Bellefonte

Bellefonte family makes Christmas plans with Thon, urges giving back

Penn State student Marissa Marino makes a clay snowman with Four Diamonds child Noah Benner, 10, during the Penn State IFC Panhellenic Dance Marathon family carnival on Sunday, December, 6, 2015 at the Intramural Building.
Penn State student Marissa Marino makes a clay snowman with Four Diamonds child Noah Benner, 10, during the Penn State IFC Panhellenic Dance Marathon family carnival on Sunday, December, 6, 2015 at the Intramural Building. adrey@centredaily.com

Noah Benner’s feet slid under a Christmas tree without any presents.

There will be some Christmas morning — his mother Tiffany has been trying to even out gifts for the kids.

Noah, 10, of Bellefonte, lay next to his sister Sydney, 5, and hinted at a word she missed in crossword puzzle. The two siblings, the Benners’ only children, don’t feel like they have just each other. Neither do their parents.

They have a lot of big brothers and sisters. Most of them are from Penn State Lion Scouts, the organization that “adopted” Noah as one of its Four Diamonds and Penn State IFC/Panhellenic Dance Marathon children.

Hundreds of students support the family in Noah’s battle, one that spans three years and three surgeries to remove brain tumors.

He’s so down-to-earth, personable and normal that it’s easy to forget the things he’s gone through.

Amelia Drexel

The Benners also became close with Penn State’s football and gymnastics teams through the Friends of Jaclyn Foundation, which pairs children battling pediatric cancer with local high school and college sports teams in their communities. They keep in touch with players like Jesse James and hope to stay in touch with others like Anthony Zettel, who always made time for them after practices.

It is telling that the family spends much of its free time with their second family, in particular a few Penn State students they also practically adopted as their own. It took about a year to match up schedules with Vickie Maseda to visit her in Philadelphia in November.

“I asked them for their wish list, and they gave me a bunch of historical sites,” Maseda, who was a Lion Scout, said. “The kids really wanted to see the Liberty Bell, and Sydney loved the art museum. I took them to the Reading Terminal Market for some delicious food. I just love spending time with them.”

Noah and Sydney want to travel during the holiday break, too, so they’re making it happen.

They’ll stay with Penn State sophomore and Lion Scout Amelia Drexel for two days in New York City. She plans to give the family a tour with stops at American Girl for Sydney, the Lego Store for Noah and the Statue of Liberty.

The Benners will spend the next three days with Hailey Kantrow on Long Island, whom they met through Thon family relations. She graduated in 2014.

In between all of the talk about Christmas wish lists and to-dos on winter vacation, Noah made it a point to say what he really wants.

“I want to be a kid,” he said.

I just want to be a kid.

Noah Benner

He wants to watch “Star Wars” movies — he just saw latest one in theaters — and play Minecraft at the same time. He wants to learn how to hunt with his dad. He also wants to go to Penn State, volunteer for Thon and become a game developer.

But, maybe more than anything else, he doesn’t want to worry about the tumors that have changed his life before and could again.

“He’s such an amazing kid,” Drexel said. “He’s so down-to-earth, personable and normal that it’s easy to forget the things he’s gone through.”

Noah’s battle

Noah slept peacefully on a hospital bed.

Tiffany still remembers looking at him after she heard the news. He wore Adidas wind pants and a white shirt with a blue collar and yellow lettering. He was propped up in the bed and dozed off waiting to hear MRI results.

His parents were just feet away, their hearts broken by the news that something was wrong with their baby boy. Tiffany and her husband Craig stayed up that night crying, researching and wondering if they could save Noah after they learned he had a mass lodged in his brain.

They look back now and feel lucky.

“We were told if we had waited for a (neurologist) appointment for August of 2012 that Noah wouldn’t be here today,” Tiffany said.

They took him to Mount Nittany Medical Center four months earlier than the appointment, crediting Michael Talone, of Nittany Eye Associates, for his advice.

Noah failed an eye exam at school shortly after he got new glasses and went back to the eye doctor. Talone, they said, noticed his optic nerves were swollen and pushed forward. He sent the family home and called a neurologist.

“I can’t thank Dr. Talone enough,” Tiffany Benner said. “We were sitting down for dinner when he called and said to take Noah to Mount Nittany Medical Center for an MRI immediately. It was a few hours later, at about 11 p.m., when they told us they found a mass in Noah’s brain.”

