Patient Stories

All Articles in the Category ‘Patient Stories’

Different Cancers, Same Drug: New Trial Targets Common Genetic Pathway in Tumors

Connor Pearcy, 5, with his family. Born with a tumor that did not respond to traditional therapies, he was enrolled in a clinical trial testing a new cancer drug. After four months of treatment, scans show his tumor is gone.

Connor Pearcy, 5, was born with a tumor below his knee. A teenage boy developed a cancerous thyroid tumor in his neck. Connor and the teenager have very different tumors, but they are both on the same drug. How is that possible?

A new pediatric cancer trial at Seattle Children’s is testing a drug that targets a specific set of genetic alterations associated with soft tissue tumors in different parts of the body. Connor and the other patients in the trial have tumors that harbor one of the characteristic genetic changes the drug is designed to exploit.

Dr. Katie Albert, pediatric oncologist, and Dr. Doug Hawkins, associate division chief of Hematology and Oncology at Seattle Children’s, are overseeing the trial, which is making precision medicine possible for young cancer patients.

“It’s not easy having a child born with a tumor,” Amy Pearcy, Connor’s mom, said. “I appreciate that Dr. Hawkins never gave up looking for something new to offer, and so far it seems like we have found it.” Read full post »

Three Cheers for the Team That Helped Wesslee Overcome Pain

Through Seattle Children’s Pediatric Pain Rehabilitation Program (PReP), physical therapist Sharon Yurs challenges Wesslee Holt to a game of hoops, with some extra balance work added in.

Last spring, Wesslee Holt rolled his ankle at his middle school in Shelton, Washington. The 12-year-old is a dedicated member of his cheer team and was eager to return to the squad quickly. He followed his doctor’s instructions to immobilize the foot and wear a boot — but his pain only increased over time.

Wesslee started using a scooter to keep weight off his foot and rested it as much as possible. Nothing seemed to work. His skin became splotchy and red, and was so sensitive to touch that he couldn’t put a sock or shoe on. He felt depressed and anxious, pulled out of cheer team completely and even left school.

His mother, Steph Fyfe, knew it was time for a different approach. “People wanted to put Wesslee on supplemental security income and call him disabled, but I knew there had to be a way for him to get better,” she said.

She was referred to Seattle Children’s Pain Medicine Clinic and learned Wesslee was suffering from complex regional pain syndrome (CRPS), which sometimes accompanies a routine injury and causes the nerves to send extreme pain messages to the brain. The good news is that Seattle Children’s was able to offer Wesslee a unique treatment option: the Pediatric Pain Rehabilitation Program (PReP).

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Compassionate, Coordinated Care at Seattle Children’s Gender Clinic

Jay waits for his appointment at Seattle Children’s Gender Clinic

Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.

Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.

Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.

Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.

“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”

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Finding Hope, Life-Changing Care 2,200 Miles From Home

Alexis, a 7 year-old vascular anomalies patient from Indiana

By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.

Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.

The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.

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Chris Pratt and Makenna Form a ‘Dino-Mite’ Team to Help Kids at Seattle Children’s

My name is Makenna Schwab and I’m 14 years old. Over the course of my life, I have been treated at Seattle Children’s Hospital where an amazing team of doctors have performed over 15 life-changing and life-saving surgeries for me.

I was born with a rare connective tissue disorder called Larsen syndrome, which causes dislocations in my joints, instability in my spine and trouble with my breathing. I’ve had to face a lot of challenges, but rather than let my disability hinder me from what I love to do, I decided to embrace it and try to use my experience to create something positive.

When I was 8 years old, I asked my mom if I could sell cookies and lemonade and donate all of the proceeds to Seattle Children’s as a way to give back. Since then, I’ve worked on a variety of projects — from bake sales and toy drives to making packs of food for inpatient families. The money I’ve raised has helped to provide uncompensated care to families at Seattle Children’s. It has also allowed me to provide red wagons for patients in the hospital and purchase new medical equipment to help treat kids like me.

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The Unwavering Dedication of Seattle Children’s Volunteers


Adorned in pastel blue smocks with smiles from ear-to-ear, it can be easy to spot a Seattle Children’s volunteer.

From the volunteers that do arts and crafts with patients in the playroom to those who deliver key items to patient rooms and refill coffee pots for medical staff, every volunteer at Seattle Children’s is significant in helping to keep the hospital running smoothly each day.

