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He has the healthy, lanky frame of many a teenage boy, still filling out after high school. Dark blonde hair tops a thoughtful face and his green eyes light up as he talks about his hobbies (guitar, hockey, snowboarding, snowmobiling, wakeboarding) and where life has taken him.
Dustin just finished his freshman year at Northland International University in Dunbar, Wis., where he played on the school’s club hockey team. Home for the summer, he’s working as a certified nurse’s aide at the Virginia Convalescent Center (he obtained his CNA certification as a junior in high school) and just got back from a weekend in the Boundary Waters with his younger brother Derek and some cousins and friends.
The third child and first son in a family of four kids, he has plans to complete paramedic training. By all appearances, he is an all-American kid, looking forward to a bright future.
Just the fact that he has a future, that he just celebrated his 20th birthday last Saturday, that he is as active as any young man his age, is in fact no small miracle. It is really a remarkable story.
What’s wrong with Dustin?
I t was around Thanksgiving in 1993 when Jack and Mariann Kunnari’s seemingly healthy twoand a-half year-old son fell ill with what seemed like a particularly nasty strain of the flu. As the sickness lasted through Christmas and into the new year, the young couple began to suspect that it might be something much worse.
Dustin had terrible headaches and vomited violently, continuously, and one day as he was walking, they noticed that he kept falling to one side, that his sense of balance was off.
“I told (Jack), ‘I know you’ll think I’m crazy, but I think Dustin has a brain tumor’,” Mariann said. “I had come across an article about brain tumors in Family Circle magazine that had a checklist with it, and as I went down it, it was yes, yes, yes. Oh my goodness, that’s my son.”
That was in February of 1994. Jack had a doctor’s appointment to complete carpal tunnel surgery and rather than set an appointment for Dustin, the worried father brought his young son with him and told the doctor about Dustin’s symptoms and what they feared it was. The doctor suggested an immediate MRI. “They told me it would take a half-hour,” Jack said. “And it went on and on, and nobody was telling me anything. I knew something was drastically wrong just from the nurses’ faces.”
Finally, a neurosurgeon came in and told him the news: that Dustin had a golf ball-sized tumor between his brain stem and cerebellum and that surgery would be needed as soon as possible. The numbing news triggered a whirlwind of events that would forever change the Kunnari family’s lives.
D ustin underwent major brain surgery at St. Luke’s Hospital in Duluth on the last day of February in 1994. A shunt, which remains to this day, was inserted prior to the surgery to relieve the intense pressure from the fluid buildup on Dustin’s brain. During the surgery, about 75 percent of the tumor was cut out. But removing the remainder of it was too risky in such a sensitive area and residual parts of the tumor remained along the brain stem.
“I was so excited that he made it through surgery, I was almost jumping up and down,” Mariann said.
But that joy was soon squelched by the sobering reality of the fight ahead. The tumor was identified as medulloblastoma, a malignant highly-aggressive brain cancer that most commonly attacks children. It is the most common type of brain tumor amongst children, generally developing before the age of 10. Amongst babies and toddlers, it is particularly deadly.
While Dustin recovered well from the surgery - the surgeon pushed the nurses to get him back on his feet the day after - other than uttering a few sentences immediately after waking from it, he didn’t talk for several days.
“I can remember getting out of surgery,” Dustin said. “I just remember how miserable I felt and learning to walk again.”
Meanwhile, his parents were finding out what follow-up treatments were available. The prognosis was dim.
“Typically, radiation is used for brain tumors,” Jack said. “Chemotherapy doesn’t penetrate the blood-brain barrier well. But the radiologist told us basically, ‘if we radiate your son’s brain, he will be a vegetable.’ He said to picture a coated wire that has been stripped. There is no protection at that age against permanent damage to the brain.
“So in our minds, that was an absolute ‘no’ immediately.”
Their family doctor recommended an experimental clinical study at the University of Minnesota called CCG-9921 (Multiagent Chemotherapy and Deferred Radiotherapy in Children Less Than 36 Months of Age With Malignant Brain Tumors), a new program that tried to hold the tumor at bay with chemotherapy, deferring radiation until the child was old enough to be able to handle it.
“We felt we didn’t have any alternative,” Mariann said. “So we brought him straight (from St. Luke’s to the University of Minnesota Medical Center).”
An untenable treatment
D ustin was immediately submitted to a barrage of tests upon arrival to the UMMC, many of which seemed unnecessary to his mother.
“We felt like our son was a guinea pig,” Mariann said. “It was a nightmare. He was so miserable.”
The battery of tests was to get Dustin’s baseline for his hearing, balance, eyesight, IQ, etc., “so they could determine what he was going to lose,” Jack said.
One nurse, while running a test, bluntly told them the truth about the experimental treatment.
“She said, ‘They’re just looking at his tumor’,” Jack said. “‘They’re going to kill it. They don’t care about anything else but killing that tumor.’
“That hit home. Every time I asked the doctors anything specific about the drugs he’d be on, the cure rate or anything else, they’d avoid answering the question.”
When pressed about the success of the treatment, one doctor promised to come back with an answer, confident in the success of the program. He sheepishly admitted the next day that one boy did “pretty well” and that the survival rate was only 28-30 percent at the best.
Finally, after all the tests were completed, the Kunnaris were handed a consent form to sign to get Dustin in the program. What they read was disheartening.
Part of the second paragraph read as follows: “The purpose of this study is to learn whether intensive chemotherapy following surgery can be used to treat tumors and therefore delay or avoid radiation therapy, and to determine the toxicities of two different drug programs.”
