July 2005 - Volume 20 #11

By JAN WILLMS

"I hope that when I die, I will be able to look back on a life that was fulfilling and was spent living, not waiting to die."

Karen Wyckoff wrote those words for a high school class in Roseville, MN, 10 years before her death in August 2001.

Long before her illness struck and up until her last moments, Karen lived a full life of participation and service.

"She was a doer and cared passionately about life and people," reflected her father, Peter Wyckoff, as he prepares for the 5th annual Rein In Sarcoma event set for Monday, July 25.

The event, which was started by Karen a month before she died from sarcoma, a rare cancer, features a silent auction and tour of the Como Park Conservatory.

A free picnic for sarcoma survivors and families, as well as anyone who has lost someone to the disease, will be held starting at 4:30 p.m. Sarcoma doctors from the University of Minnesota will be joining the picnic. Participants in the picnic are asked to register in advance by calling 651-486-9114.

Unlimited carousel rides on Cafesjian's Carousel will be a featured part of the evening, as well as live entertainment by Rubber Soul, the Beatles Tribute Band; Dunquin Irish Trio; Hondo the Magician and Larry McDonough, Jazz Piano. Children's activities include face painting, a moonwalk and a book walk. The event begins at 6 and continues through 9 p.m. at the Como Park Conservatory and surrounding area.

Suggested donations are $10 per individual and $20 per family.

According to Peter, who serves as executive director of Minnesota Senior Federation Metropolitan Region, Karen literally created "Rein in Sarcoma," a play on words, alluding to Cafejsian's Carousel horses.

The 5th annual Rein In Sarcoma, which was started by cancer victim Karen Wyckoff a month before she died from sarcoma, features a silent auction and tour of the Como Park Conservatory. Today, Karen's parents, Sue and Peter, organize the event, which is planned for July 25. (Photo by Terry Faust)

"Everybody walks and runs for fundraisers," said Sue Wyckoff, Karen's mother. "Karen wanted to do something different, and she thought of going in circles. She called Peter Boehm, whose daughter was a good friend of hers. (Boehm, a Como resident, was active in saving and restoring the carousel.) That first year, we expected about 50 people for a picnic, and 250 showed up.

Karen's battle with sarcoma began in 1997 at the end of her junior year in college at Willamette, OR. A lump she discovered in her armpit was misdiagnosed as benign, and surgery in June only spread the cancer. "If diagnosed correctly, her illness would not have been treated as it was," her father stated. "They did all the things you should not do."

Karen was aware of her grim prognosis from the beginning, but she never gave up hope and spread that hope to those around her.

"To understand Karen, her whole life was about service," Sue related. "When she was in high school, she belonged to a Girl Scout troop that just did service projects, and sold a whole lot of cookies.

The girls went out for dinner each year on their cookie money, and when Karen died, any remaining money was donated to Rein In Sarcoma."

Rep. Mindy Greiling of Roseville was one of Karen's troop leaders.

"She was one of my girl scouts, as well as a friend of my daughter's," Greiling said. "She was going to be my intern at the Legislature during one of her times at home, but she had a relapse and wasn't able to do it."

"She was such a lovely person, and her work was so incredible," Greiling continued. "She was the most organized girl scout I ever knew. She would call and remind people of their tasks, and she always had the troop over for holidays."

Greiling said she met Karen when she was in junior high. "Her troop was dwindling, and she joined ours.

"She was immediately a part of the group," Greiling added. The ability to fit in and befriend others was a quality Karen possessed throughout her life. "She never lost a friend from kindergarten through college," Sue noted. "She made all her friends be friends with each other."

Karen chaired various service organizations in college, and worked with Habitat for Humanity.

During her senior year, her illness kept her at home and she took classes by correspondence, graduating in the spring with a major in political science.

She wanted to join the Peace Corps, but they would not accept her with her cancer. She then decided to join the Lutheran Volunteer Corps, which also said no because of her illness.

"Karen wrote back to them, told them this was not right and she should be allowed to participate," Sue recollected. "She was allowed in."

Karen joined others and lived in a house in Minneapolis, with five to seven volunteers in a house.

She worked with legal aid, but lived in poverty conditions while a part of the Volunteer Corps.

"One time Karen and her friends sent out invitations to politicians to come to dinner and see what it was like to live in such economic conditions," Sue said.

"A few of them did come, and they were served pumpkin curry."

Karen and her friends also dressed up in chili pepper costumes, went all over town, and wrote down the comments they elicited from people.

