Patient Stories

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.

On 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 »

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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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

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 »

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.

Thanks 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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This 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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On 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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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.

As 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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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 »

In a northern California suburb in 1999, Kaitlin Burns was born very sick, that much was certain. She was extremely lethargic, vomited non-stop and soon wouldn’t eat anything. When her family finally received a diagnosis two weeks after her birth, the news was devastating.

Kaitlin was diagnosed with propionic acidemia, a rare, inherited metabolic disorder that affects about one in 100,000 in the United States. Propionic acidemia prevents the body from processing protein properly, leading to an abnormal buildup of a group of acids known as organic acids. Abnormal levels of organic acids in the blood, urine and tissues can be toxic and can cause serious health problems.

Michelle Burns, Kaitlin’s mother, recalls how the local hospital at the time was their second home. “During the first year of her life, I can’t even count on my fingers and toes how many trips we made,” she explains.

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Friday, July 13, 2012 was the day 9-year-old Travis Anderson drowned in the Pilchuck River near Snohomish, Wash. It was also the day that his mother, Kim, and the emergency team at Seattle Children’s saved his life.

Travis, a wiry redhead, was wading in a shallow portion of the river, near his mom, his brother and sister, and his best friend. He lost his footing. The current swept him downstream and beneath a log, where he became trapped under water. Kim and Travis’s older brother Jacob couldn’t free him. After a few minutes, a bystander helped shift the log, and Kim pulled her youngest child to the river bank.

Travis was a ghostly pale gray, his eyes half open. Blue lips and purple circles around his eyes indicated cyanosis, a lack of oxygen in the blood. He was unresponsive, with no pulse. Kim began CPR while her daughter called 911.

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