IMAGINE you are told your child has cancer. They survive. And then they get diagnosed a second time. And they survive.
Two Cancer Experiences
Diagnosis. Chemotherapy. Surgery. Radiation. Chemotherapy. NED (No Evidence of Disease). Proclaimed a Survivor. Second Diagnosis. Chemotherapy. BMT (Bone Marrow Transplant). NED.
Life has been a whirlwind since my son Steven was first diagnosed with cancer in 2006. I found the only thing that kept me going was praying. Praying as I became educated about my son’s illness and treatments; patience as a caregiver to a teenager and then a young adult; and making sense of the entire cancer journey. His BMT (Bone Marrow Transplant) put an exclamation point on my emotions -as I was told that there were no guarantees of the cancer never returning – and set a fire within me to passionately engage the entire world of AYA Cancer! I disengaged from my former self as a college professor and looked to the future with determination to become a change maker.
I wanted to learn what AYA Cancer really meant. What kind research would impact this population? Who were the decision makers in policy making, service providing, and advocacy? How I could squeeze myself into this new world?
I traveled throughout the country meeting many wonderful advocates representing the research and medical communities, parents like myself, and the survivors of AYA Cancers. I learned that medical research is happening and making headway to identify the best ways to treat and hopefully cure many of these rare cancers. I learned that some of the more common “older adult cancers” like breast and colon are often more aggressive in the young adult populations. I learned that AYA’s were best served in environments designed to meet the needs of their age group – not with young children or older adults. And, lastly, that research has identified a set of psychosocial needs for AYA Cancer patients and survivors that are often unique to their age group.
Enter son Nick (President of Elephants & Tea)
Nick and I explored ways to best get the word out and provide an outlet to AYA Cancer patients and survivors. We wanted to establish a media platform that encouraged self-expression through narrative formats, art work and poetry. In other words a creative energy platform for members of “THE HERD” – but…also a place where resources would be incorporated into the stories being shared to our readers.
So here we are today with a website site where patients, caregivers, and advocates can share, visit and learn what it means to be an AYA Cancer Survivor when life and all its promise and plans have come to a screeching halt.
Thank you for taking the time to read my letter. I hope you will join us.
Be Heard. Join the Herd.
Angie Giallourakis, Ph.D.