Years after being treated for Rhabdomyosarcoma, Abby joins a research study
Abby Dedic in 2013
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More than a decade after Abby’s cancer treatment, she and her family joined a COG research study aiming to better understand the rare soft tissue cancer she had. Learn why all these years later, one of her oncologists at Cincinnati Children’s is still inspired by her perseverance and positivity.
PHOTOS COURTESY OF ABBY'S FAMILY
In the summer of 2019, Bill Dedic received an email. It was an invitation to participate in a study to better understand the rare form of cancer his daughter Abby had when she was a toddler.
He remembered how he felt in 2011 when doctors told him that Abby had cancer and thought of other dads like him. He thought of moms like his wife, Melissa, who didn’t hesitate to move with Abby hundreds of miles from their home in Indiana to be within minutes of Cincinnati Children’s where she was being treated. And he thought about Abby, now 16, who showed their family what bravery looks like every day that she endured treatment for rhabdomyosarcoma, a rare soft tissue cancer. |
All they had to do was send saliva samples to Project:EveryChild, the Children’s Oncology Group (COG) biobank where all biological samples of pediatric cancer patients participating in research are analyzed and stored.
Their family’s participation would support the Genetics of Embryonal and Alveolar Rhabdomyosarcoma Study (GEARS). Led by Philip Lupo, Ph.D., MPH. The GEARS study aims to better understand the relationship between a child’s cancer, the underlying genetics and rhabdomyosarcoma. So far, they’ve identified a group of patients who have a cancer predisposition syndrome, making them more likely to develop cancer.
Specifically, Abby was part of the 25% of patients who had Alveolar rhabdomyosarcoma (ARMS) and unfortunately, the vast majority of kids diagnosed with Stage IV do not live more than five years after their diagnosis.
“We decided as a family to participate in GEARS and send our data to Project:EveryChild because we know that studying the kids who have had cancer is one of the most important resources in learning about how to create better treatments,” Bill says. “Once you know about COG, you realize this is the source of progress and saving more lives.”
Their family’s participation would support the Genetics of Embryonal and Alveolar Rhabdomyosarcoma Study (GEARS). Led by Philip Lupo, Ph.D., MPH. The GEARS study aims to better understand the relationship between a child’s cancer, the underlying genetics and rhabdomyosarcoma. So far, they’ve identified a group of patients who have a cancer predisposition syndrome, making them more likely to develop cancer.
Specifically, Abby was part of the 25% of patients who had Alveolar rhabdomyosarcoma (ARMS) and unfortunately, the vast majority of kids diagnosed with Stage IV do not live more than five years after their diagnosis.
“We decided as a family to participate in GEARS and send our data to Project:EveryChild because we know that studying the kids who have had cancer is one of the most important resources in learning about how to create better treatments,” Bill says. “Once you know about COG, you realize this is the source of progress and saving more lives.”
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Even an extremely rare cancer can’t slow Abby down
Before her cancer treatment began, Abby’s doctors faced a major challenge – protecting her lungs. Abby’s left lung didn’t develop properly and by the age of 3, she’d been hospitalized for pneumonia eight times. “A couple of weeks before a planned trip to see her pulmonologist at Cincinnati Children’s, we noticed a gumball-sized lump on her abdomen. Within a couple of days, the lump had doubled in size,” Melissa says. When Melissa called to ask the care team about her concerns, they scheduled an appointment with the surgeon the following day. Not long after, the family was introduced to Abby’s new pediatric oncologist, Rajaram Nagarajan, M.D., M.S. “Dr. Raj” who is now the Medical Director at Texas Children’s Cancer and Hematology Center. |
Abby with "Dr. Raj"
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“We met Dr. Raj, and he shared that Abby had a high-risk rhabdomyosarcoma. It was a somber experience. But he was focused on getting her into treatment as quickly as possible and that helped us find our focus and strength,” Bill says.
While Dr. Raj was comforting Bill and Melissa, his team was already working to develop a care plan for Abby. That team included another pediatric oncologist, Christopher Dandoy, M.D., who would also become one of the family’s closest allies.
