by surgeon Kevin Roggins of UChicago Medicine. It’s a six-hour robotic surgery where doctors will remove his entire stomach laparoscopically, portions of his esophagus and small intestine, and then directly connect his esophagus to his intestine.
Siwe’s got a long and arduous recovery ahead of him. Without his stomach, he’ll have to relearn how to eat, sleep at a 30-degree angle to help keep the bile down and change his diet drastically so he isn’t consuming things such as sugar that are harder to break down.
Feece set up a Siwe Strong Facebook page to keep people apprised Joey’s journey, and others put together a GoFundMe to help offset medical costs.
She said because Joey’s cancer was caught early, their climb may not be as mountainous as Billy’s was.
“We’ve got a big hill, right?” Feece said, wrapping her arm around Joey’s shoulder. “We’ve got this hill we have to climb over. But we will. And when we get on the other side, it’s gonna be okay. But we still have to climb this stupid, big hill.”
Source: The Daily Chronicle