Patient Stories

All Articles in the Category ‘Patient Stories’

After Life-Saving Surgery, Summer Overcomes the Odds

When Cassie Fannin and her husband arrived at her 19-week ultrasound, the newly married couple was excited to learn more about their child.  However, the first-time parents’ joy quickly turned to uncertainty when the ultrasound showed their baby’s stomach in her chest due to a life-threatening condition.

Fannin learned that her daughter, Summer, would be born with a congenital diaphragmatic hernia (CDH). Summer had a hole in the left side of her diaphragm that allowed her stomach, intestines and a portion of her liver to slip through into her chest cavity. This prevented her left lung from developing normally.

“To say it was a shock is an understatement,” said Fannin. “We went from being ecstatic about finding out we were having a girl to absolutely devastated in a matter of seconds. I left that day a completely different person. My sadness slowly turned into anger and resentment as I thought, ‘Why us? Why our baby?’”

Doctors referred the family to Seattle Children’s Prenatal Diagnosis and Treatment Program since Fannin’s baby would need surgery after birth, if she survived. The couple met Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s, when Fannin was about 22 weeks along.

“My husband and I were completely lost and overwhelmed,” said Fannin. “Dr. Riehle helped ease our troubled minds during a really uncertain time. My feelings of bitterness and sorrow slowly started to melt away as I came to terms with the diagnosis and the realization that we were no different than anyone else getting a life-changing diagnosis, and I just focused on my excitement to meet her.” Read full post »

Teen With Melanoma Gets Back to Doing What She Loves

Ruth Garcia, 17, received treatment from Seattle Children’s for her melanoma.

During seventh-grade gym class, Ruth Garcia remembers a friend pointing out a black mole she had on her left knee. Ruth didn’t think much about it until two years ago, when she began to feel pain in her knee and noticed that the mole had grown and changed colors to gray and red.

“That’s when I started to worry more,” said Ruth, now 17.

In spring 2016, Ruth’s mother took her to see her primary care provider near the family’s home in Walla Walla, Washington. They did a biopsy on the mole, and she was diagnosed with spitzoid melanoma. Ruth was referred to Seattle Children’s Cancer and Blood Disorders Center.

A child born in the U.S. has about a one in 40 chance of developing melanoma during their lifetime. Seattle Children’s sees about six children a year who were either misclassified with melanoma or have spitzoid melanoma. The cause of spitzoid melanoma is unknown.

“I was surprised,” said Ruth. “I never thought something like that would happen to me.” Read full post »

Patients Share Their Top Resolutions to Ring in the New Year

With the countdown to the New Year almost here, On the Pulse caught up with a few of the patients who inspired our readers with their stories throughout 2018. Below, they offer their hopes, dreams and goals for the year to come.

A shoulder above his cancer, Miguel sets sights on giving back

Miguel Navarro, 19, is focused on the road ahead after treatment for a rare bone cancer.

In 2018, doctors built a right shoulder for Miguel Navarro, 19, after surgically removing an aggressive type of bone cancer known as osteosarcoma that threatened his life. Miguel spent most of the last semester of his senior year of high school in the hospital going through chemotherapy and intensive rehabilitation to regain the use of his right arm. Now, he’s solely focused on the road ahead – one that includes getting back to a hobby he’s passionate about – driving his stick shift car – and giving back to others.

“My goal for 2019 is to give back to the community that took care of me and supported me during my time of need,” Miguel said. “I’m blessed to be alive. Now, I want to be hope for someone else.” Read full post »

Sam Shares His Struggle With OCD Through Candid Melodies

Sam Foster, 19, has struggled with obsessive compulsive disorder for most of his life. At first he felt ashamed of it, until he began expressing himself through music and underwent intensive treatment at Seattle Children’s. Photo credit: Christopher Nelson

When Sam Foster steps onstage, guitar in hand, he lights up the room with his confident presence.

Yet behind his poised demeanor is a painful truth that begins to unravel as he lets his lyrics flow through the microphone.

Sam has battled with obsessive compulsive disorder, or OCD, most of his life.

According to the National Institute of Mental Health, OCD is a common, chronic and long-lasting disorder. It occurs when a person has uncontrollable, reoccurring thoughts, known as obsessions, and behaviors that they feel the urge to repeat over and over, known as compulsions.

In response to the social stigma that often surrounds mental health disorders, Sam initially felt ashamed of having OCD. That was, until he began expressing himself through writing music and eventually got the treatment he desperately needed.

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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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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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