Families endure hardships, but children the real heroes during journeys with cancer
By Todd Mishler
SLN Staff
Owen Yanke loves everything about superheroes, having attended multiple Comic-Con events in Chicago and Madison.
“Some of them are regular people who do amazing things and other ones have special powers because of something that happened to them,” said Owen, 13, whose fascination started with Super Grover and has advanced to Batman and many others.
“Meeting Stan Lee was the best,” Owen said about the former editor in chief of Marvel Comics. “We went to the question-and-answer panel and listened to him for about an hour. He’s an amazing storyteller who is just a regular guy.”
However, Owen is far from a regular guy. He’s one of thousands of kids who are diagnosed with cancer every year. Although the National Cancer Institute says that pediatric cancer death rates have declined by nearly 70 percent over the past four decades, it remains the leading cause of death from disease among children.
The Elkhorn Area Middle School seventh-grader, like many of his beloved make-believe characters, has overcome astronomical odds to persevere.
So has Keegan Denecke, an 11-year-old sixth-grader at Brookwood Middle School who participates in cheerleading and school musicals and is working on getting her Red Cross baby-sitting certification.
Her diagnosis and harrowing ordeal became the rallying cry and guiding force behind the Kisses From Keegan and Friends pediatric cancer foundation and its Super Hero Shuffle fundraising activities.
It’s an apt name for an event that encourages participants to dress in costumes representing their favorite fictional characters – the sixth annual event is scheduled Saturday, May 19, at Big Foot Beach State Park in Lake Geneva.
But the overriding theme is that kids like Owen and Keegan are the real heroes. Here are their stories and how they’ve conquered so much during those painful journeys.
Owen and his mom
Owen was 13 months old and taking his first exploratory walk through grass.
“We were walking around the park and he kept tripping,” Cyndi Yanke said. “After we got home I gave him a bath and noticed he was holding his right hand in a fist and wouldn’t open it. Then the next day he was holding it up close to him. We went and saw a pediatrician and she said he probably rolled on it and it was sore, so he was holding it up to protect it. A few days later it didn’t get better, so we went in for X-rays. Nothing was wrong with his hand.
“A few days later it was Easter, and when I went to take a picture of him with his Easter basket I could see that his face was dropping like he had a stroke or something,” she added. “The next morning we went to the local ER; they didn’t do anything, so we went to Children’s (Hospital) in Milwaukee and had a neurosurgeon in the room within an hour while he had a CT. There was a baseball-size tumor in the left frontal lobe. They were pretty sure it was cancer.”
Yanke said one positive was that she only waited about a week to receive the bad news, while many families don’t get a diagnosis for several months.
“My immediate reaction was we needed to go home because it was his bath time,” she said of those first horrifying moments. “They wanted to admit him, and I said no because it was bath time. He loved his baths and still does. I lost my mom to cancer, so I was in shock that it could happen to a baby; he was barely a year old. I took a deep breath, cried as soon as we got home and knew I’d do whatever I had to do to get us through it.”
Owen underwent his first resection, a 12-hour procedure, 10 days later. However, surgeons removed only 70 percent of the tumor because it was resting on an artery. But he recovered quickly and started treatment six weeks later.
“A few days before he started treatment is when the pathology came in,” Yanke said. “It was cancer and it had a very poor prognosis.”
It was an atypical tertoid rhybdoid tumor, a rare, fast-growing tumor of the brain and spinal cord.
“With tumor remaining, he had a 5 percent chance of making it six months and less than 5 percent of making it longer,” Yanke said. “He had two rounds of chemo followed by a stem cell harvest. Then he went to Chicago for intrabeam radiation, and thankfully they could remove the remaining tumor.”
Then he underwent three rounds of high-dose chemo, with stem cell rescue after each round. The treatment regimen lasted six months.
Owen survived those scary, tumultuous early months, but he’s been forced to clear several roadblocks since then, including seizures due to scar tissue buildup from the surgeries.
“After a year of no luck controlling them with medication, they suggested a hemispherectomy,” Yanke said of a procedure in which surgeons disconnected the two hemispheres while removing the left side of Owen’s brain when he was 3. “He’s been seizure-free since that day.”
Because of the tumor’s location, he suffers from weakness on his right side — he has no use of his hand and little use of that arm.
And in December they addressed another side effect of his treatments: Owen was growing too fast. His bone age was 4 years older than his actual age, so they inserted an implant in his right arm to slow down that process.
Needless to say, Owen and Cyndi have formed an inseparable bond – she and his father divorced when Owen was 4.
“It’s been a roller coaster since he was diagnosed,” Yanke said. “You live hour to hour, then day to day, then week to week, then month to month. You can’t look any farther ahead than that next MRI.
“I’m thankful he was so young because he doesn’t remember treatment,” she added. “He doesn’t remember his right hand ever working. He wakes up every morning at 5 like it’s the best day ever. He does wish more than anything that scientists will invent a chip that can be implanted in his hand and in his brain so his brain can tell his hand what he wants it to do, like Ironman.”