An 8-by-4-by-4 centimeter tumor was discovered. The MRI scans showed that it pushed Noah’s brain to the left side of his head, causing symptoms such as migraines.

He understands he could die. He understands he’s lucky to be here. And at his age, he shouldn’t have to worry about that at all.

Tiffany Benner

Doctors, however, didn’t have a diagnosis.

“His life and our life just kind of flashed in my mind, and his first seven years just hit me in a few seconds,” Tiffany said. “The doctors here didn’t know what it was, so that made it tougher because if they don’t know I’m certainly not going to know. That was agonizing.”

Noah, who was diagnosed with choroid plexus papilloma at Penn State Hershey Medical Center, has had three successful surgeries since, one to remove the first tumor and the next two when more grew back. He has not missed more than three weeks of school after each operation, which doctors told them would leave adults laid up for months.

“He’s a resilient kid,” Craig said. “I don’t know how he does it.”

He has been tumor-free for about a year, but there are still excruciating moments.

Every time Noah has a headache, Tiffany’s world stops again.

She begins to look for signs. She watches to see if he loses his balance or if he begins to feel sick. She even gets that empty-pit-in-your-stomach feeling when Sydney’s head hurts.

“I can’t help but worry,” Tiffany said. “I just want to protect them.”

Noah, though he didn’t seem concerned about the first two tumors, understood the gravity of the condition when the third one was spotted.

He recalled crying when the doctor told the family the bad news last September. He had better results earlier this year.

“The doctor said all clear, and he let out this big sigh,” Tiffany said. “He smiled and fell back and said ‘Thank God.’ As he’s gotten older, he’s understood more. He understands he could die. He understands he’s lucky to be here. And at his age, he shouldn’t have to worry about that at all.”

He will have his next MRI in March.

Giving back

Kantrow’s first phone call was to her mom in New York.

The second was to Tiffany.

Something wasn’t right, and Kantrow needed help. Like she had done once before, she went to the hospital with the Benners. Only this time it was for her and not Noah.

In her time of need, Kantrow needed an appendectomy in the fall of 2014, she didn’t have to look any further than her Bellefonte family. Tiffany filled out her paperwork in the hospital, the whole family visited and then took her to their home for a week to recover.

And he said he would be my nurse. It’s the sweetest thing anyone’s ever said to me.

Hailey Kantrow

She also saw Noah mature a little bit that week.

“Noah came to me said and said ‘You know how you’re my nurse when I’m in the hospital,’ ” Kantrow said. “I thought about it and said, ‘Yeah.’ And he said he would be my nurse. It’s the sweetest thing anyone’s ever said to me.”

It was natural, even if the roles were reversed, for the Benners to support Kantrow. That’s what you do for family.

The Benners try give back with vigor.

“Tiffany and I always gave back a little,” Craig said. “Before anything happened with Noah we’d give back a little when someone was doing something, but I don’t think we thought about it too much.”

The need to give back struck Craig when Noah was recovering from his first surgery at Penn State Hershey. There were other kids in the hospital, he said, who were worse off compared with Noah.

“On the seventh floor of Penn State Hershey, all of these kids were together, and we were able to see the worst of the worst,” Craig said. “It made us appreciate what Noah has gone through and relatively be a normal kid. It made made us feel even more like we needed to pay it forward and give back as much as we can.”

They’ve spoken countless times in front of groups of Thon volunteers to tell Noah’s story. They launched a mini-Thon at Marion-Walker Elementary School. They also have fundraising drives like the ongoing one they started more than a year ago.

A white shirt with a gold ribbon, a symbol for childhood cancer, and the words “Noah Strong” was created for their efforts. Craig said he was surprised by the response, forcing them to order four shipments of the shirts.

Noah divvied up the proceeds among charities like Thon, Friends of Jaclyn Foundation and Make-A-Wish.

“I look at our family, and I want us to set examples for other families, and, you know, just give back,” Tiffany said. “It doesn’t have to be monetary. It could be your support, your time. Not that you need a lot of time, it could be that it’s just 20 minutes doing something to help someone else somewhere. It doesn’t have to be just this time of year. It could be all year doing small things for others.”

She doesn’t have to look far for an example, not this holiday season.

For a kid, sometimes giving is as simple as helping your little sister find the last word.

Shawn Annarelli: 814-235-3928, @Shawn_Annarelli

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