Patient Stories

All Articles in the Category ‘Patient Stories’

After a Long Journey of Nose Reconstruction, Tristan is Smiling Again

Tristan, 9, recently underwent a three-stage nose reconstruction.

For most of the past year, 9-year-old Tristan Beck has been on a long, challenging journey toward nose reconstruction after a traumatic accident left him with a missing nose.

December 20, 2017 was a normal day of winter break for the Beck family. Tristan and his older sister were visiting their mother’s office to drop off food for a party. When they returned to the car, a dog was in the parking lot, showing no signs of aggression. However, when Tristan began to throw the dog a piece of food, it lunged at Tristan’s face and pulled him down. Tristan’s sister pulled him back, and the dog ran away.

All Tina Beck, Tristan’s mother, remembers is the blood on his face when his sister brought him back into her office.

“There was so much blood it was hard to see exactly what was wrong,” said Beck. “It was very hard for me to look at my son at first. My heart hurt and I was blaming myself for what had happened, but I wanted to be strong for him.”

The family called 911, and Tristan was transported to Seattle Children’s Emergency Department. Read full post »

Singing During Brain Surgery, Kira Performs to Preserve Her Passion

About four years ago, Kira Iaconetti, 19, began noticing something weird that would happen when she was singing or listening to music.

“It was like a light switch turned off in my brain,” said Iaconetti, a talented self-taught musician who has been performing in musicals since she was 6 years old. “Suddenly, I was tone deaf, I couldn’t process the words in time with the music and I couldn’t sing.” Read full post »

Zack Finds His Beat Amidst a Life Full of Challenges

For 13-year-old Zack Edge, playing the drums came naturally ever since he laid his eyes on his very first drum set at 3 years old.

Yet other parts of Zack’s life didn’t come so naturally, such as his ability to stand or walk.

“Zack was born with cerebral palsy,” said his mother Sara Edge, “and over the course of his short lifetime he’s gone through a lot and has had to overcome so much.”

Cerebral palsy (CP) is a condition that affects muscle movement. The muscles of some children with CP are stiff and rigid, which is called spasticity that leads to stiffness in the muscle and joints causing movement to be very difficult.

“It wasn’t until we went to Seattle Children’s that Zack’s life completely changed,” said Edge.

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Baby With Heart Defects Makes a Dramatic Recovery

Carolina Castañeda and Jesus Farias were driving home from a family outing with Olivia, their newborn daughter, when they heard her making a strange noise. As first-time parents, they thought it might be normal. However, when Olivia continued making the sound, the couple began to worry. They stopped the car, took Olivia out of the car seat, and noticed that her body had gone limp.

“Her hands and legs just stopped moving,” said Castañeda. “I didn’t know what was normal, but it did not look normal at all.”

Castañeda was startled to see Olivia’s blue lips and her eyes rolling back. The couple rushed their daughter to the nearest hospital in Yakima, trying to keep her awake. When they arrived, Olivia’s eyes were closed.

“Nurses ran around the desk and took her out of my arms – they didn’t even ask questions,” said Castañeda. “It all happened so fast.”

Doctors told the family that Olivia’s body had worked so hard to stay alive that her vessels were shutting down. When Olivia finally opened her eyes and looked around, Castañeda said she remembers feeling at peace, like everything was going to be okay.

The hospital flew Olivia to Seattle Children’s from the Yakima airport. The family was told that a helicopter would have been too slow for Olivia, in her condition.

The new parents were shocked to learn that their 2-week-old baby was in cardiogenic shock due to critical congenital heart defects and she would need surgery from Seattle Children’s Heart Center.

“Everything was scary,” said Castañeda. “She was my baby, she was my firstborn.”

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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.

Read full post »

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 »