Bartlett native's cancer motivates her life, her work
Before it became her inspiration for a rich life filled with joy, friends and a mission, cancer waged a cruel and unrelenting battle against Colleen McGrath and the people she loved.
Having already killed her grandmother and an uncle, cancer ravaged Colleen's "perfect suburban childhood" in Bartlett. As a teen, she watched cancer kill her mom, her dad and her best friend and come close to killing her. Now that Colleen is 27 and finally living the life she loves, cancer is attacking her once more in the form of incurable Stage IV colon cancer.
"I won't let cancer define me," proclaims Colleen, who says her passionate quest to help children with cancer is her "revenge" on the disease. "I won't be a victim to cancer … My story, it happened for a reason, and I believe sharing my battle will help someone else."
With her brother Michael, 15 years older, and her sister Mary Eileen, 12 years older, already out into the world, Colleen was enjoying soccer, homemade cookies and all the other benefits of being the youngest child of Michael and Ellen McGrath when her mom, a former preschool teacher, was diagnosed with colon cancer.
"I had my 13th birthday in hospice with my mom," Colleen remembers. Ellen McGrath died 12 days later, on April 27, 1998, two days before her 52nd birthday.
Colleen completed her seventh-grade year, but she wasn't healthy. She missed chunks at the start of eighth grade, spent too much time in bed, had bouts with strep throat and fevers of 102 degrees, and showed signs of depression. Her still-grieving father, who worked as a youth probation officer and ran a car-detailing business on the side, took her to endless doctor's appointments before they discovered Colleen had pancreatic cancer, often deadly and extremely rare in children.
An extensive surgery in December of 1998 to remove the girl's gallbladder and parts of her pancreas, small intestine and stomach was followed by even more grueling rounds of chemotherapy. The drugs made her sick, gave her panic attacks about the loss of her hair, and made her lose more than 50 pounds. Despite support from her dad and siblings, Colleen eventually decided she wanted to quit treatment, surrender to the cancer and let it kill her.
"Part of it was because I was that sick," remembers Colleen, who was spending 20 hours a day in bed. "Part of the reason that I was giving up was because my only experience with cancer was holding my mom's hand as she died of cancer."
Her oncologist, Dr. Charles Rubin of the University of Chicago, and nurse Heather Moore, now retired, had been volunteers at a special camp for kids with cancer and thought it might help Colleen. That summer, Colleen's father told her she could quit treatment under one condition: She had to go to the One Step At A Time Camp in Lake Geneva, Wis., no matter how much she balked.
"I went to camp, and they cured my spirit," Colleen says of the camp run by a not-for-profit charity called Children's Oncology Services. "I saw amputees playing soccer. I saw bald kids who were totally comfortable and felt beautiful inside and out."
She ditched her wig, shaved the few strands of hair on her head, and vowed to complete her treatment and live.
"I remember my dad, tears rolling down his cheeks when he came to pick me up," Colleen says, wiping her own tears at the memory. "I'll never forget his face when he picked me up. He was so happy. He had me back."
Crediting that experience with "saving my life," Colleen has been to every One Step Camp since, as a camper and then as a counselor. She's also gone to the one-week winter camps, the annual ski trip to Utah, advocacy trips to Washington, D.C., with other cancer kids and survivors, and has been a constant volunteer and fundraiser for all 10 of the One Step Programs.
Children's Oncology Services hired Colleen a year ago as the development coordinator charged with raising money to send kids to camp, mainly by organizing teams for charity runs and other fundraisers. The 33 runners on Team One Step raised $56,000 the first year. Last year, about 100 runners raised $140,000. This year, Colleen is organizing an even bigger effort.
She uses the battle with cancer to motivate all her good works.
"Colleen embraced it and made it her own," remembers Lauren Johnson, 28, one of the many friends from Colleen's Bartlett High School class of 2003 who volunteers with One Step Programs.
"Freshman year, I walked in with complete confidence. I was bald, 14, weighed 83 pounds and I had cancer," says Colleen. At 15, she sponsored a basketball tourney to raise funds for the camps. In remission and recovered from her treatment by junior year, Colleen drove a car with license plates reading "XBALDY."
