Patient Stories

All Articles in the Category ‘Patient Stories’

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 »

Makenna Raises $25K to Provide Safe X-Rays to Kids Like Her

Longtime Seattle Children’s patient Makenna Schwab excitedly waits to cut the the ribbon off the low dose radiation X-ray machine she raised $25,000 for.

Patients at Seattle Children’s are benefiting from yet another fundraising project from 14-year-old Makenna Schwab, whose fearless determination in raising thousands of dollars has allowed the hospital to purchase a special X-ray machine to help treat other kids like her.

To celebrate Makenna’s latest fundraising project, which collected $25,000 for the purchase of a 3D low dose radiation X-ray machine called the EOS, Seattle Children’s threw her a heartfelt thank you party. At her celebration, there was no shortage of smiles, laughter and hugs — all for one special teen whose enthusiasm to give is boundless.

“This was more than I ever expected,” said Makenna. “It was so great seeing everyone who has supported me over the years in one room. It made me feel really special.”

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Grateful for the Family Who Saved Her Son, One Mother Reflects on Organ Donation

A year ago, On the Pulse shared the harrowing story of 8-month-old Lincoln Seay. Lincoln was born with heterotaxy syndrome, a severe birth defect that caused his heart to develop on the opposite side of his body. In order to survive, he needed a heart transplant.

In November of last year, Lincoln was placed on the transplant list, but as each day passed, his condition continued to worsen and doctors questioned if he would make it to transplant.

“We had a list of patients and he was the one we were most concerned about,” said Dr. Michael McMullan, surgical director of heart transplantation at Seattle Children’s. Read full post »

Rap Artist Desiigner and Love Your Melon Deliver Lyrical Encouragement to Kids with Cancer

Rap artist Desiigner and seven-year-old cancer patient Ewan Lill show off their superhero artwork.

On Monday, patients in Seattle Children’s Cancer Unit were given the special opportunity to meet a rap superstar and collect some stylish swag from Love Your Melon, an apparel brand that has given more than 90,000 hats to kids battling cancer and over $2.6 million to support pediatric cancer research.

After wrapping up his Seattle concert the night before, Desiigner, best known for his Billboard chart-topping song “Panda”, made a surprise pit stop to visit kids at Seattle Children’s. During his visit, Desiigner passed out Love Your Melon hats and met with patients, giving impromptu rap performances and creating colorful superheroes.

“It’s a blessing being able to visit these kids,” said Desiigner. “I want to do what I can to make them happy, and working with Love Your Melon is helping me do that.”

Penny Lees, clinical manager of Seattle Children’s Child Life Department, was thrilled when she learned Love Your Melon and Desiigner wanted to spread their generosity to the hospital’s young cancer patients.

“The work that Love Your Melon is doing to help to raise awareness for childhood cancer is incredibly impactful,” said Lees. “Their interest in coming to the hospital to meet the kids who inspire their mission is a wonderful thing to see.”

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Finding My Village

Kristin Jarvis Adams (back right) found different forms of support when her son Andrew (bottom right) was diagnosed with autism, and then years later when he battled a rare immune disorder. Also pictured are her husband, Jon, and daughter, Hannah.

The proverb that suggests it takes a village to raise a child can be easily adapted for parents facing the various challenges that come with having a child with special needs and circumstances. Parents sometimes need the support of a village. Author Kristin Jarvis Adams shared her experiences with On the Pulse in finding her village when her son, Andrew, was diagnosed with autism and years later, when he was treated and overcame a rare immune disorder at Seattle Children’s and Seattle Cancer Care Alliance. Adams, who is a member of the Autism Center Guild at Seattle Children’s, tells her family’s story in her book The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful.

For 10 years my husband and I had been making trips to and from Seattle Children’s with our autistic son, Andrew, who suffered from an unheard of progressive inflammatory disease. Andrew had been in the hospital for months, his body riddled with gaping ulcers, his organs compromised by chronic inflammation. Now we were in the middle of chemotherapy and radiation treatments that were preparing him for an experimental bone marrow transplant. It was our last hope.

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Kenley Snowboards With Prosthetics, Proves if There Is a Will There Is a Way

Kenley Teller, 6, snowboards with two prosthetic legs.

Watch 6-year-old Kenley Teller snowboard down a slope and you’ll notice two things right away: a big smile on her face and her fiery red hair billowing in the wind beneath her helmet. What is not apparent are her two prosthetic legs.

“She’s free when she snowboards,” said Kenley’s mother, Mary Teller. “I don’t want to say she feels normal, because how do you define normal anyway? She may need to do things a little different than other people, but she can still do them. I’m constantly in awe of her.” Read full post »

Care Team’s Casting Creativity Brings Joy to Patients

Maggie Burke, 9, aspires to be an Olympic gymnast.

When 9-year-old Maggie Burke broke her elbow after an unusual landing while vaulting at gymnastics practice, she was concerned her dream may be in jeopardy.

She’s a competitive gymnast with a dream to compete in the 2024 Olympics, and so when she found out her injury would require surgery and a cast, she was feeling anxious. She never needed surgery before and her emergency trip to Seattle Children’s was the Burke family’s first trip to the hospital.

“During surgery prep, the staff found out about Maggie’s passion for gymnastics and her dream,” said Maggie’s mother, Odilia Burke. “We felt greatly supported by kind, caring and knowledgeable people that would soon have our daughter in their hands of expertise. What we weren’t expecting was the surprise we received when Maggie came out of recovery.”

In the operating room, while doctors expertly cared for Maggie’s elbow and set her arm in a cast, a surgical technologist went to work designing something special just for Maggie. It was a small gesture, but just what the doctor ordered. Read full post »