Patient Stories

All Articles in the Category ‘Patient Stories’

A Miracle in the Making

Greta Oberhofer’s leukemia is in remission thanks to T-cell immunotherapy developed at Seattle Children’s.

Greta Oberhofer survived a bone marrow transplant for leukemia when she was just 8 months old — but the side effects nearly killed her. Then, six months later, her family’s worst fears came to life.

“My husband put the doctor on speaker phone — he told me Greta relapsed and that her prognosis was bad,” remembers her mother, Maggie Oberhofer. “She had already suffered so much with the chemotherapy and transplant, and we didn’t want to put her through that again. We didn’t know what to do.”

The Oberhofers — who live in Portland — were considering hospice for Greta. Then they heard that Seattle Children’s Dr. Rebecca Gardner was testing a therapy that uses reprogrammed immune cells to attack certain kinds of leukemia.

“Dr. Gardner said not to give up because her therapy was putting kids like Greta in remission, and that the side effects were often a lot easier to tolerate,” Oberhofer says. “We suddenly had a way forward.”

A few months later, the Oberhofers watched Greta’s reprogrammed cells drip into her body. Two weeks after that, her cancer was in remission.

Read full post »

Tumor Paint Brings Light to Toddler’s Brain Tumor

Hunter Coffman, 2, with his family.

Hunter Coffman, 2, with his family.

In December of last year, Laura Coffman began to notice that something wasn’t quite right with her 2-year-old son, Hunter. He was leaning to one side and seemed to lose his balance easily. When he became lethargic and started vomiting a few days later on Dec. 28, she knew it was time to see the pediatrician.

After all standard tests came back normal, they were sent to Seattle Children’s for further testing and to find an answer. Unfortunately, it was far worse than anything Coffman could have imagined.

“What I thought was probably just Hunter being a wobbly toddler with a virus turned out to be a brain tumor,” said Coffman. “I will never forget that day. It was the most traumatic six hours of our lives.” Read full post »

How a Teddy Bear is Helping in the Battle Against Cancer

erin-with-t-bearHe may not be able to fly, or be as fast as the speed of light, but for children who have been diagnosed with cancer at Seattle Children’s, the cuddly teddy bear who wears a mask and purple cape is still a super hero to them – he gives them strength. His name is T-Bear and he’s bringing hope to children with cancer.

Meet T-Bear, He’s more than just a teddy bear

Catherine Lindgren, director of the Therapeutic Cell Production Core (TCPC) and its’ team at Seattle Children’s Research Institute, had an idea to make a life-changing moment feel a little more personal for cancer patients undergoing immunotherapy, a new treatment that harnesses a patient’s own immune system to seek and destroy cancer. Lindgren wanted every child to know they aren’t alone – that they have a team of support around them. And so, T-Bear was born.

“Teddy bears are historically comforting to sick children,” said Lindgren. “We wanted families to know we’re on their team, and together, we’re Strong Against Cancer.” Read full post »

Researchers Identify Concussion Treatment for Persistent Cases in Children

Carmen Einmo, 16, suffered a concussion after falling off a horse. A new study shows that incorporating psychological care and coordinated care improves outcomes for adolescents with persistent concussion symptoms.

Concussions can create a host of symptoms—headache, dizziness, moodiness, upset stomach and other issues. In most cases, those symptoms eventually dissipate, but about 15% of young people who get concussions struggle with persistent symptoms despite seeing doctors and receiving medical care. The ongoing symptoms interfere with school, social life and physical activity.

Researchers at Seattle Children’s Research Institute published a study today in the journal Pediatrics showing a new intervention for adolescents with persistent post-concussive symptoms that improved health and wellness outcomes significantly. The approach combines cognitive behavioral therapy and coordinated care among providers, schools, patients and families.

“We were pleased to find that using an approach that adds a psychological care component to treating concussions and providing coordination of care in areas of the patient’s life significantly improved outcomes,” said Dr. Cari McCarty, a psychologist and researcher at Seattle Children’s Research Institute who led the study. “This new approach aims to improve the quality of life for patients who were otherwise left to deal with unrelenting concussion symptoms.” Read full post »

Stamm Camp Celebrates 50 Years of Bringing Camp to Medically Complex Children

Going to summer camp can be perceived as a childhood rite of passage. It’s a place for kids to cut loose and embrace their independence for a few special days. Whether it’s participating in new activities like fishing or archery, or bonding with fellow campers — camp can be a magical place that creates memories that last a lifetime.

Unfortunately for some kids who have medically complex conditions, the idea of going to summer camp doesn’t seem like an option. It can be especially true for children who require a wheelchair or rely on ventilators or feeding tubes to keep their health stable.

It wasn’t an option until a doctor from Seattle Children’s, Dr. Stanley Stamm, came up with a remarkable idea 50 years ago — create a summer camp catered specifically for kids who face serious medical challenges.

Every August since 1967, Seattle Children’s Stanley Stamm Summer Camp has given children with complex medical conditions the chance to step out of their diagnoses to “just be kids.”

