The family of Penfield woman Tiffany Bayer Lill is laboring so others won’t lose a loved one to a little-known disease.
Lill, a wife and mother of two, passed away last April at age 39 after battling Liposarcoma, a rare form of cancer, for 16 months.
Friends describe her as a healthy and active person, so Lill’s diagnosis came as a surprise.
“Even after I found out she had cancer, I felt like she was going to beat it,” said friend Jennifer Stanton. “We were in shock that she had the cancer and shocked of her passing away when she seemed so healthy and young and full of life. She didn’t seem sick. It didn’t make sense.”
Her family soon learned that they would have to travel further to get the best treatment. Despite her illness, Lill was determined to get better.
Sarcoma accounts for about 1 percent of all adult cancer diagnoses in the United States, and different subtypes in the same category.
Lill went to James P. Wilmot Cancer Center at Strong Memorial Hospital for treatment and found there was just one sarcoma specialist. At Sloan-Kettering Cancer Center in New York City, there were almost 30.
This prompted her to do something to help raise awareness and funds for sarcoma research in her hometown.
“She realized it would be nice if people in Rochester had the opportunity to talk about this,” said friend Vivian Santora. “There was only one doctor in all of Rochester. At Sloan-Kettering there were 27. And because it makes up only1 percent of all adult cancer, it’s hard to make sure you have the right diagnosis.”
After undergoing radiation and chemotherapy, doctors told Lill she was cancer-free. The disease returned several months later, however, as four new tumors were scattered throughout her body.
When the illness came back in full-force, so did Lill’s interest in beating it, explained her sister-in-law, Deni Bayer.
“She was focused the second time around she realized she was going to fight it,” Bayer said. “She was very tenacious and she put all she had into it.”
In the meantime, she and her loved ones organized a new charity called Steel Lillies — named after Tiffany’s last name and the steel rods inserted into her spine during her cancer treatment — a symbol of her own strength and beauty.
The group made a pledge to raise $250,000 for sarcoma research at James P. Wilmot Cancer Center by the year 2017.
Jim Lill, Tiffany’s husband, said the group chose to support the medical community in Rochester to help other local families who find themselves facing an impossible diagnosis.
“We just wanted to keep the money here,” Lill said. “We’re not really good at taking help from others...We did meal train started by family and friends for almost a year,” he added with a chuckle. “We want to keep moving forward and help other people like Tiffany.”
The family of Penfield woman Tiffany Bayer Lill is laboring so others won’t lose a loved one to a little-known disease.
Lill, a wife and mother of two, passed away last April at age 39 after battling Liposarcoma, a rare form of cancer, for 16 months.
Friends describe her as a healthy and active person, so Lill’s diagnosis came as a surprise.
“Even after I found out she had cancer, I felt like she was going to beat it,” said friend Jennifer Stanton. “We were in shock that she had the cancer and shocked of her passing away when she seemed so healthy and young and full of life. She didn’t seem sick. It didn’t make sense.”
Her family soon learned that they would have to travel further to get the best treatment. Despite her illness, Lill was determined to get better.
Sarcoma accounts for about 1 percent of all adult cancer diagnoses in the United States, and different subtypes in the same category.
Lill went to James P. Wilmot Cancer Center at Strong Memorial Hospital for treatment and found there was just one sarcoma specialist. At Sloan-Kettering Cancer Center in New York City, there were almost 30.
This prompted her to do something to help raise awareness and funds for sarcoma research in her hometown.
“She realized it would be nice if people in Rochester had the opportunity to talk about this,” said friend Vivian Santora. “There was only one doctor in all of Rochester. At Sloan-Kettering there were 27. And because it makes up only1 percent of all adult cancer, it’s hard to make sure you have the right diagnosis.”
After undergoing radiation and chemotherapy, doctors told Lill she was cancer-free. The disease returned several months later, however, as four new tumors were scattered throughout her body.
When the illness came back in full-force, so did Lill’s interest in beating it, explained her sister-in-law, Deni Bayer.
“She was focused the second time around she realized she was going to fight it,” Bayer said. “She was very tenacious and she put all she had into it.”
In the meantime, she and her loved ones organized a new charity called Steel Lillies — named after Tiffany’s last name and the steel rods inserted into her spine during her cancer treatment — a symbol of her own strength and beauty.
The group made a pledge to raise $250,000 for sarcoma research at James P. Wilmot Cancer Center by the year 2017.
Jim Lill, Tiffany’s husband, said the group chose to support the medical community in Rochester to help other local families who find themselves facing an impossible diagnosis.
“We just wanted to keep the money here,” Lill said. “We’re not really good at taking help from others...We did meal train started by family and friends for almost a year,” he added with a chuckle. “We want to keep moving forward and help other people like Tiffany.”
