Teens Living with Cancer
From left to right / Isaiah Cox, 17, leukemia survivor; Katie Foster, 15, rhabdomyosarcoma; Mareesa Boyatzies, 15, Hodgkin’s lymphoma; Michaela Deeg, 16, Hodgkin’s lymphoma; Katya Mailloux-Kuz, 17, brain cancer; Bryn Mugnolo, 16, Hodkin’s lymphoma; James Botsford, 18, Hodgkin’s lymphoma
In April of 1998, Melissa Marie Sengbusch was a vibrant, ambitious 17-year-old high school senior with big plans for college and beyond. She was beginning to make important decisions regarding her future and had taken that important first step when she applied to and was accepted into the nursing program at the prestigious University of Pennsylvania. All of her plans for a bright future were put on hold when, shortly after being accepted into Penn, Sengbusch and her family received devastating and life-altering news: Sengbusch had been diagnosed with Myelodysplastic Syndrome, a rare form of Leukemia.
Lauren Spiker watched her daughter, Melissa, struggle with this disease that claims fewer than five out of every one million Americans each year. Chemotherapy treatments started in July of 1998, forcing Melissa to temporarily change her plans for college, even though she did manage to achieve a perfect 4.0 grade-point average in five classes at the University of Rochester. For eight glorious weeks, Melissa even managed to fight through her illness and attend classes at Penn. There, she excelled in her classes, made fast friends with her peers, ate in the campus dining hall and even attended a fraternity party — all the staples of a typical college student’s life.
While Melissa fought the good fight and put everything she had into battling Leukemia, in the end, she succumbed to her illness on June 22, 2000 at the age of 19. Before she died, mother and daughter engaged in one last heart-to-heart talk, where Melissa made a request to her mother that profoundly impacted not only Lauren Spiker’s life, but the lives of hundreds of cancer-stricken teenagers living in Rochester and the surrounding areas. “Three nights before Melissa died, we were up late talking and I told her how proud I was of her for living her life, on her terms,” Spiker recalls. “I thanked her for what I had learned from her during her two-year struggle. She responded by challenging me, saying ‘If you have learned anything from me through all of this, do something with it to make a difference, to make things better.'”
Fourteen years later, a dying daughter’s words still resonate with Spiker, the founder and executive director of Melissa’s Legacy: Teens Living with Cancer, a support group for area teenagers who are going through the same difficult ordeal that eventually took Melissa’s life.
While Melissa was bravely battling her illness, Spiker noticed that teenagers have a distinctive road to take on the way to recovery, different from young children or senior citizens facing cancer. Oftentimes, teenagers battling cancer can fall through the cracks in the health care system. Trapped between two worlds — that of pediatric medicine and adult medicine — neither truly fits their unique challenges. Those who receive treatment and feedback from pediatricians often feel like their doctors don’t understand what they are going through, since normally these specialists are treating younger children, not teenagers. Even the waiting rooms can be off-putting, with teenagers trying to sit on undersized chairs while attempting to calm their nerves by reading the available children’s books or playing with children’s toys instead of age-appropriate materials.
At school, too, Spiker says teenage cancer patients face a difficult road. Their peers often don’t know how to handle the news that one of their friends has cancer, and can often become more distant and awkward around the cancer patient. For the teenage cancer patient, normal life is abruptly interrupted and replaced by doctor’s appointments, chemotherapy sessions and lonely, overnight stays in the hospitals.
“We saw first-hand how incredibly difficult it was to be a teenager living with cancer,” says Spiker, who formed Melissa’s Legacy in 2001 and says that approximately 60 area teenagers attend the group’s assorted meetings and social activities. “I started out trying to find some way to bridge that gap in services and find a way for other teens like Melissa to have the very best life possible while dealing with their cancer, whether they survive or not. This group’s goal is to help teenagers have as many life-affirming events as possible.”