Tests revealed Abby’s cancer had spread from the soft tissue in her right oblique muscle to four lymph nodes and to her bone marrow. Her treatment wouldn’t be easy.
Genetic testing and the COG network help Abby achieve remission
Within days, Abby had started the care plan that included inpatient chemotherapy, surgery, and 20 rounds of radiation, and outpatient chemotherapy. Shortly after treatment began, Melissa and Abby moved into an apartment in Cincinnati where they could stay isolated from exposure to possible infections between trips to the hospital.
Abby kept her parents smiling through their worry. Her fearless confidence seemed to shine at the most inopportune moments. Like the time her mom told her to swallow a big gulp of water and instead, she spit it out like a fountain right as a doctor walked in and it landed on his pants.
While Dr. Raj was comforting Bill and Melissa, his team was already working to develop a care plan for Abby. That team included another pediatric oncologist, Christopher Dandoy, M.D., who would also become one of the family’s closest allies.
Tests revealed Abby’s cancer had spread from the soft tissue in her right oblique muscle to four lymph nodes and to her bone marrow. Her treatment wouldn’t be easy.
Genetic testing and the COG network help Abby achieve remission
Within days, Abby had started the care plan that included inpatient chemotherapy, surgery, and 20 rounds of radiation, and outpatient chemotherapy. Shortly after treatment began, Melissa and Abby moved into an apartment in Cincinnati where they could stay isolated from exposure to possible infections between trips to the hospital.
Abby kept her parents smiling through their worry. Her fearless confidence seemed to shine at the most inopportune moments. Like the time her mom told her to swallow a big gulp of water and instead, she spit it out like a fountain right as a doctor walked in and it landed on his pants.
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Genetic tests revealed that Abby received both copies of her 16th chromosome from her mom, instead of one copy from each parent. Having Alveolar rhabdomyosarcoma and a rare genetic trait makes her exceptionally unique to study.
“The genetic testing gave us a lot more information about her type of rhabdomyosarcoma. Having two chromosomes from me makes Abby even more genetically unique,” Melissa says. “But at the time, the protocols for treating rhabdomyosarcoma were the same as they’d been for decades. We’re really glad to see that COG is now able to study the deep aspects of cancer and use that to help save lives.” |
The Dedic family in the hospital.
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Over the next year, Abby and her family experienced the highs and lows of being a pediatric cancer family. It was often during the lows when Dr. Raj would be incredibly positive — always focusing on how Abby was reacting to treatment and radiation and that there is a light at the end of the tunnel.
“Early in Abby’s treatment, Dr. Raj told us about an expert he talked to” Bill says. “We didn’t realize that it was the Children’s Oncology Group at work and how collaborative the pediatric cancer culture is. It’s incredible to know they’re all coming together to create things like Project:EveryChild. Imagine if all kinds of researchers studied diseases like COG does.”
The family was relieved when Abby completed her final chemotherapy treatment in August, 2012. The central line she had for over a year was gone and the family was ready to be back together in Indiana.
“It’s over, but it’s not really over. That’s when the adrenaline slows down and all the emotions hit hard,” Melissa says. “You’re so relieved and also uneasy about being one of the lucky families who take their child home.”
The family was relieved when Abby completed her final chemotherapy treatment in August, 2012. The central line she had for over a year was gone and the family was ready to be back together in Indiana.
“It’s over, but it’s not really over. That’s when the adrenaline slows down and all the emotions hit hard,” Melissa says. “You’re so relieved and also uneasy about being one of the lucky families who take their child home.”
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In her own terms, Abby joins the research movement toward better treatment
When Abby was diagnosed, she didn't fully understand what it meant to have cancer. During treatment, a chance opportunity bonded Abby with three other girls who were also going through chemotherapy. |
Abby (above) with brother in 2014, and (right) ten years later.
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“We met at a Cincinnati Reds game. We all went out on the field after the game ended and their announcer kissed our bald heads,” Abby laughs. “We all became friends after that day.”
