On the Pulse

All for one and one for all in the battle against childhood cancer

collaborate

It’s 9 a.m. on a recent rainy morning in Seattle. Julie Park, MD, has her shoes drying out by the heater in her office at Seattle Children’s Hospital. She’s on a conference call with doctors and statisticians from Germany, Canada, the U.S. and Europe, and they’re discussing neuroblastoma, the most common solid tumor in children younger than 1 year of age.

Park leads the Neuroblastoma Committee for the Children’s Oncology Group (COG), the world’s largest organization devoted to childhood and adolescent cancer research. COG is supported by the National Cancer Institute (NCI) and unites more than 8,000 experts at more than 200 leading children’s hospitals, universities and cancer centers across North America, Australia, New Zealand and Europe.

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Helping Kids Cope with Violence in the News

Children are exposed to violent events by seeing them in the news or by hearing about them from friends, and they’re likely to have fears and questions. Studies show that children can suffer long-term emotional damage from exposure to violence in news coverage.

Bob Hilt, MD, child and adolescent psychiatrist at Seattle Children’s Hospital, says parents should be prepared to help their children deal with traumatic events, such as natural disasters and acts of violence.

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Patient voices: Stacy celebrates 10 years cancer free, reflects on being chemo Barbie

In honor of Childhood Cancer Awareness Month, we will be sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.

My name is Stacy Helton and I am a 10-year cancer survivor. I celebrated this momentous milestone in July by flying to Florida to be with my family. We reflected upon how far we’ve come over the years and how much we’ve grown together.

Before sharing where I am today, it’s important to describe what has got me here.

I was diagnosed with Hodgkin Lymphoma when I was 16, the day before Christmas break my junior year of high school.

It was by happenstance that I learned I had cancer. I had slipped getting into my car, hitting my chin and chest on my steering wheel, and so my mom and I went to urgent care where I got a chest X-ray. Surprisingly it showed a tumor. Later I learned it was cancer.

It might sound funny, but when I got the news my biggest question was if I could start treatment after junior prom. I had already purchased my dress and had been looking forward to prom for months. Of course to my disappointment, I couldn’t wait and had to start treatment immediately.  

While everyone else was making last minute plans for the holiday break, I was on a flight from Anchorage to Seattle Children’s Hospital consumed with feelings of uncertainty. I was hopeful that treatment would go well because doctors said my cancer had a high survival rate, but I didn’t know what was in store for me.

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Patient voices: Jake beats cancer, starts new life at college

In honor of Childhood Cancer Awareness Month, we will be sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.

In the beginning of June 2012, Jake Steiner was on top of the world. At age 18, he had just graduated high school and was looking forward to working as a camp counselor at the Museum of Flight in Seattle over the summer. He would then be heading off to college at Santa Clara University in the fall. Life was good.

That is, until one week after graduation.

Jake had noticed a pain in his leg and he had a bump on the backside of hip bone that was about the size of his hand. He thought he had just pulled a muscle and a little TLC would take care of it, but his dad took him to a doctor because the bump was so large.

It was then that he got an MRI and received some of the worst news of his life: He was told that the bump was a malignant tumor, and after three weeks, he learned it was Ewing sarcoma. Ewing sarcoma is a bone cancer that mainly affects children and adolescents between the ages of 10 and 20 years old. It’s the second most common bone cancer in children, but only accounts for about 1 percent of all childhood cancers. There are about 200 new diagnoses of the disease in people younger than 20 years old in the U.S. each year.

“I didn’t know what my future was going to hold, but I knew I was not going to be able to go to college in the fall, which really bummed me out,” said Jake. “I was also very scared because I thought I caught it too late and I didn’t know if the cancer had spread. I thought I would die young, and that terrified me.”

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New heart device at Seattle Children’s improves patients’ survival rate and quality of life

Montana teen becomes first patient at Seattle Children’s to receive the HeartMate II ventricular assist device (VAD) and a heart transplant while being supported with an implantable VAD. He is also the first patient at any pediatric hospital in the Pacific Northwest to leave the hospital with a VAD while waiting for a heart transplant. 

The Heartmate II Ventricular Assist Device

The HeartMate II Ventricular Assist Device

Adam Kingsbury went to see his family doctor for what he thought was a bad cold. It was there that Adam, a 16-year-old from Stevensville, Mont., was diagnosed with asthma and sent home with a prescription for an inhaler and orders to take it easy.

After a few weeks, Adam’s symptoms didn’t improve. He was having trouble breathing so his mom took him back to the doctor where it was discovered that Adam had an abnormal heart rhythm. At age 5, Adam was diagnosed with myotubular myopathy, a condition that makes the heart muscle weak. Because of this, his care team knew it was extremely important to find out what was causing the abnormal heart rhythm right away.

