Patient Care

All Articles in the Category ‘Patient Care’

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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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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Using Gene Therapy to Build an Immune System in Newborns Without One

Gene therapy holds promise of a potentially safer, more effective path to a cure in infants born without the critical infection-fighting cells of the immune system.

Out of every 60,000 births, a baby arrives to face the world without a fully functioning immune system leaving them unequipped to fight even the most common infections. Children with this rare life-threatening genetic condition, known as severe combined immunodeficiency (SCID), have the best chance at a healthy future if they undergo a stem cell transplant before they are 3 ½ months old.

Seattle Children’s recently opened a clinical trial that is seeking a potentially safer, less aggressive and equally effective path to a cure by using a novel gene therapy to fix the faulty gene that causes the most common type of SCID.

On the Pulse met with the trial’s principal investigator, Dr. Aleksandra Petrovic, a pediatric transplant specialist and researcher at Seattle Children’s Research Institute’s Center for Immunity and Immunotherapies, to learn more about the experimental therapy available through this trial. Read full post »

When the Going Gets ‘Ruff’, Kids Find Comfort From a Four-Legged League of Heroes

In honor of National Dog Day, On the Pulse is recognizing three unique four-legged visitors who bring joy to kids at Seattle Children’s.

When a child is in need of some cheering up during a hospital stay, Seattle Children’s knows just the right MVP for the task – Most Valuable Pup that is. With their wiggling tails, wet noses and oozing charm, each of the nine volunteer therapy dogs in Seattle Children’s Animal-Assisted Activities Program harnesses their unique strengths and abilities to bring a smile to every patient they meet.

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Boy Born With Life-Threatening Condition Rises Up For a Brighter Future

In 2009, during Laurina Barker’s 20-week ultrasound, she and her husband Ryan received news that no expecting parents want to hear.

“The technician turned to me and said something looked different and that they would have my doctor call me,” said Barker.

A couple of days later, the Barkers would learn their baby had congenital diaphragmatic hernia (CDH), a rare birth defect where a baby’s diaphragm does not form completely. This leaves a hole between the abdomen and chest allowing their organs, most often their intestines and liver, to slip through the hole and up into the chest.

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Anesthesia Bag Art Lifts Spirits of Kids Undergoing Surgery

When 4-year-old Sho Hansen entered the doors of Seattle Children’s Bellevue Clinic and Surgery Center to get his tonsils removed, he clung on tightly to his mother.

“After his name was called and we sat in the exam room, all he wanted to do was sit in my lap and not acknowledge anyone that came in to talk to us,” said his mother, Lisa Hansen. “Sho is shy and tends to get nervous around people he doesn’t know well.”

One of the staff members in line to help prepare Sho for his surgery was a nurse anesthetist named Anisa Manion.

“My role at the clinic is to administer anesthesia to patients to help them fall asleep before going into surgery,” said Manion. “We’re given a short period of time to get kids as comfortable as possible. The process can be very challenging — many kids are anxious and nervous, so the friendlier we make the environment for them, the easier it is for them.”

Manion has a special trick up her sleeve when it comes to calming kids down during the pre-surgery process.

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Rapid Genetic Testing Helps Find Answers for Sickest Kids

Rapid exome sequencing (rES), a blood test that can quickly detect genetic abnormalities, is helping obtain timely genetic diagnoses for critically ill children at Seattle Children’s.

A newborn boy was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU) earlier this year with arthrogryposis — a condition where an infant cannot move, their joints becoming frozen in place. When geneticist Dr. Jimmy Bennett met the infant, he was on a respirator and could only move his eyes.

“We didn’t know the cause of the arthrogryposis and could not tell the parents much about their son’s prognosis — whether he would ever come off the ventilator or if he would be intellectually disabled,” Bennett said. “With so little information, it was difficult to decide how to proceed.”

This family had a previous pregnancy that was similarly affected. Bennett believed the cause might be genetic and recommended rapid exome sequencing (rES) — a blood test that can quickly detect genetic abnormalities.

Less than a week later, the test identified a specific condition that led providers to administer an appropriate therapy. Before long, the child was moving.

“Never in a million years would we have tried this therapy without the genetic test results,” Bennett said. “Two weeks later, the patient was off the ventilator and moving all four limbs. It was like a miracle.” Read full post »

Star Athlete Sisters Are ‘Twinning’ When It Comes to Tackling Celiac Disease

Through Seattle Children’s Celiac Disease Program, twin sisters Claire and Emma learned how to adopt a new gluten-free diet in to their active, athletic lifestyle.

Claire and Emma Brennan are 13-year-olds who are always on-the-run.

Whether it’s sprinting across the basketball court or flying to their next volleyball tournament halfway across the country, these twin sisters stop at nothing to achieve athletic excellence.

“Claire and Emma have sports practice almost every day of the week,” said their mother, Cathy Brennan. “We’re always on-the-go, so I have to make sure they have easy access to snacks they can eat to keep energized.”

The active teens burn calories at a rapid pace given their hours of intensive sports practice, and so a balanced diet is key to performing at their best.

However, food prep takes some careful planning in the Brennan household as both girls are on a strict gluten-free diet to manage celiac disease, an autoimmune disorder that they were diagnosed with in September 2017.

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Lifesaving Experience Inspires Kindergartner to Donate Birthday Gifts

Hannah Mae Campbell, 6, received a lifesaving heart transplant at 4 months old. She recently donated her birthday presents to Seattle Children’s.

Last month, 6-year-old Hannah Mae Campbell wanted to invite her entire kindergarten class to her birthday party. However, Hannah decided that she couldn’t possibly keep all of the gifts herself; rather she told her mother that she wanted to give them to kids at Seattle Children’s.

She said she wanted to give kids something to play with that would help them “have fun” and “feel happy,” since being at the hospital can sometimes be sad. Surpassing her original goal of donating 20 gifts, Hannah and her family delivered 139 toys and books to the hospital. The activities included Lego sets, Play-Doh, My Little Pony, Hot Wheels, puzzles, coloring books, dolls, superheroes and stuffed animals.

“Everyone says she’s such an old soul who is always wanting to help others,” said Jennifer Campbell, Hannah’s mother. “A lot of it may have to do with growing up a little quicker in a hospital. Hannah has experienced things like blood transfusions and surgery that a lot of kids have never had to go through.”

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