Years later, her mom sat her down to tell her that one of those friends had passed away. That's when Abby realized that cancer was a fight for her life. And it's part of the reason she believes in research. “We went to the funeral and I remember hugging her mom who thanked us for coming. Over the next couple of years, I started figuring out what it meant to go through cancer,” Abby says.
Today, Abby keeps busy by volunteering to help kids with intellectual and developmental disabilities participate in PE class and other activities. This year her plans involve joining the choir, participating in musical theater, and learning the basics of sign language so she can communicate with one of her friends who is deaf. And she’ll be getting her driver’s license.
“I’m really excited to be in high school because there are so many opportunities to be creative,” Abby says.
Years later, her mom sat her down to tell her that one of those friends had passed away. That's when Abby realized that cancer was a fight for her life. And it's part of the reason she believes in research. “We went to the funeral and I remember hugging her mom who thanked us for coming. Over the next couple of years, I started figuring out what it meant to go through cancer,” Abby says.
Today, Abby keeps busy by volunteering to help kids with intellectual and developmental disabilities participate in PE class and other activities. This year her plans involve joining the choir, participating in musical theater, and learning the basics of sign language so she can communicate with one of her friends who is deaf. And she’ll be getting her driver’s license.
“I’m really excited to be in high school because there are so many opportunities to be creative,” Abby says.
Bill and Melissa acknowledge keeping up with Abby and her brother is a full-time job. But the full calendar and carpool strategies are worth it. They’re in awe of the drive she carries to fearlessly take on challenges that she chooses, and challenges that choose her.
“This study represents our whole family’s support for COG and rhabdomyosarcoma families," Bill says. “But for Abby participating in the GEARS research will give her a better understanding of her cancer and fulfill her drive to help others when they’re in need.”
In her own words, Abby imagines the handful of kids whose genetics are so similar to hers that doctors will be able to look to the GEARS study and point to her as a source of knowledge.
“I wanted to contribute to this study because there are so few of us who have had rhabdomyosarcoma and this unites all of us survivors to help others. One day there might be a kid who is really similar to me and that would be cool if doctors could use my information to help treat them,” Abby says. “I want to know all about what they learn and how it helps.”
“This study represents our whole family’s support for COG and rhabdomyosarcoma families," Bill says. “But for Abby participating in the GEARS research will give her a better understanding of her cancer and fulfill her drive to help others when they’re in need.”
In her own words, Abby imagines the handful of kids whose genetics are so similar to hers that doctors will be able to look to the GEARS study and point to her as a source of knowledge.
“I wanted to contribute to this study because there are so few of us who have had rhabdomyosarcoma and this unites all of us survivors to help others. One day there might be a kid who is really similar to me and that would be cool if doctors could use my information to help treat them,” Abby says. “I want to know all about what they learn and how it helps.”
More than a decade after treatment, Abby continues to inspire her care team
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I first met Abby during my pediatric hematology/oncology fellowship at Cincinnati Children's. And from the beginning, it was clear that Abby was a fighter.
Having an underdeveloped lung made Abby particularly susceptible to infections and complications from chemotherapy. Now, years later, I balance my time between caring for patients and doing research to find better ways to reduce treatment-related complications while improving outcomes for children who have stem cell transplants. I’m particularly committed to finding ways to support children like Abby, whose immune systems are exceptionally fragile. Having Abby continue her survivor journey with us, as a research contributor in Dr. Lupo’s GEARS project is humbling and motivating. It reinforces why all of us at the Children’s Oncology Group do what we do and inspires us to keep pushing for better outcomes for all pediatric cancer patients. To Bill, Melissa, and Abby—thank you for allowing me to be part of your journey. Your courage, resilience, and faith have left a lasting impact on me, personally and professionally. Abby, you have defied the odds in so many ways, and I am incredibly proud of your accomplishments. I know that your future holds amazing things, and being part of your care has been a privilege. Keep shining and inspiring others — you are a beacon of hope. – Christopher Dandoy, M.D., MSc, Cincinnati Children’s Hospital Medical Center |
Dr. Dandoy with Abby during her treatment.
Dr. Dandoy, Bill Dedic, Abby and Melissa Dedic
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