Firefighter Shaving Heads, Tackling Childhood Cancer

Dan Jarkiewicz originally just wanted to assist a good cause when he decided three years ago to plan a fundraising event for The St. Baldrick’s Foundation.

St. Baldrick’s is a California-based nonprofit that is committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

The foundation’s most popular fundraising opportunity is its head-shaving event, wherein people get sponsors to encourage them to get bald as a show of solidarity for children battling cancer.

Jarkiewicz hopes to raise $100,000 for St. Baldrick’s and get 200 people to shave their heads when he hosts his third head-shaving event at Martin’s East in Middle River. The event takes place from 1-6 p.m. on March 6. This after he, along with dozens of volunteers, raised $94,000 and had 179 shavees in 2010.

“The outpouring of support for this cause has been amazing,” said Jarkiewicz, a Baltimore County firefighter from Perry Hall.

Jarkiewicz originally got involved in the cause after learning about it from a friend who participated in an event in Pennsylvania.

Jarkiewicz said he was amazed with how much more funding was needed for pediatric cancer. According to St. Baldrick’s, less than 3 percent of all cancer research funding allotted by the federal government goes toward childhood cancer research.

Since 2000, St. Baldrick’s has raised more than $90.6 million through more than 3,400 head-shaving events with nearly 147,000 people shaving their heads. This all benefits the 160,000 children that are diagnosed with cancer each year.

However, right before his first event in March 2009, Jarkiewicz’s cause took on a personal tone.

His then-6-month-old daughter, Alyssa, was diagnosed with hemophagocytic lymphohistiocytosis (HLH). The disease is a rare blood disorder that affects 1.2 in 1 million children and requires a bone marrow transplant.

While HLH isn’t cancer, Alyssa— known to most as Ally—had to be treated much the same as those with cancer, including a rigorous regimen of chemotherapy and steroids.

“It’s every parent’s worst nightmare,” Jarkiewicz said. “You’re just not sure what the future holds. You just want to find out what needs to be done to beat it.”

Even with Ally undergoing treatment, Jarkiewicz—along with his wife Beth— went ahead with the initial event just hoping to get 15 people to shave their heads and raise a few thousand dollars. That initial event had 79 shavees and raised $37,000.

The following year brought many challenges for Ally and the Jarkiewicz family. This included a bone marrow transplant and 352 days at the hospital, most of it spent at Johns Hopkins.

During that stay, Ally spent much of it in the PICU and was intubated and sedated.  She also suffered from heart failure and her body filled with fluid that placed pressure on her lungs, stomach, liver and kidneys.

“It’s something you never want to watch your children go through,” said Beth Jarkiewicz, an occupational therapist. “If we could have switched places with her, we would. But, she is such a fighter.”

That fight allowed Ally to come home last year. She even had the opportunity to meet her bone marrow donor. Kalika Stavroulakis, a physician’s assistant from southern California, had also been a St. Baldrick’s supporter. Her boyfriend at the time, Jon Ansell, is a shavee and a firefighter in California.

Now 2 ½ years old, Ally is a playful girl and runs around like many other children her age. She has some developmental delays due to her long hospitalization, but doctors are optimistic she will catch up over time. The biggest concern Dan and Beth Jarkiewicz have is the chance of Ally being diagnosed with a secondary cancer due to the chemotherapy.

“We’re aware of the potential problems, but we’re just so glad she is still here with us,” Beth Jarkiewicz said. “You really appreciate what you have with your children.”

Ally is doing so well that she will be at the event at Martin’s East and will be one of 21 children honored. Admission to the event is free, although there will be a silent auction, raffles and food for sale.

As of Feb. 24, the event has attracted 151 shavees with pledges totaling more than $42,000.  Dan Jarkiewicz said there is still time to register to have your head shaved and/or become a volunteer by registering online.

“This is very personal for me,” Dan Jarkiewicz said. “It’s a much bigger drive now for all the kids we’ve got to know and how many children we have got to know who have died from cancer. It’s such a terrible disease.”