Friday, December 16, 2016

Olivia Finds Inner Strength, Grace Through a Complex Diagnosis

Perseverance and grace are qualities that people often learn through life’s experiences. For 17-year-old Olivia Renzi, those qualities are personal keystones that allow her to transform stumbling blocks into stepping stones.

 

Olivia Renzi on her 17th birthday. Photo courtesy of Andra Renzi/

For years, doctors could not figure out why Olivia was growing so rapidly. She was much taller than other children her age and wasn’t developing normally. In 2013, her mother, Andra, of Providence, RI, knew something wasn’t right, so she brought her then 14-year-old daughter to MassGeneral Hospital for Children (MGHfC). She and Olivia met with Gleeson Rebello, MBBS, in Pediatric Orthopaedics.

“When I first met Olivia, I knew she had bigger fish to fry than just her orthopaedic issues that I treated her for,” said Rebello. “She’s very tall for her age, about 6’5”, so I thought her medical issues could have an endocrine component as well.”

Rebello referred the Renzis to Vibha Singhal, MBBS, a pediatric endocrinologist at MGHfC. That same year, after several blood tests and imaging tests, Singhal diagnosed Olivia with gigantism, a rare growth disorder caused by a non-cancerous pituitary tumor in her brain.

“Gigantism is a very rare and complex disorder and patients with gigantism can benefit from the multidisciplinary approach that we take at MGHfC, as we’ve seen with Olivia,” said Singhal.

 

Olivia Renzi at a formal event in 2016. Photo courtesy of Andra Renzi.

Upon hearing the news of the brain tumor, Olivia tapped into her inner well of courage and faced her challenges head on. “When they did the MRI and my mom told me they found something, I sort of knew what it was,” said Olivia. “I just thought to myself, ‘Okay, this is what they found and now I have to take care of it.’ I chose to see the treatments as ways of helping me move toward getting better. In my mind, that was the only way to look at it.”

Amid several medication changes to control her symptoms, surgery to remove some of the tumor and radiation to shrink what couldn’t be surgically removed, Olivia took every obstacle in stride. From the past three years of treatment to today, her mother offered steadfast support and love and tried to keep her daughter’s life as normal as possible.

“Even though we visit the doctor’s office a lot, Olivia is still very active and does just about everything a normal teenager would do,” said Andra. “She’s my inspiration and she keeps me going. I just try to give her the most normal life I can.”

After her surgery, Olivia was also diagnosed with narcolepsy, a sleep disorder that causes overwhelming drowsiness. Despite this and her other challenges, Olivia is now a senior in high school and takes college-level courses in animation and graphic design at Lesley University in Cambridge, Mass. She also traveled to New York City this past August to study film production through a summer program for young adults. Her medication regimen, diligence with doctors’ appointments and positive attitude keep her on track to do the things she enjoys.

“One thing I’ve learned throughout my life is how to calm myself down and be okay. When you’re faced with a struggle, it’s important to have a big cry and let those emotions out because once you do, you’re through it and you feel better,” said Olivia. “I’ve let out my emotions throughout my treatments and I feel like I can move forward. I know everything the doctors do is to help me feel better.”

For Andra, the care that Olivia receives at MGHfC has allowed Olivia to thrive. “Mass General was there for us in a time of what felt like hopelessness. They knew what they were doing and they did it,” she said. “You’re not just another appointment, you’re not just a number. You feel like part of a team, like you’re valued and they’ll do anything to help figure out what’s wrong.”

For Singhal, Olivia is an endless source of learning and inspiration, not only as a patient, but also as a person. “Seeing Olivia in such a great place amid such a difficult diagnosis is really all I could ask for,” said Singhal. “Olivia inspires me and challenges me in so many ways on a human, medical and social level. It’s so rewarding to care for her.”

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