The fight against childhood NB

By Matthew Crow

Patrick Lacey wants to save children’s lives. Through his efforts and those of his family and friends, he has raised over $160,000 in the past year to combat relapsed neuroblastoma, a form of childhood cancer for which there is no cure and little funding.

“Once this disease comes back or doesn’t respond to treatment, there’s no known cure,” Lacey said. “Once these kids reach this status, they’re deemed incurable.”

Once that happens, a child’s options become severely limited.

“There’s no money for it. There’s no one spending millions of dollars on drug development to cure this disease. All this work that’s being done is all around fundraising efforts by the families and friends to create new options and give these kids hope.”

For three years, Lacey has been raising money for the NB Alliance, a fundraising and support group for NB patients put together by Dr. Giselle Sholler. The funds are then dispersed to a consortium of 10 hospitals around the U.S. which are working together to create options for the children who suffer from relapsed neuroblastoma.

“She’s concentrating all her effort, all her work, and all her days, to test on this subset of kids,” Lacey said. “She’s taken it upon herself to say, ‘I’m going to find an option, I’m going to find a cure for these incurable kids.’”

The reason for Lacey’s charity looks up at him from behind 5-year-old eyes every day. That reason is his son William, who was diagnosed with neuroblastoma at seven months old and relapsed three months after the completion of his treatment. He has lived the ensuring three years through the tenacious efforts of his father and people like him across the country.

“We’re blessed he’s lived this long,” Lacey said. “Most kids don’t live this long. A lot of them die within six to eight months.”

William receives a highly experimental chemotherapy treatment every Friday in Burlington, VT, a three-hour drive each way from his home in Quincy.

“So far this year, William has missed about a third of his classes because of treatment,” said Lacey. “But he loves to go. He was up all night last night from about 1 a.m. to 5 a.m. throwing up from his chemotherapy. I had already called the school and told them he wouldn’t make it, but he came in like any other morning asking what time the bus was coming and demanded to go to school.”

Aside from the constant trips to the hospital and chemo side effects, William is able to have a normal childhood. He loves to play soccer and hockey.

“He’s obsessed with the Bruins goalkeeper, Jim Thomas, and so he spent half the game trying to go into the net to play goalie, but they don’t allow it until second grade,” Lacey said.

“He’s fortunate that he’s been able to stay stable. He’s physically very healthy. He’s running around, full of energy. He’s a very lively young boy. He spends so much of his time with doctors, nurses and other adults. We want him to just be able to be a kid.”

Even though Will’s neuroblastoma and treatment put things on hold for the Laceys, Will now has two younger sisters, Evelyn, 2, and Katherine, who is the 7-month-old addition to the family.

“He loves Katherine, but he’s never quite sure about Evelyn,” said Lacey. “He asked my wife the other day to put her back in his belly. She’s so in love with him, though. She chases him around constantly.”

One day, three years ago, some of Lacey’s friends called him up and asked him if they could start raising money. “I had never even thought about doing it before,” Lacey said. The Friends of Will was the result, using the internet and holding a fundraiser every year in Boston to raise money. This goes straight into the coffers of the NB Alliance.

The goal for this year is to spread the word to other parts of the Northeast, and the country, to get other fundraisers to spring under the NB Alliance umbrella, to raise more money for research and treatment to combat the debilitating disease. Other events have already popped up in New York, Ohio and New Jersey.

“If we can raise $2 million per year, the research would become self-sustaining,” Lacey said. To that end, he has put all of his free time and energy behind the fundraiser next spring. “Everyone loves to celebrate St. Patrick’s Day. The spirit of it is always something that’s important and fun. We just want to tie in a wonderful purpose.”

“This is something we will be doing for the rest of our lives,” he said of his family. “The fear is that the cure is just around the corner and we won’t find it until it’s too late.”

He will never stop supporting the search, even if it is too late. He fights the disease, along with other families throughout the country, for the sake of all children, in this generation and the next.