Laurie Paganelli of Ewa Beach will be among 46 women who will shave their heads Sunday in Hollywood, Calif., to raise money and awareness of childhood cancer.
She’ll be participating in the St. Baldrick’s Foundation’s third annual "Shave for the Brave" event. The "46 Momma" team of which she is a member represents the startling statistic that every weekday, 46 families in the United States receive the terrible news that their child has cancer.
Paganelli heard those words when her son, Jordan, was diagnosed with alveolar rhabdomyosarcoma, a rare cancerous tumor of the skeletal muscles, in January 2008 at the age of 16. The teen underwent 58 weeks of chemotherapy and 12 weeks of daily radiation treatment before he died in 2009, just five days shy of his 18th birthday.
A celebration of life was held on his birthday, when the church bell rang 18 times, Paganelli recalled.
"One in 5 kids (diagnosed with cancer) will not survive. The government allots less than 4 percent of its cancer research budget to childhood cancer," she said. "My son ran out of treatment options and died."
HEADS UP
>> To donate, visit www.stbaldricks.org or Laurie Paganelli’s personal St. Baldrick’s Foundation page at goo.gl/AQw1o. >> To join the cause and shave your head in honor of a child, email membership@46mommas.com or visit 46mommas.com.
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The Paganelli family was introduced to the St. Baldrick’s Foundation during a visit to a pub in Washington, D.C., that was hosting one of the charity’s "Shaving the Way to Conquer Kids’ Cancer" events. Jordan had already lost all of his hair due to his cancer treatment. They heard about the event at the last minute and were waiting to see whether his blood counts would be high enough for him to participate; if they were too low, he couldn’t be out in a crowd.
He was able to take part. "Everyone was shaving their heads. My son’s friends started daring each other and they all started shaving their heads. It was the first time he took his cap off," she said.
Each year a new team of 46 Mommas is chosen from across the United States. Since its first year, 2010, the team has raised more than $700,000, with more than $100,000 collected so far this year. The money and funds raised by other St. Baldrick’s teams support childhood cancer research grants.
In addition to being a "shavee" at Sunday’s event, Paganelli wears beads, lots of them, to represent Jordan’s personal milestones and the procedures and treatments he endured.
Paganelli said she is more nervous about speaking in public and being on camera than about shaving her head.
She sees it as an opportunity to honor all kids who lose their hair during cancer treatment. "We will stand in solidarity to raise awareness for childhood cancer," Paganelli said.
She described her son as someone with grace and courage who was strong under pressure. And she’s hoping to emulate his qualities as she honors Jordan at the Hollywood event.
"I remember him looking up at me when we were filling out the hospice papers, asking me if I was going to be OK," she said.
Jordan’s last request was to have a party so he could say goodbye to as many people as possible. "We had about 100 people in the basement, with pizza, smiles and tears. He met them all with open arms. He was joyful even though he knew he was going to die. He had such a feisty spirit," she said.
"I know that he will be watching over me and he’ll be proud."