Motivation to help others often can come from some pretty unlikely sources.
Dave Renk, superintendent at Lookaway Golf Club in the Philadelphia area, and his wife, Jackie, never thought that motivation might come from one of their own children. As fate would have it, their desire to serve others stems from an eagerness to keep alive the memory of their son, Matt, who died five years ago after losing a battle with brain cancer. Since then, the foundation they established in his name has raised nearly $500,000, largely through fundraiser golf tournaments, to help other families affected by childhood brain cancer. Although establishing and helping run the Matthew Renk Foundation and its annual fundraising events is an emotionally taxing reminder of their son's death, the need to help others runs even deeper for the family, says Dave Renk, superintendent at the private club in Buckingham since it opened in 1997.
"While we were in and out of the hospital with Matt, we discovered there were few resources to help families get through things like that," Dave said. "After Matt passed away, we thought about ways to help other families who are going through the same things we went through.
"Matt was the kindest, smartest, most compassionate kid. I know everyone says that, but he was, and because he was like that, it's made it so easy to do this."
This year's tournament, which was held Sept. 29 and included Lookaway members and their guests paying $300 per person to play their own golf course, raised $106,000, bringing the five-year total to more than $350,000. Add in donations and other fundraisers, and the 501c3 foundation has taken in almost $450,000 since 2011, said Jackie Renk, who manages the golf tournament. Some of the proceeds have come through sales of the Think Grey (as in gray matter) clothing line the foundation launched to help raise awareness of brain cancer.
Applications for funding are handled through the social work team at the Children's Hospital of Philadelphia, who pass along requests to the foundation. Eligible expenses might be as basic as food during hospital stays or gasoline during the many trips to and from treatment, or in extreme cases can include children's funeral expenses. The foundation also started an oncology relief fund at the Children's Hospital of Philadelphia through which hospital staff can distribute vouchers to families on site for expenses such as food and parking. The foundation also donated $120,000 to help build a 14,000-square foot respite garden on a sixth-floor rooftop that serves as a retreat and a place of reflection.
"I would sit in the hospital at night and think about what I could do to give back," Jackie said. "We started thinking about starting a foundation, and during that process of not being able to sleep, I thought there has to be a place where people can go to get out of the hospital. When Matt was going through this, there was no place to go to sit and relax other than the cafeteria.
"You need to have a place to get out and get some fresh air, to regroup. They didn't have any place like that when we were going through this.
"Before Matty passed, I told him 'you have courage and a drive in you, and I am going to keep that alive.' That's a promise I made to him that I was going to keep his memory alive."
To date, the foundation has fulfilled about 70 requests for help.
"You just can't imagine the emotional impact something like this has on a family," Jackie said.
"We don't deny anyone."
Like most 15 year olds, Matt Renk grew up a pretty happy-go-lucky kid. And like many boys, he dreamed of following in the footsteps of his father.
"He loved being outdoors. All he wanted was to be a golf course superintendent," said Dave. "Since he was 5 years old, we lived on the golf course. He's been mowing greens here since he was 6 or 7. He wore khakis, a golf shirt and a radio on his belt. He had the whole superintendent uniform going and was the superintendent lookalike when I wasn't here."
While in remission at age 14, Matt volunteered with his father for the 2009 Walker Cup at Merion Golf Club and eagerly looked forward to returning to Ardmore for the 2013 U.S. Open. That return trip never materialized.
Toward the end of his seventh-grade year at Holicong Middle School in 2007, Matt began to complain of frequent headaches and exhibited signs of what his father described as overall sluggishness. Everyone dismissed the signs as stress associated with the end of the school year, but when the headaches worsened and Matt began experiencing bouts of nausea and vomiting, it was time to see a doctor.
Eventually, a CT scan conducted at Doylestown Hospital revealed a brain tumor. Doctors officially diagnosed Matt's condition as medullablastoma, a form of brain cancer characterized by a rapidly growing tumor in the rear and bottom of the skull that often metastasizes to other parts of the brain and spinal cord by spreading through spinal fluid. However, medullablastoma also has a five-year survival rate of 65 percent, according to the American Cancer Society, so there was room for cautious optimism. Doctors warned the Renks, however, that if a patient goes into remission and the cancer returns, it typically does so quite aggressively, and the chances for survival are reduced dramatically.
