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Few young women worry about not being able to have kids because of early menopause, or have concerns about lingering back or occasional knee pains – the same aches that years ago had signaled their cancer. Most adolescents just don't understand the general anxiety that arises from uncertainty about one's medical future.
"Regular friends don't always appreciate why certain things impact me the way they do. They can't relate to my experiences. These girls do," says Laura McNulty, 22, of her friendship with Tara Lines, 25, and Sarah Risko, 24. All are survivors of childhood acute lymphoblastic leukemia (ALL) now getting their follow-up care at Dana-Farber; and all have bonded in a way that embraces and empowers them.
McNulty and Risko were treatment buddies at the Floating Hospital for Children at Tufts Medical Center in Boston, and reconnected years later as pre-teens at the "Hole in the Wall Gang Camp," for children with serious illnesses, outside Hartford, Conn.
They stayed close, and in 2005 McNulty met Lines through a "Facing Forward" workshop run by Dana-Farber's David B. Perini, Jr. Quality of Life Clinic – a program of the Perini Family Survivors' Center. Facing Forward explores the ways being a childhood cancer survivor can affect one's self-image, social relationships, health, school, or work, and the pair found themselves to be kindred spirits. Once McNulty introduced Risko to Lines, the trio was solidified.
Lines says their strong bond is based on shared childhood experiences. Even after being in remission for almost 20 years, they still think about their disease every day, something only another cancer survivor can fully understand.
"I don't talk a lot about cancer with my other friends, especially those who have had family members who died of cancer," says McNulty. "I've had many people tell me, 'It happened when you were 3, and now you're 22. It's done, move on.' The thing is, cancer is never not going to be a part of my life.You don't get over it."
"I've had many people tell me, 'It happened when you were 3, and now you're 22. It's done, move on.' The thing is, cancer is never not going to be a part of my life. You don't get over it."– Laura McNulty
The three young women turn to each other for the special support they can't find elsewhere.
For them, friendship has become a substantial aspect of coping with the lifelong effects of cancer. Calling themselves "unbiological sisters separated at birth," they believe that having one another has made all the difference in enduring adolescence, transitioning to adulthood, and moving forward with their lives while understanding the lifelong consequences of their ALL.
Lines was diagnosed in 1985 when she was 21 months old. Risko and McNulty followed in 1990 at the ages of 5 and 3, respectively. Little did they know then how their treatment would shape their futures.
Risko remembers watching Tiny Toon Adventures and drinking a soda in the hospital when she learned that her knee pain was actually from ALL, a type of blood cancer also known as acute lymphocytic leukemia or acute lymphoid leukemia. Her first question to her doctor was, "Will I die?"
Thankfully the answer was no. Survival rates of this most common type of leukemia among children have improved steadily in the past 40 years. In the 1970s, five-year survival for children younger than 20 was 61 percent; today, it has climbed to 83 percent.
After five weeks of inpatient chemotherapy, Risko was given a central IV line, allowing her to leave the hospital and return a few times a week for treatment that lasted three years. But she says reintroduction to public school was worse than the hospital.
"I hated going back to school because kids either teased me or ignored me," recalls a vivacious Risko, known as the funny one of the group. "It was 1990, and people were absolutely, ridiculously still phobic about cancer. I looked different – I had lost my hair, I was using a walker, and you could see my central line – and kids were scared. I only had one or two friends from first to seventh grade."
McNulty, who found out about her ALL through routine blood tests, doesn't remember a whole lot about being in the hospital. "I see it as a blessing, a positive amnesia," she says of her three years of once-a-week chemotherapy and radiation. But as with Risko, vivid memories of being taunted in school are hard to shake.
"I was teased about the way I looked. I came back to school and had less hair," recollects McNulty as she unconsciously tucks a straight, dark lock behind her ear. "When I was younger, I was open about it with people. I wanted to tell anyone who would listen about my story. I had a Peanuts cartoon video about Linus's friend who gets cancer and a scrapbook that I brought to school. Then I realized I can't go around introducing myself and telling people whenever I enter a room, 'Hey, I had cancer, how are you?' People don't know how to react."
Barely a toddler, Lines was too young to remember much of her two years of treatment at Children's Hospital Boston. Like the other women, she suffers from learning problems, including subtle memory issues, and spatial and visual disabilities. As difficult as that was, it also helped her mature earlier than many peers in terms of her priorities.
"Growing up, a lot of my friends didn't get me, and I didn't want to open up to people," says Lines. "My mom always wanted me to go to support groups, but I didn't want to."
It took almost 15 years – until she was a senior in college – for Lines to feel comfortable enough to let others in.
Cancer often becomes part of someone's lifelong identity, and for these friends it is influencing their career ambitions as well. All three have overcome learning disabilities to pursue their passions. McNulty graduated from Wheelock College in Boston last spring with a degree in childhood development and is pursuing a master's degree in special education from Bridgewater (Mass.) State College. Risko is graduating from Bridgewater State this spring with a bachelor's degree in sociology and wants to be a hospital psychologist or sign language interpreter.
"There's a reason I got cancer," states Risko. "I know I'm meant to do something with my experience."
Lines graduated from Curry College in Milton, Mass., in 2006 with honors after transitioning out of the school's program for students with disabilities and into mainstream classes. Now attending Regis College in Weston, Mass., for a graduate degree in event planning and management, she credits her field choice to her ALL. "Because of my experience with cancer, of being in control of nothing, I now want to plan everything."
Last year, she organized a benefit concert with a friend's band that raised money for cancer research. She also gave a speech to a crowd of roughly 200 about her experience with childhood leukemia, something she says she would never have been able to do before.
Some recent research is identifying a positive attitude shift for many childhood cancer survivors, according to Andrea Patenaude, PhD, who studies psychosocial issues in cancer genetics and survivorship at Dana-Farber. Some childhood survivors wear their status as a badge of honor and feel strengthened by their ability to overcome the disease.
For Risko, this couldn't be truer. "I'm intent on kicking cancer's butt. It deserves it. If I get cancer again, fine, let's go."
Even with their busy schedules of classes, family, and dating, the women find time to raise money for cancer research and volunteer as counselors at Camp Sunshine (another facility for children with life-threatening illnesses and their families) in Maine.
"I'm very grateful having Laura and Sarah in my life. As much as they drive me crazy, I still love them. They are my life," says Lines. "No matter what happens, we'll always be best friends."
Spring/Summer 2009 Table of Contents