Robert Murray's Story

Lesson Learned from My Grandfather (Pepa)

Erin Demakos, RN

Above is a quote by Einstein, and it is indeed an excellent advice. Einstein was of course one of the greatest scientists whoever lived, if not the greatest. This is a quote I remember my grandfather saying to me after spending the entire day at the blood bank receiving 2 units of red blood cells. This was something he did every week as his disease was advanced. My grandfather, an immigrant from Belfast, Ireland, was an engineer by trade, working at the American Chicken Factory in Astoria, Queens, NY. He worked well into his late 70s. He loved it —and by all accounts, continuing to work well past the age of retirement likely helped extend his life. He was a devout Catholic, very much involved in his church and local community. Every day he would spend his time helping those in need residing in the apartment building where he had lived for over 50 years. I think it would be best if I start from the beginning—even now it feels like yesterday.

Once upon a time, long ago, in the fall of 1987,I left my position as a Critical Care Nurse in the Surgical Cardiac Intensive Care Unit at Mount Sinai School of Medicine in NY to pursue a new career working as a Hematology/Oncology Clinical Research Nurse in the Department of Neoplastic Diseases at Mount Sinai, under the direction of Dr. James F. Holland and Lewis Dr. Silverman. Within the same month of beginning my new role, Dr. Silverman diagnosed my grandfather with MDS. At that point, I had been working as the Primary Research Nurse Coordinator on a new national investigatory trial of azacytidine (CALGB study #8421) for patients diagnosed with MDS. I was hoping my grandfather could be enrolled in this trial and receive this new treatment. Unfortunately, due to his underlying co-morbidities, he was not eligible. I was in shock, frustrated, and afraid of the unknown outcome and course predicted for my grandfather. Back then we did not have well-established morphologic classification systems for MDS, nor did we understand their implications for clinical management. In addition, we did not have defined NCCN Practice Guidelines for patients with MDS or the IPSS scoring system, and there were no effective treatments. As a hematology nurse I was frustrated that I could not help him.

For over a year and a half my grandfather endured monthly bone marrow aspirations and biopsies. At the end of the procedure he would say, “Thank you. I hope and pray that you can learn from my disease to help others”. His blood and bone marrow cells would be studied in Dr. Silverman’s lab along with other patients diagnosed with MDS. He encouraged us every day to persevere, work hard, and continue to support the efforts in the fight for a cure. Myelodysplastic disease robbed my grandfather of many productive years of life with his family and friends. My grandfather was a true believer in setting your mind on something and not giving up until it is accomplished. Because of this, he was able to motivate and encourage many others to persevere in the face of adversity or discouragement. This quality was what helped him the most as he neared the end of his own life. Dr. Silverman and I, along with our team, did persevere. Dr. Silverman served as the Principal Investigator and I served as the lead nurse-investigator on 2 additional National Cooperative Group trials on Azacytidine(CALGB# 8921 and 9221),which ultimately lead to its approval (Videha); the first FDA approved therapy for patients with MDS. It was a team effort! More progress has been made in the past 7 years than in the 30years since MDS was differentiated from the acute leukemias. As advances in technology and biology have converged, personalized cancer medicine has become possible. Now we can offer hope to not only improve the quality of life, but to also extend the lives for patients with MDS with effective treatments– those that are FDA approved and many new novel drugs being studied in combination.

My grandfather (Pepa), has always been, and will always be a huge part of my life. He taught me to never back away from challenge will continue to work everyday in the field of MDS and contribute to future advances in treatment. And so, I say to my grandfather (my loving Pepa) and to the many patients and families suffering with MDS—Thank you for enduring. Thank you for fighting. And thank you for giving me the hope to continue my dedication to improving the outcome and quality of life for patients, families and caregivers impacted with this chronic disease.