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Brashinger: Manhattan woman dedicated to helping fight against rare cancer

DonnBarker (from left) her daughter Kacie Joyce Condbefore Barker was diagnosed with Ewing's sarcompediatric cancer thtook her life nine years

Donna Barker (from left), her daughter Kacie, and Joyce Condon before Barker was diagnosed with Ewing's sarcoma, a pediatric cancer that took her life nine years ago. | Supplied photo

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Updated: October 16, 2013 6:09AM



Joyce Condon, 35, of Manhattan, said she wasn’t too concerned when her sister, Donna Barker, found a small lump on her shin 10 years ago. In fact, Condon said, “I couldn’t really see it.”

But Barker, then about six weeks from her 29th birthday, insisted that something was wrong.

Determined to find the cause of the slight swelling that others told her was probably the result of her bumping her leg or something she had done while running, Barker saw several doctors.

“If she had found a lump in her breast, everyone would be yelling at her to get to the doctor,” Condon said.

But because there is so little awareness of Ewing’s sarcoma, a form of pediatric cancer and Barker’s eventual diagnosis, Barker’s symptoms did not raise red flags with family and friends.

The rare form of cancer is most commonly diagnosed in children and young adults from 8 to 18, so Barker didn’t fit the typical profile, Condon said. She said her sister was misdiagnosed several times before being correctly diagnosed at the University of Chicago Medicine.

The statistics at the time for a patient in their first year of non-metastasized Ewing’s sarcoma was a 65 to 75 percent cure rate, Condon said. The odds dropped by 15 percent if the cancer had metastasized. Despite Barker’s quick response to the slight swelling on her leg, it had metastasized.

“Obviously, with any cancer, the sooner the better,” Condon said. “That’s kind of why I … think it’s so important for me to get the word out there. If something goes on for more than two weeks, check it out. Trust your gut instinct.”

She said her sister was persistent because “she knew something wasn’t right.”

Barker underwent surgery, chemotherapy, radiation and a stem cell transplant — all to no avail. She lost her battle 14 months after her diagnosis — leaving her husband, John, and her daughter, Kacie, 5 years old at the time, to mourn her loss with family and friends.

Condon said she attended counseling sessions at the Cancer Support Center in Mokena during her sister’s illness and after her death, and it was there that she decided to raise awareness about pediatric sarcoma.

“It’s what I want to do for the rest of my life,” she said.

Condon got a start on her goal during Barker’s illness, organizing a volleyball fundraiser, Digging for Donna, to help with medical costs. Condon continued the fundraiser after her sister’s death, donating the funds to the Cancer Support Center until 2011.

That’s when she heard about Kristy McCollum Sewing, a 30-year-old wife and mother who grew up in Manhattan and succumbed to Ewing’s sarcoma, leaving behind a husband and small child.

“Her story actually propelled me into Dani’s Foundation,” Condon said.

Although she “loved the Cancer Support Center,” she said, she embraced the mission of Dani’s Foundation, a national organization committed to finding the cause and cure of pediatric sarcoma.

Condon recently became the Midwest office coordinator for the foundation and is in charge of fundraisers that will help with further research, awareness and patient assistance.

An upcoming benefit through Dani’s Foundation, “The Lincoln-Way All That Glitters Dinner & Dance,” will be held from 6:30 to 10 p.m. Sept. 21 at the Joliet Country Club, 1009 Spencer Road, Joliet. The cost is $125 per person or $200 per couple.

RSVP to Joyce@DanisFoundation.org; send your reservation payment to P.O. Box 1094, New Lenox, IL 60451; or make an online credit card reservation at www.blacktie-colorado.com/online_sales/rsvp_ticket_purchasebt.cfm?rsvpid=7352.

For more information, call (773) 576-0877 or visit danisfoundation.org.



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