Yanke gave up a career as a hairstylist to become a home health aide. But the Elkhorn native’s priority remains caring for and taking advantage of as much time with her son as possible.
She belongs to a group called the 46 Mommas, a team created in 2010 and named to reflect the reality that on average each weekday in North America, 46 mothers are told that their child has cancer.
“We celebrate everything,” Yanke said. “Watching him grow up to be the person he is becoming has been an honor for me. Knowing what could have been and seeing what it is, it’s amazing. The future is still a hard concept for me to grasp. Hell, it’s hard for me to think he’s 13. He’s in uncharted territory. Few have made it as far as he has, so no one really knows what his future holds.
“He’s my life and I am his,” Yanke added. “He says he loves superheroes because I kept him safe and helped him survive, so I’m his hero. I reply back to him, ‘I got all my strength from you.’ I knew someone had to be in that 5 percent chance of making it, why not him?”
Indeed. And Owen continues his heroic journey with gusto.
“I don’t remember anything about being sick,” Owen said. “I don’t mind going to the doctor’s appointments unless I’m getting a shot; I don’t like shots. But it’s kind of fun because they are all so excited to see me.
“My momma is the best,” he added. “She is always with me making sure I’m happy. We do a lot of fun stuff. She is an amazing cook. I don’t know what I would do without her. We always say “Me and you, best family ever.’”
That also could apply to the Deneckes, who have lived in Genoa City since 2002.
Winning the race
Keegan was diagnosed with acute lymphoblastic leukemia (ALL) on Oct. 11, 2013.
The cancer presented itself in the 7-year-old as collarbone pain (osteomylitis) two days earlier. Blood work had revealed the disease after many years and X-rays found nothing.
“When we found out about Keegan’s cancer, we were devastated and we didn’t want to believe it was true,” said her father, Paul Denecke, a project manager for Rabine Paving. “Sadness, fear and anger were all strong feelings. Keegan’s siblings were all different ages and dealt very differently with her diagnosis and journey.”
Gavin, 22, graduated on May 12 with a nursing degree from UW-Madison; Brendon, 17, will be a senior at Badger High School next fall; and Jillian, 9, is finishing third grade at Brookwood Elementary.
There was no evidence of the disease after 30 days of treatments, but the latter continued until just before Christmas in 2015 because of the prevalence of the cancer returning.
During that time, Keegan endured a pic line, port-a-cath, 19 lumbar punctures (spinal taps in which equal amounts of fluid is removed and chemo is placed) and two bone marrow aspirations, not to mention 26 months of chemo — intravenous, oral and spinal.
The many side affects included kidney stones, a large blood clot and a seizure.
“She also lost her hair three times, which was very difficult for her,” Denecke said.
He and/or his wife, Carey, take Keegan to her checkups, which occur every three months.
“She saw a psychologist throughout her treatment and still does to this day to work with her on coping,” Denecke said.
“Treatment was not easy,” Keegan said. “It was really hard because it made me sick. The lumbar punctures made me really sick, too. I really struggled getting my port accessed. I also didn’t really like giving myself two shots a day in my stomach for almost two years after my blood clot. Dr. Jeff (Karst, the psychologist) really helped me.”
Denecke said that the family benefited from a strong support system.
“As we went further into our journey with childhood cancer, fellow cancer families became a source of strength for us as we did for them,” Denecke said. “Keegan is a strong-willed and determined child, but during treatment she had her strengths and struggles. Thanks to her amazing team at the MACC clinic she made it through.
“We always will worry because there are many things kids will deal with later in life due to their treatments for childhood cancer, including other cancers and more,” he added.
However, that hasn’t stopped the family from giving back, and that features the Super Hero Shuffle, a golf outing in September and Sunday Fundays at Timber Ridge a few times a year.
Darlene Huber is a board member of the Kisses From Keegan & Friends foundation and a committee member for the sixth annual Superhero fundraiser.
“After Keegan was diagnosed, we switched gears and rallied around the family and a new cause,” she said. “We wanted to help and make a difference.”
Not only did organizers’ goals change after Keegan’s diagnosis, but they developed a new name and theme partly based on the Denecke family’s trips to Milwaukee.
“Nurses and guests up at Children’s Hospital would dress up to show the kids that they’re strong and brave and superheroes for overcoming their battles with cancer,” said Huber, and the Lake Geneva area group adopted it. “We’ve also worked with myTeam Triumph, which works with kids and adults with disabilities be able to participate in and finish a race. They push their wheelchairs or bikes across the finish line … it’s about these folks feeling a sense of accomplishment.”
About 50 myTeam Triumph members are expected to attend the shuffle, which typically draws 200 to 300 runners/walkers to Big Foot Beach.
For more information about the Super Hero Shuffle or the foundation, visit www.kissesfromkeegan.org.
