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Tuesday, November 21, 2017

ANTHONY CONTI: Fighting pediatric cancer

Anthony Conti, Nitalia Conti, The Purple Society, Pediatric Cancer, support for families dealing with cancerNitalia Conti distributed blankets because she knew firsthand that chemotherapy treatments make you cold. She walked the halls of the oncology floor to reassure other patients fighting pediatric cancer.

The Conti family of Gilbert lost 14-year-old Nitalia to the disease in January 2011. Soon after, they formed The Purple Society, a foundation that supports families around the world in fighting pediatric cancer. Anthony Conti talks about empowering parents, searching for treatment options and the legacy his daughter left behind.

The Purple Society helps families fighting pediatric cancer with specialized treatments and clinical trials. Don’t doctors and hospitals fill that role?

Traditionally, you rely on the hospital to provide all the services you need. But they just don’t have all the resources. We’re losing so many children every year. That’s where our foundation comes in. That’s where we try and change things.

Some would say that researchers hesitate to test new treatments through clinical trials on children, who may not fully understand their choices or the possible outcomes.

Living through the whole system with my daughter Nitalia, as a parent, you say yes, I agree with that; they are vulnerable, they need to be protected. But here are children that we know are in desperate need of help. We need to try everything that’s in our tool belt to try to save them.

What kind of resources are most important for a family to access after a child has been diagnosed, and how do you help?

Parents need to understand that when they get that diagnosis, there are options. Your first decision on treatment is unbelievably important. That dictates the entire life cycle of the treatment for the child. You need to be educated.

Where to begin?

They need to be able to look at multiple hospitals, multiple cancer centers in order to get the best treatment. Clinical trials are not available at every hospital, so you really need to know that. We provide that service.

The shock of that first diagnosis, of course, leaves parents overwhelmed.

When you’re told your child has cancer, your world comes crumbling down. You realize your life is a deck of cards that’s just ready to fold. You need people that have been there, that can stand up and say, put the brakes on a second, we need to really step back, regain composure and figure out what needs to be done. I can tell you from experience, it’s very hard to do.

At what point along the way does The Purple Society offer support to families?

As early as possible. We try to help them through those emotions and help them through each of those steps. You have to be a fighter. And if you can’t do it, we’re here to help you fight. We’ll sit in that room with your medical team, we’ll sit in that room with all the research. We print out packets of information for families to take to their medical team. Because if you’re not gonna fight, and I’m sorry to say this, I don’t want to sound negative, but if you’re not gonna fight for your child, no one is.

What do you recall about the moment you and your wife, Suzann, learned the news about Nitalia’s illness?

I remember my wife and I standing in the emergency room and getting the diagnosis and Nitalia was fine. She was so perfect. She was sitting in the other room and laughing, just being her normal self. The first phase of a childhood cancer diagnosis is fear. I remember the wind being knocked out of me. I literally felt like I had to take a knee.

Nitalia had just gone in for a routine eye appointment one morning. By that evening, you received devastating news.

They dilated her eyes and saw something in the back of her eye. She got an MRI and then we went right around the corner to a little Italian place to have dinner with the family. During that dinner we got a phone call, and it wasn’t even an hour from when she had her MRI and they told us we had to come back to the hospital immediately. They saw a mass in her brain. Your world just crumbles.

Nitalia left your family with a mission and a sense of purpose. How did she inspire others?

She knew that she had a disease that 99 percent of the time takes your life. And she was still OK with going into a PICU (pediatric intensive care unit) and talking to kids, saying, “Hey guys, listen. Don’t be scared of that radiation thing,” or “When you get chemo, don’t be scared of that. When you have your port placed, here’s what’s gonna happen.” It actually became just normal for our family to be that way. That’s just who she was.

Has supporting other families through The Purple Society helped your own family in trying to heal?

This is what Nitalia left us. This is her legacy; this is what she wanted to do. I feel closer to Nitalia when I’m in a cancer unit—whether it’s Phoenix Children’s or Cardon, or CHOPS [Children’s Hospital of Philadelphia]—walking through those rooms and seeing those kids. I can see my daughter in their eyes. I know that she’s there with me. She had a way of touching people. All of this has been created through her dream. It’s not me, it’s not my wife, it’s not her sisters. It’s Nitalia. From the beginning, it was her.

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Vicki Louk Balint

Vicki Louk Balint covers health issues for magazine.

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