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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In honor of Brain Tumor Awareness Month, former Seattle Children’s patient Nina Garkavi shares her experience of battling a brain tumor as a young adult.
Nina with her dog Oscar at the Run of Hope in 2012
My name is Nina Garkavi and I am now 25 years old. I would have never thought I would be so closely connected to Seattle Children’s Hospital. My family moved to America when I was just 4 years old and I went through my childhood thankfully not needing any of the services that are provided by Seattle Children’s.
After finishing high school in Seattle, I moved to New York City for college. I scored a job on Fifth Avenue right after graduating in 2010 and began working in the big city. While it was all new and filled with busy days, I really felt like this was the start of my new journey and I was climbing up the big New York City ladder. I had to think about a lot of things – how would I afford living in the city? What train would I take to get to work? Where would I do laundry because there wasn’t a machine in the building? All those questions and more were filling up my mind but never did I think about cancer or what I would do if I got it. Not at 22. That was not something I was going to have to worry about…right? Wrong.
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Eighteen-year-old Ibrahim El-Salaam, aka “I-Bizzle,” was born with a blood disorder called sickle cell disease and has been coming to Seattle Children’s Hospital for as long as he can remember. His disease has required him to spend a lot of time in the Inpatient Cancer Unit at Seattle Children’s, which houses patients who require inpatient stays for both cancer and blood disorders. When he’s there, he likes to find fun ways to pass the time – like making an “MTV Cribs”-inspired video to show off his pad in the country’s first Adolescent and Young Adult (AYA) Cancer Unit, which opened last year.
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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 »
“Stop talking and start doing.”
The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.
“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”
A little girl makes a difference
Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.
“We need action,” she said during an interview for a cancer awareness documentary. Read full post »