Patient Stories

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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 »

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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Bioethics experts share personal perspectives on life-changing cases

BioethicsThis week medical experts from across the country will gather in Seattle to discuss “Cases That Keep Us Awake at Night,” the theme of the 2013 Pediatric Bioethics conference. It’s not uncommon for things to keep us awake at night—a disagreement with a friend or neighbor or anxiety over a big work assignment—but the issues that clinicians and bioethicists will tackle at this confab are quite different.

Most of us, for instance don’t often think about the following questions:
• Should an organ transplant be performed over a family’s objections?
• Should Child Protective Services intervene when a family fails to address the eating habits of a morbidly obese child?
• Should healthcare professionals withdraw medical interventions against the wishes of a family?

Doctors, nurses and others will also discuss the intersection of the personal and the professional, and how it affects their work. At last year’s conference, Douglas Opel, MD, MPH, of Seattle Children’s, spoke about being diagnosed with Crohn’s disease and how it altered his role as a physician. Excerpts from that talk, which was published in its entirety in The Hastings Center Report late last year, are included below.

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One mother’s creation provides a valuable tool for tiny cancer patients

Robin in her Hickman HiderOn July 13, 2012, Robin Ulness was diagnosed with leukemia at just 9 months old.  Gayle Garson, Robin’s mother, said the diagnosis was a complete surprise and it all came on very quick.

“Getting the news was devastating,” Gayle said. “It was like getting kicked in the stomach by a horse. It was so surreal; I just kind of went numb.”

Robin was diagnosed with infant acute lymphocytic leukemia (ALL), which arises from white blood cells called lymphocytes that do not mature properly. While ALL is the most common type of cancer in children, infant ALL is very rare.

Robin’s diagnosis marked the beginning of two years of treatment. Robin came to Seattle Children’s Cancer and Blood Disorders Center and began six weeks of inpatient care. She then had four more rounds of chemo, which required a number of inpatient stays.

While Robin was inpatient, Gayle came up with an innovative idea for something that would not only help her daughter but would also help other children going through treatment.

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Seattle Children’s patient has positive response to new cancer treatment

Lynsie Conradi_cropThe first patient in a cellular immunotherapy Phase 1 cancer trial at Seattle Children’s has had a positive response to T-cell therapy. The 23-year-old patient, Lynsie Conradi, from Bellingham, Wash. received the welcome news yesterday. Conradi signed up for the study after experiencing a second relapse of leukemia earlier this year.

The new treatment involves drawing blood from the patient, reprogramming their infection-fighting T-cells to find and destroy cancer cells, and infusing the blood back into their body.

“Results show that Lynsie has had a positive response to the T-cell therapy and, at this time, we do not detect any leukemia cells,” said Rebecca Gardner, MD, principal investigator for the clinical trial.

The next step for Lynsie is a stem cell transplant, with the aim of clearing the cancer from her body. The goal of the immunotherapy cancer trial was to get her to this stage. Read full post »

Spinal fusion helps teen gymnast overcome scoliosis

In honor of National Scoliosis Awareness Month, Alexandra “Love” Wahl shares her experience with scoliosis and her path to finding her ‘new’ self.

“Two rods, 16 screws, one new me”

Love Wahl before scoliosis Alexandra “Love” Wahl was an exceptional gymnast. A fierce competitor all of her life, Love grew up in the gym and in 2012 at age 13, she qualified for the Washington state championships.

But one day while practicing her routine on the high bars, a coach told her she needed to “stay straight.” Love was confused – she felt she was as straight as she could possibly be. The coach called Love off the bars and had her bend forward so she could look at her spine. The coach slowly turned and motioned for Love’s mother, Wanda, to come down from the stands. Love’s spine was severely curved, forming a prominent “S” shape.

“From that moment our lives changed,” recalls Wanda. Read full post »

Tips for parents of children enrolled in a research study

On the Pulse recently posted a story on bioethics and research from Ben Wilfond, MD. In that story, Wilfond defended a research study that had been criticized by federal officials over the informed-consent requirements. We thought it would be helpful to follow up with tips for parents who are interested in or have children enrolled in research studies. This is the first in what we hope will be a series on the topic, with both parents and researchers weighing in, to increase awareness about research at Seattle Children’s.

Katelyn and Jennifer MhyreAs biomedical researchers, my husband and I are both very invested in the research process. Our daughter, Katelyn, has a disease that is incurable, but we are optimistic that her participation in various research studies could have a positive impact on not only her life, but also on the lives of other children in the future. Nevertheless, we take each opportunity to participate in a study under thoughtful consideration before signing our consent.

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Flushing out new cures for intestinal disease

People with good digestion

You can’t blame Patient #1 for not wanting to share his name; he’d rather not be known as the guy who swallowed poop in the name of science.

But he does want you to know he is willing to go to extremes to help find a cure for Crohn’s disease, an autoimmune disorder that causes severe abdominal symptoms and robs his body of nutrients.

It’s not as crazy as it sounds. Fecal microbiota transplantation (that’s right – fecal, as in feces, as in poop) is a tried-and-true treatment for recurrent bouts of Clostridium difficile infection (or C. diff), a dangerous intestinal bacteria.

It works by repopulating the intestinal tract with “good” bacteria, which are often wiped out by the antibiotics used as the first line of defense against C. diff. Read full post »