A home away from home: how one oncologist’s vision changed the world

The scenario is unthinkable for any parent: your child is diagnosed with cancer, and you need to travel out of state to get him the best treatment.

Where will you stay, and how will you pay for it? Who will take care of your other children?

These questions became a reality for the Garinis family of five last fall after learning their 6-year-old son Constantine had a brain tumor.

They left their home in Long Island, New York, where dad Aristidis serves as a Greek Orthodox priest, bringing Constantine to receive treatment at Children’s Hospital of Philadelphia. For the first several nights, they had housing paid for through a nonprofit grant, but expected to soon dip into their savings to pay for a hotel.

The Garinis family learned of a nearby Ronald McDonald House, a place that offered lodging and services for families, along with a community of other parents with children receiving treatment for serious illnesses. It was full. They were put on the waitlist, but received good news just a few days later.

“We got a call from (the House), and they said a room opened up,” says mom Lea Garinis. “That was on Constantine’s birthday. We’re religious people, and we don’t believe in coincidences.”
 

The House serves over 1,300 families like the Garinises per year, and the need is growing. For every family staying at the House, four others must be turned away due to lack of space, resulting in thousands of families – in the Philadelphia area alone – being put on wait lists every year.
 
Soon, however, more families with children facing the fight of their lives will have access to the family-centered support provided at this House and around the United States.
 
A donation of $100 million from AbbVie to nonprofit Ronald McDonald House Charities (RMHC) is being used to build new family-centered spaces and more than 600 new guest sleeping rooms at 32 Houses across the U.S. RMHC helps families with sick children stay together, and close to the medical care their children need at leading hospitals worldwide.
 
Learn more: AbbVie is working with nonprofit partners that help children facing serious illnesses and those who care for them.
 
This donation is helping fund an expansion in Philadelphia – the site of the first-ever Ronald McDonald House – which will be completed in summer 2019 and increase sleeping rooms from 45 to 127.
 

The House opened in 1974, the spark for what would eventually become a global network of Houses and support services with over 275 chapters in 64 countries and regions. 
 
Its co-founder: Dr. Audrey Evans, 93, a pediatric oncologist whose pioneering career is defined by her commitment to healing the whole patient, including the family.
 
Dr. Evans’ approach may have been unconventional in the 1960s and 70s, but, according to the American Medical Association Journal of Ethics, patient- and family-centered care is widely adopted today, changing how hospitals provide care, increasing staff satisfaction, decreasing costs and improving patient outcomes.

‘What I really need is a home away from home’

Soon Dr. Evans got her wish, with help from the Philadelphia Eagles football team. The Eagles were already fundraising to support Kim Hill, the daughter of Eagles player, Fred Hill. Kim was undergoing treatment for leukemia at the nearby St. Christopher’s Hospital for Children. The Eagles pledged $1 million to a new oncology floor at Children’s Hospital of Philadelphia and, during meetings related to the donation, Dr. Evans told Eagles’ General Manager Jimmy Murray about her vision of opening a home for families. She asked for help raising an additional $34,000 to buy a former fraternity house.

The Eagles approached and worked with McDonald’s leaders to hold a week-long fundraiser collecting all local profits from the sale of Shamrock Shakes. The plan worked, and the House that Dr. Evans dreamed of opened in 1974. McDonald’s relationship with the House grew over the years, and in 1984 Ronald McDonald House Charities was officially born.

‘We’re just one story’

Rachel and her husband Greg discovered their baby’s diagnosis while living in Okinawa, Japan, where Rachel was stationed on active duty with the U.S. Navy. Without surgery, the Condons were told, their son would be paralyzed from the waist down.

They quickly flew back to the States for surgery with their 2-year-old daughter Maggie, a 30-hour trip during which they saw three sunsets – and worried through each one about what would happen once they landed.

The Condons arranged to stay in a short-term rental, allowing Rachel to recuperate after surgery and spend the required 12 weeks of bed rest before a planned delivery. But a hospital social worker referred them to RMHC, where the entire family would be cared for and comfortable.

Between nightly activities for Maggie, home-cooked meals and plenty of other kids to play with, Rachel was able to rest while feeling reassured that her daughter was happy and entertained.

In mid-December, Maverick was born with movement all the way down to his toes and without any signs of paralysis. He was released from the hospital five days after he was born, and is doing well.

“We feel incredibly grateful to Children’s Hospital of Philadelphia and Ronald McDonald House for keeping our family moving in such a positive direction,” Rachel says. “This was a miraculous outcome that we never dreamed of.”

Dr. Evans recently visited the construction area of the current Philadelphia House, an 1895 mansion that was first expanded in the mid-90s. During the tour, Dr. Evans paused to speak with every child and family she saw, including Constantine Garinis’ younger siblings Antonia, 4, and Demetrios, 2, playing together while their big brother received treatment at the hospital.

After staying at the House for two months, the Garinis family returned to New York. With his tumor gone, Constantine is adjusting to being back in school.

His mother is confident that staying at the House aided Constantine’s recovery, lowering his stress and allowing him to interact with his siblings and other kids in a safe environment away from the hospital.

Now back at home, Constantine is adjusting to a new normal, including some days where he feels unwell and visits the hospital and others where he’s able to play with his siblings like a normal kid.

“We remind ourselves that there has been improvement from a month ago,” Lea says. “We keep trying to move forward.”
 

Mary Kathryn Steel
Email: mk.steel@abbvie.com
Call: + 1 847-937-4111

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