Patient Stories

All Articles in the Category ‘Patient Stories’

A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye. Read full post »

New Use of Old Surgical Tool Transforms Brooklyn’s Life

Brooklyn Clasby, now 10 years old, received a Potts shunt at the age of 8.

In February 2010, Jennica Clasby knew something was wrong when her 3-year-old daughter, Brooklyn, said she needed to sit down because her “heart hurt.”

“I thought it was really odd to hear that coming from a 3-year-old,” Clasby said. “I sat her down on my lap, put my hand over her heart and I was terrified to feel that it was practically pounding out of her chest.”

Clasby and her husband Brandon, who lived in Colorado, rushed Brooklyn to the emergency room where they were shocked to learn she was in heart failure. Brooklyn was diagnosed with pulmonary hypertension (PH), or high blood pressure in the lungs. PH is a chronic condition that occurs when the muscle in the wall of the blood vessels and arteries in the lungs thickens and cannot properly expand to receive blood coming from the heart. This causes resistance to the heart, which then works harder to pump the blue blood in need of oxygenation into the lungs. Over time, the strain on the heart can cause it to fail.

“Our world was turned upside down,” Clasby said. “It’s incredibly hard to hear that your daughter has an incurable, lifelong disease that will progressively get worse. It changed the way we lived and gave us a new appreciation for life.”

Read full post »

How a Genetic Discovery Could Explain Parker’s Mysterious Medical Case

The right side of Parker Walsh’s body and brain are bigger than the left. Doctors at Seattle Children’s Research Institute are studying a genetic mutation that could point to a cause for his condition.

When Parker Walsh flashes his toothy smile, he can get everyone around him grinning as well. That smile has pulled Parker, 21, and his family through a lot of tough times.

Parker was born with a host of medical issues that have impacted his development—a craniofacial abnormality, gastrointestinal issues, neurological delays and speech difficulty. Doctors could not pinpoint a specific cause for his conditions, and offered the best treatments available based on their diagnoses.

Now, doctors at Seattle Children’s Research Institute studying a gene that controls cellular growth have provided clues for what might have contributed to some of Parker’s medical issues, and the information could lead to improved diagnosis and therapies for babies and kids that share Parker’s experience. Read full post »

Celebrating a Decade of Pediatric Research: Patients and Families Share Stories

What if your child could help unlock a mysterious diagnosis or test a new treatment?

Each year, hundreds of patients participate in research studies conducted by Seattle Children’s Research Institute. Although the focus of the studies varies broadly, they all have one common goal: creating a better future for generations of children.

This year, the research institute celebrated its 10th anniversary. In just one decade, the research team has grown from 40 people to more than 1,500 faculty and staff members conducting groundbreaking research in state-of-the-art labs in three downtown Seattle buildings.

To commemorate this milestone, we interviewed young people and their families who have propelled research on concussions, asthma, Kawasaki disease and other conditions our researchers work on every day. Thanks to the families and young people who contribute to research, Seattle Children’s can improve treatment and care for children’s illnesses around the globe.

Top 6 Seattle Children’s Blogs of 2016

Bowen Warren, 3, was in the top blog post from 2016. Bowen was born with three heart defects and was brought to Seattle Children’s for emergency surgery.

Every day, extraordinary patients visit Seattle Children’s Hospital and researchers work toward medical breakthroughs at Seattle Children’s Research Institute. From scientific discoveries that make you say ‘wow’ to resilient patients who make you say ‘aww,’ these six blog posts from 2016 struck a chord with readers and were the most popular stories from the year.

1. Born With Three Heart Defects, Bowen is Now Thriving As He Approaches His Third Birthday

The top blog post in 2016 featured Bowen Warren, who was rushed to Seattle Children’s for emergency heart surgery when he was born with three heart defects.

The Heart Center team developed a personalized treatment course for Bowen that included cardiac magnetic resonance imaging, echocardiography and creating a 3-D replica of Bowen’s heart that allowed surgeons to ‘practice’ a complex procedure called a Nikaidoh before getting him in the operating room. Today, Bowen is a happy, healthy and thriving 3-year-old. Read full post »

Seahawks Bring Joy to 12s Big and Small at Seattle Children’s

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Reef, 16 months old, poses for a photo with Richard Sherman.

