Though dealt an unlucky deck of cards in the game of life, David Fabus of Bethel Park remains upbeat.
Having lost two children, one of them to Diffuse Intrinsic Pontine Glioma, or DIPG, he continues to be passionate about finding a cure for childhood cancers. Today, less than 40 days removed from undergoing heart transplant surgery, he is also crusading for the Center for Organ Recovery and Education and organ donation.
“The heart has such a capacity for giving,” Fabus said, “I have gotten a second chance at life. I need to live so that we can find a cure (for DIPG) and to take care of my family.”
At 28, before he married his wife, Cindy, and started his family of six children, Fabus was diagnosed with idiopathic hypertrophic subaortic stenosis, an unusual abnormality involving the heart.
While Fabus experienced “scares” and was hospitalized several times for chest pains and irregular heart beats, he underwent a myectomy at the Cleveland Clinic in 2009 before his youngest son, Joey, was diagnosed with DIPG. With the assistance of a pacemaker, Fabus led a fairly normal life until he started experiencing a decrease in heart and liver function as well as other complications. When his heart rate plummeted to around 40 beats per minute, the battery in his pacemaker was replaced in May.
“It didn’t correct the problem but it helped,” Cindy said of the stopgap measure. “It bought us time as we waited for a heart.”
On July 7, while attending a family reunion in Cambridge Springs, Fabus received a call that a donor heart became available. A 20-year-old male, kept on life support until his organs could be harvested, had already been in the Pittsburgh hospital where Fabus would undergo transplant surgery. A 7 1/2-hour operation followed the next day at UPMC-Presbyterian.
“It was a roller coaster ride,” Cindy said.
Especially from an emotional standpoint, the couple experienced ups and downs. There were a lot of questions.
“I didn’t want to do it,” said David, noting he felt he was in good shape and the tune-up battery was working.
“It was a bad time but the right time,” Cindy said. “We weren’t 100 percent mentally ready for it.”
“Nor financially ready,” added David, mentioning he had been unable to work as an independent home remodeler because of his condition and because of Joey’s death.
The Fabus family certainly was not prepared for the call.
“You never expect it,” Cindy said.
“Shocked,” David added. “I wasn’t feeling ready. Here we were on the first vacation we have taken in a long time and the kids were having a good time.”
He feared the surgery might lead to a “negative outcome.”
“Our luck had been so bad. Losing Hannah, losing Joey, my heart,” he noted. “We couldn’t get too excited especially after what we had gone through.
And he thought he may die.
“That’s the biggest fear,” he said.
The thought of Joey allayed David’s apprehensions. Joey was 8 when he lost his battle with DIPG. He died Jan. 21, 2015 from an inoperable brain tumor. David also had his daughter, Hannah, as an inspiration. At 15 months, she died because of complications arising from a condition regarding her cyst-ridden kidneys.
“I know how much I struggled after surgery. Where you can’t get out of bed and all these needles and tubes are pulling at you,” David said of his 12-day hospital stay. “I sat there and thought to myself, ‘if Joey and Hannah can go through it, you could, too.’ What they went through was so much tougher. They went through hell.”
His eyes welled up with tears while recalling his son’s battle with DIPG.
“Joey kept fighting,” he said. “All I thought about in the hospital was ‘don’t be a wimp.’”
Fabus tackles his recovery with similar courage.
Once he starts a cardiac-rehab program, he anticipates his chest and shoulder muscles will strengthen. His stamina will also improve as he adjusts to a heart rate between 90 and 95 beats per minute, some 30 to 35 faster than what was set for his pacemaker.
On a weekly basis, Fabus undergoes a heart catheterization and biopsy. He is tested for rejection of his new heart. He cannot drive or work nor lift or pull. He wears a protective mask when out in public places to guard against infections and uses plenty of hand sanitizer to ward off bacteria. For the remainder of his life, he must take anti-rejection medications. Currently, he consumes 34 pills a day.
“It’s taking some time getting used to this heart rhythm. It’s like troops in my head marching. Eventually, I’ll get used to the heart rate,” Fabus said while seated at a picnic table in his backyard. “It’s crazy how uncomplicated things have been. I’m convinced Joey’s behind this. He is a part of the reason why I am doing so well.”
Time for living
At age 56, David hopes to be doing as well 20 years from now. By then, his youngest son, Nick, will be 33. His oldest son, Josh, is now 17 and his two daughters, Clarissa and Olivia, are well into their collegiate careers.
“Twenty years may not be enough,” said David, who lost his father when he was in his 40s. “With a new heart, I hope we can make it longer. There is so much to catch up on, things in life in general. To be able to go places physically and enjoy it. To do home projects that have been put off since Joey was sick. To be around when the kids get married and have grandchildren. I think I will be a great grandpa,” he added.
“I want to live long enough and enjoy life. I’m living for my kids, wife and the foundation.”
The Fabus family established the Joey Fabus Childhood Cancer Foundation in his honor. They have helped other families throughout their crisis with DIPG or other childhood cancers and they support research, specifically for DIPG. They have already sent substantial funds to Stanford University, where Dr. Michelle Monje-Deisseroth and her research team have been able to stop the tumor in mice. They have helped families throughout the country and the world with their plights and fights against all cancers.
Locally, the Fabus family has also been involved in fundraising events such as a night at the races, a flea market and the Joey Fabus Memorial Run. The 5-kilometer race and 1-mile fun walk will be held Sept. 16 at the high school. Race time is 9 a.m. Visit www.joeyfabus.com, www.jfccf.org or www.joeystrong.org to sign up for the race.
“It’s very humbling when you see all these people because they are all there for Joey,” David said. “He touched a lot of people. I still get comments from a lot of people about how we are an inspiration to them. But it wasn’t us. It was Joey. He was the strong one.”
With a strong heart, David is now the strong voice for Joey and others with DIPG. His pace is one day at a time; one hour at a time and while the family is not used to things going so well, its appreciative of everything.
“This new heart gives me the opportunity to do things that I could not do before. After what Joey went through, all I go through is nothing.
“I’ve gotten a new lease on life. A second chance,” David said. “Hopefully I can focus more on causes. I owe that to Joey and I owe that to the family’s donor that gave me another chance. For a family to go through losing a child for me to survive, I owe it to myself and them to give back to others.”