Patient Stories

All Articles in the Category ‘Patient Stories’

Baby Survives Incredible Odds After Vacation Takes Terrifying Turn

18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.

Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.

“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”

Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »

Sounders FC Star Jordan Morris Inspires Kids With Type 1 Diabetes

Morris-diabetes_lead

Jordan Morris with Kylie (left) and Cameron Hendry (right). Cameron, like Morris, has type 1 diabetes.

Kids with type 1 diabetes are used to getting a lot of questions, from “What does that tube on your pump go to?” to “What happens when you don’t feel good?” The natural curiosity of their peers often serves as a reminder of the condition they must constantly stay on top of.

Recently, the tables were turned when Sounders FC star Jordan Morris joined a roomful of type 1 diabetes patients at Seattle Children’s Bellevue Clinic and Surgery Center for a special Q&A.

Morris, who has risen through the ranks of youth, collegiate and professional soccer, can relate. He also has type 1 diabetes. So, in a rare afternoon off from fielding crosses on the soccer pitch, Morris volunteered to field questions from patients and their families about living and playing with the disease.

“When I was younger, I looked up to other professional athletes with diabetes who were doing what I wanted to do, and always thought ‘if they can do it, why can’t I?’” said Morris. “I love talking to the kids. I hope I can serve as that same inspiration to them.” Read full post »

In Quest to Diagnose Puzzling Stomach Ache, Family Turns to Clinical Trial

Isabella Wallis with her older brother and two older sisters.

As the youngest in her family, Isabella Wallis is always following in the footsteps of her older siblings. While it has its perks in helping her learn the ropes, getting to be the first in her family at anything is few and far between.

That was until the 9-year-old from Olympia, Washington, became the first patient to enroll in a first-of-its-kind clinical trial at Seattle Children’s.

“It’s exciting to be able to help other people and give them more information about why they are sick,” said Isabella, who enrolled in the Precision Diagnostics in Inflammatory Bowel Disease, Cellular Therapy and Transplantation (PREDICT) trial after experiencing persistent inflammatory bowel disease (IBD) symptoms for more than six months.

When she didn’t feel well, Isabella, who had always been healthy and loved playing outside, would retreat to her bedroom, finding some comfort in watching reruns of her favorite show, The Simpsons, while lying down. But her upset stomach never went away.

Unclear what was causing Isabella’s illness or what treatment options may exist, her parents turned to Seattle Children’s at the advice of their pediatrician. Read full post »

Promising Drug Combination Silences the Rage of Graft-Versus-Host Disease

London Bowater fought for her life for nearly 180 days in the hospital when she developed severe GVHD after a cord blood transplant.

To pass the nearly 180 days she was a patient in Seattle Children’s Cancer Unit with graft-versus-host disease (GVHD), London Bowater took orders from her doctors, nurses and other patients and families for friendship bracelets that she would braid from her hospital bed.

While her handicraft would help fill the time between treatments, it did little to help ease the severe GVHD she developed after a cord blood transplant for acute lymphoblastic leukemia.

“Her hair was falling out and her intestines were hemorrhaging blood, yet somehow my little ray of sunshine still managed to stay positive and touch all the amazing doctors and nurses with her kindness,” said Nicholas Bowater of his then 8-year-old daughter. “At one point the hemorrhaging was so bad, I melted.  I went into the empty room next door and lost it. I knew we would need a miracle.” Read full post »

A Month of Hope for the Gwilliam Family

Atticus Gwilliam was diagnosed with a brain tumor in August 2016.

September is Childhood Cancer Awareness Month. But What does ‘awareness’ really mean?

To become aware? To obtain new knowledge? To gain a new perspective? To become informed? To become concerned or even empathetic to an unfamiliar situation?

The concept of awareness can take on many faces, and its perception can change depending on the person you talk to. To the mother who spends her days at a children’s hospital, it’s a sense of defeat and desperation about the path that life has taken her. To the father who lost his son, a harrowing and solemn reminder of a fierce battle once fought. To the general social media patron, it may be a month of raw images that they don’t fully understand.

