Share Your MDS Story

My name is Aileen, and I am a first generation American. Growing up, I witnessed firsthand how hard my parents worked to provide opportunities and a better life for our family. Their sacrifices shaped who I am today.

When I was just 12 years old, my father was diagnosed with cancer for the first time. Hearing the word “cancer” at such a young age was terrifying. Watching my father, the man I always viewed as my hero and the strongest person in our family, battle Non Hodgkin’s lymphoma and endure chemotherapy was something that changed my life forever. Thankfully, my father went into remission, and seeing the compassion, care, and support our family received during that difficult time inspired me to pursue a career in healthcare.

I worked tirelessly and became the first person in my family to enter the healthcare field. I was the youngest student in my RN program, the youngest to graduate, and eventually the youngest nurse on my unit. I began my nursing career during the COVID 19 pandemic, a time filled with fear, uncertainty, and chaos throughout the world, especially within healthcare. I had the opportunity to start my career on an inpatient oncology unit, caring for patients and families much like my own had once been cared for. It was a full circle moment for me. Being able to provide compassion, empathy, and human connection to individuals during some of the most vulnerable moments of their lives became more than a job, it became my purpose.

My father remained in remission for 10 years until he was diagnosed with MDS, Myelodysplastic Syndrome. After managing his medications for two years, his condition suddenly worsened, and he began requiring more frequent chemotherapy and blood transfusions. Then one day, my father fainted and was rushed to the emergency room, where he was admitted into the ICU with a hemoglobin level of 3.

After countless blood transfusions, he became stable enough to be transferred closer to home. As doctors ran tests and performed biopsies, my father required daily transfusions just to maintain his blood levels. When the results came back, we learned that his bone marrow was 75% overtaken by leukemia. His medical team fought tirelessly to find treatment options, researching the latest medications, therapies, and even clinical trials, but unfortunately, there were none left that could save him. Due to his history of prior cancer, my father was not eligible for a bone marrow transplant.

I will never forget the moment his oncologist, who had become like family to us, walked into the room with tears in his eyes and told us there was nothing more they could do.

The hardest part was that my father was still fully conscious, independent, and mentally present. Knowing that once the blood transfusions stopped, it was only a matter of time was one of the most painful realities I have ever faced. Yet even in the face of death, my father remained stoic, brave, and accepting. As a daughter, watching someone you love prepare to leave this world while remaining so strong is a kind of heartbreak words can barely describe.

My father, Roberto, was a loving son, husband, and father. He was the glue that held our family together. I have never met someone as intelligent, hardworking, adventurous, and resilient as him. Not simply because he was my dad, but because he carried such a rare and beautiful perspective on life. No matter who you were, you always walked away from a conversation with him feeling inspired.

He belonged to a generation that lived wholeheartedly for family, values, and integrity. He was the fun uncle who spoiled you and encouraged you to enjoy life when your parents were strict. He had eyes full of compassion, the kind that made you feel safe enough to fall apart in front of him. He would sit quietly, listen without judgment, rub your back, and somehow make even your biggest problems feel smaller.

After losing my father, I quickly realized that MDS is not talked about nearly enough. Throughout my grief journey, I often felt alone, but I knew I could not possibly be the only person experiencing this kind of pain. I found comfort in opening these conversations and helping others feel less alone.

In honor of my father, I created my campaign, “Making Days Significant,” where I use my social media platform to spread awareness, educate others about MDS, and become a source of hope and light for individuals and families facing similar battles. One saying my father always lived by was, “Where there is life, there is hope,” and it is a phrase I carry in my heart every single day.

Through this campaign, I connected with the National MDS Foundation and had the honor of becoming a keynote speaker at their Move for MDS event in Tampa, Florida, where I shared my father’s story. The number of individuals who reached out afterward to share their own experiences was heart touching. It reminded me that vulnerability creates connection and that our stories have the power to heal others.

I continue to use my voice to shine a light on a disease that is often overlooked. Recently, I had the honor of being featured in Stroll Magazine, where I was able to highlight both the MDS Foundation and my father’s story.

Through tragedy, I wanted to create something meaningful, something beautiful that would continue my father’s legacy. I believe challenges are inevitable in life, but they do not define who we are. What defines us is how we rise from them, how we choose to love through pain, and how we use our experiences to create change in the lives of others.