AML is a rare aggressive cancer of the blood and bone marrow. It is the most common form of acute leukemia in adults with approximately 21,000 people diagnosed each year in the United States.
To recognize World AML Awareness Day, Celgene’s Kim Hodges sat down with Anna Ferguson, RN, BSN, an oncology research nurse at Johns Hopkins Cancer Center for a Facebook Live discussion about acute myeloid leukemia and how it impacts patients as well as doctors, nurses and caregivers. In our discussion, Anna highlighted the basics of the disease and what groups like the first global AML coalition called KNOW AML are doing to raise awareness.
Having started her career 25 years ago, Anna spoke about her personal journey to becoming an oncology nurse and working with patients in clinical trials. She spoke at length about studying the subject of hope over the past five years and the role that it plays in the live and treatments of patients with cancer. “The first person I took care of in the oncology unit had AML and I remember being so struck and moved by the intensity of the illness and the lack of treatments available,” Anna said, “Yet, I was also struck by the amount of hope and joy and perseverance in the patients. It was the first time that I saw that illness and hope could – and should – live side by side.”
Throughout her career, Anna has learned the true meaning of hope through patients’ inspiring perspectives and their stories about why hope matters and the hopes they keep that give them the strength to wake up and battle their disease each and every day. One of Anna’s patients described how she views hope, “I’m only human. Of course, I want to be cured. But the hope for a cure is not what drives me every day. It’s not what gets me out of bed in the morning. It’s not what lights my fire. It’s different, smaller hopes that keep me going every day. The hope of having enough energy to cook a meal for my family, hoping to make it to my daughter’s soccer game, hoping to avoid transfusions for just a week so I can go visit my sister. These are the things I hope for day to day that make the quality of my life better. These are the things I need my treatment team to know, to see if they can help me make them happen.’” For Anna, it is perspectives like this one that helped shape her nursing practice.
Yet, I was also struck by the amount of hope and joy and perseverance in the patients. It was the first time that I saw that illness and hope could – and should – live side by side.
To help support the educational needs of patients and their caregivers, Anna and her team at Johns Hopkins developed a set of important questions for patients to ask themselves in order to help them have an open dialogue with their oncologists. “There are so many things patients discuss at these visits, but in between those things, it is very important to discuss how AML and its treatments are affecting your day to day life and how you’re managing emotionally when it comes to your illness,” remarked Anna.
Join the full discussion on Facebook and share Anna’s message of why hope matters as we recognize AML patients around the world on World AML Awareness Day.