Patient Stories

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Wedding wish becomes a reality for patient family thanks to cancer care team

The Olivera's wedding day

Photo courtesy of Soulumination

Tuesday was a day that the Olivera family will never forget – It was a beautiful day of unity, celebration and joy. It was a bright spot in what has been one of the most challenging years of their lives.

Oct. 22 was the day that Saul and Alejandra Olivera were finally able to get married after three years of being engaged. “Making it official” was something they were very excited to do and something their 9-year-old daughter, Miranda, had wished for.

From a limo, cake, caterer and photographer, to a chocolate fountain (the most important element for Miranda) – the big day was complete. And it all became a reality, within one week’s time, thanks to three members of Miranda’s cancer care team at Seattle Children’s who made it happen with the help of the community.

“It was the most amazing day and we couldn’t have asked for anything more,” said Alejandra. “Everything was perfect and Miranda was so happy to be there and be a part of the celebration.”

Now, this wasn’t just any wedding – it was extraordinary. And in order to understand its significance, it’s important to understand the family’s journey, as well as the people that were behind the important day.

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The story behind Landon Browne: The 7-year-old who honored his surgeon by dressing up as him for Halloween

Landon Browne and Dr. Jay Rubinstein

During a recent visit to Seattle Children’s, 7-year-old Landon Browne dressed up as his favorite surgeon, Jay Rubinstein, to honor and celebrate him at this Halloween time of year. We suspect you saw the related media coverage, and wanted to share more about Landon, who has captured the public’s interest.

There are landmark moments in every child’s life that a parent likes to document. The first time he rolls over, crawls, stands and walks are among the moments worth noting. But for Alysia and Brendan Browne, the moments they got really excited about for their son, Landon, relate to his hearing.

“When he said, ‘butter’ for the first time, I threw open the front door and yelled, ‘He said, butter!” The neighbors probably thought I was crazy,” Alysia said, with a smile.

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Lessening the growing pains with teen heart transplant transition day

Teen transition day group talk

Transitions are a part of life. Becoming more independent, turning 18 years old, planning for college – these are transitions every teenager must face. It’s the gray area between adolescence and adulthood, a time when most teenagers step out from the shadows of their parents and head into the world in search of self-sufficiency. For some, however, this can be daunting, especially when it comes to taking ownership of one’s own health.

For a group of 11 teenagers at Seattle Children’s Hospital who have all at one time or another had a heart transplant, their transition means taking a more hands on approach to their personal health.

They are now old enough to be the drivers of their own healthcare decisions and they are old enough to transition out of Children’s to continue care at adult institutions. Read full post »

Patient Voices: Kat becomes titanium girl, makes a difference for future cancer patients

Hello my name is Kat Tiscornia and up until March of 2013 I was your typical 8th grader. I loved horseback riding, eventing to be more specific, skiing and spending time with friends and family. Then it all changed. I went to the doctor to have a large bump on my thigh checked out.  I was told what I thought might be a bad bruise had a high probability of being cancer.

After many tests, two biopsy surgeries for my lung and my leg, and a stressful couple of weeks, I was diagnosed with a rare form of bone cancer called Ewing sarcoma. There are approximately 200 new diagnoses of the disease in the U.S. each year. Read full post »

Patient voices: At age 27, Hunter puts his life on hold to fight cancer

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

At 27 years old, Hunter Storey had a great life in Sun Valley, Idaho. He worked as a fireman, enjoyed spending time with his girlfriend of eight years, and was an avid skier and ski instructor.

However, last December things started to change.

It was ski season and he was coaching ski racing to a group of high school students when, one day, he noticed a painful lump on his shin that didn’t seem right. He decided to see a doctor.

After what was first thought to be a broken bone, seven months later, he learned it was cancer – Ewing sarcoma to be exact. Ewing sarcoma is a bone cancer that mainly affects children and adolescents between the ages of 10 and 20 years old, but there are cases that occur at all ages.

“It was of course very shocking when I was diagnosed,” said Hunter. “But I was really lucky because I had caught it early.”

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Patient voices: Hunter Schroeder celebrates two years cancer free

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

Hunter Schroeder OBK at Ballpark 8.25.13On Sept. 19, 2013, 8-year-old Hunter Schroeder celebrated one of the biggest milestones of his life – it marked his second year cancer free.

“He’s perfect.”

That’s all his mother, Heather Schroeder, heard when the tests results came back from his two-year checkup. And with that, the weight of the world lifted off her shoulders. She was finally able to relax and breathe again.

He was healthy and perfect, exactly what she’d been praying to hear ever since her son was first diagnosed with acute myeloid leukemia (AML), a cancer of the myeloid cells, in 2011.

“It’s taken a while stop panicking about every bruise and every fever, and to see the hospital and not think his cancer has come back. But after two years, we’re finally getting there,” said Heather. “We’re finally getting back to normal, or at least adjusting to our new normal.”

She can, however, vividly remember the difficult time when the bruises on Hunter’s body did signify something very wrong with her little boy. Read full post »

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 »

Craniofacial surgeon revolutionizes treatment for Apert syndrome, improves kids’ lives

The new technique was recently published in the journal of Plastic and Reconstructive Surgery, “Normalizing Facial Ratios in Apert Syndrome Patients with Lefort II Midface Distraction and Simultaneous Zygomatic Repositioning.”

Apert syndrome is a rare condition that occurs in one of 45,000 to 160,000 live births. For the children it affects, it’s very complex and is not only challenging to live with, but it’s also very difficult to treat.

That is, until now.

Before and after new surgeryThanks to Richard Hopper, MD, surgical director of the Craniofacial Center at Seattle Children’s Hospital, there is now a new treatment method that offers kids with Apert syndrome the opportunity to have a much better quality of life.

The new surgical approach not only treats symptoms more effectively, but also treats the “look” of the syndrome, offering children the chance to have a more normal face and head shape.

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