Gregg Tweedy doesn’t need to be reminded that his son has cancer.

He can see it on the 6-year-old’s face, where the muscles on the left side have become paralyzed from surgery. He sees it in the constant doctors’ visits and piling medical bills. But Tweedy sees it most when he tucks in his eldest son, Jack, at bedtime and worries whether he’ll be alive in the morning.

And if Tweedy needed another reminder that his son has a brain tumor, he could just look at the beads.

Every child who is diagnosed with cancer receives a string, and each time they go through a new treatment, they are given a new bead. After 15 operations, Jack’s string stretches more than 6 feet long. It contains hundreds of colorful shapes and characters, each representing a procedure, a needle in his heart or a scalpel in his brain.

On multiple occasions, Tweedy has been asked exactly how many beads are on the string. He doesn’t know because he’s never counted.

‘Too many,’ he said. ‘One is too many for any child.’

Jack was diagnosed with a pediatric brain tumor in September 2007. Doctors said it was the size of a tennis ball, and he was given just two weeks to live. With no pediatric neurosurgeon at Upstate University Hospital at the time, Tweedy and his wife sought treatment at Children’s Hospital Boston, where Jack, then only 2 years old, received the first of many life-saving surgeries.

He has been battling brain and spinal cancer ever since. And after 120 weeks of grueling chemotherapy, the tumor is still growing. Jack is running out of options.

‘As a parent, you’re always waiting for the bad news, you’re always waiting for the shoe to drop, but you know you have to be positive because he doesn’t know how sick he is,’ said Tweedy, a 1988 Syracuse University alumnus.

Despite his struggles, by all accounts, Jack is a happy kid. Much of that happiness has stemmed from his involvement with SU athletics. The SU men’s lacrosse team adopted Jack in April 2010 through the Friends of Jaclyn Foundation, a nonprofit organization that links children who have brain tumors with college and high school sports teams. Nearly two years later, Jack remains the team’s biggest fan.

Tweedy said the athletes don’t have to do much – a pat on the head here, a fist bump there – to make Jack happy. Being allowed to run on the field with the players or meet them in the locker room after a game has done wonders for Jack’s self-confidence.

For a child like Jack, who was suffering from post-traumatic stress disorder after a slew of painful operations, this interaction made all the difference in the world, Tweedy said.

‘It has had a wonderful impact in making him feel normal, like someone special,’ Tweedy said. ‘He knows he’s not normal; he wouldn’t look in a mirror for a year because he thought his face was broken.’

Morey Mossovitz, assistant director of athletics for facilities and event operations, said Jack was the first child adopted by the men’s lacrosse team, but the SU women’s lacrosse team and men’s basketball teams have since adopted a child fighting pediatric cancer.

Of all the players on the lacrosse team, one became particularly fond of Jack. Former All-American midfielder Jovan Miller went out of his way to spend time with the boy, showing up to two of his birthday parties for support.

Miller was soon Jack’s favorite player, and still is, even though he graduated last spring. Miller attributes their connection to his love for kids and said he is still a child at heart.

‘It’s really hard to have a positive influence, especially in sports today, and anybody who can be genuine and really be a fan of mine, I can always appreciate it,’ he said.

Miller said watching Jack overcome such great obstacles while keeping a positive attitude put life in perspective for him.

‘Realistically, this kid is going through a lot more than I am,’ Miller said. ‘We just lost a game, this kid could possibly lose a life.’

Tweedy appreciates the athletes’ willingness to interact with his son, whether that be by accepting the Hershey’s Kisses Jack hands them while in the first row or just waving to him. It is the closest he will get to playing the game.

‘Jack will never play any sport,’ Tweedy said. ‘Even if there’s a cure tomorrow, the tumor has already done enough damage to his brain and his coordination that he’ll never have that skill level.’

The more time Jack spent running around with the team, Tweedy said, the more he broke out of his shell. Before, Jack might scream and run away when introduced to someone new. Now he feels comfortable greeting perfect strangers by taking their photo with his digital camera. The photos he took of Niagara Falls are framed in the Tweedy home.

In fact, photography is just one of Jack’s many hobbies nowadays. He also loves to color, play video games and run around with his little brother, Gabriel – who is almost the same size as Jack, despite being only 4 years old. He even goes to school when his immune system feels up to it.

Tweedy encourages him through it all. This week alone, the father threw Gabriel a birthday party, took Jack to chemotherapy and shaved his head at a charity event, all while going through a divorce.

Tweedy participated in the St. Baldrick’s fundraising event held Sunday at Kitty Hoynes, an Irish restaurant and pub in downtown Syracuse. He, along with his father and three friends, shaved their heads to raise money for pediatric cancer research. Their group was called ‘For the Love of Jack,’ and so far they have raised $7,670 of their $10,000 goal.

St. Baldrick’s raised more than $300,000 for pediatric cancer on Sunday alone, said Sophia Meskos, a volunteer who helped coordinate the event.

Tweedy invited the men’s lacrosse team to join him in shaving their heads to support Jack and other children like him. But due to the location of the event, it was against NCAA policy, said Cindy Desko, the wife of men’s lacrosse head coach John Desko.

Cindy Desko has gotten to know the Tweedys from lacrosse games, as they sit directly behind her. Jack has acted almost as a mascot for the team, she said.

The Tweedys haven’t been to a game yet this season because of Jack’s chemotherapy treatment schedule, but the men love when he attends. Jack doesn’t pay much attention to the game, but cheers loudly from the first row while handing the players chocolate.

‘I want this lacrosse team to be bonded, I want this team to win a national championship and I want Jack to be a part of that. Rally around this little boy who is such a fighter,’ Tweedy said. ‘If this team fought as hard as he does to stay alive, they’d never lose a game.’

It’s not hard to tell Jack is a fighter. Just look at the beads.

But the only two beads that have any real meaning to Tweedy have yet to be strung: the bead of remission and the bead of No Evidence of Disease.

egsawyer@syr.edu

If you would like to make a donation to help Jack and other children fighting to beat pediatric cancer, visit stbaldricks.org/participants/tweedy. 

Published on March 28, 2012 at 12:00 pm

Contact Liz: egsawyer@syr.edu | @3sawyer