Cancer and Blood Disorders

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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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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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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The 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 »

Headlines these days related to research funding are grim: “Seattle researchers fear federal cuts will costs lives and jobs” and “Show me the money: Is grant writing taking over science?” are two recent stories that ran in the Puget Sound Business Journal and The Guardian, respectively.

The federal government announced in May that the National Institutes of Health 2013 budget will drop by five percent, or $1.71 billion, to $29.15 billion, compared to 2012. The cuts are part of the effort to balance the budget and, based on what our researchers say, are part of the “new normal” moving forward.

But there’s a bright spot here at Seattle Children’s: Philanthropy for research is increasing, and it’s making a difference.

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More heads are better than one—especially when it comes to designing Seattle Children’s new expansion, Building Hope. Children’s brought together a unique advisory board made up of patients, families and hospital staff to provide feedback throughout the design process.

With Building Hope, Children’s wanted to create an environment that would support the physical, emotional and psychological aspects of healing. Who better to understand the subtleties of the patient experience than actual patients and their families?

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Cancer Patient Room

On April 21, Seattle Children’s Hospital will be the first hospital in the country to open an inpatient cancer unit dedicated to teens and young adults. The 16-bed unit will occupy the top floor in the hospital’s new Building Hope facility, which will house inpatient cancer treatment, critical care treatment, and a new Emergency Department.

Teen and young adult patients in the new unit will benefit from the support of their peers, as well as an enhanced package of psychosocial support programs that will improve their treatment experience.

The unit will also be the new home of Children’s Adolescent and Young Adult (AYA) Oncology Program, which was one of the first five cancer programs for teens and young adults in the U.S. Children’s AYA program has been a model for the development of other programs across North America, and will now set the stage for opening a new space for this age group.

“It’s going to be a groundbreaking event in the U.S. to have a unit like this dedicated to teens and young adults,” said Rebecca Johnson, MD, an oncologist at Seattle Children’s. “It presents an opportunity for us to continue with the development of new programs for this age group. Our unit will also provide an example to other institutions of how to deliver quality care for teens and young adults in a dedicated space.”

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As part of Seattle Children’s collaboration with Children’s Film Festival Seattle, professional animators Charlotte Blacker from England and Britta Johnson from Seattle offered two days of animation workshops to hospital patients.

With short stories featuring a wide range of objects and characters from aliens, exploding stars to “banana slips”, patients’ imaginations came alive as they created their stop motion animation films.

To make the films each patient came up with a story idea, made their characters or objects that would be in their film and then moved them in small increments between individually photographed frames. Once the frames were played together as a continuous sequence, their animation was born.

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Northwest Film Forum’s 8^th annual Children’s Film Festival Seattle will be rolling out the red carpet to children and their families today through Feb. 3. It has become the largest film festival on the West Coast dedicated to this young audience, reaching more than 10,000 people during festival screenings in Seattle and a subsequent festival tour of 15 to 20 U.S. cities.

New this year, current and former patients at Seattle Children’s Hospital will have a few very special starring roles in the festival.

Lights, camera, action!

The festival will showcase more than 120 innovative, inspiring and fun films from 38 countries. Children’s is excited that five short films created by patients or featuring patients’ creative works have been selected to be shown at the festival.

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Cancer Patient Room

In April 2013, Seattle Children’s will open Building Hope, a new  facility that will house a new cancer inpatient unit with 48 single patient rooms. Additionally, Building Hope will include 32 private rooms for critical care treatment and a new Emergency Department.

The cancer care space will span two floors and offer several features that will make a patient and their family’s stay as personalized and comfortable as possible.

A 16-bed teen and young adult cancer space will occupy its own floor, where patients will benefit from the support of their peers in an age-appropriate environment. No other hospital in the United States currently offers a dedicated inpatient unit of this size for the care of teens and young adults with cancer.

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