Father who lost daughter to rare cancer hopes to fundraise for research

- The drive from Peter Bilotti' marble and granite company in the heart South Philadelphia, to the resting place of his beloved only daughter Alexsandra is a few hours up and back.

"It's every week, at least one time or an extra day during the week," Peter explains.

She passed away a year ago, at the age of 21.  

"When your child dies, you learn how to live in that level that it puts you down, puts you at a level of life that, something's been taken from you," he said.  

For Peter, the nightmare came as he helplessly watches his baby girl spend half of her young life suffering, until a rare form of adolescent cancer called Ewing Sarcoma, slowly stripped her life away.

She had two bone marrow transplants, and major surgeries where doctors even removed ribs.

When she was in remission for a few years, Peter credited their faith.

"I was gonna have a miracle out of all this, time went on and it kept getting worse and worse," Peter remembered.

"The vision went, the eye lids, the movement in the hand, she couldn't hold a pencil no more," he recalled.

The loss has been the toughest on Alex's mom.

Peter struggles everyday around his shop. It's named for his daughter, and it's where so many of her favorite things remain today...

She played at the family home, right upstairs. Peter says he feels her spirit all around.

"She knows how much we love her, she really does," Peter said, "I let her know how much I miss her, it's a great, great deal that I miss her."

Peter was angry at the treatment Alex was getting. It was not that her doctors weren't doing all they could, but he was frustrated with how little they had to offer to treat Ewing Sarcoma.

Even more upsetting was the reason. Limited research dollars at one of the best pediatric cancer centers in the world, that is committed to discovering better treatments for Ewing Sarcoma, since it is rarer that others.

The Children's Hospital of Philadelphia's Oncology division Chief Dr. Steve Hunger understands Peter's anger.

"We need new and different approaches to cure the patients, like Alexsandra who are not able to be cured using the best available drugs we have today," Dr. Hunger explained.

"I said, 'should I be embarrassed to be carrying my daughter?' No. she's here to be saved, and it's tough," Peter added.

"That's particularly challenging because everybody from the start is figuring they're one of the ones who will be cured. Our job is to keep working until we can cure every patient," Dr. Hunger explained.

"I says, 'how much money do you need to do this?" Peter recalled.

It takes about a million dollars to setup a research endowment at CHOP devoted solely for Ewing Sarcoma.

Peter has accepted that challenge.

"I felt I had a job to do, something to accomplish now that could help someone else out," he said.

"I can't thank the family enough and I also hope this gives Peter and his family some peace to be doing this," Dr. Hunger said.

"We have a website up thru CHOP and I'm on a 7 year program with them to raise a million dollars," Peter said.

Peter's already working a scholarship fund at Alex's school and setting up another fund to help families financially devastated by pediatric cancer treatment.

He's surprised by donors' generosity, but he needs more.

"I learned something through all of this, you gotta find something good to grab on to that gives you some joy. It could be the smallest little thing but it gives you that energy to go to another step and keep moving in life," Peter said.

For more on how you can help visit the Alexsandra Bilotti Foundation for Childhood Cancer & Education website, email, Alex@Alexsandrabilotti.com, or call 215 651-727.

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