Patient Stories

All Articles in the Category ‘Patient Stories’

The Hunger Games: How a Team at Children’s Uses Hunger to Teach Kids to Eat

Lydia digs in.

Lydia digs in.

Last April, at the age of 12, Lydia Vaughan felt hungry for the first time.

The new sensation – along with support from her family and a team of specialists at Seattle Children’s – helped her learn to do in two weeks what she had never done before: put food in her mouth and swallow it. Read full post »

Electricity, Dishwashers and What Really Matters

Dr. Abby Rosenberg, medical leader of Seattle Children's Adolescent and Young Adult (AYA) Cancer Program

Dr. Abby Rosenberg, medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program

This past week, my 10-year-old son was assigned a science experiment to conduct at home: exist for a full hour without electricity. During our family’s allotted hour, some things became incredibly difficult (imagine hand-washing dinner dishes in darkness). But the rest became wonderfully easy. With no way to do routine activities involving smartphones, TVs, computers, or other electronics, we just sat, talked and played board games by candlelight.

My son’s conclusion from this assignment? Without electricity, life is richer. He commented that he appreciated this opportunity to just be present and be together. “It’s different,” he explained. “In a weird way, electricity takes us away from each other. When you remove the electricity, you spend more time doing what’s important to you – what matters. You realize how lucky you are to have each other…and to have electricity the rest of the time.”

This was when my son’s simple assignment suddenly reminded me of what I see in and strive to teach our patients and families everyday. Read full post »

Sarah Wins $100,000 Scholarship, Showcases Football Skills After Spinal Fusion

Sarah and CheckThe Pac-12 Football Championship Game featuring the Oregon Ducks and the Arizona Wildcats was more than just a football game to 18-year-old Sarah Roundtree, a freshman at the University of Oregon. It was the chance of a lifetime: a shot to win a $100,000 scholarship. The only catch to winning, she had to compete against another individual in a football throwing contest in front of thousands of screaming football fans at the championship game.

What makes Roundtree’s story so incredible isn’t only the fact that she won; it’s her journey to the championship that makes her special. Less than a year ago, Roundtree was at Seattle Children’s Hospital undergoing an operation to fix two 50 degree curves in her spine.

“Looking back at the past year, I can’t believe I’m where I am today,” said Roundtree. Read full post »

Poke and Press: Patients Benefit From New Acupuncture Program

Jaime Ralston-Wilson (left) and Elizabeth (Liz) Artola

Jaime Ralston-Wilson (left) and Elizabeth (Liz) Artola

When Gailon Wixson Pursley came to Seattle Children’s, she was in so much pain she couldn’t walk. At 19 years old, Gailon was diagnosed with sarcoma, an aggressive cancerous tumor in her hip flexor muscle.

Gailon’s treatment plan included surgery to remove the large tumor, radiation and chemotherapy, along with a long list of medications to help manage the side effects of her diagnosis and treatments.

Gailon’s mom, Yvette Wixson, asked whether another treatment was available for her daughter: acupuncture. To Yvette’s delight, the answer was yes.

Seattle Children’s inpatient acupuncture program began as a six-month pilot in January 2014. During the pilot, acupuncturists were available four hours a day, five days a week. Before the pilot, acupuncture was available to outpatients, but only on a sporadic, ad-hoc basis for inpatients. Read full post »

Pushing Limits, Saving Lives

As we head into the New Year, we’d like to reflect on some of the incredible clinical advancements of 2014 that show how our doctors have gone the extra mile for our patients.

In the Children’s HealthLink Special video above, watch how futuristic medicine has saved the lives of the littlest patients at Seattle Children’s. From 3D-printed heart models to liquid ventilation, doctors and families reveal the amazing benefits of innovative treatments that challenge the status quo. Read full post »

A Year in Review, Looking Back at the Top Posts of 2014

New YearIn honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!

Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials

Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got ‪FDA‬ approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.

