Father, daughters diagnosed with rare stomach cancer within months of each other
NEW ORLEANS (WVUE/ Gray News) - A father and his two daughters in Louisiana received the same diagnosis of a rare stomach cancer within months of each other.
Zoey Holley, 16, struggles to finish meals despite her appetite because she can only eat 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 Holley, told WVUE.
In September 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 Holly said.
When the pain only got worse the family took Zoey to gastroenterologist Dr. Lawrence Gensler.
“She had some vague symptoms of stomach pains and cramping. Nothing out of the ordinary,” Gensler said.
Routine tests all returned negative and upper endoscopy looked completely normal. Gensler however pushed for answers to Zoey’s mysterious pain 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 within her biopsy specimens. I remembered her and she was 15. And I said ‘Are you sure?’ 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.
Gensler called Heather Holley and let her know of her daughter’s diagnosis.
“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 graduate? am I going to see her get married?’ All that runs through your head,” Heather said.
Time was of the essence.
Gensler made some calls, and St. Jude Children’s Research Hospital in Memphis reached back to him in a short time.
“So at least on that phone call, I was able to give some hope that at least there is something to go for,” Gensler said. “I have a personal connection to St. Jude because my daughter was there and I truly believe it’s the greatest place.”
Years ago, Gensler walked the halls of St. Jude with his daughter, Catherine, who suffered from a rare brain tumor. Although Catherine lost her battle when she was 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 happened to see Zoey,” he said.
Zoey went to St. Jude immediately after her diagnosis, where she learned of the 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. So, I wasn’t scared for that part. Scared for surgery though,” Zoey said.
The surgeons removed her entire stomach and then attached 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 unfortunately, that wasn’t the end of the nightmare for the Holley family.
Since Zoey’s cancer is hereditary, it meant her parents and younger sister all needed to be tested for the CDH1 gene.
“I was numb, I didn’t know how to feel when that happened,” Heather Holley said.
While the test cleared Heather Holley, it found her husband Corey Holley 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 9 years old, had it too.
“I was more, I would say, more sad for Ava to have it. It didn’t really 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 Holley said.
Suddenly, Corey Holley’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 Holley said.
During his surgery, doctors made an alarming find. Corey Holley’s cancer had spread throughout his entire stomach.
“Mine was stage 3,” he said.
Like Zoey, Corey Holley suffered life-threatening complications during his recovery that kept him in the hospital for weeks.
Now, his body is a shell of its former self as he continues to recover and get stronger. He just finished up his chemo treatments.
Zoey is also 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 family’s focus now shifts to Ava and what could lie ahead. Gensler said 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 Holley said.
Gensler said 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 her that 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 Holley said.
The Holleys take Ava to St. Jude every six months for checkups. 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 shot she’s going to be ... in and out without complication,” Corey said.
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 kind of want to be like her, stay strong,” Ava said.
Heather admitted the last year has felt like a nightmare at times.
“I mean, I wish I could take it away from them because, it’s hard watching them going through it, it really is,” she said.
However, 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 said they’ll have to have frequent mammograms to check for cancer throughout their lives.
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