Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.
In 2014, Andy and Maggie Oberhofer, of Portland, Ore., faced the most difficult dilemma of their lives. Their baby daughter, Greta, was dying. She had been diagnosed with acute lymphoblastic leukemia when she was just three months old and standard treatments were not working. Her family prepared for the worst.
“Greta had barely survived chemotherapy and a transplant,” Andy Oberhofer said. “We didn’t want her to suffer any more if she couldn’t be cured. We found ourselves considering end-of-life care for our 1-year-old daughter.”
But then, Greta’s family found hope. Greta qualified for a cancer immunotherapy trial at Seattle Children’s Hospital designed to treat leukemia patients who have relapsed after a transplant. This innovative technology reprograms the body’s T cells and reintroduces them into the immune system, where they hunt down and destroy cancer cells.
“Immunotherapy just made sense to us,” said Oberhofer. “We believed it could work.” Read full post »
You may remember Kat Tiscornia from September of last year when she shared her experience of battling Ewing sarcoma and becoming “Titanium Girl.” Kat, now a sophomore at Mercer Island High School, asked On the Pulse if she could share an important message with those who cared for her at Seattle Children’s. We think you’ll enjoy reading it as much as we did.
Thank you. It’s just two simple words. In some languages it’s just one, gracias or merci for example. I was brought up to say thank you all the time. Thank you to my teachers, my coaches, my bus driver and the store clerk behind the counter. Are these two words really enough though? What if it’s a big thank you? What if the people you want to thank are the reason you are standing here today?
In March 2013 I was diagnosed with Ewing sarcoma, a rare form of bone cancer. I was at Seattle Children’s Hospital when I first met my oncologist, Dr. Doug Hawkins. I will never forget that day. He had to deliver the worst news of my life. However, as he told me that I had a cancerous tumor in my leg, his voice was full of compassion, patience and honesty. He was honest about how hard this journey I was about to embark on was going to be. I remember being very scared that day, but I never felt hopeless. He had a plan for me and I trusted him. Thank you, Dr. Hawkins. Read full post »
Dr. Katie Williams, a pediatrician and urgent care specialist at Seattle Children’s Bellevue Clinic and Surgery Center, lived every parent’s worst nightmare when her 1-month-old son turned gravely ill one Saturday evening in January. Here, Williams shares how her infant escaped the grip of death — and how she gained a new level of gratitude — thanks to her colleagues’ expertise in pediatric life support.
Dr. Katie Williams with her son, Grayson
The Saturday that is forever burned in my memory started out typically. My husband David DeTerra and I took our three kids — 4-year-old Evan and 1-month-old twins Elisabeth and Grayson — to an afternoon birthday party for a friend. On the way home, we stopped for takeout and looked forward to a relaxing evening at home. I remember sitting in the car thinking how glad I was that the twins had reached the 30-day mark, because that’s the point where infants are less likely to get serious infections.
What happened next came totally out of the blue.
Grayson started breathing funny and he had this strange rhythmic cry. I figured he was hungry and wanted out of his car seat to nurse. When we got home, David noticed he felt cool and clammy and his face looked pale. We both tried to feed him, but he wouldn’t eat. His eyes, normally so alert, couldn’t connect with us at all. When his tiny body went limp, we frantically called 9-1-1. Read full post »
In the video above, take an inside look at Seattle Children’s Hospital’s Cancer Care Unit and meet the individuals at Seattle Children’s dedicated to helping children and teens conquer childhood cancer, the second leading cause of death in children ages 5-14.
Tour the country’s first adolescent and young adult cancer unit thanks to a guide who knows the unit all too well, a former patient. See first-hand the cutting-edge research that is saving and enhancing the lives of children and adolescents – from using the body’s own immune system to fight cancer to a relatively new form of radiation therapy that offers hope to children with recurrent neuroblastoma. Read full post »
Nestled serenely in the woods of the Pacific Northwest near Mt. Rainier is a unique camp for kids. Stanley Stamm Summer Camp is week-long, sleepover camp for children with serious illnesses, ages 6 to 14 years old who are patients at Seattle Children’s Hospital. From cystic fibrosis to congenital heart disease, Stanley Stamm Camp can care for children with terminal or chronic medical conditions who may be unable to attend other camps due to their medical needs.
Founded in 1967 by Dr. Stanley Stamm, a Seattle Children’s cardiologist and quiet hero, the camp has transformed since it’s inception to something truly magical and memorable. “The camp started very small, with only a few volunteers,” said Stamm. “Today, we have about 100 campers and more than 200 volunteers. They are truly the spirit of the camp. It’s been nearly 50 years since we started, and it will hopefully continue long after I’m gone.” Read full post »
Brenda Senger and her daughter Tessa.
Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.
“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”
Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.
“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”
Read full post »
Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.
Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.
Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous. In total, Kathia was taking 20 pills each day.
“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”
Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.
Roadblocks on the road to cures
Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »
Last year at my son’s high school graduation, I was overcome by a flood of emotion. Not surprising you might say; all moms get choked up when they see their young adult in cap and gown, on the verge of an important life transition. I started thinking back to when Justin was just a preschooler, and then something caught my eye.
A handful of students were sitting closer to the stage, supervised by teachers. While I didn’t know them by name, I knew them. These were some of the students in the special education classroom that I had just visited a few weeks prior, the classroom where Justin’s younger sister, Carrie, would soon be enrolled..
As Justin was starting preschool 14 years ago, Carrie was diagnosed with severe autism. Her preschool years were filled with numerous therapies and interventions all aimed at helping her to be more able. During those early years, I sought out moms whose kids were a bit older, figuring they’d be a few steps ahead of us in navigating this new world of special needs. Read full post »
Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.
Some moments are so significant the weight of them seems to hang in the air. I experienced this first-hand when cancer survivor Milton Wright III met the people who helped save his young life.
You may remember Wright, the leukemia patient who achieved remission thanks to an immunotherapy protocol designed by Mike Jensen, MD, at Seattle Children’s Research Institute.
Wright is doing well and recently had a chance to meet the scientist who designed his therapy, the technicians who modified his cells and the family whose foundation helped fund his treatment. Read full post »