Stories about: neurosurgery

Our patients’ stories: Sledding safety counts

By Leah Buckley

Leah

It was a few years ago, but I still remember that cold, grey February morning vividly. As I tugged on my boots and winter coat—and fought with my zipper through my thick gloves—I called out to my mother to let her know that I was heading out with friends to go sledding.

“Be careful,” she said from the other room, “I love you.”

Those were the last words my mother said to me on what would turn out to be one of the scariest days of my life.

As we pulled up to the Newton Commonwealth Golf Course and stepped outside, all we could see was our breath in the cold morning air and the glint of the sun reflecting off the icy hills sprawled in front of us. We were excited to hit the slopes, but the ground was so iced over it took us a good 15 minutes just to reach the top of the first hill. The ride down was much, much faster.

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Clues to Chiari: A family’s search makes all the difference

Ryan

At 7 months old, Ryan Murphy of Ulster County, NY, was a full-term, healthy, happy baby. He weighed almost 23 pounds—in the 95th percentile for his age.

“Everything was picture perfect until he was around 9 months old,” says his father, Justin. “He was thriving.”

But then things changed. Ryan began having difficulties feeding: He began coughing and choking.

“Over the next few months, it progressively got worse,” recalls his mother, Kerri. “Then solids became a problem. He would gag, throw up, cough.”

But Ryan began losing weight. An ear, nose and throat specialist (ENT) recommended a modified barium swallow test, which showed that Ryan was aspirating liquids into his lungs. Refusing thickened liquids, Ryan could drink only through a low-flow bottle nipple designed for preemies.

Then came an injection of a collagen gel around Ryan’s larynx, on the theory that he might have an abnormal opening in his larynx, a rare condition known as a laryngeal cleft.

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From boos to hope: Challenging the dogma about deadly brain stem gliomas

Hailey Olson, seen here with Susan Chi, MD, and Mark Kieran, MD, PhD, is the first patient in a trial challenging the conventional wisdom about rare brain stem tumor. (Image: Sam Ogden, DFCI)

Hilary Olson had no reason to suspect that her daughter Hailey might have a brain tumor.

“Her smile was starting to droop a little, and one of her eyes was a little jumpy,” says the 6-year-old’s mother. “We took her to see a neurologist, and he thought she might have pinched a nerve.

“But when he sent us to Boston Children’s Hospital for an MRI,” she continues, “the radiologists sent us straight down to the emergency room.”

Hailey’s diagnosis came as a huge jolt: a rare, almost always fatal tumor called diffuse intrinsic pontine glioma (DIPG). “The doctors were shocked by the size of the tumor,” Hilary recalls.

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Children's patient gives back

Remember Amy Rucki? She’s the high school student who survived a brain tumor after extensive care at Children’s Hospital Boston. Her 8 hour procedure to remove the tumor was filmed for ABC’s medical documentary series Boston Med, but the footage never made it on TV. But as Amy’s strong recovery proves, she’s resilient; it took more than a trip to the cutting room floor to stop her from sharing her inspirational story with the world. The 17 year-old wrote an amazing blog post for Thrive, giving our readers insight to what it’s like to be a neurosurgery survivor at such a young age, and provide hope for other families dealing with surgery and hospitalization.

Now that she’s on the mend Amy is volunteering at Spaulding Rehabilitation Hospital, working with kids and teenagers who are also on the road to recovery. As a high school senior she’s gearing up for college and says the care she received at Children’s has inspired her to go into the medical field. She’s currently looking into nursing programs at local colleges and getting excited about the possibilities the future holds for her. Here’s a video update on Amy’s status, her volunteering efforts and plans for the future. We couldn’t be more proud, please join us in saying, “thanks for giving back Amy!”

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