Heather Knies was given a death sentence at the age of 24. She battled not one, but two brain tumors — one of them a grade 4 glioblastoma, the same kind of cancer that killed Sen. Edward Kennedy in 2010.
But today, six years later, she is cancer-free, and her doctors at the Barrow Neurological Institute in Arizona cannot explain it. Her latest MRI is clean, and she is neurologically intact.
The now-32-year-old Knies has not only outlived her life expectancy, she has married and become a mother. Her successful parenthood is remarkable, as intense radiation and chemotherapy can render cancer patients infertile.
Knies’s daughter, Zoe, who is 7 months old, celebrated her first Christmas in December.
Knies’s doctors say that in rare instances, a patient can break the “biological rules.” But most often in those cases, the initial pathology of the tumor was suspect.
In her case, the pathology was “not controversial,” according to her surgeon, Dr. Robert Spetzler, director of the Barrow Neurological Institute at Joseph’s Hospital and Medical Center in Phoenix.
In his 35 years as a neurosurgeon in the United States, Spetzler said he has never seen such a triumph against a stage 4 glioblastoma.
“It’s one of the most malignant tumors there is,” he said. “Invariably it will come back and pop up somewhere else in the brain and it’s uniformly fatal.”
“It’s not unheard of that that a few survive — it’s a bell curve and there are outliers,” he said. “But in her case, not only has she survived, but she is perfectly normal and there is absolutely no evidence of a tumor on her MRI scan.”
Knies has a few of her own theories for why she is still alive today.
“One, being God had a plan for me,” said Knies. “I also had a great team of doctors and wonderful family and friends with a positive attitude.”
“The mind is so much more powerful than anyone can imagine,” she said. “People believe that when they get cancer, it will kill them. But I never once thought that.”
Spetzler said Knies was “on the young side” for a glioblastoma, but it can occur at any age, “even in infants.”
It all began in 2005, when Knies had the first symptom that something was wrong. She had just started a new job as a receptionist at a doctor’s office and was driving home from work.
“Suddenly, I didn’t understand what the dashed white line meant in the road,” said Knies. “I had been driving since I was 15, so I started panicking and called my Mom. She asked, ‘Did you take something?'”
Knies could see, but couldn’t understand what she was seeing.
“I was only 24 and I was having visual problems,” she said. “I can’t even describe them.”
Her boss, a dermatologist, insisted she see a specialist, and an MRI showed a low-grade tumor that was pressing on the visual reception cord in her brain.
“I had just moved to Phoenix from Missouri. I was just out of college and felt like I had the whole world waiting there for me,” said Knies, ever the optimist. “Looking back, it probably grounded me a bit.”
She underwent surgery at another institution, and she enrolled in a drug trial for an oral chemotherapy at Duke University, repeating MRIs every three months.
She says doctors told her to, “Go live your life.”
But in less than a year one of the scans showed the white flairs of tumor growth.
It turned out the new tumor was aggressive — a stage 4 glioblastoma and it was sitting on the right side, touching three parts of her brain: the temporal, parietal and occipital lobes.
The lower-grade tumor had turned into a more aggressive one, which is not unusual in a glioblastoma, according to Spetzler, who took over her treatment in 2007.
“I opted not to have the entire tumor removed or my left side would have been paralyzed — so I asked Dr. Spetzler to debulk it. I didn’t want quantity, I wanted quality,” she said.
When her mother was brave enough to ask how long she would have to live, one of the doctors said about six months.
“For whatever reason, because of being an athlete or just being mad, I wanted to defy him and the medical world and show that no one is a statistic,” Knies said. “I was immediately defiant. I never once thought it would be the death of me.”
The tumor caused massive headaches and vomiting from the pain, and on Friday, April 13, 2007, she went into surgery. “Friday the 13th will never scare me again,” she said.
Surgery was followed by heavy doses of chemotherapy and radiation. Knies will be monitored with MRIs for the rest of her life, but for now, her brain shows no sign of residual cancer.
“I would not feel comfortable calling it a cure,” said Spetzler. “But there is no evidence of a tumor as you would expect with someone who has lived much longer than expected. There is a hole where the tumor was. Her survival is remarkable.”
At her cancer diagnosis, her boyfriend at the time had “freaked out,” according to Knies. “It makes you very insecure when someone tells you up front they can’t handle it — bye-bye.”
But in 2010, she met Joe Knies, now 54, an engineer who was 22 years her senior.
“It didn’t even faze him, and it blew me away,” she said. “He made a good point — we can all die in a car crash tomorrow.”
They married in October while Knies was still undergoing chemotherapy one week each month. She had always wanted children and was warned the aggressive treatments could have damaged her eggs.
“It was almost as scary for me as hearing about the cancer,” she said.
On her oncologist’s advice, Knies decided to undergo in vitro fertilization with a surrogate because of the unknowns associated with cancer and pregnancy.
“I prayed hard,” she said. “After egg retrieval there were only two follicles and the rest were empty.”
In the three days they took to mature, only one was viable. “We had that one, and she is my daughter,” said Knies.
“My husband had never been married before or had kids and his parents thought they would never see the day, so it was a miracle to his mother that he now has a child,” she said.
“Every morning I wake up and thank God that I can feel my 10 fingers and toes and have a loving daughter and husband,” said Knies. “There have been so many miracles. One after another, as my dad said, so many angels must be sitting on my shoulders.”