This was the crossroad we found ourselves in as we entered the doors at Seattle Children’s Hospital 12 long months ago. The world of childhood cancer was not something that was on my radar as a mother of three (with one on the way), let alone with regards to one of my own children. Read full post »

Wyatt’s Creativity Cruises Onto Kasey Kahne’s No. 5 Race Car

The design 9-year-old cancer patient Wyatt Zender created for Kasey Kahne’s No. 5 race car.

In just three days, 9-year-old Wyatt Zender and his family will see his artwork come to life on the Chicagoland Speedway.

Wyatt, a cancer patient at Seattle Children’s, was the lucky winner of a coloring contest presented by Great Clips to design the paint scheme for Kasey Kahne’s No. 5 Great Clips Strong Against Cancer Chevrolet SS, which Kahne will drive at the first playoff race of the NASCAR Cup Series, The Tales of the Turtles 400, on Sept. 17.

“Our family is so excited to see Wyatt’s colorful design speed down the racetrack,” said Wyatt’s mom, Heather Zender. “This has been a great opportunity to give Wyatt the chance to do something fun and share his story as well.”

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3-D Simulation Before Difficult Surgery Helps Erin Breathe on Her Own

Dr. Kaalan Johnson leads his team through a surgical simulation

Erin McCloskey, 11, has been a regular at Seattle Children’s her entire life. First diagnosed with a rare heart defect, a genetic specialist at Seattle Children’s later discovered she had fibrodysplasia ossificans progressiva (FOP). FOP is a complex condition that turns tissue, ligaments and tendons into bone that is outside the typical skeletal structure. Eventually, a person’s joints lose their mobility and it can cause breathing, movement and eating difficulties.

In August, Erin’s mother, Suzanne, sat with her in her hospital room as she did almost every minute of every day since April. Erin’s bed was stacked with stuffed animals and cards sent from members of the online FOP community who showered her and her family with support.

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Teen’s Determination After Brain Tumor Surgery Takes Her to Harvard

Liesel Von Imhof, 18, doing one of her favorite activities – cross-country skiing.

Liesel Von Imhof, 18, came to Seattle Children’s from her home in Anchorage after learning the reason for her migraines: a ping-pong ball–sized tumor in the middle of her brain. In honor of Childhood Cancer Awareness Month, here she shares her journey of diligently working to achieve her goals despite recovering from brain tumor surgery during her senior year of high school.

How long does it take to recover from brain surgery? What does “recovery” really mean? Would I be the same as before, or to what degree would I be different? These were the many questions swirling around in my mind on July 12, 2016, when I sat next to my pale-faced mother in the hospital as we learned I had a brain tumor. I was diagnosed with a Pilocytic Astrocytoma tumor in the third ventricle of my brain.

With this diagnosis, I was soon on a journey of self-discovery to learn just how much grit and determination I really had. Whether I liked it or not, I was going to have to go through two brain surgeries. My life depended on it.

I gripped the thin hospital bed and prepared myself for the ride. Read full post »

Seattle Children’s Longest-Working Therapy Dog Bids ‘Furwell’ For Retirement

In honor of National Dog Day, On the Pulse is recognizing a special four-legged volunteer who has provided comfort to patients at Seattle Children’s every week for more than 11 years.

If Abe had the ability to talk, he would likely share powerful stories about the thousands of kids he has met throughout his 11-year career as a registered therapy dog.

The road to becoming a therapy dog isn’t easy for most loyal companions, but for Abe, it was his calling.

“I always said he was born to be a therapy dog,” said Judith Bonifaci, Abe’s owner and trusty handler. “From the moment I met him, I could tell he was an old soul who had a special purpose in life.”

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Meet a 6 Year-Old Philanthropist

Ryker Ringstad on his first day of preschool

Someone forgot to tell Ryker Ringstad that he was a patient at Seattle Children’s, not a fundraiser.

A happy, gregarious kiddo with blonde hair and a playful spirit, Ryker bounces around his room at the hospital. He climbs on his dad, Paul, and mother, Sarah. Watching him move, you’d never guess that he just underwent his 14th procedure for the lymphatic anomalies in his tongue and neck. Wearing a Seahawks t-shirt, I ask him who his favorite player is and without missing a beat, he answers “Russell Wilson!”

Ryker hasn’t had an easy path, but as his mother says, “he is one strong, resilient little man.”

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