NORTH HAVEN — When times are at their hardest, family is something that you can always rely on.
Tara Merola and Crystal Thomas are embodying that very statement, working on organizing a benefit for their cousin, Brooke Royka-Ciecierski, 31, who was diagnosed with a rare form of cancer only about a month ago.
“It’s going to be a long road for her because it’s difficult to manage your expectations around the prognosis because it’s so rare they don’t have a lot to benchmark against,” said Merola. “For example, Yale has only seen 10 of these cases.”
According to the National Cancer Institute “for every one million people, one to two are diagnosed with synovial sarcoma per year in the US.” Synovial sarcoma, the cancer Royka-Ciecierski was diagnosed with, is more common among young adults and can grow for years before it’s found by doctors.
“We do think she had it for about eight years,” said Thomas.
Thomas and Merola said that Royka-Ciecierski had ankle problems for several years before her diagnosis. However, these problems were attributed to sports and Royka-Ciecierski’s active lifestyle.
“They always thought you probably tweaked it, they did multiple tests and didn’t really see anything,” said Merola. “It wasn’t until after she had her second child that the pain began to increase substantially.”
Joint pain as a result of synovial sarcoma is common, as the cancer grows in muscles or soft tissue and “joints such as the wrist or ankle,” according to the National Cancer Institute. In order to stop the spread of cancer, Merola said that amputation is “still on the table” for Royka-Ciecierski.
Hearing the news of a rare form of cancer, coupled with it being left untreated for years and the thought of possible amputation, would be a hefty toll for anyone. But Merola and Thomas know that their cousin isn’t just anyone.
“She uplifts everyone around her,” said Merola. “If she wasn’t that way, I think we would all be crying more than we do. She makes us laugh, she makes jokes. She sees the light in this situation and the hope.”
Thomas said that when they made a GoFundMe page for their cousin, “people would write sappy things.”
“She’s like ‘I don’t want to hear it’,” Thomas said. “She’s pretty much saying she’s going to beat this.”
As of Tuesday, Oct. 15, the GoFundMe has raised over $10,000 for Royka-Ciecierski. That’s only a drop in the bucket for Merola and Thomas who are planning the Fight Strong benefit for their cousin which is slotted for Saturday, Nov. 2 from 1 p.m. to 5 p.m. Tickets are $40 per person with kids 12 and under free of charge.
The benefit will be hosted at Bozzuto Farm in Northford. Food will be provided by Anthony’s of New Haven and other local restaurants. Raffle baskets have been donated by friends, families and local businesses.
“There’s no words to explain her as a person. She’s just amazing,” said Thomas. “She’s an amazing mother, an amazing person, a great wife. Everyone loves her. You can’t help but do anything but smile and laugh with her.”
While Merola and Thomas continue planning and working they’re sure that Royka-Ciecierksi is planning on “maintaining normalcy.”
“She’s incredibly proud of her children,” said Merola. “Right now her highlight is watching her son play football. She’s the number one biggest fan of her son, even with crutches and uncomfortable as she is. She’s still going to work. She just wants to live her life."
“When you want to cry, call Brooke,” said Thomas. “Because you won’t cry.”