The most common brain cancer in children, medullablastoma accounts for about one-fifth of all childhood brain tumors, according to St. Jude Children's Research Hospital in Memphis, a leading provider of research and treatment of cancer in children. In the United States, as many as 500 children are diagnosed with medullablastoma each year. Children under age 16 are especially at risk, and it occurs slightly more frequently in boys than it does in girls.
The day after he was diagnosed, Matt was in surgery at the Children's Hospital of Philadelphia. Doctors operated for four hours, but because of location of the tumor within the cerebellum were unable to remove all of it.
Soon, Matt began an intensive radiation protocol recommended by researchers at St. Jude's.
Since he was 5 years old, we lived on the golf course. He's been mowing greens here since he was 6 or 7. He wore khakis, a golf shirt and a radio on his belt. He had the whole superintendent uniform going and was the superintendent lookalike when I wasn't here."
The program included treatment five days each week for six weeks, followed by chemotherapy sessions ranging from 18 to 25 days per month for four months. During which Matt had all the signs of a cancer patient undergoing treatment. He'd lost his hair, a great deal of weight and often was physically ill.
"It was all the things you hear about with chemotherapy," Dave said.
Treatments caused Matt to miss almost all of his eighth grade year in school, but the news of remission made it worthwhile. Soon, he was back out on the golf course, working with dad and playing golf with mom, and trying to make up for all the lost schoolwork.
"Whatever we could do to get him back to doing the things he liked doing, that's what we were doing," Dave said.
Being there for his son in his time of need was important to Dave, who said he couldn't have done that without the support of his club and his crew.
Members and administrators at Lookaway were supportive throughout the ordeal and continue to be there through support of the annual golf tournament. A total of 80 percent of the available slots in the tournament sold out the first day. Sponsors and donors also stepped up to the tune of more than $50,000.
Renk relied heavily on his assistant Paul Passanante while spending time at the hospital with his son throughout the treatment process.
Other superintendents in the area offered help in the way of manpower assistance and equipment, including Greg Hufner, then at Jericho National Golf Club in nearby New Hope, and Rick Christian at Pine Valley.
"I was in constant touch with the club and assured them that everything would be taken care of," he said. "Paul handled everything."
"The support we received from friends, neighbors, family and other superintendents was tremendous."
Knowing the course was in good hands was a relief for Dave, since Matt still was going to CHOP every three months for an MRI to make sure the cancer had not returned. Each session would take up to three hours, leaving no stone, or cancer cell unturned. His remission lasted 15 months. Then came a day in June 2010 that Dave and Jackie probably never will forget. They were with Matt's oncologist to review the results of his latest MRI."I could tell by his face that the tests weren't clear," Dave said. "The cancer was back, with tumors in the front of his brain, the back of his brain and throughout his spine. Matt was freaking out, his mother and I were freaking out. We didn't know what to do."
The Renks returned to the hospital to prepare for another round of intense chemotherapy treatments, but Matt, with a vulnerable immune system, developed pneumonia before the next program could begin. Weakened and unable to breathe on his own, he soon was placed on a ventilator. On Aug. 10, 2010, six weeks after the cancer had returned, Dave and Jackie were faced with a decision no parent should have to make.
"He was on about 20 different medications and there were tubes hanging everywhere," Dave said. "They told us we could keep him on a ventilator, but that there was no way he was coming out of this.
"It was myself, my wife, Matt's twin (Tom), one nurse and one doctor. It was very dignified; as dignified as that can be. The ventilator was quietly disconnected, and he just stopped breathing, and that was that."
Five years later, the loss still weighs on the Renks: mom, dad, twin brother Tom (now 20) and younger brother Andrew, who was 10 at the time.
"We are a strong family, but it never goes away," Jackie said. "Matt kept a happy-go-lucky attitude throughout the whole thing, but nobody is the same. You don't bury your brother and just go on with your life.
"It never goes away. There is nothing like losing your child. It's the worst thing in the world."
Although Matt is gone, his memory lives on through the foundation bearing his name.
"We have to keep moving on and fighting. It's what Matt would have wanted," Jackie said.
"Matt was an old soul. He was the type of kid who would help anyone no matter what.
When he was in the hospital and was so weak and thin that he could barely walk, when he would get in the elevator, he'd still hold the door for someone when he couldn't walk. That's just the type of kid he was."
Helping others has helped the Renks heal, as well.
"If we didn't have this foundation, we would all be a lot worse off," Jackie said. "It's not easy to read these requests for help. When you read the whole story, it's tough, but it's the most rewarding experience I've ever had in my life."