Father, two daughters diagnosed with rare stomach cancer within months of each other
NEW ORLEANS (WVUE) - A father and his two daughters in Louisiana received the same type of incredibly rare, and sometimes deadly, stomach cancer diagnosis within months of each other.
Zoey Holley, 16, is a typical teenager, except she struggles to finish meals despite her appetite.
“I basically eat all day,” Zoey said.
That’s because she can only eat very small portions at a time.
“She started with pains around her abdomen but it would always be around her menstrual cycle so we didn’t know what route to take,” Zoey’s mom, Heather, explains.
In September of 2020, the seemingly healthy and active teen was suddenly hunched over in pain.
“We rushed her to the emergency room. They told us ‘oh she has some gastritis. We’ll give her some meds for it, she’ll be ok,’” Heather said.
The pain only got worse, so the Holleys took their daughter to gastroenterologist Dr. Lawrence Gensler.
“She had some vague symptoms of stomach pains and cramping. Nothing out of the ordinary,” Gensler remembered.
Routine tests all returned negative. An upper endoscopy looked completely normal. So what caused Zoey’s mysterious pain? Gensler pushed for answers and found them in a biopsy of the lining of her stomach.
“I was shocked when the pathologist called me and said Zoey had signet rings inside of her biopsy specimens. I remembered [Zoey] and said, are you sure? She was 15. This is not something we’d see in young people like this,” Gensler said.
What they found was a rare hereditary stomach cancer called signet ring cell carcinoma or diffused gastric cancer.
“I decided to call Heather, Zoey’s mom on the phone, and first, apologize for calling her on the phone but also to tell her that her daughter had a rare form of stomach cancer,” Gensler explains.
“When you hear that your kid has cancer, the first thing you think of is ‘oh my gosh, is she going to make it, am I going to see her get married? Am I going to see her graduate?’ All that runs through your head,” Heather said.
Time was of the essence.
“Of course of all the calls I made, St. Jude is the only one who called me back very shortly. So at least on that phone call, I was able to give some hope that at least there is something to go for. I have a personal connection to St. Jude because my daughter was there and I truly believe it’s the greatest place,” Gensler commented.
Years ago, Gensler walked the halls of St. Jude, hand in hand with his daughter, Catherine, who suffered from a rare brain tumor. Although Catherine lost her battle when she was a teenager, right around Zoey’s age, he had faith for a different outcome this time.
“For people at the worst of times, there is hope. The experience for me personally at St. Jude was incredible and it’s like the stars kind of aligned that I was the gastroenterologist that sees Zoey,” Gensler said.
Whisked off to Memphis immediately after her diagnosis, Zoey soon learned doctors’ plan to remove her stomach.
“I wasn’t scared because I feel like they wouldn’t remove my stomach if I couldn’t live without it. I wasn’t scared for that part. Scared for surgery though,” Zoey said.
The grueling ordeal involved removing her entire stomach and then attaching her esophagus to the small intestine to allow her to eat and digest food.
The recovery from surgery was brutal and filled with complications. But that wasn’t the end of the nightmare for the Holley family.
The fact that Zoey’s cancer is hereditary meant her parents and younger sister all needed to test for the CDH1 gene.
“I was numb, I didn’t know how to feel when that happened,” Heather remembered.
While the test cleared Heather, it found her husband Corey carried the gene.
“Whenever we found out on my oldest daughter, I knew right then and there, this ain’t my place but I already knew I had it,” he said.
Zoey’s little sister, Ava, then nine years old, had it too.
“I was more, I would say more sad for Ava to have it. It didn’t affect me as much as me having it because I was always the one that was supposed to be strong for the kids so it was more that Ava would have to go through it,” Corey said.
Suddenly, Corey’s lifelong stomach problems all made sense.
“I’ve been to the doctor probably 100 times. Every time I went, it was half and half. They would tell me, oh you pulled a stomach muscle, oh you pulled a backstrap muscle and I was like it’s not a muscle it’s on the inside. So finally, I was like this is a waste of time, I’m not going no more,” Corey said.
In surgery, doctors made an alarming find. Corey’s cancer had spread throughout his entire stomach.
“Mine was stage 3,” he says.
Like Zoey, Corey suffered life-threatening complications, keeping him in the hospital for weeks. Today, his body is a shell of its former self. Corey is still recovering but getting stronger. He just finished up his chemo treatments. Zoey, too, is on the road to recovery. She’s getting used to her new normal, taking it in with the demeanor of a typical teenager.
“I try not to think about it,” Zoey said.
The Holleys’ focus now shifts to Ava and what could lie ahead. Dr. Gensler says she’s already got signet ring cells in her stomach.
“Whether or not that cell is going to fire off, we don’t know. But when it does it spreads like wildfire,” Heather says.
Gensler says it’s likely Ava will also need to have her stomach removed to prevent the cancer from spreading further.
“She’s scared. Like she sees it. I told Ava, like how I fought for Zoey and how I fought for your dad is how I’m going to fight for you. I’m always going to be there. I’m always going to be by your side. I’m never going to leave your side,” Heather said.
Heather and Corey take Ava to St. Jude every six months for check-ups. They hope they can wait until she’s in high school to put her through such a painful ordeal.
“I think the earlier stage we catch it, the better shots she’s going to have,” Corey says.
It will be life-changing, but Ava has her big sister to look to for guidance.
“When I see her, she stayed strong. So I kinda want to be like her, stay strong,” Ava said.
Heather admits this last year has felt like a nightmare at times.
“I mean, I wish I could take it away from them. It’s just hard watching them going through it, it really is,” she says.
But if there’s one thing the Holleys know, it’s that they will come out stronger because of this. It’s a test of their resolve and their faith. A test they know they will pass.
The CDH1 gene that Zoey and Ava carry also causes breast cancer. Their mom says they’ll have to have frequent mammograms to check for cancer throughout their lives.
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