Blue Tuesday at Seattle Children’s was a little more spirited today thanks to a special visit from the Seattle Seahawks players and members of the Sea Gals. Patients and families were all smiles as they got to meet their favorite football players during the team’s annual Captain’s Blitz visit.

“It was so exciting,” said Joanna Gromadzki. Gromadzki’s 16-month-old son, Reef Gromadzki-Johnson, has been a patient since he was 2 months old after he was diagnosed with pulmonary vein stenosis. “Seattle Children’s is like a second home to us, we’ve been here for so long. Today was special. We’re huge fans of the Seahawks!”

The Seahawks visit really brightened the day for Reef and other 12s in the hospital, and brought holiday cheer to some young and loyal fans. Read full post »

Teen Gives Back to the Hospital That Saved His Life

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Skyler, 17, poses with a sock puppet he designed.

When Skyler Hamilton was born, his mother called him her miracle baby. He was perfect.

It wasn’t until he turned 7 years old when the family noticed something wasn’t quite right. What started as a limp quickly progressed into something unimaginable.

Three months later, Skyler was diagnosed with a rare and aggressive brain tumor, medulloblastoma.

On August 13, 2006, Skyler was admitted to Seattle Children’s. Four days later, he had surgery to have the tumor removed.

“His tumor was so advanced,” said Margaret Hamilton, Skyler’s mom. “It was the worst nightmare you could imagine.” Read full post »

A Miracle in the Making

Greta Oberhofer’s leukemia is in remission thanks to T-cell immunotherapy developed at Seattle Children’s.

Greta Oberhofer survived a bone marrow transplant for leukemia when she was just 8 months old — but the side effects nearly killed her. Then, six months later, her family’s worst fears came to life.

“My husband put the doctor on speaker phone — he told me Greta relapsed and that her prognosis was bad,” remembers her mother, Maggie Oberhofer. “She had already suffered so much with the chemotherapy and transplant, and we didn’t want to put her through that again. We didn’t know what to do.”

The Oberhofers — who live in Portland — were considering hospice for Greta. Then they heard that Seattle Children’s Dr. Rebecca Gardner was testing a therapy that uses reprogrammed immune cells to attack certain kinds of leukemia.

“Dr. Gardner said not to give up because her therapy was putting kids like Greta in remission, and that the side effects were often a lot easier to tolerate,” Oberhofer says. “We suddenly had a way forward.”

A few months later, the Oberhofers watched Greta’s reprogrammed cells drip into her body. Two weeks after that, her cancer was in remission.

Read full post »

Tumor Paint Brings Light to Toddler’s Brain Tumor

Hunter Coffman, 2, with his family.

Hunter Coffman, 2, with his family.

In December of last year, Laura Coffman began to notice that something wasn’t quite right with her 2-year-old son, Hunter. He was leaning to one side and seemed to lose his balance easily. When he became lethargic and started vomiting a few days later on Dec. 28, she knew it was time to see the pediatrician.

After all standard tests came back normal, they were sent to Seattle Children’s for further testing and to find an answer. Unfortunately, it was far worse than anything Coffman could have imagined.

“What I thought was probably just Hunter being a wobbly toddler with a virus turned out to be a brain tumor,” said Coffman. “I will never forget that day. It was the most traumatic six hours of our lives.” Read full post »

How a Teddy Bear is Helping in the Battle Against Cancer

erin-with-t-bearHe may not be able to fly, or be as fast as the speed of light, but for children who have been diagnosed with cancer at Seattle Children’s, the cuddly teddy bear who wears a mask and purple cape is still a super hero to them – he gives them strength. His name is T-Bear and he’s bringing hope to children with cancer.

Meet T-Bear, He’s more than just a teddy bear

Catherine Lindgren, director of the Therapeutic Cell Production Core (TCPC) and its’ team at Seattle Children’s Research Institute, had an idea to make a life-changing moment feel a little more personal for cancer patients undergoing immunotherapy, a new treatment that harnesses a patient’s own immune system to seek and destroy cancer. Lindgren wanted every child to know they aren’t alone – that they have a team of support around them. And so, T-Bear was born.

“Teddy bears are historically comforting to sick children,” said Lindgren. “We wanted families to know we’re on their team, and together, we’re Strong Against Cancer.” Read full post »