Patient Stories

All Articles in the Category ‘Patient Stories’

Two Years Cancer-Free, Erin Advocates for T-Cell Immunotherapy

At age 2, Erin Cross was diagnosed with acute lymphoblastic leukemia. She achieved remission through her initial cancer treatments, but relapsed in 2016. Out of treatment options, her family found hope in Seattle Children’s PLAT-02 T-cell immunotherapy clinical trial. Erin, now 8, just celebrated her two-year anniversary of being cancer-free. Photo by Jane Mann

Each morning, 8-year-old Erin Cross springs out of bed excited to go to school. A third grader in Chester, England, she loves science and math, and imagines a future as a researcher making “potions” in a lab. She loves cracking jokes, rugby and playing make-believe games with her friends on the playground. For Erin, who spent most of her life in the hospital and away from others her age, she cherishes each day she is able to just be a kid.

“It’s amazing to see Erin back to living a normal life,” said her mother, Sarah Cross. “We’re so thankful that we’re able to enjoy time as a family doing regular things like taking picnics, playing on the beach or going to the zoo. It’s time that we never take for granted.”

Nearly three years ago, Cross faced the devastating reality that she may never see her daughter grow up. At age 2, Erin was diagnosed with acute lymphoblastic leukemia (ALL). She was able to achieve remission through her initial cancer treatments, but in 2016, her family received the shattering news that she had relapsed and was out of treatment options.

That was, until they found hope in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) chimeric antigen receptor (CAR) T-cell immunotherapy clinical trial for children and young adults with relapsed or refractory ALL who are not likely to survive with current treatments. In July 2016, Erin’s family arrived in Seattle for the trial.

“Seattle Children’s threw us a lifeline,” said Cross. “We knew we had to get her there. We moved mountains to save our daughter’s life.”

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Seattle Children’s Brings Cancer Immunotherapy to a Global Stage

Avery Berg, 13, was diagnosed with a rare brain tumor at the age of 10. She endured six weeks of radiation, five brain surgeries, and six months of high-dose chemotherapy. Avery has been cancer-free for more than a year, but her mom Kristie says that cancer immunotherapy offers hope that other children can become cancer-free without having to endure such harsh therapies.

T-cell immunotherapy continues to take center stage as one of the most promising new cancer therapies of our time. What once sounded like a dream – reprogramming a person’s own immune system to fight cancer – is remarkably becoming a reality. What’s more; doctors and researchers in our own backyard are leading the way in developing this therapy for children and young adults around the world.

From covering the opening of the first T-cell immunotherapy trial when I was an anchor at KING 5 TV, to now seeing this therapy being tested in seven open clinical trials at Seattle Children’s and applied to a variety of cancers, I’ve been amazed to watch the enormous strides researchers have made in the field over a few short years.

The results also speak for themselves – 93% of patients with relapsed or refractory acute lymphoblastic leukemia in Seattle Children’s phase 1 PLAT-02 trial achieved complete initial remission. About 50% were still in remission one year after therapy. Some patients, who were otherwise unlikely to survive with traditional therapies, are still in remission nearly five years after receiving the experimental treatment. This is encouraging news, especially since leukemias are the most common childhood cancers.

And on Oct. 12, I will witness yet another major milestone – Seattle Children’s will bring their groundbreaking therapies to a global stage. Read full post »

Toddler’s Heart Rebounds After ‘Frankenstein’ Heart Procedure

Katja, now 3, was the youngest patient at Seattle Children’s to undergo the Ozaki procedure.

Although Katarina Anja, or “Katja,” De Groot was born with a rare heart defect called truncus arteriosus, the active toddler never let her condition stop her from running, playing and going to the park.

However, when she was 2 years old, Katja began sleeping for most of the day and withdrawing from the activities she usually enjoyed. That was when her mother knew something was wrong.

“She wasn’t herself anymore,” said Jennifer De Groot. “My daughter is usually a happy-go-lucky child who loves to live life to the fullest. I didn’t know how much longer we could see her like that. It’s like we had reached the point of no return.”

De Groot’s concerns grew, and she knew she needed to seek help for her daughter. Dr. Maggie Likes, Katja’s cardiologist at Seattle Children’s, noticed a difference in her echocardiogram. It showed her aortic valve was not functioning properly.

“We had hit a tipping point,” Likes said. “Between the concerning changes on her echocardiogram and what her mom was seeing at home, it was time to do something about her aortic valve.”

De Groot knew her daughter wouldn’t be able to lead an active lifestyle with a mechanical valve because it would mean that Katja would have to undergo a lifelong regimen of anti-coagulants, commonly known as blood thinners. She made a bold move and asked the Seattle Children’s Heart Center team if they could perform an innovative surgical technique that would repair her daughter’s aortic valve – an unexpected suggestion that led to a collaborative decision.

At 2 years old, Katja would become the youngest child at Seattle Children’s to undergo the Ozaki procedure.

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Dr. Grey Saves the Day for Teen with Down Syndrome

Savannah Miller, 17, poses with nurse practitioner Lindsey Thomsen, who dressed up as Dr. Grey from the popular television show to make Savannah’s dream of meeting the fictional doctor a reality.

