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updated: 3/9/2012 12:04 PM

Island Lake second grader battles rare cancer

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  • Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

      Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

  • Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

      Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

  • Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

      Lily Smith, a second grader at Cotton Creek School in Island Lake, is battling angiosarcoma, an aggressive, rare cancer not often found in children.

 
 

Kiera Kuester is living every parent's nightmare. Her 7-year-old daughter, Lily Smith, is battling a rare, aggressive cancer called angiosarcoma.

The second grader, who recently lost her front teeth like most of her classmates at Cotton Creek School in Island Lake, has stopped what she enjoys most -- cheerleading and ballet classes. She is home schooled when she feels up to it.

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For the past four months, many of Lily's days have been spent at Children's Hospital of Wisconsin where her petite body has undergone more than two dozen rounds of radiation and six cycles of chemotherapy.

"We're in chemo right now. She has two more cycles left and then two surgeries," Lily's mom said. The chemo treatments, often accompanied by blood transfusions, last three days and occur every three weeks.

The nightmare started in early November when Lily, Kuester's only child, found two small lumps under her arm. The lumps were removed. The pathology report showed the cancer was making its way through Lily's body leaving small tumors on her lungs.

Kuester would rather not think about the numbers relating to the cancer that's rare in children. "In the past 20 years, there have been 10 kids diagnosed with angiosarcoma. Six of the cases were like Lily's. Two have survived," the 29-year-old Kuester said during a phone interview.

The cancer often affects the soft tissues, bones and lungs.

In an effort to care for her daughter, Kuester, a single mom, is taking an unpaid medical leave from her job at Advocate Health Care, a home health care business in Lake Zurich.

The bills are piling up. Insurance doesn't cover all the required medicine. The trips from Island Lake to Milwaukee and the nearby Ronald McDonald House are taking a toll on the mother-daughter team.

In an effort to help, a fundraiser is scheduled for 1 to 5 p.m. Saturday, March 17, at 3-D Bowl, 4018 Roberts Road in Island Lake.

The Ryan York Foundation, a local nonprofit organization designed to help children with cancer, is planning the fundraiser and has offered tremendous support to Kuester and Lily.

Lake Zurich Middle School North teacher Liz Rathgeber serves as a co-founder for the foundation that she started when her student, Ryan York, died of cancer in 2001. He was in her eighth grade class.

The idea for the nonprofit started when York was sick. The organization now has a board of directors made up of educators, health care professionals, community business leaders and the York family.

Rathgeber learned about Lily through her son, Hunter, a second grader at Lily's school.

The teacher has called on the community and two former Lake Zurich students for assistance in drawing support for the event named, "Lanes for Lily."

Anthony Castonzo, 2011 Indianapolis Colts first-round draft pick, will sign autographs at the event, and Aly Jados, seen on "American Idol" and "The Voice" will perform live. "They were both students of mine," Rathgeber said.

A silent auction featuring Castonzo's rookie jersey, a football signed by Jay Cutler, sports paraphernalia and items donated by the community are part of the mix. The cost is $15 to attend. Kids under 10 are free.

Kuester said she is so thankful to have a foundation like this helping her. "Not only have they paid three months of my mortgage and my escrow shortage, but they are having this fundraiser," she said.

She added it's "amazing" to see not only the foundation, but people from the community who she does not know come out and show their love and support.

Meanwhile, Kuester continues to support and hope for strength for her daughter who enjoys playing with her best friend and her Monster High dolls.

The toughest part for Kuester is watching her child suffer so severely. "The hardest part is seeing your child go through pain," Kuester said, her voice breaking. "I will never give up on her."

A charitable account has been established for Lily and Kiera at Wauconda Community Bank, 495 W. Liberty Street, Wauconda, IL 60084. Checks are payable to "Love for Lily."

More about Kuester's journey can be found on the CaringBridge website at www.caringbridge.org/visit/lilysmith.

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