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Boy with cancer gets a winter wonderland wish fulfilled

PORT RICHEY — Not quite 8 years old, Alex Gualemi has saddled up a horse, ridden a motorcycle and flown in a single-engine plane. But he yearned, too, for a more simple experience: He wanted to see snow.

In real life.

He had seen it on television, heard about it from his dad, who went up north one time. But his boots had never crunched through it; his hands had never molded it into the perfect wintry weapon.

Geography represented more than a temporary inconvenience. On March 17, at 9:33 a.m., while he was headed to class at Fox Hollow Elementary School, his stepmom got a phone call from his doctor.

The news was bad: The tumor on Alex's brain wasn't going to get better. He had a few months, at the most.

All of which begins to explain what was happening Tuesday at a Monarch Lane home in Regency Park. Why kids were wearing mittens and drinking hot chocolate on a sunny afternoon. Why a house still decorated for Halloween was blasting Christmas music. Why a truck loaded with 5 tons of ice pulled up in the yard.

Looked like snow.

• • •

Alex has been fighting brain cancer — it's a form called medulla blastoma — since he was 4 years old. His chances weren't good then, but he endured two rounds of chemotherapy and four bone marrow transplants.

He lives with his dad, Tony Gualemi, an air conditioning repairman, and stepmom, Brittany Gualemi, a senior lifeguard at the New Port Richey aquatics complex. He also lives with two siblings, Heaven Lee, 7, and Anthony, 4.

People use words like "sparkling" and "full of life" to describe Alex. He has long, fluttering eyelashes that seem at odds with his rascally grin. He is known as a serial hugger.

He introduced himself to a Hernando-Pasco Hospice social worker by saying, "Hi. I'm Alex, and I have cancer." One time his sister complained of a headache, and Alex worried he had given her cancer. He once told someone that if he could grow up and get married and have children, "I'd live forever."

His family never told him what "terminal" means. But they think he may understand it.

"He does talk about God," said his grandmother, Gail Gualemi, "about how when he goes to see God, he wants to be a boy angel."

• • •

Not long ago, Vicky Doucette met Alex and Brittany at the recreation center, where she was working out. She was touched by his story, by his list of simple wishes. She also is a Sunday school teacher and treasurer at King of Kings Lutheran Church.

Alex's other wishes — riding on the plane, the motorcycle and the horse — had been granted in recent months. But he had still not seen snow.

Doucette suggested the church do a fundraiser for Alex. King of Kings agreed, and scheduled a Nov. 22 benefit to raise enough money to send Alex and his family on a trip up north this winter.

Only, in the last couple of weeks, Alex took a turn for the worse. He spends most of the day in bed and has trouble standing too long before he needs his wheelchair. His bubbly personality has faded a little. He stopped hugging strangers.

No one was sure if he'd make it to the fundraiser, let alone be healthy enough for a trip. So the church regrouped.

"We thought we'd bring the snow to him," Doucette said.

• • •

Back to Tuesday afternoon in Regency Park. Alex was still in bed, unaware of the impending change of season in his front yard.

All Star Ice had driven three hours from Cocoa Beach to get to his house. (The company agreed to do its work at cost, about $1,600, which King of Kings paid.) Workers turned on their machine and began kicking out soft, malleable snow-like ice through a cannon and onto the grass.

Hernando-Pasco Hospice workers put out hot chocolate and cookies. Adults, armed with cameras, tried to keep the children from pouncing just yet on the blanket of snow.

This snow, after all, was meant for one boy. And after a while, he emerged from the house, his Spider-man gloves and his hat on, his hands held secure by his stepmom. He squinted into the sunlight as someone cranked up the Christmas music, and everyone called his name and hurled snowballs at one another.

"Mommy, tell them thank you for the snow," he said to his stepmother.

He shuffled toward the white patch. He watched his sister, by then in a tank top, making snow angels. He watched other pink-cheeked kids horseplaying. He watched adults put snowballs in his hand. When he couldn't take the snow falling on his head anymore, he asked if he could just watch from a distance.

He moved just a few feet away from the outer edges of the snow. Someone brought him his wheelchair. He talked about touching snow for the first time. "I thought it felt like Play-Doh," he said, "with water."

He ordered one cousin to put a snowball down another cousin's pants, though he relented and allowed it to go down the boy's shirt instead. He launched a few snowballs of his own at the adults trying to take his picture. And then somebody brought him a giant orb of snow, as big as his head.

Mesmerized, Alex asked if someone could put it in the freezer. He wanted it to last.

Jodie Tillman can be reached at jtillman@sptimes.com or (727) 869-6247.

Fast facts

To help

King of Kings Lutheran Church will still hold a fundraiser for Alex Gualemi and his family, with the hopes of using some of the money to reimburse itself for the snow-making machine. The event runs from noon to 4 p.m. Nov. 22 at the church, 10337 U.S. 19 in Port Richey, and will feature an auction, craft sales, small carnival and food.

Boy with cancer gets a winter wonderland wish fulfilled 11/11/08 [Last modified: Monday, November 17, 2008 5:18pm]

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