Scientists Search for the Cause of Their Son’s Epilepsy

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.

Child boy in booster seat

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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“So Much to Be Thankful For”: A Year In the Life of the Hatch Family Part Two

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 »

A Son With a Heart Condition, a Daughter With Cancer: A Year in the Life of the Hatch Family Part One

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 »

Amidst Ellia’s Cancer Treatment, the Yees Found a Way to Help Others

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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Eight Things You Should Know About the Stress You’re Experiencing

For many of us, the past year has been uniquely stressful. Have you felt especially exhausted, struggled to focus or been more irritable than usual? Maybe you’ve found yourself wondering why you can’t cope with the stress better.

“There are very real, biological reasons why we’re finding it harder than usual to perform,” said Dr. Shannon Simmons, a psychiatrist at Seattle Children’s and medical director of the Psychiatry and Behavioral Medicine Unit. “Under today’s stressors, it’s common to feel fatigued, have a shorter attention span, have a harder time planning things or be more easily irritated and frustrated.”

On The Pulse asked Simmons and Dr. Mendy Minjarez, a psychologist and executive director of Seattle Children’s Autism Center, what parents, caregivers and other adults should know about the stress they may be experiencing and how they can best cope with it.

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How Seattle Children’s Turned One Family’s Devastation Into Hope

When Cassie Fannin was 19-weeks pregnant with her first baby, she couldn’t wait for the ultrasound that would reveal her child’s gender. During the appointment, she and her husband, Michael, were delighted as they watched their beautiful baby wiggling around on the ultrasound screen.

Fannin asked the technician, “Is it a boy or girl?”

But the technician’s previously cheerful expression now suggested something was wrong. “I’ll need to check with the doctor,” the technician said while hurrying out of the room.

Moments later, a doctor gave Fannin and her husband the devastating news that changed their lives.

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When Your Child’s Life Is in Someone Else’s Hands: The Williamses Put Their Trust in Seattle Children’s Surgical Team

Kelli Williams gives her son, Isaac, who has been in remission for two years after undergoing treatment for stage 4 high-risk neuroblastoma, a piggyback ride in the rain.

Kelli Williams holds her son, Isaac, who has been in remission for two years after undergoing treatment for stage 4 high-risk neuroblastoma.

On July 19, 2017, Kelli and Dennis Williams sat in a pre-op room at Seattle Children’s with their 22-month-old son, Isaac. Kelli hugged her little boy close. He was dressed in a yellow hospital gown, happily playing with the iPad Child Life had loaned him. Kelli and Dennis did their best to appear calm in front of their son, but inside they were terrified.

Isaac had stage 4 high-risk neuroblastoma. He’d already been through four months of chemotherapy and now Dr. John Waldhausen, a surgeon specializing in neuroblastoma cases, was going to remove a tumor the size of a navel orange from his abdomen.

“I had been so focused on managing Isaac’s treatment plan that it didn’t hit me until that morning that my son was about to be lying on an operating table,” remembered Kelli. “I just held him and tried not to cry.”

The day before Isaac’s surgery, the Williamses invited their family members and their church pastor into their home.

“We all circled around Isaac,” said Kelli. “Our pastor prayed over him, he prayed for Dr. Waldhausen, that his hands and his team would get out exactly what needed to come out, and nothing more.”

As they waited in the pre-op room, Kelli and Dennis realized it would be the last time they would see Isaac’s smooth, flawless belly. After surgery, he would have a large scar, stretching from hip to hip and up to his chest, a permanent reminder of his illness.

“I lifted up his shirt and tickled his stomach before he went in, knowing it would never look the same,” remembered Dennis. “It made me pretty sad.”

When a nurse came to get Isaac, Kelli reluctantly handed over her child.

“We’re going to take good care of him,” the nurse kindly reassured her.

Isaac happily waved goodbye to his mom and dad, and they kept up their smiles until he was out of sight. Then Kelli broke down, letting out all the tears she’d been holding back. Read full post »

Option To Freeze Ovarian Tissue Gives Young Cancer Patients Hope for Future Fertility

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 »

Malachi Stohr Is “Absolutely Amazing”

On May 7, 2018, Whitney Stohr slumped to the ground in the corner of her son’s room in Seattle Children’s Pediatric Intensive Care Unit.

Her son Malachi, who was born with a severe form of spina bifida, had undergone a tracheostomy days before. When he woke up after the procedure, his pain was so intense his body went into shock.

That night, Stohr remembers hearing beeps and alarms blaring in their room. Malachi wasn’t getting enough oxygen and his heart rate was dropping. Providers rushed in to perform CPR.

“I just crumbled to the floor,” Stohr remembers. “I was scared he wasn’t going to make it.”

That’s when a provider from the Medically Complex Care team knelt beside Stohr.

“She looked me in the eye and said, ‘It’s okay Whitney. We got him. He’s stable. He’s going to be okay.’ She told me that night that I needed to be strong for Malachi, and I haven’t stopped yet.”

The Stohrs have come a long way since then, and while Stohr has feared for her son’s life countless times, Seattle Children’s workforce members have been like a second family during the most challenging moments. Read full post »

Six Years Later: Immunotherapy’s Tiniest Trial Participant Is Living With “So Much Joy”

Greta Oberhofer, now 7 years old, was the first patient under age 2 included in Seattle Children’s cancer immunotherapy clinical trials. Her parents once considered hospice care for their 13-month-old daughter. Now, Greta has been in remission for six years.

In the fall of 2013, Maggie and Andy Oberhofer watched their tiny, 8-month old daughter, Greta, fight for her life in the Pediatric Intensive Care Unit (PICU) at Doernbecher Children’s Hospital in Portland, Oregon.

Greta had just been through a bone marrow transplant to treat her highly aggressive leukemia. Shortly after, she took a turn for the worse and spent a perilous month in the PICU.

Greta eventually recovered from the transplant and was able to go home, but the family’s reprieve only lasted three months. In March 2014, Greta’s cancer relapsed. Her chance of survival was now 10% or less.

Her parents couldn’t imagine dragging Greta through another bone marrow transplant, so they began to consider end-of-life care for their 13-month-old daughter.

“It was gut-wrenching, knowing her odds were so low,” Maggie said. “We were preparing ourselves to say goodbye to her.”

That’s when they learned about a new option — a cancer immunotherapy trial at Seattle Children’s. Read full post »