Superhero Prestun Seibel soldiers on

HORIZON WEST When Prestun Seibel was diagnosed with neuroblastoma at age 3, doctors told his parents he wouldn’t make it to his fourth birthday. 

Fast-forward four years later, and Prestun is a 7-year-old kindergarten student at Independence Elementary.

The Seibel family moved from Kansas to Horizon West six months ago to give Prestun a better chance at life — and to find better medical-care options. 

“He likes swimming, and the weather is better on his body from the chemotherapy,” said his mom, Tiffany Seibel-Howard. “His joints don’t ache as bad, and he’s made it clear that he doesn’t want to move back. He loves Disney, he’s a thrill seeker.”

DIAGNOSIS
When the Seibels lived in Kansas, Florida was a frequent vacation destination for the family. After a vacation in 2012 when Prestun was 3, one of the couple’s daughters asked why Prestun was limping.

They originally thought it was just because they’d been walking around the theme parks. But a few weeks later, teachers at his daycare called Tiffany and said he was screaming that his left leg hurt. She started watching him closely after that, knowing something wasn’t right.

“We knew when we went there (to the hospital) to figure out what was wrong with him, they’d just say it was growing pains or something,” she said. “They couldn’t figure it out there and began dismissing it basically, and then we took him to a kids’ hospital three-and-a-half hours away. It took me all the way to September to go through the doctors. They did X-rays, labs and then a bone biopsy. The initial thought before the biopsy was that there was a fracture, and then they saw the tumor on top of the bone.”

The diagnosis of Stage 4 neuroblastoma — an incurable form of childhood cancer — came in late September 2012, and Prestun underwent six cycles of chemotherapy, 14 cycles of radiation and nine cycles of antibodies before finishing treatment in May 2014.

He relapsed in a month later, when doctors found a dime-sized tumor in his brain, prompting emergency surgery. Prestun then received two cycles of radiation and antibodies, finishing treatment in June 2016 before doctors again found a small tumor on the back of his head last September. He underwent another surgery the day before his birthday Sept. 16. 

One of the toughest parts of it all for the Seibels is that Prestun’s main doctors have never been local: They are all at Memorial Sloan Kettering Cancer Center in New York City. 

“This unknown variable (of relapsing) resets our ‘scan-xiety,’” Matt Seibel said. “You have to do them (scans) every two to three months, and then we can space them further out. The best doctors for his disease, in our opinion, are in New York. Those guys are our team; they saved his life numerous times.”

KICKING NEUROBLASTOMA'S BUTT
In Kansas, Tiffany and Prestun were rarely ever home. And if they were, the commutes for his care were strenuous. They traveled four hours one way just to go to the clinic, get his labs done and see the doctor. It would turn into a 7:30 a.m. to 9 p.m. ordeal they would endure for four years, until the move to West Orange last year.

And although Prestun doesn’t look sick and is able to go to school, the possibility of the cancer coming back is always unnerving.

“It scares me being away from him eight hours a day,” Tiffany Seibel said. “He’s starting to make it full-time in school now. It’s hard to fundraise now, because he doesn’t look sick anymore. That’s good, but the bills don’t stop.”

Prestun and Tiffany were in New York in March for an emergency MRI and most recently made the trip back in the first week of April for routine scans. It’s their fifth trip to the city in six months.

Because the warm weather is easier on Prestun’s joints and overall health, Orlando was the best option for the family. But with Tiffany unable to work full-time because of the possibility of having to fly Prestun to New York, Matt Seibel’s business is taking a hit. Additionally, the couple’s two older daughters, ages 17 and 18, wanted to stay behind in Kansas at college or with family friends.

“You do what you’ve got to do; everything is now, now, now with Prestun,” Tiffany Seibel said. “Not next week, not next month, it’s now.”

But despite all he’s been through, Prestun’s sunny disposition rarely ever disappears. The happy-go-lucky boy loves swimming, kicking around a soccer ball and playing video games. 

“His doctor always said, ‘I don’t know how he’s so happy after all he’s been through,’” Tiffany Seibel said. “I think he’s just gotten so used to this. This has been his life since he was 3 years old, unfortunately. It’s not the normal childhood he should have. I was told from the get-go I’d have a year with him. I’m thankful for the fight, but at the same time, it’s tiring.”

Contact Danielle Hendrix at [email protected].