It further documented numerous side effects, including diminished IQ and learning abilities, hearing loss, bone and joint pain, kidney damage, acute nausea, internal bleeding, stunted growth and the possibility of developing secondary cases of cancer.
“I asked another doctor where she saw Dustin in five years if he went through the program, and she said he’d be in a wheelchair with heart and liver damage, frailty, low IQ and the good chance to develop leukemia,” Jack said. “After reading the consent form, we told them we need some time to explore our options.
“When it came down to it, there was no way I was going to put Dustin through that. I would rather bring him home and let him go in peace with the chance of a smile on his face than subject him to that.
“I was a skeptic when I went (to UMMC), and I was very naïve. But I learned a lot when I was there.”
A ray of hope from Houston
S omething a St. Luke’s nurse had said resonated with Mariann.
“She told me that there were other options out there, that we didn’t just have to believe what we were told,” she said. “So I started reading everything I could about alternative treatments. They were mostly diet-related, and one by one they eliminated themselves.
“But one treatment stood out.”
Jack’s oldest sister, Ellen Nygaard, had recently been diagnosed with rheumatoid arthritis. In the search for non-traditional treatments, she had heard of Dr. Stanislaw Burzynski, a Polish immigrant who was having success treating cancer patients at his clinic in Houston. All she had was a number.
The Kunnaris called it and were sent an informational packet. Dr. Burzynski, who is also a biochemist, had some years back researched peptides, which occur naturally within the human body. Using peptides, he developed a treatment using nontoxic antineoplastins. His credentials and case histories were substantial and encouraging. And his clinic’s motto is “First, do no harm,” a stark contrast to the toxicity study the family was encouraged to put Dustin through.
“Upon reading Dr. Burzynski’s info, I knew that was where I was going to take my son,” Jack said. “I wanted Mariann to come to that decision, too.”
Mariann did when her brother Tony Novak, also a doctor, said the treatment looked credible. But there was one small obstacle. Dr. Burzynski didn’t treat children under the age of 3 and Dustin was still over a month away from that birthday. But the compassionate physician, after hearing the Kunnaris’ pleas, agreed to treat their son.
They did, however, need to get Dustin’s records from the UMMC first. And that presented a much bigger obstacle.
A credible threat
W hen the Kunnaris walked in to the oncology department to pick up copies of Dustin’s records, they were met by the head of the department, who said, “We want to talk to you.” They were ushered into a room with some of the trial doctors along with social workers.
“They tried to convince us that we had to go through their trial. They kept raising the success rate to try to sway us,” Jack said. “They said they had some dirt on Dr. Burzynski, that his treatment had guaranteed side effects, that there was no hope with him.”
When that failed to change the Kunnaris’ minds, things got untoward.
“They said doctors take precedence over parents in medical cases,” Jack said. “They said they’d get a court order to force us to treat him there, that they could take all four of our kids. There were some troubling nights after that. They were calling for a while to see what we were doing.”
Novak was worried for his sister’s family as well, telling them that the threat was not a hollow one.
“After seeing the kids in the cancer ward there, it was like a walking morgue,” Mariann said. “There just wasn’t any hope.”
So despite the threats, with Dustin’s records in hand and after much prayer, the Kunnaris went ahead and flew down to Houston to meet with the ground-breaking doctor in mid-April of 1994.
No signs of cancer
W hen they first brought Dustin to Houston, Jack and Mariann were cautiously optimistic. They became more so after meeting with Dr. Burzynski.
“He was very confident his treatment would work,” Jack said. “He said he would treat Dustin, but if there were no results after the first MRI, he would discontinue the treatment.”
Dustin was put on an infusion pump and treated with two different variations of neoplastins 24/7. After six weeks, the MRI showed no sign of the tumor.
“I could see the tumor was gone by holding up Dusty’s post-op scan and the new one on the glass in our living room window,” Jack said. “That was pretty incredible.”
Dustin continued on the treatment, the pump residing in a Barney backpack which he carried with him everywhere as it pumped the treatment into his body via catheter.
About one year into the treatment, however, a second tumor appeared. It was slower-growing, but very troubling and showed the aggressiveness of medulloblastoma.
“I can remember thinking that the treatment was no longer working, but I was glad for the time it had bought us,” Jack said. “But Dr. Burzynski was very optimistic once again. He apologized and said he should have been increasing the medication to compensate for Dustin’s growth and size. Dustin was a new case for him since he was so young when he started treatment.”
Dustin was subjected to an increased concentration in dosage and soon was once again cancer-free.
Like the surgery, Dustin remembers the trips back-and-forth to Houston, especially the flying, some of the nurses who took care of him and the hotels.
“I knew I was sick, and I knew whatever the doctor told me I had to do, I had to do it,” Dustin said. “I wanted to get better.”
Living in limbo
T hat year - 1995 - Burzynski was indicted in federal court on 73 counts. If convicted, the doctor would face 290 years in jail and
$18.5 million in fines. Also, included in the indictment was the order to suspend treatment to his 300 current patients, a virtual death sentence for most of them.
To be continued…
Check out next week’s issue of Hometown Focus for the conclusion of this two-part series.
Dustin Kunnari will be featured in an upcoming episode of The Incurables, a documentary TV show. His story has also been featured on Nightline, 48 Hours, The CBS Evening News, on a number of talk shows and in various newspapers and magazines worldwide. It was also recounted in Knockout by Suzanna Sommers and The Burzynski Breakthrough by Thomas D. Elias.
Jack and Mariann Kunnari, along with Dustin, appear in Burzynski: The Movie. Copies of the film are available at Kunnari’s Greenhouse on Bodas Road, just off Hwy. 53, south of Eveleth.