In 1999, as Karen was preparing to go to the University of Minnesota to obtain a master's in public health, her cancer returned. But even as she fought back the disease, she continued providing service to others.

She was a "chemo angel" for a six-year-old boy, writing him letters as he was going through his chemo treatments. "She never told him she had cancer herself," Sue said. She also raised money through hunger strikes. "She continued to live a life of charity for others," recalled her physician, Dr. Randy Hurley, an oncologist at Regions Hospital. "When she was undergoing chemo and was nauseated and couldn't eat, she would call it a hunger strike and raise money for hunger relief."

"She was involved in so much, continuing to coach soccer while getting therapy," he said. "I released her from the hospital to go home and work on her fundraiser, and she died a month later. She affected me in some ways in my own personal life."

Karen's cheerfulness in the face of her illness was exceptional, according to her family.

"One of the doctors had written in his report that everyone in her hospital room was laughing and joking so much, he was not sure if they were aware of the seriousness of the situation," Sue said.

They were all well aware of the seriousness of Karen's condition, but still were able to laugh and enjoy life to its fullest. Karen was very much a part of her treatment process, which Dr. Hurley encouraged. But she kept a light touch on everything.

She made a "Pit Family Tree" when the cancer was discovered in her armpit, drawing a family tree of all the doctors she worked with, describing each of them with a cryptic phrase. "You could tell which ones she liked, and which ones she didn't care for as much," her mom said.

As the cancer spread to her lungs, she made another family tree describing the pulmonary doctors she worked with. She also composed a poem, "The Night Before Chemo," which is printed on her website www.reininsarcoma.org

"Karen wanted to come home to die," Sue said, "and her friends wanted to put on a big party at the hospital before she left. They had paper chains with good things written about Karen, and there was a cello and a guitar there." She said she was concerned the hospital staff might be concerned about the commotion, and she went down to the nurses‚ station to explain what was going on. She found that the nurses were furnishing refreshments.

As ill as Karen was, when she returned home she still managed the strength to dress up and go out and eat with a friend.

"She had medical equipment connected to her, and she really couldn't eat much, but they dressed up in hats and went out for dinner," Sue recalled.

Karen had been expressing her concern about the need to educate people about sarcoma and raise money for research. "She would see babies with sarcoma, and she said something had to be done," Sue said.

Based on her desire to raise funds to fight sarcoma, Karen's physician released her from the hospital. It would turn out to be her last trip home.

After Karen's death, the campaign to raise funds for research continues. Sue said some of the money that has been raised has gone to fund a class for sarcoma patients who have been misdiagnosed to meet with doctors. "Some of the education for the disease has to be for the professionals, as well as the public," Peter said.

Other funds raised go for research, and the July event is also about patient support. Last year Rein In Sarcoma was incorporated, and Peter has gotten some help with the website this year.

"We expect 700-900 people this year, and we hope to raise $25,000 to $35,000 from the event," Peter claimed. He said all the work being done for the event is through volunteers, and each year it has expanded and grown. American Family Insurance is underwriting the picnic, and has sent eight volunteers to help. Some anonymous donors have also helped with expenses. Karen saw the fruition of her first Rein In Sarcoma event. Her family and friends have kept it growing, and her efforts in bringing people together and serving others are still being felt.

About a year after her death, her loved ones gathered on the Oregon coast and spread her ashes and celebrated her life. Three of her professors from Willamette participated in her service, and an award from the college was named for her.

"They said they named the award for her because she was a person who best typifies what it is to be a political science major," her Dad remembered. "They said they had never found a student who personified the intellectual capacity and put it in controlled service the way she did."

That strength remained with her. One time her parents went to see another medical facility to get a second opinion. Karen was concerned that they would get too much hope from this. She was always realistic about the outcome of her illness, but she also held onto hope.

"After she died, I found a list of instructions of what she wanted us to do after her death in one pocket," Sue

related, "and in the other pocket was a list of new treatments she wanted to try."

As the annual fund-raising event draws near, memories of Karen are strong. "People tell you that the death of a loved one will pass," her mother reflects, "and as time goes on, it may get a little easier. But you never forget, you never forget."

Click here to Learn more about Karen

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The Rein in Sarcoma Logo, created by Susan Vanderlinden for RIS 2003, represents both a classic carrousel horse and the sunflower that when used with the golden ribbon is the symbol for finding a cure for Sarcoma Cancer.

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Last Updated: July 25, 2005