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Inspirational Stories

Sara

chronic myelomonocytic leukemia (CMML)

In May 2019, I was surprised and delighted to find out that I was pregnant. Throughout the summer, I eagerly delved into extensive reading and research on pregnancy and the first-time mom experience. However, this period also brought about a challenging early pregnancy. I found myself short of breath after even short walks, relied on numerous naps, and surprisingly didn't experience intense pregnancy cravings. In fact, I wasn't gaining much weight. Upon sharing these concerns with my OB-GYN, she reassured me that breathlessness is a common aspect of carrying a growing baby, frequent naps are typical among pregnant women, and my limited weight gain was a fortunate characteristic likely to change towards the end of the pregnancy. At the end of September, my OB-GYN contacted me stating that due to my significantly low iron count, I needed to see a hematologist for some iron pills. At my appointment on October 2, my life completely changed when I received the diagnosis of chronic myelomonocytic leukemia (CMML-0). I learned that this blood cancer is in the bone marrow. The “0” signifies a lower-risk subtype which meant that my disease was in an early stage and fortunately carried a relatively lower risk of progression. This meant I did not need chemotherapy until after the pregnancy was over. What amazing news that was to me! However, for me, the word cancer was a death sentence. My father, who I adored, passed quickly of lung cancer. His father died of leukemia. My father also had two sisters who died of breast cancer. Although I was encouraged to stay positive, I couldn’t see a different outcome. The ensuing three months were a whirlwind of appointments with my OB-GYN, primatologist, and oncologist. In late December, six weeks before my baby was due, I underwent induction due to very high blood pressure, necessitating an earlier delivery. On Christmas Eve morning, my son Massimo came into the world, bringing immense joy to my favorite holiday. We chose the name Massimo because we sought a name that conveyed strength, and it means “the greatest,” a fitting description for him as he triumphed over every challenge my body faced. Massimo became my source of strength, fueling my determination to fight. In early February, the month Massimo was originally expected, I began chemotherapy, a treatment that continued until July 2020. Amidst this, the COVID-19 pandemic added another layer of fear. With limited information about the virus, no available vaccines, and the world grappling for basic supplies, Massimo and I took precautions, staying indoors to protect his developing immune system and my weakened one due to chemotherapy. The outside world seemed like a threat. Moreover, the effects of chemotherapy made it challenging for me to care for Massimo. Thankfully, my in-laws generously assisted for four days a week while the weekends allowed me precious moments with my growing son, serving as my inspiration to combat CMML. During the summer, I received the news of a donor match for my stem cell transplant, the crucial step to overcoming CMML. On September 11, my new life began with an incredible gift from a stranger. I was able to happily go home at the end of the month. However, by Halloween, an itchy rash signaled the onset of graft-versus-host disease (GVHD). While GVHD is typically a positive sign that the transplant is working, in my case, it escalated dangerously. My GVHD took a severe turn. After spending two nights in the hospital, my skin erupted with red rashes and boils, and my body swelled to an unimaginable extent. A last-minute decision from my amazing medical team to enroll me in a clinical trial proved to be an ACTUAL lifesaver. According to my team, without this trial, I might not have survived. I remained in the hospital until Thanksgiving, though I can only remember a handful of days due to the amount of medication and morphine I had received. December marked a significant awakening for me. Following the GVHD episode, my loss of appetite resulted in the wasting away of my muscles. I had to rediscover basic body movements such as walking up and down stairs and encountered several alarming falls while attempting to stand up from using the bathroom. It was a frightening, yet humbling experience, emphasizing how easily one can take for granted what was once routine. The worst part was how small my stomach shrunk. I didn’t want to eat but needed to so that my muscles could grow. It was a conundrum that I fought daily. As my one-year transplant anniversary approached, I began to sense a return to normalcy. With the help of multiple rounds of physical therapy, I improved my ability to use stairs and achieved better balance. To add to the joy, I received the news that I was now cancer-free. Today I celebrate three years of being cancer-free, eagerly anticipating the fourth. Each day serves as a poignant reminder of my incredible fortune. The support from my family and the dedicated teams at John Theurer Cancer Center, Christiana Hospital, and UPENN have been, and continue to be, nothing short of phenomenal. They not only provided me with an outcome that at one time seemed impossible given my family history but also reinforced the profound choice to fight. This choice, made for my son, my family, my friends, and most importantly, for myself, has become a testament to the power of resilience and determination.

Sara CMML