Just last year, volunteers donated over 120,000 hours of service, which highlights the commitment of the more than 500 individuals who serve Seattle Children’s every month.

In honor of National Volunteer Week, Seattle Children’s is showing gratitude to its volunteers by sharing the stories of six individuals who have generously donated their time to strengthen the organization’s mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.

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Finding Strength for the Long Haul

Kim Arthur, clinical research scientist at Seattle Children’s, holds both of her preemie daughters for the first time in May 2013.

My daughter pushes my hand away abruptly and the spoonful of food goes flying. I turn to her twin to coax her to eat a spoonful of puréed lentil soup, and she promptly gags on the tiniest lump and spits it out.

Typical case of the terrible twos? No, they are 3 and a half, and they are not just your average picky eaters. They were born prematurely at 26 weeks, and after five months in the hospital they had to get surgically placed feeding tubes in their stomachs because they weren’t able to breastfeed or bottle-feed.

And here I am, three years later, doing everything in my power to coax them to eat enough food by mouth to get rid of those tubes.

I turn away and say out loud, “I can’t do this.”

It’s not the first time I’m saying these words. I either say them or think them every time I sit down for practice meals with my girls. We are supposed to practice eating four times a day in order to get them to eat enough that we can get rid of those tubes.

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A Mother’s Pain Motivates a Movement to Prevent Child Abuse

In recognition of National Child Abuse Prevention Month, On the Pulse shares a heart-wrenching story about a mother whose son suffered debilitating injuries at the hands of a babysitter. Through the pain and daily struggle of caring for a fully disabled child, she has become a driving force for advocacy and awareness for child abuse prevention.

What began as a normal day for Jamie Thompson, ended in a tragedy that would forever change her life.

On May 20, 2010, Thompson received an unexpected call at work. It was her 8-month-old son’s babysitter.

“I was told he wasn’t breathing and paramedics had arrived to the babysitter’s home to help resuscitate him,” said Thompson. “As I frantically left work, I received a second call — this time from my husband.”

With news from her husband that her son, Colby, was not responding, Jamie drove straight to Seattle Children’s where he was urgently transported to by helicopter.

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Researchers Aim to Put an Agonizing Problem for Adolescents With Chronic Pain to Rest

Nicole Reeder and her mother, Susan, both participated in the I-SPY study to address Nicole’s migraine and sleep issues. Nicole is now benefiting from extended quality sleep and diminished headache pain following the study.

Days filled with pain, followed by restless nights, are more than nightmare scenarios for adolescents with chronic pain. Approximately half of all adolescents who suffer from chronic pain also have insomnia, a disorder characterized by difficulty falling asleep, staying asleep and experiencing poor quality sleep.

While there is ample research studying effective methods to treat adults who experience chronic pain and insomnia, there is very little as it pertains to adolescents. Seattle Children’s Research Institute is leading the way in changing this with an approach that focuses on empowering patients to improve their sleep to help treat their pain.

Dr. Tonya Palermo, an international expert in pediatric pain management at Seattle Children’s Research Institute, led a study recently published in the Journal of Clinical Sleep Medicine. The study showed four brief sessions of cognitive behavioral therapy for insomnia (CBT-I) led to sustained improvement in sleep quality, psychological symptoms, and quality of life for adolescents experiencing insomnia and a co-occurring physical or mental health condition such as chronic pain, anxiety or depression. Read full post »

From Transplant Patient to Aspiring Transplant Surgeon

Wade Washington underwent a kidney transplant at Seattle Children’s in 2013 and is now a student at the University of Washington with career aspirations of working in healthcare.

Growing up, 19-year-old Wade Washington knew he’d one day need a kidney transplant. The question was never if, but when.

“I never really knew what normal was,” said Washington. “I was born with chronic kidney disease, and so it was what I was used to.”

As a child, Washington’s condition was manageable, but as he grew up his condition worsened. As Washington hit puberty, his kidneys began to fail.

“Wade was born with renal dysplasia, a congenital malformation of his kidneys,” said Dr. Andre Dick, surgical director of the Kidney Transplant Program at Seattle Children’s. “Once he entered puberty, his kidneys couldn’t meet his body’s metabolic demand. We knew he’d need a transplant.” Read full post »