On the Pulse

“Before COVID-19 restrictions, patients facing surgery were given the opportunity to tour the hospital with their families ahead of time to help ease the nerves and to become comfortable with the process. Since that option became unavailable, Dr.  Henry Ou took it upon himself to create a virtual tour that a kid can walk through on Minecraft! In their world! It is very impressive, and you can tell he has spent a lot of time and effort perfecting it for the kiddos.” — Mariette Broncheau, partner employee — Research

As a self-described “kid at heart,” Dr. Henry Ou said he’s got a good sense for how patients may be feeling, including what they’re interested in and which situations may be scary for them. When the pandemic struck and hospital visitation had to be limited, Ou used his kid-like perspective to accomplish a task very different than his usual surgical case — creating a Minecraft version of the hospital.

Minecraft is a video game that allows players to virtually explore a 3D world with different terrain and environments to accomplish various tasks or missions — a virtual LEGO world of sorts. Over the past 18 months, Dr. Ou has taken thousands of videos and photographs around the hospital and spent hundreds of hours during his personal time designing a Minecraft version of the hospital building.

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Seattle Children’s Education Department provides free services for students who will be in the hospital for at least one week. The teachers are certified by the state of Washington in both general and special education. They’re experts at supporting kids and their families when children and teens are suddenly out of school and as they transition back into school after an extended absence. Scott Hampton, manager of K-12 Education Services and father of three, sat down with On the Pulse to share advice to support families in the community as they settle back into in-person learning in this new school year. Read full post »

The phone call came at 2 a.m. It was a neonatologist calling about Kimberly Aldinger and Scott Houghtaling’s son, Grayson. Kimberly had given birth to premature twins a month earlier and both babies were in the neonatal intensive care unit (NICU) at Swedish Hospital. The new parents had returned home to get a much-needed night of sleep when the doctor left a message on their voicemail.

Kimberly Aldinger and Scott Houghtaling’s son, Grayson (pictured here), began having seizures when he was just 24 days old. Now, his parents are using their scientific expertise to try to find the cause of his epilepsy.

“I’m really worried about Grayson,” the doctor said. “He’s having a massive seizure. You need to come down here.”

Scott immediately feared the worst. “I thought, the only reason they’d call in the middle of the night was if they were preparing for the worst outcome — Grayson not surviving.”

Thankfully, the medical team was able to stop Grayson’s seizure that night, but it was just the beginning of Kimberly and Scott’s journey to understand the severity of their son’s brain damage and how it would shape all their lives.

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Whether you’re in the “I need school to start now!” camp or the “Summer just started” camp, the fact is that the new school year is approaching quickly. Every year, back-to-school time is met with emotions ranging from excitement to nervousness or fear, but this year that’s even more true for students and families. Dr. Kendra Read, director of the Mood and Anxiety Program at Seattle Children’s, offers ways to reduce back-to-school worries as you support your child’s return to in-person learning.

“Uncertainty is often hard to tolerate and times of transition in the midst of uncertainty are that much harder,” Read said.

Here is some advice from Read to help navigate these trying times: Read full post »

Two weeks before their 3-month-old son was scheduled for his second open-heart surgery, Kyle and Samantha Hatch were told their daughter likely had neuroblastoma.

Things are looking up for the Hatch family. William (left) celebrated his first birthday in May — a major milestone for children with his heart condition. While Penny still has a few months of neuroblastoma treatment, her hair is growing back and her nasogastric (NG) tube is out. Still, getting to this point has not been easy.

“We were utterly broken,” Samantha said. “But we had to pull it together for our children.”

After Penny’s tumor was discovered on her MRI, she needed a biopsy to definitively diagnose what providers suspected was cancer.

On August 11, 2020, Penny walked into Seattle Children’s hospital for the procedure. It was the last time Samantha and Kyle saw their daughter walk.

After a tumor sample was collected, Penny was discharged. But at home, Samantha said her daughter started screaming in agony. “She couldn’t stand and was in unbearable pain. I thought, ‘This isn’t normal. We’re going back in.’”

Penny was quickly readmitted to Seattle Children’s for pain management. Watching Kyle hold her in the hospital, Samantha noticed Penny was kicking her left leg while her right leg hung limp.

“It was terrifying,” Samantha said. “She couldn’t move it.”

The biopsy caused Penny’s tumor to swell and press against the nerves in her spinal cord, paralyzing her right leg. To make matters worse, the biopsy confirmed Penny did, in fact, have high-risk neuroblastoma. Read full post »

Kyle Hatch holds baby William, who was born with hypoplastic left heart syndrome (left). Three months later, Penny (pictured with her mom, Samantha) was diagnosed with neuroblastoma.

Who are your heroes? Are they exceptionally talented? Do they have superhuman abilities? Are they destined for greatness?

