On the Pulse

Rachel Robinson and her family were on a family camping trip when she started to notice something was amiss with her son, Eli. He appeared pale, a hint of green to his complexion, and he was covered in bruises. His identical twin seemed fine, which added to Robinson’s concern.

She called their pediatrician, and they were advised to go to Seattle Children’s as soon as possible. After a blood test, doctors discovered something unimaginable. Eli had cancer.

“It’s something you think is never going to happen to you,” Robinson said. “You wonder if you did something wrong. It was surreal.” Read full post »

This year has been filled with unprecedented challenges – physically, mentally, financially – and families are looking forward to putting 2020 behind them. As we collectively usher in a new year, it’s an opportune time to think about small changes we can make to better children’s health in 2021.

Dr. Pooja Tandon, a researcher in the Center for Child Health, Behavior and Development, says this year has caused all kinds of disruptions to children’s lives, unlike anything we’ve seen before. Routines have been shattered, physical activity has decreased, sleep has been affected and the hardships of the year like uncertainty and isolation have impacted children’s mental health.

“Many things are hard right now,” Tandon said. “But for the things we have control over, we can make little changes that can promote health.”

Below, three experts break down three key areas to help support better health in 2021 – physical activity, sleep and nutrition. Read full post »

When it comes to rashes, Seattle Children’s dermatologist Dr. Markus Boos is like a detective. When he meets with patients and families who are concerned about a rash, Boos first listens to their story, looks at their skin for clues and then works with them to determine the cause.

Dr. Markus Boos, Seattle Children’s dermatologist, is grateful to be entrusted by parents to care for their children, and to have the opportunity to do something that he loves every day.

“When I meet with families, there are two important things I always want to emphasize in order to help allay any anxiety they may have,” Boos said. “The first is that we see rashes all the time – literally every day. Their child often has a condition that many other children do as well. Secondly, I reaffirm that I’m glad they came to see me, no matter how mild or severe their skin condition is. I’m a parent and I get it. It’s distressing when something is wrong with your child, and I’m here to help.”

Most of the rashes Boos sees are manageable with topical medications or observation and there is usually no cause for concern, but there are some cases when parents should seek treatment more urgently.

“What should make you worry about a rash is when there are symptoms that involves systems outside the skin, like high fever, vomiting or lethargy,” Boos said. “Those things definitely make me more concerned. For the most part, the majority of common skin rashes won’t have those.” Read full post »

Abby Spaulding, 15, was only 2 years old when she was diagnosed with celiac disease.

As a baby, she had a very sensitive stomach and would throw up frequently.

Abby’s mother brought her to the doctor concerned it was something more than just a simple upset stomach. Her intuition was right. Abby was diagnosed with celiac disease.

Celiac disease is an autoimmune disorder that causes damage in the small intestine. People with celiac disease respond differently to gluten, a protein found in wheat, rye and barley.

“It didn’t really come as a big shock to my mom,” Abby said. “My uncle had celiac disease, so we knew it ran in the family.”

Back in San Diego, where Abby spent her early childhood, she would go to support groups with her mother to help navigate a new lifestyle that required Abby to eat gluten-free foods only.

“Since I was so young when I was diagnosed, it was a very confusing situation for me,” Abby said. “When we’d go to the store and my mom wouldn’t allow me to pick certain foods, I didn’t understand what was going on. Joining the support groups really helped me better understand what celiac disease was and how I could cope with it.” Read full post »

Photo Credit: Courtesy of the Miami Dolphins

During the month of December, NFL players sport a different look on their feet with custom designed cleats aimed to represent a cause that they feel most passionate about.

It was only natural for Myles Gaskin, former University of Washington (UW) Huskies football player, now running back with the Miami Dolphins, to choose a cause that hits close to home in more ways than one.

“Growing up in Seattle, I always knew about Seattle Children’s, so when I was playing for UW, teammates and I decided to visit the hospital a few different times to meet some the kids,” said Gaskin. “The whole experience really opened my eyes to see how much you can impact someone by just giving them your time.”

With Seattle Children’s in mind for his cause, Gaskin wanted to zero in on another issue that deeply spoke to him.

