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 »
Dr. Rebekah Fenton (left) and her sister Elisabeth Lucien stay upbeat as they wait to hear whether Fenton is a donor match.
At the age of 17, Dr. Rebekah Fenton’s sister, Elisabeth Lucien, was diagnosed with Hodgkin Lymphoma. It rocked her family’s world. When Elisabeth relapsed and faced a second bone marrow transplant, Fenton, now a third-year resident at Seattle Children’s, gave her sister more than just emotional support. Below, Fenton shares her experience as a bone marrow donor.
“If you have to get cancer, this is the one to get.”
That’s what the oncologist said when he told us my sister Elisabeth had Hodgkin Lymphoma.
Stunned by the diagnosis, my parents teared up. My brother Michael and I huddled next to Elisabeth in the hospital bed and bawled. Elisabeth was stoic. She was 17.
We were told that the five-year survival rate is 90%, and we believed those odds, combined with our faith, would help Elisabeth (and us) persevere. Read full post »
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 »
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 »
Lee Roy, a 12-year-old miniature dachshund, has been volunteering as a therapy dog at Seattle Children’s for over a decade. He loves the holiday season, says his owner and handler, Gordon Knight.
A few little jingles from a furry friend can go a long way during the holiday season at Seattle Children’s.
Lee Roy, a 12-year-old miniature dachshund, can be seen trotting down the halls of the hospital in festive attire made complete with tiny bells that announce his delivery of warm cuddles to patients.
“Lee Roy loves the holidays,” said his owner and handler, Gordon Knight. “It’s almost like he knows it’s an extra special time to spread cheer to patients and their families.”
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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.
Read full post »
As a naturally-talented quarterback and cornerback for the Northwest Junior Football League’s North Creek Jaguars, Andrew Ronneberg, 14, participated in the study led by researchers from Seattle Children’s Research Institute exploring concussion in football players ages 5-14.
New research from Seattle Children’s Research Institute and UW Medicine’s Sports Health and Safety Institute found concussion rates among football players ages 5-14 were higher than previously reported, with five out of every 100 youth, or 5%, sustaining a football-related concussion each season.
Published in The Journal of Pediatrics, the study summarizes the research team’s key findings from data collected during two, 10-week fall seasons in partnership with the Northwest Junior Football League (NJFL). Licensed athletic trainers from Seattle Children’s treated and recorded concussion from the sidelines at NJFL games to allow researchers to characterize concussions in this age group – from how often players sustained a head injury to factors that influenced their risk of injury.
“Measuring the incidence of concussion in grade-school and middle-school football players is essential to improving the safety of the game,” said Dr. Sara Chrisman, an investigator in the research institute’s Center for Child Health, Behavior and Development and lead author on the study. “It’s hard to determine the impact of prevention efforts if we don’t know how often these injuries occur at baseline.” Read full post »
Digital devices like the iPad have only been around for about 10 years, but in that short amount of time, they have become ingrained into everyday life and research examining their impact on young children is limited.
Tune into 60 Minutes this Sunday, Dec. 9 at 7 p.m. ET/PT as Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, discusses with Anderson Cooper the evolving digital age children are growing up in today and how his research hopes to uncover the impact this new era has on a child’s developing mind.
It may seem as though digital devices and touch screens like the iPad have been around for decades, but the reality is that these devices have only been around for about 10 years. In that short amount of time, they have become ingrained into everyday life, but research on their impact is limited. What concerns researchers like Dr. Dimitri Christakis is that we don’t yet understand the effects these devices may have on young children, and so that’s why they’ve taken center stage in many of his research studies.
Christakis isn’t advocating for taking screens away from children. He simply hopes he can help parents and caregivers better understand and navigate how devices like the iPad can fit into their lives in a healthy way.
“The point isn’t that we should take away all digital devices, but rather that we should come at it from a different perspective,” said Christakis. “We should ask, ‘How can we help children live healthy lives in a digital world that they’re immersed in from birth?” Read full post »
Harper Beare was diagnosed with acute lymphoblastic leukemia when she was just 10 months old. After she wasn’t able to achieve remission through conventional treatment, she traveled to Seattle Children’s to participate in the PLAT-05 T-cell immunotherapy trial. Soon after, Harper was in remission.
Seattle Children’s doctors and researchers continue to believe chimeric antigen receptor (CAR) T-cell immunotherapy has the power to revolutionize pediatric cancer care. Over the past year, they have made tremendous progress with the promising therapy, which has given patients like Harper Beare, Erin Cross and Milton Wright a second chance at life.
Seattle Children’s recently enrolled its 200th immunotherapy patient, and now has nine T-cell therapy trials targeting childhood cancers from leukemia to solid tumors, which is one of the most robust pipelines in the country.
Seattle Children’s researchers are continuously discovering new best practices based on their experience in the trials, and as a result, will share six abstracts this weekend at the American Society of Hematology (ASH) Annual Meeting in San Diego.
“It’s amazing to be at a place in our research where we’re learning from our existing trials, and immediately incorporating that vital intel into our new trials,” said Dr. Rebecca Gardner, oncologist at Seattle Children’s and principal investigator for the PLAT-02 and PLAT-05 CAR T-cell immunotherapy trials. “We are also pleased to now offer several new trials to patients who would otherwise be out of treatment options. Our goal is to offer the best therapy possible, and to never let any patient reach the end of the line.”
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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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