Provided By Parents, For Parents.

Lainie's Angels: Everything You've Ever Wanted To Know

On March 19, Lainie’s Angels founder Stathi Afendoulis sat down with the camera to discuss the beginning, the present, and most importantly, the future of Lainie’s Angels. Here’s what he had to say:

Transcript:

Lainie’s Angels came about with the passing of your daughter Lainie, who fought Ewing’s Sarcoma for nearly 3 years. Now the foundation is known for creating programs that support parents dealing with the daily struggles of pediatric cancer and blood disorders. What initially inspired you to take on the responsibility of implementing these programs ?

Pediatric cancer units are busy places, kind of like beehives, buzzing with activity. At the center of this hive is the nurse’s station. It’s the place everyone goes to; parents, doctors, social workers, child life specialists, visitors. Everything goes through the station…at least in the daytime.

At night, it takes on a totally different feel. The lights dim and the whole unit darkens, except for the nurse’s station. It was there during the long nights of Lainie’s treatments, that myself and other parents would huddle together, as we were unable to sleep. We shared our experiences, traded stories about treatments, home, our other kids, jobs, and tried to remember the last time we say our spouses. It was my favorite time of the day, and it had a profound effect on me. I realized in those late night talks how much support I received - simply by sharing experiences with parents who were just like me.

Unlike our kids, who got treatment and attention all day long, we parents were expected to listen, learn and make life-altering decisions on a daily basis, and the only support we had was each other. That doesn’t mean the health care team didn’t take care of us, but unless you’ve living it, it’s hard to help. I’m not sure when the exact moment of inspiration came, but parents helping parents through their shared experiences seemed like a good idea, and I decided shortly after Lainie died, that the focus of her foundation would be just that.

We know that Lainie’s Angels creates parent advocate programs, but what exactly do those programs do?

The first time I presented our mission of parent advocacy, and explained the program as “parents whose children have had cancer, helping other parents whose children are currently being treated for cancer,” a friend of mine who had recently lost his daughter, asked me “why would I want to talk to you?”

My answer to him was, “why not?”

If you were a young soldier, going in to battle for the first time, wouldn’t you want to talk to one whose already been there? Wouldn’t you want experienced advice that might save your life? Or would you just rather talk to someone whose read a lot of books about warfare and take their advice. I know who I’d want to talk to.

Our program focuses on peer support, and what I call “compassionate care” provided by parents who have been there, and done that. By sharing their experiences, our advocates help other parents cope with the incredibly difficult task of caring for a critically ill child, while trying to keep the rest of your life in order. Our service is unique because it’s provided by parents, for parents, and I call it compassionate care because parent advocates don’t give medicine, don’t do therapy, don’t do nursing; we share our experiences to help each other find solutions to everyday problems and deal with the emotional ups and downs of caring for a child with cancer, while also caring for the rest of our family’s needs. This type of support provides trust and credibility for parents, because it comes from someone who has experienced what they are going through, first-hand.

Lainie’s Angels has been around for 11 years now. What have you accomplished in that time period, in terms of establishing programs and expanding outreach?

Parent advocacy has been around a long time, over 40 years now. It started at Hasbro Children’s Hospital in Rhode Island, and moved on from there to other hospitals. Our goal in the last eleven years has been to expand this program to as many hospitals as possible. Currently, we have funded programs in Chicago at the Lurie Children’s Hospital; Mt. Sinai Medical Hospital in Manhattan and The Hospital for Sick Children in Toronto. We’ve also provided support to the Golisano Children’s Hospital in Rochester, New York, which is home to the second oldest existing parent advocate program in the United States.

Growth has been continuous, and where we don’t have a hospital program, we have outreach and education through our website and social media. We have been contacted by parents from around the world looking for help and advice, or just someone to talk to about what they are going through. It ‘s in that area of guidance that we’ve grown the most. We talk to people from India, Australia, Europe, Canada and the U.S, helping them cope with childhood cancer.

What does the future hold for Lainie’s Angels?

The future for Lainie’s Angels is about pursuing opportunities and over-coming challenges. Our goals are simple. We need to grow as an organization by attracting the finest professional management to lead us into the 21st century. We’ll continue to develop new programs and train parent advocates in our existing programs as well. Financially, we need to secure stability through expanded grant making and foundational and federal support of our programs.

Finally, we want to create a brand new certified peer counseling program that will help enhance our reputation and influence among childhood cancer organizations with the development of certified peer counselors who will serve the families of children with cancer and blood disorders.

How can people who are interested in supporting Lainie's Angels help your mission?

Our success in the last 12 years was made possible by the donations and contributions of caring individuals who believed in our mission of helping parents help their children. We are grateful to all of our supporters, and ask that they continue to help us in 2013 and beyond.