Patient Stories

All Articles in the Category ‘Patient Stories’

Seahawks Visit Seattle Children’s, Spread Cheer to 12s in the Hospital

Nico, 15, got a surprise visit from the Seahawks and Sea Gals.

Today, rounds of a different kind were made. Instead of doctors in white coats, the Seattle Seahawks and members of the Sea Gals, dressed in blue and green, made their way through the hospital to visit patients and families at Seattle Children’s. They couldn’t have picked a better day to bring cheer to 12s in the hospital: Dec. 12 (12/12).

“Today brought us a lot of joy, even if it was just for a minute,” said Alberto Tobias, father of Nico Tobias, a patient at Seattle Children’s. “It was really fun. We were so happy to see the players walk into our room.”

The Captain’s Blitz is an annual tradition that brightens the day for Seahawks fans big and small at Seattle Children’s. Read full post »

With a Genetic Answer, Parents Find Comfort in Son’s Rare Epilepsy

Genetic testing helped diagnose Nolan Wood, 3, with KCNQ3 epilepsy.

Even though Nolan Wood hadn’t experienced a seizure in more than two years, his parents still had questions about their son’s future.

“We wondered if there were others out there that have what Nolan has,” said Emily Wood, Nolan’s mom. “If so, what does their life look like?”

The Woods’ search for answers began when Nolan, 3, was diagnosed with infantile spasms and regression of his motor skills when he was 6 months old. Before receiving seizure medications, Nolan had hundreds of daily subtle, reflex-like seizures. Due to the regression of his motor skills, he had stopped rolling over, smiling and crying. A condition known as cortical visual impairment had also rendered him legally blind. Read full post »

Pinpointing Pancreatitis: How Family History Played a Role in Amber’s Painful Illness

It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

Read full post »

Surgery Frees Lillee from Seizures Medication Couldn’t Stop

Lillee Haynes, 4, surrounded by her three older brothers.

When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.

“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”

Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.

“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.” Read full post »

Newborn Screening for Rare Disorders Becomes Researcher’s Lifelong Mission

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

For the first 15 years of his life, Ryan Wyckoff appeared to be a perfectly healthy, active teenager, living with his family in Wasilla, Alaska.

But during New Year’s weekend in 2009, Ryan began to feel seriously ill. He was lethargic and had a high fever that could not be controlled by acetaminophen.

Ryan was so sick he could barely make the trip to his family doctor. The doctor thought Ryan looked jaundiced and referred him to their local hospital, but providers there found nothing wrong so they sent him home.

Ryan’s symptoms worsened. He gained 15 pounds in just a couple days as fluid built up in his abdomen. Ryan’s mom, Lisa Wyckoff, remembered how her tall, slender son looked like he was pregnant.

An MRI revealed Ryan had cirrhosis — advanced scarring in his liver. His condition was life-threatening, so he was flown to Seattle Children’s by Medivac.

“It’s terrifying to have something seriously wrong with your son that no one can figure out,” said Lisa. “We felt so helpless.” Read full post »

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 »