A Marathon Brain Surgery
Crossing the finish line of the Chicago Marathon at four hours and three minutes normally would have been a major milestone in itself for John Mordach. But finishing the 26.2-mile race on October 11 wasn’t just about achieving a personal first for the 50-year-old; it was about sharing in a struggle with his teenage son, who only five months earlier had to undergo emergency surgery for a brain tumor.
Before learning of his son’s condition, Mordach had been training for the marathon, his first. But then, headaches that had plagued his oldest son John Jr. worsened. A star swimmer who competed on his high school’s varsity team, John, Jr. had suffered headaches and episodes of nausea for about two years ago, but the Mordachs didn’t think much of it.
"We have four children, and anybody who is a parent knows that children have all sorts of symptoms – especially during their teen years when they are dealing with the stress of adolescence, schoolwork and athletics," Mordach said. "We had his vision tested and took him to see a gastroenterologist to rule out some of the more common conditions, and felt mostly reassured when the tests didn’t reveal any problems."
When the headaches became debilitating the week before Memorial Day, the Mordachs brought their son to Edward Hospital in Naperville where Mordach is the chief financial officer, and were stunned when physicians told them that John Jr. had a two-inch-by-two-inch tumor in his brain.
"No parents should ever have to experience the feelings of fear and anxiety that consumed us," Mordach said.
Before joining Edwards Hospital, Mordach worked for the University of Chicago Medicine from 1997 to 2006 as vice president of finance and knew the hospital has earned top recognition for its neurology and neurosurgery program. Wanting the best care for his son, he scheduled an appointment right away with David Frim, MD, PhD, chief of neurosurgery at the University of Chicago.
Frim concurred with the brain tumor diagnosis and admitted John Jr. to the University of Chicago Medicine Comer Children’s Hospital that day. The next day, John Jr. went through a full-body MRI lasting three and a half hours to determine whether the tumor had spread. It had not. The next day, Frim performed a six-and-a-half hour surgery on John Jr. to remove as much of the tumor as he could.
"The absolute pinnacle of hopelessness for a parent is watching your son being rolled into surgery," Mordach said. "Carol and I were extremely anxious and did a lot of praying for God’s help."
Several days later, the Mordachs learned that the tumor, a choroids plexus papilloma, was benign. Choroid plexus papillomas, which account for less than 3 percent of pediatric brain tumors, are almost always benign, but can result in serious complications by blocking cerebrospinal fluid and causing increased pressure in the skull.
"The surgery went very well, as we had expected," Frim said. "Although it was a highly technical procedure, the University of Chicago Medicine performs these surgeries often and is accustomed to achieving great results. We were able to move all of the tumor that we could see under the microscope and anticipate a very low likelihood of recurrence."
While Frim modestly downplays his role in restoring John Jr.’s health, Mordach isn’t convinced: "We consider Dr. Frim to be a hero and feel indebted to him and the entire staff at Comer who provided John with the highest quality care and helped us make the best of this terrible experience."
After John Jr. recovered from surgery and endured weeks of rehabilitation to improve his balance, his father decided to return to his training as well: "When I reflected on what John had been through, I realized I had to finish this marathon."
The grueling training schedule became almost symbolic for Mordach. Running six out of seven days and logging upward of 60 miles each week, Mordach says there were many moments that he thought about quitting. But then he thought about what his own son had endured.
"He lost 50 pounds in the hospital after his surgery from vomiting and went through intensely difficult physical therapy sessions to regain his balance," said Mordach. "He never gave up, so I knew I couldn’t either."
Mordach often spoke with John Jr. about the physical and emotional challenges of his marathon training. "John always encouraged me to keep with it, and I wanted to show him that I could pull it off and, in a way, to help restore some of his lost faith in his body’s abilities," he said. "Through John’s courage and strength, I found a strength within myself that I didn’t know I had."
During some of his longest training runs, Mordach says he contemplated not only his son’s struggle but also the intense training and dedication that prepared Frim for the day he would save his son’s life. "I am eternally grateful for all of the sacrifices that Dr. Frim made so that he could become the world-class neurosurgeon who saved my son’s life, and I was always cognizant that the sacrifices I was making during my training were miniscule compared to his."
In many ways, Mordach wanted to show his son how resilient the body can be, something that John Jr. lost when he was going through treatment. Now a high school junior, John Jr. is trying to lead a normal teenage life. He also is slowly making his way back into the swimming pool.
Because the tumor was in the emesis region of his brain, John Jr. continues to experience nausea from the trauma of the surgery and the swelling and fluid accumulation that are part of the healing process. A titanium plate, placed during surgery to help keep his skull together, will remain there for the rest of his life. He will have yearly MRIs to ensure he heals properly and that the tumor has not come back.
In addition to the nausea and the anxious moments during which John worries the tumor will come back and he’ll have to relive this ordeal, Mordach says his son has lost the sense of invincibility that is part of being a young person.
Wanting to find a way to give back, Mordach used the marathon as an opportunity to raise awareness and express his gratitude for Frim and his team. He and his wife, Carol, created the Mordach Family Fund for Brain Research to advance neurosurgical research at University of Chicago Medicine. The Mordachs started the fund with an initial $5,000 donation and have pledged to match all donations at 100 percent.
"Carol and I experienced the highest level of stress and worry, and want to be proactive in helping other parents avoid going through what we went through," Mordach said.
Frim commended the family for starting the fund: "The Mordachs are essentially paving the way for an easier path for patients and families struggling with a brain tumor diagnosis," he said. "It is the ultimate honor to have inspired that sort of generosity."
As he struggled through the last mile of the race, suffering through leg cramps and a swollen foot, Mordach says he battled a constant fear: "The image of my son being rolled into surgery and the fear that we wouldn’t see him come back out were with me constantly," he said. What kept him going is that he knew his son would be there at the finish line to cheer him on and celebrate in his success.
Update: John Mordach, Jr.'s story was originally written in fall 2009. In early 2015, the Chicago Tribune caught up with the 22-year-old with a feature on how he went from a brain tumor patient to captain of the UIC swim team. » Read the Tribune story. Free registration required.