Published in the Burlington Times-News 7/2/10

‘He made people smile’

Boy succumbs to brain tumors after seven-year battle

BY ROSELEE PAPANDREA 

MEBANE — Heather Weis snipped open a package filled with 2,200 smiley face buttons and divided them into bags. “We want to make sure everyone who comes has one,” she said, and put it all in a basket, “because that’s what Nicholas did. He made people smile.”

Balloons hovered in a corner, cards covered a mantle and a large photo of Nicholas on a toy motorcycle blown up just for the upcoming celebration rested in front of the TV.

The cat, Gabby Aunt Kathy — the kind of name a little boy would give the family pet — took her place on an end table in the living room, right beside a framed photo of Nicholas taken on picture day at River Mill Academy, where he was a straight-A student. The cat turned its head slightly, gazing at the smiling boy.

The photo was placed there about a month ago — right around the time that Nicholas’ health took a turn for the worse.

It was shortly after he turned 2 that Heather and Jon Weis learned that their little boy had brain cancer with an aggressive tumor that would return time and time again, despite the five craniotomies, two port placements, one shunt placement, five gamma knife radiosurgeries, more than six weeks of daily radiation and months of chemotherapy.

A month ago, Nicholas started to succumb after a seven-year battle. Hospice was called in. A bed was set up in the living room in their Mebane home, and the photo — the one Gabby Aunt Kathy won’t stop looking at — was set up so the people who cared for Nicholas in his last days would have a glimpse of how the boy looked when he was lighting up rooms, tugging on heartstrings, cracking up radio listeners with his jokes on 93.1 The Wolf and making an impact on thousands and thousands of people who knew his name.

But Gabby Aunt Kathy only started her vigil near the photo last Friday — the day Nicholas Jonathan Weis died. He was 9.

Since that time, Heather and Jon Weis have hurried around making arrangements. They met several times with Lowe Funeral Home but refuse to adapt to the typical terminology.

“We don’t have a funeral director. We have a party planner,” Jon Weis said.

FOR THE WEISES , Saturday, the day their son is laid to rest, will be an event, a celebration of life. There will be tears, no doubt, but these parents are determined to remember their miracle baby with the same joyful exuberance that he summoned every day of his life. They’re doing it his way — their way — even if it’s non-traditional, which means every person will wear a smiley face button and if they run out, they have 1,000 smiley face stickers as backup.

“We’re doing Nicholas’ work right now for him because he doesn’t have a voice here now,” Heather Weis said.

The procession from Lambs Chapel in Haw River to Alamance Memorial Park following the celebration, which starts at 11 a.m. and is open to all, is expected to include 1,000 motorcycles. It will be led by one of Nicholas’ great loves, a monster truck.

Married almost 20 years, Heather and Jon struggled to have a child of their own. They spent 10 years trying and hoping fertility treatments would take. They gave up, ready to live their life another way. Then along came Nicholas. They had no idea how many hearts he was destined to touch.

And that he did. His parents have known it all along, but the phone calls, thousands of e-mails and the encounters with complete strangers this week who have taken the time to say Nicholas made them laugh or brightened their day or gave them hope only reinforced it.

Every day, there is a new surprise or heartfelt moment or another Nicholas story that just takes their breath away. They have wrapped themselves in the blanket of memories their son left behind and remain in awe of this whirlwind tour he took them on.

“We’d tell Nicholas, ‘We’re just along for the ride. We’re just hanging onto your coattails. Take us where you want to go,’” Jon Weis said.

EVER SINCE THEY received Nicholas’ diagnosis, the Weis family decided to make every day count.

“You didn’t put things off,” Heather Weis said.

It meant getting up at 5:30 in the morning and taking spontaneous trips. Often, those trips included attending monster truck shows. Parties weren’t just for birthdays or special occasions.

“We would have a party just because it was another day,” Heather Weis said.