Read full post »

This year has been especially difficult for patients and families at Seattle Children’s. Spending time in the hospital is typically not a fun experience, and so for families who have to be inpatient during the holidays, the season may not feel as merry. To help spread joy and brighten up the holidays for children in the hospital, the Child Life team at Seattle Children’s found a new way for Santa to zoom into the hospital this year: they arranged virtual visits, because even during a pandemic, Santa wanted kids in the hospital to know he was thinking about them.

For Melissa Strilecki, 2020 has been more than a difficult year.

“2020 has been the worst year of our lives,” she said.

In May 2020, 3-year-old Hazel came down with what their family thought was a virus. At first, her symptoms didn’t seem insidious. She had a fever and was throwing up. A week later she started complaining of leg pain.

“She was in terrible pain,” Strilecki said. “We couldn’t even pick her up without her crying out.”

They called their pediatrician, and they were advised to take her to Seattle Children’s Emergency Department. At first, they thought her symptoms may have been caused by a bone infection, but after further testing, they received an unimaginable diagnosis: malignant cancer.

“You are told cancer is rare,” Strilecki said. “But it didn’t feel very rare.”

They were devastated. Read full post »

Faye Prekeges’s senior photo, taken one year before her cancer diagnosis. Faye was the first patient at Seattle Children’s to have her ovary removed and frozen to try to preserve her fertility while undergoing treatment for high-risk leukemia.

At 19, Faye Prekeges was not planning for parenthood. She was a freshman at Northeastern University in Boston, Massachusetts. She spent her days thinking about majoring in French and dreaming of working with the United Nations Refugee Agency, not about whether she wanted to be a mother one day.

But an unexpected diagnosis changed all that.

Six weeks into her second semester, Faye began having high fevers and visited the university’s health clinic. Providers suggested she had the flu and would feel better in about a week, but her symptoms quickly grew worse. A few days later, she woke up with a fever of 104 degrees.

Faye thought to herself, “I need to see a doctor now.” She took an Uber to Boston Medical Center’s Emergency Department and tested positive for mononucleosis. They kept her overnight because her white blood cell count was abnormally low.

“Luckily, the woman looking at my slides noticed what she thought were blast cells (primitive, undifferentiated blood cells, often found in the blood of people with acute leukemia) and sent them to the pathologist, who confirmed they were,” Faye said.

She was transferred to Boston Children’s Hospital, where she was diagnosed with high-risk B-cell acute lymphoblastic leukemia.

“I believe everything happens for a reason,” Faye said. “I feel like, this happened to me and my family because we are strong enough to get through it.” Read full post »

Giorgia Graham, 11, is among the 20 to 30% of children with epilepsy whose seizures do not respond to medication. Surgery is an option if doctors can pinpoint the source of the seizures and remove the abnormal tissue without affecting the child’s ability to process information, see, speak or move.

When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.

But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.

“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »

Tuesdays are 2-year-old Malachi Stohr’s favorite days. Every Tuesday, rain or shine, Whitney Stohr and Malachi bundle up and wave to the garbage men as they empty the garbage bins at the end of the driveway. Malachi and Whitney then take a walk around the neighborhood, following the big green truck along its route. Malachi loves garbage day, and so when Seattle Children’s found out, they got in touch with Waste Management to plan a special surprise.

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“So much of Malachi’s life is scheduled around his medical needs,” Stohr said. “He spends many days in the hospital, in clinics, in therapy. We’re eternally grateful to have that level of care available to us. We are thankful to have such ready access to the services at Seattle Children’s and in our local community. But, at the end of the day, Malachi is just a typical toddler. He loves big trucks and watching the trash bins go up and down, up and down.” Read full post »

Logan (left) and Connor Brown at Turnagain Arm in Alaska. The brothers have both received kidney and liver transplants at Seattle Children’s.

“I hate to tell you this, but your son needs a kidney transplant.”

Those words left Rob and Patty Brown dumbstruck.

It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.

“We raced him to the emergency room thinking it was just something silly,” Rob remembers.

It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.

Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.

Read full post »