LAKE ANN — Today about 60 people will gather behind Kendra Gilbert’s Lake Ann home to witness an event that seemed out of the realm of possibility seven years ago.
Gilbert, 29, will marry John Nuske, her best friend and longtime boyfriend.
The date, Sept. 28, will be an anniversary the pair won’t soon forget. On the same day seven years ago Kendra was diagnosed with a brain tumor that carried with it a grim prognosis.
The couple will stand in front of friends, family and doctors all of whom have been rooting for them for years. They are people who helped the couple’s relationship grow even while Gilbert fought the inoperable brain tumor. They are the people who helped Gilbert and her family stay positive even when she became violently ill because of chemo treatments.
And they are the same people who helped lead them to a clinical trial in Texas that seemed to be the last option to stop the tumor that was unaffected by previous treatments.
“That’s a great thing,” said Dr. Stanislaw Burzynski, the doctor who developed the experimental treatment that killed the walnut-sized tumor that once threatened Gilbert’s life. “The doctors were telling her she probably doesn’t have more than a year to survive when she came to us.”
When Burzynski received an invitation to Gilbert’s wedding, he and his wife happily sent a confirmation that they would attend.
“This is what cancer treatment should be all about,” Burzynski said of visiting survivors like Kendra when they celebrate life’s big events. “That’s why we feel it is very important to be supportive of these people.”
Burzynski is the inventor of a technique of treating cancer that uses a type of gene therapy to target life-threatening tumors in patients who have been told they have no other options.
When Randy and Melissa Gilbert first took their 22-year-old daughter to Texas for treatment, they were willing to do anything they could to help her survive. Doctors at the Mayo Clinic had given the couple predictions of how long Kendra would survive, information they refused to tell her and she refused to ask. And traditional chemo treatments failed to slow the tumor’s growth.
“We just wanted to take it one day at a time,” Randy said. “You just don’t go there.”
The couple already had battled both insurers and doctors over their daughter’s treatment. And Randy closed his construction business to make more time to find Kendra the best treatment available.
He still remembers the day he and Kendra sat in front of Burzynski for the first time. The doctor told the father that the treatment doesn’t work for 30 percent of patients.
”What I heard was it would have some effect on 70 percent of patients,” Randy said.
The pair were sent home to Michigan with a treatment regimen that included mixing and changing bags of solution in an automatic injection system that fed a constant stream of cancer-fighting drugs into Kendra’s system through a port in her chest. For 16 months, while dating Nuske, Kendra had to change the solution bags every four hours, 24-hours-per day.
”Pretty much after I went through all that, I knew he was going to stay,” Kendra said, smiling at Nuske.
The couple had been dating for a little more than a year when Kendra was diagnosed with cancer. When the news came, Nuske knew he couldn’t leave her side nomatter what the prognosis.
”She’s my best friend,” Nuske said. “That wasn’t even a thought. “I knew pretty early, she was the one.”
Despite the intense treatment that involved carrying a bag with a pump and fluid everywhere, Kendra continued to live her life. She figured out how to snowboard with the pack. Unlike chemo treatments, Burzynski’s therapy has few side effects.
And a few months into the treatment cycle, doctors had good news.
The tumor that once caused seizures and numbness in Kendra was shrinking. And within the next 12 months, it was gone.
Since then, the Gilbert family has been trying to get the word out about Burzynski’s treatment. They’ve sponsored a few showings of a film about the method that still is held up in FDA trials.
They will host a screening of the second film about Burzynski Oct. 21 at the Bay Theater in Suttons Bay. For more information, call the theater at 271-3772.
Meanwhile, the couple is trying not to sweat the little stuff when it comes to their wedding. They gave up worrying about the little things seven years ago.