Funded exclusively by generous donors so kids can attend for free, the week-long sleepover camp has become a powerful opportunity for campers to connect with peers, as well as former campers turned volunteers who understand what it’s like to live with a chronic illness.

Read full post »

A Day in the Life of Hank the Therapy Dog

Ever wonder what it’s like to walk in the ‘shoes’, or rather the ‘paw prints’, of a furry friend? In honor of National Dog Day, On the Pulse is featuring one of the incredible canine and human companion pairs that bring joy and comfort to the hospital each week through Seattle Children’s Visiting Dog Program.

Hank, the 5-year-old, 78-pound Old English sheepdog, may seem like an unlikely visitor strolling through the colorful halls of Seattle Children’s, but he’s there for one important reason — to put as many smiles on the faces of young patients as possible.

The shaggy canine with a slow strut makes his rounds visiting patients in different units of the hospital every other Thursday of the month alongside his trusty human companion, Tom Whalen.

During their visits, the “Tom Hanks” duo carry a celebrity-like status, frequently being stopped in the hallways by patients, parents and staff for a quick pet on the head or simple greeting.

From his calm demeanor, soulful stare and wag of the tail each time he encounters someone, it’s clear that Hank, a registered therapy dog who has been visiting the hospital for two years, is skilled in comforting those that he meets.

Read full post »

Princesses in Elaborate Outfits Bring Joy to Patients

Cheal PrincessOnce upon a time, in a hospital not so far away, a princess came to spread joy to kids at Seattle Children’s. Wherever the princess went, smiles followed. For one little girl, seeing the princess was a dream come true, and soon – the patient and the princess – became the best of friends.

This is the type of tale that plays out each month at Seattle Children’s thanks to volunteer Chael Stenchever who wears many crowns, transforming herself into a variety of princesses before visiting patients.

Stenchever’s elaborate costumes are nothing short of magical. Just watch her walk through the halls of the hospital during one of her visits and you’ll see that a princess costume can truly brighten a child’s day.

For 8-year-old Daisy Hader, that’s the experience she has when Stenchever comes to visit.

“Characters and stuffed animals are Daisy’s world,” said Lolly Hader, Daisy’s mother. “Meeting the princesses in real life connects her two worlds together – fairy tales and reality. It’s truly magical for her.” Read full post »

Boy With Rare Craniofacial Condition Inspires Others With a Simple Message

Charlie Portrait

Charlie Nath, 11, has a simple message to share with the world.

Charlie Nath, 11, is many things. He’s funny. He’s smart. He’s articulate. He’s courageous. He’s a surfer. He’s a snowboarder. He’s a drummer.

What he’s not, is defined by his rare genetic condition: Crouzon syndrome. He says he wants the world to know, “It’s what’s on the inside that matters the most.”

Changing the world one speech at a time

Crouzon syndrome is estimated to occur in about one of every 62,500 people. It affects each person differently and the severity varies widely. The condition occurs when there is an abnormal fusion of the facial bones and skull, which affects the shape of the head and the appearance of the face. For Charlie, his eyes are set wider apart than normal, he has prominent eyes and his upper and lower jaws don’t align properly. Read full post »

New Hope for HIV Treatment: Empowering the Immune System Through Immunotherapy

Tranisha Arzah, 26, was born with HIV and works as an HIV educator.

People who acquire HIV can lose a critical function in their body: their immunity. Left untreated, HIV infects the immune system and disables a person’s ability to fight infections, which can turn the common cold into a death sentence. Antiviral treatment can prevent this from happening, but if medications are stopped the virus comes back almost immediately.

Currently, one out of every 200 American adults lives with HIV. As doctors, scientists and advocates gather in South Africa this week at the International AIDS Conference, researchers at Seattle Children’s have been thinking hard about how to kick HIV, and they have an ambitious goal: They want to develop an immunotherapy that harnesses the power of the immune system to kill and resist HIV.

“Immunotherapy has been successful in treating cancer and we’re optimistic that we can take that same technology and apply it to HIV,” said Dr. Thor Wagner, an infectious disease specialist and pediatrician at Seattle Children’s Research Institute. “The hope is that in the future we’ll be able to take an HIV-positive person’s T cells and re-engineer them to attack and resist the virus.” Read full post »

Revolutionary Surgery Helps Little Girl Breathe Without a Tracheostomy For the First Time

Hannah Schow,11, with mother, Jennifer Schow.

Hannah Schow,9, with mother, Jennifer Schow.

There were only a few weeks to go in Jennifer Schow’s seemingly normal pregnancy when her world turned upside down.

She noticed she’d been gaining weight suddenly, more than she thought was expected. Her doctor said everything seemed fine, but something didn’t feel right.

Feeling uneasy, she and her husband got a second opinion and the news they received confirmed their fears.

“I could see the baby’s face on the ultrasound screen,” said Schow. “I joked that it looked like her ear was missing.”

The ultrasound technician became quiet and said she’d be right back. That’s when Schow knew there was something seriously wrong. Read full post »