Patient Care

All Articles in the Category ‘Patient Care’

From 35 Percent Chance of Survival to Five Years Cancer-Free, Double Stem-Cell Transplant Improves Outcomes for Kids With High-Risk Neuroblastoma

Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

In August of 2009, when Katie Belle was just 3 1/2 years old, a persistent fever led her to Seattle Children’s Emergency Department where doctors discovered a baseball-sized tumor in her abdomen. She was diagnosed with high-risk neuroblastoma, a cancer that starts in immature nerve cells and develops into tumors. Her chance of survival: 35%.

“I felt like someone stuck a dagger in my stomach,” said Katie’s mother, Jennifer Belle. “I couldn’t breathe. However, I had to put on a brave face for Katie.”

For children with high-risk neuroblastoma, which according to the National Cancer Institute occurs in approximately one out of 100,000 children, Katie’s prognosis was not uncommon. On average, less than 50% of children with this disease live five or more years after diagnosis.

However, a Phase 3 trial performed by the Children’s Oncology Group (COG), and led by Seattle Children’s oncologist Dr. Julie Park, has found that adding a second autologous stem-cell transplant, which is a transplant that uses the patient’s own stem cells, to standard therapy improves outcomes for patients with high-risk neuroblastoma. Read full post »

Doughnut Shop Tip in Texas Leads Family to Immunotherapy Cancer Trial, Zane Becomes Cancer-Free

“As a parent, you never want to hear that your child has cancer,” said Paul Esposito, of Plano, Texas. “It creates an emotion that starts at your feet and takes hold. It’s devastating.”

This was the terrible news Paul and his family received in 2010 when his son, Zane Esposito, was only 7 years old. Zane, now 12, was diagnosed with acute lymphoblastic leukemia (ALL) in June 2010. Zane underwent three grueling years of cancer treatment, including 365 days of chemotherapy, before reaching remission. Two years later, Zane relapsed in January of this year. Their only option: another three years of aggressive chemotherapy.

“I really don’t like chemo, it’s the worst,” said Zane. “My back hurt super bad due to tiny fractures from the chemo. I couldn’t even bend over to tie my shoes. And here I was having to start another three years all over again.”

Not only was the thought of starting over daunting, but Zane faced a major hurdle as he began chemotherapy – his cancer was not responding to the treatment. He had refractory ALL. Zane and his family were desperate for another treatment option.

About 2,000 miles away in Seattle, Wash., they would find that other option. But first, they would learn about it in the most unlikely place: a doughnut shop. Read full post »

Seattle Children’s Ranked #10 on Forbes “America’s Best Employers” List for 2016

Seattle Children’s is proud to announce that this week, Forbes ranked the hospital #10 on its list of “America’s Best Employers” for 2016. Seattle Children’s is also the third highest ranked company in the “Healthcare & Social” category.

Other top-ten companies include Google, Costco Wholesale, SAS and JetBlue Airways.

To create the list, Forbes surveyed more than 30,000 U.S. workers employed by companies with more than 5,000 staff members to determine how likely they were to recommend their employer to someone else, and how they felt about other employers in their industry. To view the full list visit,”America’s Best Employers.”

To better understand what makes Seattle Children’s such a special place to work, watch the video above to hear it firsthand from the faculty and staff members who work here.

Researchers Work Toward New Type 1 Diabetes Therapies For Patients Like Juliana

Juliana Graceffo, 11, has type 1 diabetes. She must test her blood sugar throughout the day and take carefully calculated doses of insulin.

Children with type 1 diabetes and their families have to do several calculations throughout the day to stay healthy. Did my daughter check her blood sugar before breakfast? Does she need an extra snack because she has gym class? Is there someone at school to help my child check her blood sugar?

Type 1 diabetes is an autoimmune disease that injures the insulin-producing cells in the pancreas and leads to a lifelong requirement of daily insulin injections. It is a considerable burden of care on patients and parents, who effectively never get a rest from the demands of staying healthy and safe.

According to the American Diabetes Association, about 1.25 million Americans have type 1 diabetes. A new $1 million grant from The Leona M. and Harry B. Helmsley Charitable Trust will get doctors and scientists at Seattle Children’s Research Institute one step closer to better treatment for type 1 diabetes by studying the use of immunotherapy to treat the condition. The work is in collaboration with researchers at Benaroya Research Institute at Virginia Mason (BRI)Read full post »

Madeline’s Mom Finds Beauty in Tragedy Through Journaling Program

Madeline Holt with her mother, Meagan

Madeline Holt is a bubbly, positive 3-year-old who likes to cuddle, listen to music, play with blocks and cars, and, in typical toddler fashion, do what she wants to do when she wants to do it. She is also strong and determined to beat all odds stacked against her.

At age 1, Madeline was diagnosed with Zellweger syndrome, a rare genetic condition that destroys the white matter in her brain. The condition leads to a number of other complications, including seizures, respiratory problems, liver failure and even brain hemorrhages. Most children with Zellweger syndrome do not live past 1.

There’s no treatment for Zellweger syndrome. Instead, caregivers at Seattle Children’s treat Madeline’s symptoms as they occur. Madeline is blind, has very limited mobility now and has a feeding tube. Despite these obstacles, she has mastered 50 different sign language signs.