On the anniversary of ending her chemo treatments, her dad took her to get a tattoo on her ankle boasting the Japanese characters for "survivor."
Their close world was ripped apart once again when her dad went to the hospital with some pains and was diagnosed with colon cancer.
Her father died in December of 2004 when Colleen was a 19-year-old student at the University of Nebraska. Her best friend from camp died of bone cancer the following July. Colleen had met Jackie Renner of Sycamore during her second year at camp. While Colleen was thriving in recovery, Jackie suffered six relapses in five years. Even after cancer caused the amputation of Jackie's right leg, the pair always made camp and the ski trip to Utah.
The early morning when Jackie's mother phoned to say her friend had died, Colleen hopped in her car and drove to the camp to celebrate Jackie's life and grieve her loss.
"We're a big family," says Jill Kulbok-Carlson, director of program services for Children's Oncology Services. "We celebrate together as a family, and we mourn together as a family. There's a lot of coming together around a loss."
Now, there is an all-encompassing rally around Colleen. The lump Colleen discovered on her hip at the end of April was a symptom of Stage IV colon cancer officially diagnosed in May.
"Me being me, I'm like, 'Am I going to die?'" Colleen remembers asking a surgeon. "And she said, 'Yeah.'"
Colleen took chemo treatment while at camp "because I couldn't miss camp," and says she isn't about to give up just because she has an incurable cancer.
"My family and I chose to say my cancer is not curable now," says Colleen, whose dress hides the medical tubing draining fluids from her body. Adhesive patches constantly deliver a drug to help her manage the pain. She had an allergic reaction to her last chemo treatment and will start a new drug on Wednesday, when she'll lose her hair as she did at age 13.
"We are going to do everything to keep me alive until there's a cure," Colleen says, before flashing a coy smile and quipping, "Or I'll still be taking chemo at 80."
Her brother and sister, who take extra medical precautions warranted in a family with such a history of cancer, are constant and upbeat supporters. Her brother, the longtime head basketball coach at the University of Chicago, her sister and their families live near Colleen in Chicago.
"Nobody can do it by themselves. It takes an army," says Mary Eileen Weber, the sister who remembers how their dad survived long enough to enjoy a family trip to Ireland, see his two oldest kids marry and help Colleen head to college. "So much of this is about having the fight and having the energy because you have to enjoy the days you have."
Dubbed Aunt Caca by her niece before the girl was old enough to pronounce her name, Colleen now enjoys the support of Team Caca, led by Mary Eileen's kids, 7-year-old Elly and 4-year-old Sean, and including children Colleen took care of during her earlier career as a nanny. Growing numbers of friends, including leukemia survivor Erin Fullmer and Colleen's roommate Veronica Reyes, are part of Team Colleen.
"She continues to inspire both young kids and everyone she gets a chance to tell her story to," says her uncle Terry McGrath of Glen Ellyn.
"Cancer in no way defines you," reads a post from friend Hailey Danisewicz on Colleen's Facebook page. "What defines you is your contagious smile, your scary cacklely laugh, your personality that's almost too big for your body, your love of Nebraska football, your mad Triple Play skills, your frequent hugs, your passion for the happiest place on earth, and your dedication to bettering camp for generations to come. That's how the world sees you, Colleen Patricia McGrath. Don't ever forget it. I love you with all my heart."
"She's amazing," Kulbok-Carlson says of her co-worker. "I don't know how she does it, but she does. There's definitely a sense that she's going to make it, and no matter what happens, she's going to be fine."
While she admits to having "bad days," Colleen says her passion for the One Step Camp once again feeds her spirit.
"It feels really good some days to sit in my bed and work on it," says Colleen, who notes that in the last four years she had gotten to the point where "I really love my life again."
"I finally get my dream," Colleen says of her career helping others with cancer. "It's like revenge. If I can come up with something to make life better for somebody with cancer, I win."
To find out more about Children's Oncology Services, One Step Camp, Team One Step, Team Colleen or fundraising and volunteer possibilities, email Colleen at email@example.com, go to the website onestepcamp.org, or call (312) 924-4220.
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