by Lorna Larsen RN BScN, Team Shan President
My daughter Shanna (Shan) was diagnosed late with metastatic breast cancer in early 2005. Shan’s symptoms were misdiagnosed repeatedly by medical professionals and the cancer had time to spread. Despite her positive outlook and the predictions of hope, Shan lost her life to the disease. Shan was only 24.
As a nurse and health promotion specialist, the issue of breast cancer in young women had not come across my desk. Encouraged by colleagues and experts in the field I was asked to consider using my nursing skills and talents to fill the information gap in breast cancer awareness for young women. I took on the commitment to support my grief journey and make a difference for young women following in Shan’s footsteps.
by Clarissa Schilstra, CKN Editor
One of the biggest challenges we face as AYA cancer patients and survivors is getting our voice heard. If we’re treated in pediatric settings, communication is often directed to our parents or guardians, so we often lack the opportunity to speak out. If we’re treated in adult settings, we aren’t always prepared with the communication and negotiation skills to be able to speak out, even though we may be given the space to do so. We’re in this strange no-man’s-land.
Together with Sharon Bray – teacher and author of two books on writing and health – CKN welcomes you to our new Writing Series where Sharon helps readers tap into the healing power of writing during difficult times. As Sharon puts it, “Your stories matter. You are your stories. Our stories shape us and act as the lens through which we see the world. It’s through story that we make sense of our lives, reclaim our voices, and learn our words can touch others’ hearts.” Follow along with this bi-monthly series with Sharon and please send us your stories….they matter to us.
by Jonathan Agin, CKN Childhood Cancer Advocacy Editor
The United States House of Representatives is about to take a vote today (March 13, 2018) on a piece of legislation that is known as “The Right to Try Act of 2017.” HR 878 will come to the floor for a vote at approximately 6:30 pm. Over the summer the Senate passed S. 204 which, by the House moving on the legislation which is likely to pass tonight, will then be ripe for the Senate to once again move the legislation forward for signature by the White House and thus Right to Try will be codified on the federal level in the United States.
by Sue Robins, Living with Cancer
I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.
Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.
by Vicky Forster PhD, Childhood Cancer Survivor
More children than ever before are surviving cancer for decades after their original diagnosis. However, survivors can experience long-term health effects from treatment, with the Canadian Cancer Society saying that two-thirds of children will develop one or more of these chronic or long-term conditions. In many ways, researchers and health professionals are playing catch-up trying to figure out what aspect of a childhood cancer experience may be responsible for these late health effects. This is particularly tricky with regards to psychological and neurological effects of treatment and for many chemotherapies, it is still unclear what impact these might have on the developing brain.