The clinic called Seattle Children’s Montana-based pediatric cardiologist Bruce Hardy, MD to examine Adam’s heart. An echocardiogram revealed that Adam was suffering from cardiomyopathy, a condition which causes the heart to lose its pumping strength. Adam’s heart was failing and he would likely need a heart transplant. Within three hours of seeing Dr. Hardy, Adam and his mom, Kate, were on a medical transport plane to Children’s main campus in Seattle where Adam’s condition could be best treated. Read full post »

Baby Poppy diagnosed with life-threatening heart condition, now thriving on 6-month birthday

This past weekend, baby Poppy Dahl from Belgrade, Mont., celebrated her 6-month birthday. This was a major milestone day for Poppy and her family – Poppy survived and is now home with her family after fighting for her life due to a life-threatening heart condition, hypoplastic left heart syndrome. She was diagnosed with the condition before she was born.

A program by Seattle’s KOMO 4 News which aired on Poppy’s half-year birthday, documents Poppy’s story of survival as her family and the teams at Seattle Children’s Hospital and UW Medicine do all they can to give Poppy a fighting chance.

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Helipad transforms into a teaching garden for patients

Kirsten Thompson in the garden

Kirsten Thompson in the new garden

With a nationwide spotlight on fighting childhood obesity since obesity prevalence among kids and teens in the U.S. has almost tripled, it’s important we find ways to instill healthy lifestyles in today’s youth to prevent them from developing health issues down the road.

At Seattle Children’s, dietitian Kirsten Thompson found a unique way to teach kids and their families about making healthy choices by transforming the hospital’s old helipad into a teaching garden for patients and families.

Thompson, whose master’s thesis was about gardening with kids, began looking for a place to plant a teaching garden when she joined Children’s in 2008. The opportunity finally arrived this spring when the Building Hope expansion was completed and the helipad moved to a site near the new Emergency Department.

Every Wednesday, Thompson works with Children’s patients in the garden for an hour to teach them how to raise vegetables. They then head inside to the hospital’s Eat Well Be Well studio to prepare healthy, garden-inspired meals.

“The goal is to encourage and empower kids and families to eat healthy,” Thompson said.

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Eight tips for heading back to school after a Crohn’s or ulcerative colitis diagnosis

The Crohn’s & Colitis Foundation of America recently featured this question from a parent on its Facebook page: “My son was just diagnosed with Crohn’s at the end of last school year. We did a lot of resting over summer break and he was feeling almost normal again. School is now back in session and he is starting a flare up. I know he feels bad and I am letting him take his time in the morning but I want him to attempt to go to school. I don’t want to push him too hard but I think it is important that he try to start the day and then if it’s too much come home. How do you other families handle this?”

This post received nearly 200 comments and advice from parents, a nod to the fact that while going back to school is a time of excitement, it can also be very stressful if your child has a recent diagnosis of inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. In children with IBD, the digestive tract becomes swollen and inflamed. The Centers for Disease Control and Prevention estimates that IBD affects about one million Americans, occurring most frequently in people ages 15 to 30.

To help with the transition back to school, I’d like to share eight tips for parents. These tips and more are also in a video produced by Seattle Children’s.

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Vaccinations vital for teens as they head back to school

Vaccines for teensAs summer comes to a close, parents are getting their preteens and teens ready for back-to-school, from stocking up on pencils, notebooks and new clothes, to preparing for their busy fall schedules. But what’s also important to add to the list, is making sure teens are up-to-date on their recommended vaccinations.

As kids grow up, protection from certain childhood vaccines begins to wear off. Teens may also be exposed to different diseases than they were when they were younger. Therefore, it’s important for parents to know what vaccines can protect their kids, their schoolmates and our communities from unnecessary illness.

Ed Marcuse, MD, MPH, a pediatrician at Seattle Children’s Hospital, has a special interest in immunizations and wants parents to know that today’s vaccines are a very safe and effective way to prevent the infections that teens are at risk of contracting.

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Back to school nutrition, packing healthy meals for kids

BacktoSchoolLunchboxThe transition back to school is fast approaching and while kids may be wondering whether or not their Captain America lunchbox is still cool, parents are thinking about what should go in it.

Celia Framson, MPH, RD, CD, a clinical pediatric dietitian at Seattle Children’s Hospital, says parents shouldn’t panic about packing the perfect lunch for their child. Instead, they should involve kids in the packing process and focus on providing a balanced meal that meets a child’s taste preferences and nutritional needs. Parents should also model healthy behaviors that their kids can learn from so they can adopt healthy habits that will last a lifetime.
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