Researchers at Seattle Children’s are sharing their success thus far in treating leukemia using immunotherapy – a technology that uses the body’s own immune system to destroy cancer cells. While scientists are excited about progress of these clinical trials, no one is more grateful for this research than the families of the patients who have benefitted from it.
A tiny girl, a tough decision
Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.
In March of this year, 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 3 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 »
Cameron shows off his star bandage alongside his stuffed animal’s matching bandage.
No kid wants to have surgery. It’s not a fun experience – but Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s Hospital, does her best to help reassure patients and families that everything will be okay by creating custom bandages shaped like hearts, trains and even fish.
A personalized touch
“I think the designs make the kids feel special,” said Riehle. “When we see kids, typically something unexpected has happened to them. They are seemingly healthy and then something happens that causes them to need surgery. These situations can be really stressful for parents and families. Personalizing the dressings is just one way I can help to make the experience better for them.”
Each year, Seattle Children’s surgical teams – from craniofacial to orthopedics – perform about 13,000 surgeries, double the number of any other institution in the region. But for Riehle it’s about more than the sheer number of surgeries she performs; it’s about caring for each individual patient.
The personalized bandages are one way Riehle can help children who need surgery – and their families – cope with the experience. Read full post »
When speaking about breast and colorectal cancers, typically you wouldn’t think of children. These cancers are considered adult conditions and rarely occur in individuals under the age of 21. But according to two new studies from the National Cancer Data Base (NCDB), although these diseases are rare in kids, they do still occur.
“The thought that kids even face these diseases is surprising,” said Dr. Morgan Richards, research fellow in the division of general surgery at Seattle Children’s Hospital. “But that’s why it’s important to study such diseases.”
According to investigators at Seattle Children’s Hospital and Maine Medical Center, who presented this week at the 2014 Clinical Congress of the American College of Surgeons, the studies highlight the need for an increased awareness among pediatric clinicians that these cancers do occur in children and a stronger collaboration between adult clinicians and pediatric care providers to increase survival rates. 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 »
Dr. Abby Rosenberg is the medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
After a child has been diagnosed with cancer, one of the first conversations we have with families is about clinical research. In fact, almost all children with cancer have the opportunity to participate in research, and many parents are asked to make decisions about enrollment early in their child’s cancer experience. The question we as researchers have to ask ourselves: Is this unfair? Parents are already struggling with the nearly impossible tasks of accepting their child’s cancer, assimilating huge amounts of new (perhaps confusing) medical information, and uprooting their lives to meet the demands of illness. Can they also make educated decisions about enrolling their child in clinical research?
Many ask, “What would you do if it were your child?” The question is not surprising; parents often make cancer-treatment decisions by “trusting staff.”1 Unfortunately, the answer is often, “I don’t know.” And that answer is true.
We don’t know how it feels to walk in your shoes, with your family’s values, perspectives and relationships. We also come from a different perspective, one where research is embedded in our training and guides almost all of our medical decision-making. We believe in research, but we don’t want to bias you with that belief. (As an aside, I’m pretty sure that all of my training and perspective would be forgotten if it were my own child, and I would ask the very same question of my medical providers. Like you, my single goal would be to do the right thing for my child.)
Read full post »
Rene Soto Taylor has done his best, and has put in his all to overcome cancer. At only 8 years old, he’s been through countless treatments to try to rid his body of the most common and most difficult type of solid tumor to treat in children – neuroblastoma. Today, Rene is hoping doctors have finally found the treatment that will conquer his disease: I-131-MIBG therapy.
A relatively new form of therapy, I-131-MIBG therapy delivers radiation directly to tumors, killing the cancer cells. This type of therapy concentrates the radiation at the site of the cancer, which means fewer long-term risks for patients. Read full post »
Shannon Keating, 16, before cancer diagnosis.
Shannon Keating always imagined that she would be a mom some day, but she didn’t expect she’d be treated at a fertility clinic at age 17. Shannon was diagnosed with Hodgkin Lymphoma as a high school sophomore, was successfully treated and then relapsed nine months later. As she prepared to fight for her life a second time, experts at Seattle Children’s Hospital helped her preserve her dream of being a parent one day.
A devastating diagnosis
Shannon was first diagnosed with Hodgkin Lymphoma in March 2013, after she discovered a lump on her neck. The treatment was six months of less-aggressive chemotherapy that oncologists did not believe would affect her fertility.
“I was relived that this therapy was less toxic, but when it was finished I didn’t feel like I was done,” Shannon said. “I had this feeling hanging over my head. I believed my cancer would come back.”
Unfortunately, Shannon was right. That December, her cancer relapsed. Facing a life-threatening illness once again, she learned her second round of treatment would be more aggressive and could cause infertility. Doctors offered her the opportunity to freeze her eggs so that she might later become pregnant using in-vitro fertilization, but Shannon was initially overwhelmed. Read full post »
In honor of Childhood Cancer Awareness Month, 26-year-old Heather Wick talks about having cancer at the age of 18 and how the experience influenced who she is today.
Heather Wick with her son, Daniel
Until beginning to write this post, I had never really thought about how generic introductions are. Name, age, job title, where you live, whose wife or mom you are…how much do you share to tell a person who you are? My introduction is fairly typical, Heather Wick, 26 years old, nanny, lives in Monroe, Alan’s wife and Danny’s mom…oh and CANCER SURVIVOR.
At this point in exchanging pleasantries I often get, “Oh my gosh… you had cancer?! You’re so young!” and then I begin to walk my curious new friend through my journey. Why don’t I just leave out the cancer survivor bit and make things quick and simple you ask? Well because I am proud to be a cancer survivor. That title is as much a part of me as my name is. So, new friends, I invite you to walk through a shortened and condensed version of my journey here, on the blog for the hospital that saved my life.
Read full post »
This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.
Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service
Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.
Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.
The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.
When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.
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