Jacob Ramirez was healthy as a young child, participating in all the fun stuff kids get to do: karate, T-ball, baseball. He wanted to be an artist one day, a police officer the next.
Now 11, he cannot walk or talk.
Jacob has a rare form cancer called DIPG-diffuse intrinsic pontine glioma. It’s a particularly aggressive form of pediatric brain cancer, and the median survival time is nine months. There with no known cure.
“We’re fighting for his life right now,” said his mother, Tammi Faultersack Ramirez.
One of four children, Jacob is the youngest. He got sick Dec. 14, 2016. Tammi remembers it well because it was just before Christmas.
“Everything was fine. Then, like a week before that date, he was dizzy, acting woozy,” she said. “On the 13th when he woke up, he said, ‘Mom, I feel really weird.’ So I put him the car and took him to the emergency room.”
At MountainView Hospital, he had a CT scan and his blood was tested. Nothing showed up as unusual. He was transferred to Sunrise Hospital and Medical Center, where an MRI was done. It showed a tumor in Jacob’s brain stem.
The doctors didn’t sugarcoat the news.
“They said most kids don’t survive, that only 5 percent survive,” Tammi said. “It’s a mom’s worst nightmare.”
She and her husband, Angel, took him to St. Jude Children’s Research Hospital in Memphis, Tennessee. There, Jacob underwent 30 rounds of treatment. He was there for seven months. There was hope; the tumor was shrinking. But then, just as suddenly as it had appeared, it resumed growing. The family was desperate to find something, anything, to battle it.
The answer was in Monterrey, Mexico, about a three-hour flight from Las Vegas. There, Jacob gets intra-arterial chemo. The family has been told the treatment is effective and pointed to similar cases where the treated tumor has been shrunk.
“But it’s very expensive, $13,000 each treatment, and that’s without flights,” Tammi said. “There’s immunotherapy offered, too, but I can’t afford that. That’s $15,000, all by itself. … Here in the U.S., they don’t want to do this kind of treatment because it’s not FDA-approved. So, it’s basically, they’re not even fighting for these kids.”
Third Thursday organizers give the event’s raffle proceeds to a worthy cause each month. Erica Lowndes, regional property manager for Village Square, said one recipient who stands out is Jacob. Employees at Avery’s Coffee, a vendor at the center, told organizers about him. Lowndes has a son who is 8 and can relate. She met the family members at the event and has been trying to help them by setting up their social media pages.
Third Thursday’s latest raffle raised $1,700 for Jacob’s family.
“I wish we could give away more, but we’re a small, local center with mom-and-pop shops,” Lowndes said.
The Ramirezes said it was a godsend.
“That $1,700 is that much closer,” Tammi said of the Third Thursday donation. “But it’s so hard. The house is stressful. I can’t work; my other kids are suffering.”
Tammi’s Facebook page shows a video of her husband talking about how his son’s illness is affecting the family. It got more and more hits and eventually brought in about $25,000. That money paid for Jacob’s first two treatments in Mexico.
Both parents had to leave their jobs to tend to Jacob and now have no health insurance.
“I no longer live the American dream,” Tammi said. “I live the American nightmare.”
Contact Jan Hogan at firstname.lastname@example.org or 702-387-2949.
It is a rare type of tumor that grows in the brain stem, just above the neck. That area of the stem controls one’s heart rate and breathing, and managing the nerves and muscles for seeing, hearing, speech and eating.
St. Jude Children’s Research Hospital