“You learn to accept the disease for what it is,” said Meagan Holt, Madeline’s mother. “It’s terrible, but for today, she’s here and that’s all we care about.” Read full post »

Amie Lusk: Full-Time Child Life Specialist, Part-Time Elf

Child Life specialist Amie Lusk blows some distracting bubbles for Christian Lybbert on a difficult day while his sister, Izabella, watches.

Child Life specialist Amie Lusk blows some distracting bubbles for patient Christian Lybbert on a difficult day while his sister, Izabella, watches.

Amie Lusk couldn’t have known it at the time, but she started on her career path the day she got caught sleeping in the book nook of her fourth grade classroom.

For weeks, she had been hiding her fatigue and sneaking naps in the nook. But that day a classmate found her, woke her up and marched her to the school nurse, who sent her home with a fever.

Lusk’s doctor ordered a blood test, and her mom got an alarming message when the results came in: “Take Amie to the Hematology/Oncology Clinic at Seattle Children’s.”

On March 26, 1992, Lusk, then 10, was diagnosed with acute lymphoblastic leukemia (ALL). After two years of treatment at Seattle Children’s and a complete recovery, she had two important pieces of self-knowledge: First, she was resilient — if she could bounce back from cancer, she could stare down all manner of other challenges. Second, she wanted to work at Seattle Children’s when she grew up.

“For some people, cancer is the worst thing in the world — it’s horrible and even life-ending,” she said. “For me, it shaped the course of my life.” Read full post »

Six Things to Expect in the Neonatal Intensive Care Unit (NICU)

Every new mom hopes to have a healthy baby who enters the world right on time. But unfortunately, deliveries don’t always go as planned, and some babies arrive too soon. Preterm birth, which according to the CDC occurs when an infant is born before 37 weeks of pregnancy, affects about one out of every 10 infants born in the U.S. each year. Approximately 50,000 of those infants are born very premature, at less than 28 weeks of gestation.

Sarly Dickinson knew there was a chance her little boy may come early due to complications she experienced during pregnancy, but she held out hope that he would make it to term. Unfortunately, David entered the world at just 25 weeks. Requiring surgical intervention for hydrocephalus, a condition where fluid builds up in the brain, he was transferred to Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) where he received care for three months. While Dickinson said 25 weeks was much too early, she was thankful David’s birth story wasn’t any scarier.

“My water broke at just 23 weeks and I was terrified because I understood the risks of having a baby that early, including the terrible reality that we may be faced with having to let him go,” Dickinson said. “I immediately went on bed rest and luckily he held out a little longer and arrived two weeks later, weighing a tiny 1 pound, 7 ounces.” Read full post »

Seattle Children’s Pilots Digital Platform For Kidney Transplant Patients

Seattle Children’s is launching a pilot with Health123 for a digital program that focuses on follow-up care for transplant patients.

Transplant day is a joyous milestone for children and families who’ve been through a difficult illness. But the healing does not end when the new organ is in place—in fact, that is when the real work begins, according to Dr. Jodi Smith, Medical Director for the Kidney Transplant Program at Seattle Children’s.

“One of the biggest factors in a successful transplant is for the patient to follow a careful regimen afterwards so the new organ can do its job,” said Smith. “Patients often struggle to maintain their health after a transplant and need extensive support.”

To help with this problem, Dr. Smith’s transplant team is working with Dr. Jane Dickerson and Dr. Michael Astion from the Department of Laboratories on a pilot for a digital program from Health123 that focuses on the follow-up care for transplant patients at Seattle Children’s, which has one of the highest-ranked kidney transplant programs in the country. Read full post »

Doctor Gets Creative with Casts for Little Girl with Cerebral Palsy

Lauren Huber 004

Dr. Yandow poses with Lauren by her bedside at Seattle Children’s.

For a child, having to wear a bulky, fiberglass cast around an arm or leg might not sound like a fun treatment option, especially when they need to wear it for up to six weeks.

So doctors at Seattle Children’s are doing what they can to make the experience a little more fun.

“What color casts would you like?” Dr. Suzanne Yandow, chief of Orthopedics and Sports Medicine at Seattle Children’s, asked Lauren Huber, 4.

Lauren looked up at Yandow with her big blue eyes, holding tightly to her baby doll, Kiddo, and exclaimed, “Pink!” without hesitation. “But I’d also like a little purple for my twin sister,” Lauren added as she looked at her mom. “Her favorite color is purple, so I want purple. But just a little. I want it to be mostly pink,” she said. Read full post »

How 10 Days at Seattle Children’s Changed My Life

When I was 16, I spent 10 days at Seattle Children’s in the Inpatient Psychiatric Unit (now called the Psychiatry and Behavioral Medicine Unit, or PBMU).

I fought it. I hated it. I couldn’t get out of there fast enough.

Looking back three years later, I can tell you that those were the most important 10 days of my life. If not for my time at Seattle Children’s, I’d probably be in jail now, or dead.

Everyone on the unit met my resistance with compassion – and somehow, they got through to me. Even though I fought being in their care, they cared for me. They cared about me.

I left Seattle Children’s with medications that helped me and coping skills I still use today. Read full post »