Doctor appointments aren’t usually a fun experience for 17-year-old Savannah Miller who was born with Down syndrome. Usually, trips to the hospital are accompanied with a fair share of reluctance and anxiety. During a recent trip to Seattle Children’s, however, that all changed thanks to Lindsey Thomsen, a pediatric nurse practitioner in the pre-anesthesia clinic at Seattle Children’s, who went above and beyond her usual duties. Thomsen was inspired by one of Savannah’s favorite television shows to turn a trip to the doctor into an unforgettable experience for Savannah and her family.

Savannah has been a patient at Seattle Children’s since she was a baby, undergoing her first open heart surgery at only 3 months old. Hospital stays and check-ups have been a large part of Savannah’s life, which understandably can cause some unease. That was the case when Thomsen first met Savannah a few weeks ago. They were meeting to talk about an upcoming procedure.

“It was a challenge just to get her in the door that day,” said Jill Miller, Savannah’s mother.

Savannah was visibly upset and refused to have her vitals taken. Getting through the appointment was a struggle, but eventually Savannah warmed up to Thomsen.

“Will you be there?” Savannah asked Thomsen, referring to the day of the procedure. Read full post »

Miguel’s Journey to Take Back the Wheel After Cancer Diagnosis

Miguel Navarro, 18, was blindsided by a cancer diagnosis. Today, he’s on the road to recovery.

A single blow to 18-year-old Miguel Navarro’s shoulder turned his world upside down. He was boxing with his friends one afternoon when he felt a snap. He took a hit to his shoulder and immediately knew something was wrong.

“That punch altered my world,” said Miguel.

Miguel went to the emergency room where he found out he fractured his humerus, the long bone in the upper arm. Unfortunately, that wasn’t where his medical journey ended. While undergoing imaging, doctors noticed something amiss, and so Miguel underwent a myriad of tests. At the time, doctors thought what they saw in his imaging results could be a benign tumor.

On Dec. 12, 2017, Miguel was told the tumor wasn’t benign. He had osteosarcoma, an aggressive type of bone cancer. Read full post »

Born Breathless, Baby Finds Hope After Weeks on Life Support

Garrett Smith survived six weeks on life support in Seattle Children’s neonatal intensive care unit (NICU). Photo courtesy of Arlene Chambers Photography.

From the moment he made his entrance into the world, Garrett Smith struggled to breathe.

“We longed for that first cry as he was placed upon his momma’s chest,” said Kevin Smith, Garrett’s dad. “Unfortunately, we didn’t get to hear that cry. Instead, we saw Garrett gasping for air and making quiet whimpers.”

As doctors raced to get Garrett the air he desperately needed, they first transferred him to the neonatal intensive care unit (NICU) at the hospital where he was born. When his condition continued to deteriorate, they transferred him to a higher level of care at Swedish First Hill. Less than 24 hours later, the Smiths learned he would need yet another transfer, and faced the scariest decision they ever had to make as parents. Read full post »

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.

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

Today, Wright 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,” Wright said.

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Harper Beare is ‘Doing Something Amazing’

Harper was diagnosed with acute lymphoblastic leukemia when she was just 10 months old.

When asked about the birth of her daughter Harper, Sydney Beare lights up.

“Harper was 8 pounds, 1 ounce, 21.5 inches and the most beautiful baby I’ve ever seen!” she said.

By all accounts, Harper was an exceptionally happy, and seemingly healthy, baby. She began sleeping though the night when she was just a few days old and almost never fussed, even when teething. Beare said her daughter was “totally content.”

But in July 2017, when Harper was 9 months old, she became seriously ill.

Harper first developed an ear infection, a staph infection and had an infected cut on her finger. During the next month she became lethargic and pale.

Beare noticed bruises on her legs, and later on her back and face. Harper began having diarrhea and vomiting. She also slept all the time. Despite all this, Harper’s well-child checkup in August revealed no concerns.

Then, on Aug. 21, Harper woke up with a fever.

“She was just lying there, with dry, cracked lips, screaming,” Beare remembered, choking back tears. “I was worried something was wrong but I pushed that idea aside because I didn’t want to think anything bad could happen to my baby.”

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April Discovers Power in Her Voice Through Selective Mutism Program

April Merrill is a 6-year-old who loves to sing and dance. Yet, her struggle with an anxiety disorder called selective mutism hinders her ability to do the activities that showcase her vibrant and joyful personality.

“Her voice disappears, as April describes it,” said Kelly Merrill, April’s mother. “She said that she wants to talk but can’t seem to find her voice.”

As April was growing up, Merrill noticed signs in her daughter that indicated something might be wrong.

“When April started to talk, she could only verbalize 20 or so words,” said Merrill. “She was 2 years old at the time and I noticed she couldn’t expand her vocabulary.”

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Bretton Refuses to Let Cancer Keep Him Off the Ice

Bretton Chitwood, 18, is an avid hockey player. He was diagnosed with osteosarcoma in 2016, but has since returned to the ice. He now plays with a custom prosthesis.

On May 18, 2016, Kara Chitwood and her son Bretton Chitwood traveled from their home in Lynden, Washington, to Seattle Children’s for what they thought would be a routine outpatient appointment to get magnetic resonance imaging (MRI) on Bretton’s ankle. Instead, they didn’t end up leaving the hospital. That day would become one they would never forget.

The pain Bretton was experiencing in his ankle was more insidious than they could have ever imagined. Doctors found a mass and said they needed to do a biopsy to determine what it was. One possibility was the unthinkable: cancer. Read full post »