Adolescent and Young Adult (AYA) Cancer

All Articles in the Category ‘Adolescent and Young Adult (AYA) Cancer’

Conquering Childhood Cancer: An Inside Look at Seattle Children’s Cancer Care Unit

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 »

Clinical Research: What Would You Do if it Were Your Child?

Dr. Abby Rosenberg is the medical leader of Seattle Children's Adolescent and Young Adult (AYA) Cancer Program

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.)

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Teen Preserves Dreams of Motherhood After Cancer Relapse

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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 »

How Cancer Shaped Heather Into Who She is Today

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

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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Remembering Daniel and the Legacy He Left Behind

Daniel Mar

Daniel Mar

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.

Remembering Daniel

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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The Fault in “The Fault in Our Stars”

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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New AYA Cancer Leader Helps Teens and Young Adults Balance Life with Cancer

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

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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Nina fights a brain tumor at 22, adopts the motto “just keep swimming”

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.

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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Ibrahim “I-Bizzle” shows off his crib in Seattle Children’s teen and young adult cancer unit

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 meets the team that saved his life

Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.

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 »