Visit with Macklemore Helps 6-Year-Old Heart Patient Recover

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »

One Enzyme Short: How a Clinical Trial Made All the Difference for a Young Boy with a Metabolic Disease

Edited Pic 1

Sutton Piper, age 3

Sutton Piper, 3, was born with a metabolic disorder that made his muscles too weak for crawling, walking and talking. After being referred to Dr. Sihoun Hahn, a biochemical geneticist at Seattle Children’s, Sutton is bouncing on his mini-trampoline and chatting up a storm. 

Sutton Piper came into the world on his own terms: nine days late.

At 6 months, he’d made little attempt at rolling over; at 9 months, he showed no interest in sitting up on his own; and, by his first birthday, he wasn’t even trying to crawl. Read full post »

Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials

Elise Pele had been in labor for hours awaiting the arrival of her baby girl, Tatiana, on the evening of Aug. 29. Elise remembers wanting desperately to hear her baby cry – a sign that everything was ok. But that cry never came. She saw Tatiana for only a few seconds before nurses rushed her to the neonatal intensive care unit (NICU) at a local hospital.

“I instantly knew something wasn’t right and I was terrified,” Elise said. “The doctors told me my baby wasn’t breathing right and had to be transferred to Seattle Children’s.”

Tatiana experienced meconium aspiration syndrome where she inhaled a mixture of meconium (stool) and amniotic fluid during labor due to stress, which obstructed and irritated her airways, leading her down a path where doctors thought she would likely die. Read full post »

Common Tumors, Better Treatments: Researchers Discover Why a Blood Pressure Medication Shrinks Infantile Hemangiomas

Researchers at Seattle Children’s are constantly asking questions and investigating new treatments with the goal of improving care for our patients. Two investigators from Seattle Children’s Research Institute recently came together to determine the best therapy for children suffering from infantile hemangiomas.

A breakthrough treatment

Before she took propranolol, hemangioma tumors covered Shakira Locke's face and neck - and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.

Before she took propranolol, hemangioma tumors covered Shakira Locke’s face and neck – and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.

Right after Lorene Locke gave birth to her daughter Shakira, she noticed what looked like a rash on the newborn’s face. Three weeks later, doctors found an abnormal clump of vessels, called an infantile hemangioma, growing out of control inside Shakira’s throat and on her neck, face and ear, blocking her airway and leaving her gasping for air.

While most hemangiomas go away on their own and don’t cause problems, children like Shakira need multiple surgeries and procedures to remove the growths. Dr. Jonathan Perkins, an otolaryngologist and an investigator at the Center for Clinical and Translational Research at Seattle Children’s Research Institute, has spent years studying hemangiomas in search of a less-invasive approach. When French researchers discovered that a blood pressure medicine called propranolol could shrink away hemangiomas, Perkins found the breakthrough he was waiting for. Read full post »

Families Find Hope in Success of Cancer Immunotherapy

Researchers at Seattle Children’s are sharing their success thus far in treating leukemia using immunotherapy – a technology that uses the body’s own immune system to destroy cancer cells. While scientists are excited about progress of these clinical trials, no one is more grateful for this research than the families of the patients who have benefited from it.

A tiny girl, a tough decision

Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.

Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.

In March of this year, Andy and Maggie Oberhofer, of Portland, Ore., faced the most difficult dilemma of their lives. Their baby daughter, Greta, was dying. She had been diagnosed with acute lymphoblastic leukemia when she was just 3 months old and standard treatments were not working. Her family prepared for the worst.

“Greta had barely survived chemotherapy and a transplant,” Andy Oberhofer said. “We didn’t want her to suffer any more if she couldn’t be cured. We found ourselves considering end-of-life care for our 1-year-old daughter.”

But then, Greta’s family found hope. Greta qualified for a cancer immunotherapy trial at Seattle Children’s Hospital designed to treat leukemia patients who have relapsed after a transplant. This innovative technology reprograms the body’s T cells and reintroduces them into the immune system, where they hunt down and destroy cancer cells.

“Immunotherapy just made sense to us,” said Oberhofer. “We believed it could work.” Read full post »