Grosse Pointe WoodsDecember 28, 2011
Widow finds new sense of purpose championing drug that aided her husband in battle with brain cancer
By K. Michelle Moran
C & G Staff Writer
GROSSE POINTE WOODS — The Starbucks on Mack in the Woods was where Evonne Stevenson Schott and her husband, Mike Schott, stopped daily for coffee. It was close to their home and quickly became “their” spot.
So it’s only fitting that Evonne Stevenson Schott chose Starbucks to talk about “One More Dance,” her moving account of her husband’s courageous battle against glioblastoma — an especially malignant type of brain cancer. Stevenson Schott co-authored the book with published author and freelancer Ed Rabinowitz. It’s a story that covers the couple’s romance, marriage, and the fight of their lives as Mike Schott squared off against an opponent more cunning and vicious than any he’d ever faced in a corporate boardroom.
The couple had been married just under three years when Mike Schott died on March 28, 2008. He was 59 years old.
Stevenson Schott grew up in Grosse Pointe Shores, but now lives in the Woods with her two sons: Sam Stevenson, 19, a business major at Wayne State University, and Tommy Stevenson, 16, a junior at Grosse Pointe North High School. Mike Schott became a stepfather to her boys, so his loss was difficult for them, as well.
The pair met when Stevenson Schott was teaching a 6 a.m. exercise class in the late 1990s and Mike Schott — a successful, high-ranking executive in the beverage industry — became one of her students. She recalls in the book how his cellphone was often glued to his ear, or he would stop in the middle of a routine to take notes or do his own exercises, including push-ups. Stevenson Schott later accepted a part-time job with Mike Schott’s company, in part because she was able to work from home and spend more time with her young sons.
It wasn’t love at first sight, and Mike Schott was her senior by almost 14 years. Schott said their relationship blossomed slowly from friendship into romance.
After a series of headaches and episodes of forgetfulness, Stevenson Schott insisted on taking her husband to the hospital when he became severely ill on a plane after they had to cut a trip short. Her decision saved his life, as doctors later said that if he hadn’t sought treatment immediately, he would have died that weekend. It wasn’t the last time Stevenson Schott would be her husband’s best healthcare advocate.
With dozens of friends, family members and business colleagues scattered around the world, Stevenson Schott started a blog in September 2007 to keep people informed on the latest developments in her husband’s health. Caring for him left her no time to place countless calls, so the blog seemed like a good way to update those who cared about her husband.
She started working on the book in August 2010. Putting her experiences on paper wasn’t easy. Some people might have found working on a project like this cathartic, but for
Stevenson Schott, reliving those days and months “was brutal.”
“The emotions of going through it were intense, but I felt as though there was a story to tell,” she said.
“You have to find your own way to deal with grief and death and loss,” she continued. “Grief is very personal.”
A miracle of sorts came in the form of a medication then being used on a trial basis for the treatment of glioblastoma. Before he was put on Avastin, doctors had given Mike Schott a month to live. Thanks to the drug, his wife said he got another year — much of it surprisingly healthy for someone with such a serious illness. Within a few weeks, she said, they started to see significant improvement in his mental and physical health and overall functioning. Her husband had always been an avid swimmer, and he resumed daily swims in the family’s backyard lap pool in summer 2007, swimming up to 30 laps per day, she said.
“It was night and day,” Stevenson Schott said of the difference she saw in her husband before and after Avastin.
The book’s title comes from the success they had with the drug.
“Avastin gave me a chance to dance with Mike again,” she said.
Dr. Tom Mikkelsen, a Wayne State University professor of neurology, Herrick Chair in Neuro-oncology Research and co-director of the Hermelin Brain Tumor Center at Henry Ford Health System, was one of the doctors who treated Mike Schott and advocated the use of Avastin to help him. As the lead investigator for the Avastin trials in metro Detroit, Mikkelsen of West Bloomfield had reason to believe even then that this drug could provide significant benefits to patients like Mike Schott. Unlike other cancer treatments, such as chemotherapy, which can have devastating side effects, Mikkelsen, in an email interview, said Avastin is “an entirely new category of treatment with relatively little in the way of side effects.”
“Avastin is one of a new category of anticancer drugs which don’t block cell division, but attack the tumor by squeezing off its blood supply,” he explained. “Because brain tumors are among the most heavily vascularized tumors, they are uniquely sensitive to this treatment approach. I would encourage everyone dealing with such challenges to seek out opportunities for novel therapies in the setting of clinical trials, through which they can benefit and also provide new knowledge for patients going forward.”
Stevenson Schott became an advocate for Avastin, even being one of a handful of non-medical professionals who testified in support of the drug for brain cancer treatment in front of the Food and Drug Administration in Washington, D.C.
“It was one of the most frightening things I’ve ever done,” she said. Her PowerPoint presentation included photographs of her late husband, because, she said, “I wanted to put a face” on the disease. Although it was recently pulled as a treatment for breast cancer, Avastin was approved for the treatment of glioblastoma in May 2009. The news brought Stevenson Schott to tears — but this time, they were of joy. Mikkelsen feels her testimony was pivotal in Avastin’s eventual approval.
“A patient’s experience communicated by a family member takes the statistics off the page and gives them a real face. … Evonne has shown, through her effort, a reflection of her husband’s spirit in their quest for quality of life in spite of a difficult diagnosis,” Mikkelsen said.
Thinking about what her husband would have thought of the book, Stevenson Schott fights to keep from crying.
“He would be proud,” she said. “He was someone who always believed you could do anything you set your mind to. He always brought out the best in me.”
Her husband was able to afford Avastin, but for many cancer patients, experimental drugs like this are out of reach, and that’s one of the things she is fighting to change, in order to give everyone access to the latest medical breakthroughs.
“To me, when I hold the book, I feel like I’ve honored his life,” she said. “He was such a great guy. I just wanted to make something positive out of something awful.”
Some of the proceeds from the sale of “One More Dance” will go toward cancer research, including the Michael B. Schott Fund at the Henry Ford Health System Hermelin Brain Tumor Center and the REaCH Organization in Syracuse, N.Y., whose emphasis is on improving quality of life for children and adults and curing hydrocephalus, or fluid on the brain. Stevenson Schott hopes the book offers hope and help to others going through a similar experience. She plans to continue her efforts to support brain cancer research. She is a member of the Henry Ford Neuroscience Council of Advisors and counsels other families going through the same struggles.
“I wanted to make a difference for someone else,” she said.
Mikkelsen believes she already has, and will continue to do so.
“Hopefully their story will inform other people about the hope that remains in spite of difficult times,” he said. “There are ways of dealing with life-threatening situations, and (a) person’s and family’s response has a lot to say about whether the diagnosis will drive their life or whether they will continue to live despite the challenges.”
Although she has lost the man she said was “the love of” her life, Stevenson Schott still feels his presence.
“Every day is a gift,” she said. “That sounds like such a BS saying, but it really is true. Even in your darkest hours, never give up hope. You really don’t know your true strength until you’re tested.”
For more information or to purchase “One More Dance,” visit www.onemoredancebook.com.