Patient Stories

Before she was diagnosed with high-risk acute lymphoblastic lymphoma (ALL), Kinsey was an active 15-year-old who enjoyed competitive horseback riding, spending time with her family and friends, and dreaming about what her future might look like.

Less than two months into her cancer treatment at Seattle Children’s, however, Kinsey became a shell of herself. While Kinsey’s cancer was advanced, it was treatable.

Her care team in Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program recommended more than two years of chemotherapy treatment in hopes she would go into full remission.

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As a second-year grad student working toward a doctorate degree in the field of health sciences, Emma is as busy as ever.

But for this 23-year-old, originally of Snohomish, WA, facing extraordinary challenges with determination and resilience is a skill she mastered early on.

In 2017, after experiencing extreme bouts of itchiness from head to toe, Emma went to see a dermatologist to get checked out, thinking she might be developing some form of eczema.

During the appointment, the doctor recommended a chest X-ray to potentially check for anything more serious. Unfortunately, the results were everything they hoped it wouldn’t be.

“I had tumors on my heart, lungs and under my clavicles – basically I had them all throughout my chest region,” Emma explained. “I was diagnosed with Stage II Hodgkin’s Lymphoma, and it was like everything in the world around me slowed down. My body gave out and I just fell into my brother’s arms. At 17, my world completely changed.”

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Each year, Seattle Children’s Craniofacial Center treats hundreds of children with craniosynostosis, a condition most families have never heard of, yet can affect approximately 1 in every 2,500 babies in the United States.

That was the case for Kali Dempsey’s family, of Camano Island, WA, in early 2017.

“We were sent to Seattle Children’s when my son Ronan was about a month old and they diagnosed him there,” explained Dempsey. “It was all brand new. You hear about all kinds of things, but I had never come across craniosynostosis before.”

At birth, the seams between the bone plates in a baby’s skull are not fused together, allowing a child’s head to move through the birth canal and permitting the skull to grow bigger over time. Craniosynostosis is when one or more of these seams closes too early.

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Seattle Children’s providers are leaders in brain tumor care and research, offering some of the most advanced treatments, neurosurgeries and clinical trials of any children’s hospital.

Its Brain Tumor Program is the largest in the Northwest and one of the largest in the world.

In this edition of On the Pulse, one Seattle Children’s patient shares their personal experience traveling across the world for medical care, navigating language and education barriers, and finding strength in transition.

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As a part of the festivities leading up to the MLB All-Star game, hosted in Seattle on July 11, two Seattle Children’s patients, Isaac Williams and Tiago Viernes, got once-in-a-lifetime experiences thanks to MLB and MLB All-Star partners Dairy Queen (DQ) and Children’s Miracle Network Hospitals (CMN).

Each year, MLB invites a guest that has demonstrated incredible courage in overcoming a challenge to announce an MLB Draft pick.

This year, the Seattle Mariners recommended they select Tiago to read out the name of the first-round pick for the Seattle Mariners, on stage in front of a live audience, and nationally televised.

Additionally, MLB All-Star Game sponsor Dairy Queen hosted the DQ All-Star Experience for Seattle Children’s patient, Isaac Williams, in partnership with Children’s Miracle Network Hospitals. In addition to attending the All Star-Game, Isaac and his family got to experience on-field batting practice, meet and greets with MLB players and more before the game. 

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Luna, a Seattle Children’s patient smiles while hearing her favorite song ‘Let it Go’

Seattle Children’s patients, families and staff were surprised by a pop-up performance from students in Yale University’s a cappella group, Mixed Company.

The undergraduate students traveled over 2,000 miles for a series of performances in the Seattle area and made a stop at Seattle Children’s with the hope of bringing joy to those staying and working in the hospital.

A cappella is a style of music that does not use instruments, and instead uses a range of vocal skills to harmonize and perform songs in a variety of genres including pop, rock, folk, jazz and R&B.

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At just 19 years old, Faye, an avid swimmer and college freshman at Northeastern University, found her life plans on hold when she began experiencing fevers and flu-like symptoms.

When her temperature reached 104 degrees, Faye called an Uber and headed to the nearest emergency department.

While at Boston Medical Center, providers discovered Faye had an abnormally low white blood cell count and kept her overnight.

“The minute they walked in, I knew something was deeply wrong,” recalled Faye.

The doctors explained to Faye and her mom, Molly, that her blood was filled with abnormal, immature white blood cells called blasts; they believed she had leukemia.

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After a family trip to Finland last summer, Jasmine’s family became increasingly concerned about some unusual symptoms she was experiencing.

What started as occasional numbness in her lip or left side of her face last spring had progressed to twitching, which the family later learned were increasingly strong seizures.

Her family had been proactive in seeking help for Jasmine, who is now 13 years old. In Finland, they took her to a specialist, had lab tests performed and tried to adjust her diet and vitamin intake. They also took her to a chiropractor when she returned to their home in Alaska, but the symptoms did not let up.

Then, in September 2022, Jasmine’s father, Erik, found her having the most intense and longest seizure he had ever seen.

“Up to this point, she had never lost any of her awareness of what was going on,” Erik said. “That time, her eyes were open but it was like nobody’s home.”

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DJ received multidisciplinary care over several years at Seattle Children’s. He proudly displays his 4th grade inclusiveness award.

9-year-old DeAngelo “DJ” has his dreams for the future all planned out.

“DJ tells everyone that he wants to become a pediatric surgeon or a pediatric gastroenterologist one day,” explained Angela McCulloch.

“He says that he plans to go to school at the University of Washington and work at Seattle Children’s to help kids like they helped him.”

Angela is DJ’s mom, but also his biggest advocate.

DJ was born prematurely in Tacoma, Wash., at 31 weeks with a rare condition called esophageal atresia (EA), in which the esophagus does not form properly before birth, and tracheoesophageal fistula (TEF), an abnormal connection between the windpipe and esophagus.

A baby with EA cannot feed by mouth because there is no way for food and liquid to travel from their mouth to their stomach.

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Emerson, a Seattle Children’s patient, works on her cosmic creation

Space, art and healing is the mission behind one project that is uniting a planetary community of children through the awe and wonder of space exploration and the healing power of art.

As part of a unique space-themed art project between Creative Art Therapies and the Space for Art Foundation, co-founded by NASA astronaut Nicole Stott, Seattle Children’s patients are designing an art spacesuit that may one day have the opportunity to fly to space.

Patients were also invited to create colorful postcards that will be flown by ‘Club for the Future’ on a Blue Origin rocket, and once back on Earth, will be stamped with the phrase “Flown in Space” for the kids as a memorable keepsake.

The special project aims to bring joy and inspiration to children across the world.

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