Bethany Marsh is a proud graduate of what many of the group’s members have dubbed the TLC group (for Teens Living with Cancer). Marsh, a native of Nunda, Livingston County, was 15 1/2 years old when she was diagnosed with Acute Lymphoblastic Leukemia in January 2005. While out at a party with her friends, Marsh started to experience pain and went to see a doctor to figure out what was ailing her. When the diagnosis came back as cancer, Marsh was devastated. “I had so many questions racing through my head: what is cancer? How will I be treated? ‘Can I survive? What is the mortality rate?’ It doesn’t help when everyone else starts treating you like you are going to die because of cancer,” Marsh says. “It was a pretty traumatic time, but when a crisis happens, you don’t have a choice; you have to find a way to get through it.” Marsh says that when Lauren Spiker visited her in the hospital, she was originally hesitant to join TLC. “Maybe I was in denial about my leukemia, but I didn’t want to focus so much on my illness,” Marsh says. “I just wanted to go back to high school, be with my friends and be that reckless teenager that everyone wants to be.”
But it didn’t take Marsh long to realize the benefits of being around other teenage cancer patients. “It was a wonderful support group and I’m still friends with many of those TLC folks,” says Marsh, whose cancer has been in remission since 2008 and who was recently hired by TLC as an adolescent program coordinator where she helps to connect other cancer patients through social media. “We would all come together and be like the Teenage Mutant Ninja Turtles – we all had tubes coming out of us, had lost our hair, were on all kinds of drugs to treat us and some of us had fake limbs. These people were my friends and didn’t judge me,” Marsh adds. “We could all relate to the struggles of dealing with cancer, while my friends from high school seemed nervous and never knew how to approach me when they saw me.”
Adam Turner, now 15, was 11 when he was diagnosed with Acute Lymphoblastic Leukemia in May 2010, the same form of cancer that afflicted Marsh. When he first started going for chemotherapy and treatments, Adam went to a support group meeting for children, but was among the oldest there so he didn’t feel like he could relate. Adam and his mother, Michele, heard about TLC, and almost immediately, Adam felt right at home with the members of the support group. “I kept questioning whether or not I was going to die because my grandpa had passed away from cancer when I was five, so it was really hard at first,” Adam says. “But everyone was supportive and told me that I wasn’t going to die and that I was a fighter who would beat this. The scars used to bug me, but now they don’t. Everyone has scars, and it’s something to be proud of, that I went through and survived cancer. It’s a great group where you can talk about not just cancer, but life. No one there judges and they are there to talk and listen. It’s my second family.”
“It’s not a doom and gloom group; this is a way for these kids to have a life and gain a whole new perspective,” adds Michele Turner, who regularly attended the support group meetings for parents of teenagers living with cancer. “There are days we (parents of teenagers with cancer) are angry and days when you want to cry, but with this support group, you can show your emotions around people who know what you’re going through.”
Spiker says that across the country, 7,000 teenagers are diagnosed with cancer each year, and that every graduating class of high school seniors has, on average, at least one teenager who has survived cancer. The average treatment for a teenager living with cancer is roughly two-and-a-half years, so Spiker says that averages out to roughly 16,000 teenagers who are in active treatment for their cancer annually. Many forms of cancer that affect teenagers have less than a 50 percent survival rate. For those fortunate teenagers who do survive and beat their cancers, just because the cancer is in remission, doesn’t mean the complications stop there. These teenagers still have potentially 70 more years of living with health complications and problems stemming from their cancer treatments, which is important for the community to understand so that if can support these survivors in their efforts to remain cancer-free.
In 2012, a second chapter of TLC was opened in Buffalo, and Spiker says the group has formed a partnership with the Wilmot Cancer Center that aims to assist teenagers in their transition from cancer patient to cancer survivor. Fourteen years after she suffered the biggest loss of her life, Spiker knows that her daughter is watching over TLC and is proud of the difference her mother has made in the lives of teenagers living with cancer.
What does Melissa’s Legacy provide?
The efforts of Melissa’s Legacy Foundation are dedicated to helping teens living with cancer learn how to take charge, improve their physical fitness and express themselves through the arts, while providing camaraderie, outings, social events and opportunities for life-affirming occasions.
For more information on the group, including two upcoming fundraisers, the 13th Annual Celebration of Living (Oct. 11) and the 2nd Annual Bandana Bolt 5K race (Oct. 12), visit www.teenslivingwithcancer.org
John Boccacino is monthly contributor to Rochester & Genesee Valley Parent Magazine. He reported on sports and local news for more than 6 1/2 years with the Democrat and Chronicle newspaper. He is currently the Director of Sports Information for Keuka College. Boccacino is a Brighton native who currently resides in Webster.
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