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.
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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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In my last post about “The Fault in Our Stars,” I made a comment about how most patients live, if not thrive after their cancers. I am deeply grateful for the readers who correctly commented that some patients also die.
There are no words to express how tragic, painful, or unjust, the death of a young person from cancer can be. I particularly appreciated these comments because they came a day after the death of one of my own, and very beloved, patients. I wrote this memoir the day he died. With his parents’ permission, I am sharing a few pieces of his story, his legacy, with you.
Daniel Mar died early this morning at the age of 20. He was one of my first patients as an independent oncologist. For that alone, I could say he will not be forgotten. Daniel was a “patient” simply because he happened to have cancer; terrible cancer that ultimately took his life. But beyond that, he was so much more. He was an advocate. A son. A brother. A devoted friend. To me, he was my muse. My teacher. And, through it all, my friend.
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I loved “The Fault in Our Stars.” Both the book and the movie. I read the book a few years ago during a flight. I cried so hard that I’m sure the other passengers were alarmed, if not downright uncomfortable sitting near me. This summer, I saw the movie with a girlfriend. Same thing – I went through a whole pack of tissues and left red-faced, swollen and physically dehydrated.
As we walked out of the theater, my girlfriend (also a pediatrician) turned to me and said skeptically, “I don’t get it, Abby. Why are you so emotional? Isn’t this what you DO for a living?”
The answer is yes. Taking care of teens and young adults with cancer is what I do. And, perhaps, that is why this book/movie hit me so hard. For one thing, we oncologists are often so busy thinking about chemotherapy and side effects, we don’t see the other side of cancer. We get to know our patients and families, but we see them in the contrived settings of clinic and the hospital – not at home, amongst their friends or on a trip to Amsterdam. We aren’t always privy to their witty internal monologues or their poignant observations about the injustices of life, the things that really matter to them, or the life lessons they’ve learned during their arduous journey with cancer.
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The teen years can be difficult– you’re fighting for your independence but still trying to develop an identity. And your 20s come with their own obstacles, like going to college, starting a career and living on your own. Can you imagine facing those developmental milestones while injecting yourself with insulin or enduring chemotherapy?
Dr. Abby Rosenberg, medical leader for Seattle Children’s Hospital’s Adolescent and Young Adult Cancer program and researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research, and Dr. Joyce Yi-Frazier, research health psychologist at Seattle Children’s Research Institute, have seen teens with cancer and type 1 diabetes struggle physically and psychosocially. Adolescents and young adults with cancer are less likely to achieve social milestones like college, marriage, and employment and more likely to suffer from anxiety and post-traumatic stress. Likewise, teens with type 1 diabetes struggle to control their blood sugar levels and are more likely to be depressed.
“The teen and young adult years are a critical time of transition for anyone,” Rosenberg said. “When you add a serious illness to the mix, you are asking patients to do extraordinarily hard things. We want to help them integrate the experience into their identity so they are not only surviving, but thriving.”
An intervention model
To help patients, Rosenberg and Yi-Frazier worked together on the Promoting Resilience in Stress Management (PRISM) study. PRISM is an intervention model designed to teach patients resilience – the ability to maintain psychological and physical well-being in the face of stress – to buffer the impact of serious illness. Read full post »
Dr. Abby Rosenberg recently assumed a leadership role in the Adolescent and Young Adult (AYA) Cancer Program at Seattle Children’s Hospital. She is also a researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research. Dr. Rosenberg happens to love to write, so she’ll be contributing to On the Pulse from time to time. Below, she talks about her own experiences as a teen, and what it’s like for teens with cancer to balance those struggles while battling a serious illness.
Dr. Abby Rosenberg is the new medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
It is with excitement and some nervousness that I begin my role as the new medical leader of our Adolescent and Young Adult (AYA) Cancer Program at Seattle Children’s Hospital. Why am I nervous? I love working with teens and young adults. But, I also remember my own adolescence and young adulthood. It wasn’t easy. I was socially awkward. Painfully insecure. A little bit lonely. I was a good student, a decent soccer player, and (unfortunately) an inconsistent friend. I wanted desperately to fit in, but never quite did. I believed that each boyfriend was “the one”…until suddenly he wasn’t. I fought with my mother constantly; I wanted her to be my friend and never would have admitted that I really needed her to be my mom. I couldn’t wait to move out, to be independent, to prove to the world that I was somebody.
Adolescence and young adulthood is a period of life that is supposed to be characterized by struggle. Maybe that sounds melodramatic, but I think it’s true. It is the time when we develop our self-identities. Our independence. We navigate peer relationships. Romantic relationships. Family and community roles. We begin to set our educational, vocational, and other life goals. We take on real responsibilities. Put bluntly, we grow up.
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Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen.
Nearly all men and women in the United States are infected with human papillomavirus (HPV) during their lives, putting them at greater risk of developing life-threatening cervical, anal, vaginal, penile, throat and tongue cancers. But, what if it was possible to stop these cancers from developing?
The National Cancer Institute has awarded Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen more than $2 million to research that possibility. She is studying what happens in the body between the time of HPV infection and cancer development in search of opportunities to intervene and prevent malignant disease.
“There are generations of people who did not get the HPV vaccine or got vaccinated after they were already exposed to HPV,” Katzenellenbogen said. “Those people could still develop cancer. We need to understand their disease process if we are going to help them.” Read full post »
Dr. Douglas Hawkins is the chair of the COG study
At the American Society of Clinical Oncology (ASCO) Annual Meeting, Children’s Oncology Group (COG) researchers presented promising findings from an international study that has identified a new therapy for treating rhabdomyosarcoma, a common childhood cancer. The therapy has fewer harsh side effects, meaning it lessens the chance of infections, need for blood transfusions and infertility later in life.
“Although we did not improve the cure rate, we are excited that we have identified a therapy that was as effective as standard treatment, but has fewer harmful side effects,” said Dr. Douglas Hawkins, chair of the COG study and associate division chief of Hematology/Oncology at Seattle Children’s Hospital. “Most children are cured of this cancer, and so we want to limit not only the side effects they experience during treatment, but also reduce the side effects that affect long-term health.”
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