Or, are they ordinary people who face tremendous challenges and persevere out of love?

Kyle and Samantha Hatch undoubtedly fall in the latter category. In the past year, one of their twin sons was born with a life-threatening heart defect. Three months later, their 18-month-old daughter was diagnosed with neuroblastoma. And all of this happened during a global pandemic.

“We often talk about literary heroes, people who face adversity even when they’re unprepared,” Kyle Hatch said. “That’s what makes them brave, and that’s why our kids are some of the bravest people we know.” Read full post »

Sammy Loch began experiencing debilitating headaches in 2009. She was a sophomore in high school at the time. When she went to see her primary care provider, they diagnosed her with migraines and prescribed medication to help dull the pain. When her migraines persisted, her doctor recommended Loch get an MRI to rule out anything more insidious.

Days before the MRI, Loch got dressed in a beautiful purple gown, her curly hair bounding in tight curls just at her shoulders. She had been looking forward to the homecoming dance for weeks. She was all smiles, but the throbbing pain in her head was still there. She powered through the dance, determined to have fun. She was completely unaware her world would soon be turned upside down as she danced in the high school gym surrounded by her friends.

On Tuesday, Oct 27, 2009, Loch went in for an MRI.

“The technician was so bubbly and nice,” Loch said. “She told me about the elaborate costume she was working on because Halloween was only a few days away. I remember everything about her demeanor changed when she came back in the room after my scan. My heart sank. I knew something was seriously wrong.”

That night around 8 p.m., her family got a call. Her mother answered, repeating aloud what the voice on the other end of the line was saying. “There’s a mass. You need to go to Seattle Children’s as soon as possible.”

Everything seemed to stop as those words hung heavy in the air.

“It’s cancer,” Loch said. “I just knew it.”

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From left to right: Jenna, Ellia, Nathan, and Zach.

For the first three years of her life, Ellia was “the kid who never got sick.”

“We never worried about her,” says Jenna Yee, Ellia’s mom. “She was always very spunky and funny and had this incredibly dynamic personality. We knew from the start she was a fighter.”

But when Ellia was 3 years old, she developed a fever and became lethargic. Jenna Yee took her to a walk-in clinic where she was prescribed antibiotics for an ear infection. A few days later, Ellia woke up with a rash on her arms and legs, and red dots on her neck.

Jenna Yee brought Ellia to their pediatrician, who sent them to Seattle Children’s Emergency Department for urgent blood testing. Ellia’s dad, Nathan Yee, left work to meet them there.

Nathan Yee and Jenna Yee both have professional experience in cancer research. Jenna Yee was a toxicologist who worked on cancer clinical trials and Nathan Yee was helping develop immunotherapy treatments for adults with leukemia and lymphoma at Juno Therapeutics.

“Hearing Ellia’s symptoms, my first reaction was utter denial,” Nathan Yee says. “I was sure nothing was seriously wrong. But driving to the Emergency Department, I realized the truth was screaming in my face. Ellia had a classic presentation of pediatric leukemia.”

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An innovative clinical trial led by Dr. Nicholas Vitanza,  a neuro-oncologist at Seattle Children’s, shows promise that delivering cancer-fighting chimeric antigen receptor (CAR) T cells directly to the brain for children and young adults with recurrent or refractory brain and central nervous system (CNS) tumors may be feasible and tolerable.

The results, published today in Nature Medicine, are the initial findings from Seattle Children’s Therapeutics’ BrainChild-01 immunotherapy clinical trial. BrainChild-01 is the first of three such trials seeking to comprehensively target all types of pediatric brain and spinal cord tumors.

Seattle Children’s Therapeutics is a unit in the research division at Seattle Children’s and is taking promising CAR T cell immunotherapies forward to the first clinical trials of their kind for children. As a novel non-profit therapeutic development enterprise, it is devoted to envisioning and testing next-generation cell and gene therapies for pediatric diseases, so children have the medicines they deserve.

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Photo courtesy of Four Oaks Photography.

On January 30, 2019, Nia Mauesby was born. To celebrate her arrival, the setting sun illuminated the Seattle skyline with bright hues of red, orange and yellow. It was one of the most dazzling and memorable sunsets of the year. As quickly as the setting sun dipped over the horizon, the winds began to shift, and the foreboding weather foreshadowed the turbulent journey that lay ahead.

“When my water broke, we had no idea what we were in for,” Reem Mauesby said.

Mauesby and her husband, Timothy, were elated for their daughter’s arrival, but the timing couldn’t have been worse. Stricken with the flu, Mauesby wasn’t able to see her baby girl for 24 hours after giving birth. When Nia was finally was placed on her chest, she felt a heavy sense of relief, but that feeling would soon be stripped away. Read full post »