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 »

“You Don’t Have to Know Yourself Right Away”: Iris Shares Her Journey of Self Discovery As a Transgender Woman

In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.

In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.

“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”

Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”

For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.

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Don’t Have an Hour for Yoga? Realistic Ways for Parents to Manage Stress

Parents are facing some high expectations right now. The COVID-19 pandemic has brought a wave of uncertainty to our homes, impacting finances, food security, health and safety. And while that would have been plenty to worry about, many parents are also required to work from home while managing their child’s education at the kitchen table.

It’s a lot.

“We know there are direct correlations between parental stress and a parent’s ability to give their child the one-on-one positive interaction that kids need to thrive,” said Dr. Megan Frye, a child psychologist at Seattle Children’s Odessa Brown Children’s Clinic. “We also know that the brain is super flexible. When we are going through stressful experiences, we as parents can learn and implement concrete skills and practices that will help us manage our own stress, connect better with our children and model what it looks like to be resilient when things are challenging.”

Reducing anxiety can feel impossible if your child care is obsolete and you don’t have time for an hour-long yoga class. On the Pulse has collaborated with Seattle Children’s experts to identify practical tips to help parents manage their stress during the COVID-19 pandemic and long after.

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The Teasley Sisters Embrace Living Without Limits

The Teasley sisters visit Dr. Kathy Sie, who helped them become the successful young women they are today. From left to right: Erika, Alicia, Dr. Sie and Janna.

When Ken and Kathi Teasley learned their two oldest daughters were deaf, they feared it would hold them back. Instead, Seattle Children’s providers taught the girls to live without limits and use their experience as people who are deaf and hard of hearing to help others.

Now in their 20s, all three of the Teasley sisters volunteer or work at Seattle Children’s. Read full post »

Fighting to Give Every Child With Cancer a Chance to Become a Parent

Taylor Tran (left) and her mother Mai Nguyen. Taylor underwent cancer treatment when she was 2 years old, causing her to go into early menopause when she was just 16.

“You pay the price for having cancer over and over again.”

Mai Nguyen’s words are loaded with sorrow as she speaks about her 17-year-old daughter, Taylor Tran, who is dealing with fertility concerns more than a decade after she survived late-stage cancer.

It’s easy to understand the exasperation Nguyen feels: Her daughter was diagnosed with stage 3 single-cell sarcoma of the kidney when she was 2 years old and was treated with intense chemotherapy and radiation. Now, the treatments that saved her life have put her into early menopause.

“It’s been traumatic,” Nguyen said. “We’ve tried so hard to allow Taylor to have a normal childhood and this feels like one more thing cancer has taken from her.”

Stories like Taylor’s inspired Seattle Children’s urologist Dr. Margarett Shnorhavorian to tackle a challenging area of research that was largely uncharted more than a decade ago. Since then, she’s helped change perspectives and protocols for fertility preservation in childhood cancer survivors. Read full post »

Juvenile Arthritis Can’t Stop Izzy From Dashing Through the Snow

Seattle Children’s nurse practitioner Amber Bock (right), has been vigilant in managing her daughter Izzy’s care since she was diagnosed with arthritis at age 2.

In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.

Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.

“How long had she been in pain?”

Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.

It is often challenging to diagnose juvenile arthritis in young children.

“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”

This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury. Read full post »