And every trip, every party, every chance he had to participate in the Bob’s Buddies Radiothons for the Pediatric Brain Tumor Foundation or tell jokes on 93.1 or sing on stage with country music artist Jake Owen or plant kisses on “American Idol” star Kellie Pickler’s cheek, Nicholas declared it “the best day of my life,” confirming to his parents they were doing something right.

Nicholas knew he had brain tumors that could potentially take his life, but he didn’t know it was cancer.

“We didn’t want him to fear it,” Jon said.

And he didn’t. Nicholas lived with abandon.

WHEN HE WAS in first grade, Nicholas started telling jokes on the Wake Up with the Wolf show on 93.1. Eventually, he told jokes live Monday, Wednesday and Friday, recorded them for Tuesday and Thursday and his best jokes for the week were played on Saturday. It didn’t take long for the charismatic kid with impeccable comedic timing to gain a following.

But beyond the jokes, the radiothons, the requests for autographs, the 13,000 fans on his “Prayers for Nicholas” Facebook page or his brushes with the rich and famous, Nicholas just had a way with people.

“He just drew people in,” Heather said.

On one trip to Emerald Isle when he was just 4 years old, he spotted a woman walking on the beach and told his parents he needed to say hello to her. Determined, he took off running and they, in turn, ran after him.

“Excuse me, ma’am. Excuse me, ma’am. I just had to say hello,” Heather recalled him telling the stranger who was having a bad day until she encountered Nicholas and his simple act of kindness.

“We told him, ‘You’ve been given a very important job. People look at how you act and how you live and you are changing people’s lives and inspiring them just by being you,’” Heather said.

He took it to heart and continued amazing and touching others.

“He woke up with a song in his heart and a smile on his face every morning,” Jon said.

In May 2009, Dr. Gerald Grant, a neurosurgeon at Duke University Medical Center, performed Nicholas’ fifth craniotomy. In the past, Nicholas’ recovery time was always quick, and he was out of the hospital within 48 hours of his surgery. But last May, Grant removed another tumor, leaving only about a third of the right side of Nicholas’ brain, and the left brain collapsed.

When the surgery was over, Grant warned theWeises that Nicholas’ stay wouldn’t be quick, and his recovery was unpredictable.

“He said that he may not be able to walk and talk,” Jon Weis said. “It was devastating news.”

When Heather and Jon walked into the recovery room, they were prepared for the worst. Nicholas pulled off his oxygen mask and said, “I’d like a cheese pizza, mozzarella sticks and some water with no lemon.”

The next morning, when the doctor walked into the boy’s hospital room and saw him talking and playing, Grant stopped and stared.

“There was a tear coming down his face,” Heather Weis said. “He said, ‘I have nothing to do with this.’”

Nicholas left the hospital within 48 hours.

A regular listener of 93.1, known as “Roy the Toy” of Thomasville, survived both Vietnam and cancer. He also is a recipient of two Purple Hearts. He reached out to Nicholas a couple of years ago because he wanted to give one of the hearts to the boy he thought was the bravest person he’s ever known.

Nicholas will be buried with the Purple Heart on his lapel.

HAD HE LIVED , Nicholas would have turned 10 this past Monday. Heather and Jon walked out their front door, and the street was lined with cars. Students from River Mill Academy and their parents released red balloons and stayed well into the night sharing stories and laughs.

“It is overwhelming the amount of love and support we have gotten,” Heather Weis said. “Every day, people have blown us away.”

When Saturday comes to an end and the planned celebration is over, Heather and Jon know they’ll have to figure out how to live without their son.

“This is the worst thing a parent can go through, but I can tell you he’s getting us through this,” Heather Weis said.

They’ll always have their memories, the photos, his jokes and the last entry Nicholas wrote in his school journal:

“Sing a happy song and
Play a pretty tune.
Remember I love you
In the place I love the most.
No matter where you are
I’ll live.
Go frolic and play in the sand of the beach with me.”