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 »

The ‘Miracle’ that Saved Abram

Marilee Killpack describes the birth of her fourth son, Abram, as “magical.”

After a typical, full-term pregnancy, Abram was born in Provo, Utah, weighing 9 pounds. He seemed to be healthy and strong, with one exception: He had petechiae all over his body — red dots that appear on the skin when tiny blood vessels break.

Providers suspected the marks were bruises from his quick birth, but blood tests revealed his platelets were extremely low and his immune system was not making enough antibodies to fight infections.

Abram was taken to the neonatal intensive care unit at his local hospital for platelet and immunoglobulin infusions. Still, his blood counts continued to drop. The family was transferred to a nearby children’s hospital where providers determined he had mononucleosis, which they suspected was causing his immune deficiency.

“They said he would be fine in a few months and sent us home,” Killpack remembers.

But Abram was not fine. He developed severe, uncontrollable eczema when he was 3 weeks old.

“His body was shredded,” Killpack said. “We tried everything — lotions, oils, anything we could think of — but nothing worked. He was screaming; he was in so much pain.”

When providers saw Abram’s skin, they immediately sent a sample of his blood for genetic testing. They suspected he might have a rare, life-threatening disorder called Wiskott-Aldrich syndrome (WAS). Read full post »

Annie Faces Her Fears and Conquers Her Anxiety

Julie Munko tried to manage her daughter Annie’s anxiety on her own until she found a therapeutic program at Seattle Children’s that dramatically improved their lives.

Imagine if you had a child who cried themselves to sleep at night because they had no friends; who called themselves “horrible” and drew disparaging images of themselves in their journal; who suffered physical pain when they wore clothes or gave you a hug.

This was once the reality for Julie Munko and her daughter Annie, who suffered from an anxiety disorder. But today, their lives are completely different, thanks to skill-based therapy at Seattle Children’s that pushed Annie outside of her comfort zone.

Crawling out of her skin

Munko first noticed Annie’s anxious behavior in fourth grade. Annie desperately avoided the school library and cried at night if she had to go there the following day. She no longer wanted to sleep over with friends or go to parties.

By fifth grade, it began affecting her school life. Annie became distressed if she unexpectedly had a substitute teacher. She ran out of the classroom if her computer was not working properly. Annie was an excellent student but panicked if her teacher’s instructions were unclear or if she was having trouble with an assignment.

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Milton Wright Finds His Way Back ‘Home’

Milton Wright III has returned to work at the hospital that saved his life.

Milton Wright III has only worked at Seattle Children’s for a couple months, but the hospital has been his second home for much of his life.

Milton’s childhood unfolded within Seattle Children’s walls — making friends, experiencing loss and facing death more times than he can count.

Today, Milton is back at Seattle Children’s — not as a patient, but as an employee and a symbol of hope.

“I want to do something that’s worthy of my life being saved,” Milton said.

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Fighting for Their Lives: Seattle Children’s Immunotherapy Journey

At Seattle Children’s, many children and young adults with cancer are finding hope in T-cell immunotherapy – an experimental treatment that boosts a patient’s immune system and uses it to fight a disease.

Seattle Children’s researchers are leading clinical trials in which a patient’s T cells are reprogrammed to express a chimeric antigen receptor (CAR) on the surface of the cell. The CAR is like a puzzle piece that’s designed to attach perfectly to a specific antigen or marker on the surface of the cancer cell. When they attach, the CAR T cells attack the cancer cells as if they were fighting an infection.

In just five years, Seattle Children’s cancer immunotherapy program has grown tremendously to include trials that target leukemia, brain and spinal cord tumors and solid tumors. Curious how these clinical trials work? Read on to learn more about the immunotherapy clinical trial process at Seattle Children’s.

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