Lilyana Barthuly and Owen Ahern will have front row seats Sunday as 50 area folks shave their heads for a good cause.

The two are honored guests at the annual St. Baldrick’s fundraiser — Shaving for a Cure — that will be held from noon to 4 p.m. at the Ramada Plaza Hotel, 1 N. Main St. The event is open to the public.

The day has particular significance for Lily, 6, and Owen, 10, because they are battling cancer.

Lily is the daughter of Joshua and Penny Barthuly of Rosendale and Owen is the son of Tim and Rose Ahern of Fond du Lac.

The goal of this year’s event is to raise at least $50,000. The fundraiser has collected more than $70,000 the past two years.

Lily

Lily Barthuly and her family know all too well the ravages of childhood cancer and the need to find a cure. They have battled the disease since April 2008 when Lily, then 4, was diagnosed with neuroblastoma, a rare form of childhood cancer that annually strikes 650 children nationwide.

Lily was one of three Fond du Lac area children diagnosed with the rare disease within five weeks of each other. The children were featured in The Reporter in a 2008 story.

Neuroblastoma invaded Lily’s body in the form of a vicious tumor lurking between her left kidney and spine. Although she tolerated round after round of chemotherapy, radiation and two stem cell transplants during the first year of treatment, cancer cells remained.

In November 2009, her parents sought additional treatment in New York City at Sloan-Kettering Memorial Hospital.

Treatment there — 3F8 antibody therapy — directs Lily’s immune system to attack the cancer in her body. The family could be spending at least one week a month there for up to two years.

However, during the first two months of treatment in New York this winter, Lily developed life-threatening complications that have postponed her ability to receive the 3F8 treatments.

The roadblocks included her body’s resistance to the treatment and pneumonia, which struck shortly after she had cancer surgery in December.

Lily’s parents were at her bedside in New York at Christmas while their daughter fought for her life.

“We thought we were going to lose her at one point,” said Penny Barthuly.

On top of that, financial complications occurred in February when Joshua Barthuly lost his job due to downsizing and the economy. Penny lost full-time status at her job just months earlier. The family was relying on health insurance through Joshua’s employment.

With a degree in graphic communications and a background in graphic design and press work, Joshua’s search for employment is intense.

“Cancer does not let us choose anything,” Penny said. “Our lives revolve around it now. As her mother, I will do anything for Lily and will be there to help her get through it. We are living day to day now.”

Lily’s treatment plan is scheduled to resume next month. Meanwhile, Lily recuperates at home in preparation for her next trip to New York.

Owen

Owen Ahern, 10, was diagnosed with T-cell non-Hodgkins Lymphoma in August 2008.

His team of brothers — Brendan, 17, Sean, 15, Egan, 12, and his twin, Colin — and his parents — Tim and Rose — are battling childhood cancer with a vengeance as Owen continues an aggressive two-year treatment regime.

His symptoms began with a cough.

“It sounded like a croup cough, and we had run the croup circuit with all of our boys, so nothing really alarmed us at first,” said Rose Ahern.

She said the cough persisted, and medical intervention was sought. Just days later, they received the diagnosis. Tests revealed a grapefruit-size mass in Owen’s chest.

“The thought that Owen’s cough was anything as devastating as cancer never entered my mind,” she said. “Other than this cough, he was an active, seemingly healthy, happy, 8-year-old boy.

Tests also revealed enlarged lymph nodes containing cancer in Owen’s upper body. With a plan to treat his whole body, an aggressive 108-week therapy regime to battle Owen’s cancer began.

“They handed us a binder filled with information, outlining his weeks of treatment and medications. To think our little boy would be enduring all of this for more than two years was incredibly hard to digest,” Ahern said. “Words can never describe the feeling.”

One of the most difficult parts of the process was telling her son he had cancer, Ahern said.

“We will never forget that moment.”

The good news is how well Owen’s cancer responded to the treatment. Within about two weeks, the giant mass in his chest literally disappeared.

“Obviously, treatment continued to ensure that all cancer cells are hunted down and eradicated,” Ahern said. “There have not been any signs of cancer in follow-up testing.”

The bad news came in the form of side effects Owen endured during the treatment process — dangerously low blood counts caused many unexpected emergency room runs to Milwaukee. He also dealt with kidney stones, weight loss, seizures and muscle weakness.

“However, he has been amazingly resilient,” Ahern said.

She credits the family’s faith and support, as well as Owen’s attitude, for his success.

“His spunkiness, intelligence, faith in God and humor pushed him through this. He is a changed young boy — much more like an adult. Owen knows pharmaceuticals, medicals terms and conditions that even his dad and I didn’t know 18 months ago.

“We are so proud of Owen and how hard he has battled, but I am equally proud of his brothers for how they have responded and supported him through this journey.

“I always knew that God gave me the most amazing husband, but this experience has shed a light on Tim that makes me see him in a totally different manner. I am so grateful he is the partner I have to work with through this challenge,” she said.

As for the upcoming St. Baldrick’s fundraiser, Ahern sees a bright spot.

“We want to continue to help raise awareness of childhood cancer and, in turn, raise the necessary monies for research,” she said. “If we can help one boy or girl and their family not have to go through the sorrow, terror and pain we have, it will be worth it.”

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