By Lynn A.
In honor of National Nurses Week, Lynn shares her courageous journey with Acute Myeloid Leukemia and how the nurses at Connecticut Children’s inspired her to reach for her dreams and become a nurse.
When I arrived at Connecticut Children’s Medical Center’s Emergency Room on May 25, 2012, I did not think that the next time I would leave the hospital would be 28 days later. I had been in the ER about a week earlier for chest pain which was diagnosed as heart burn. I had a CAT scan while in the ER. That night the biggest worry on my mind was my Western Civilization presentation the next morning. I came back on the 25th because my right arm, which had had an IV in it from the previous ER visit, had swelled to twice its size. My immobile arm crossed my stomach as if it were in a cast. I was told I had a blood clot in my arm and I would need to stay in the hospital for three days on the hematology floor. I was really disappointed that I had to spend the Memorial Day holiday weekend in the hospital. (It turned out that this would be the first of several holidays that I would spend in the hospital.) The blood clot formed when the fluid used during the CAT scan infiltrated my diseased bloodstream. As it was later explained to me, the combination of the two was like the perfect storm.
Just before midnight, as I was settling into bed, a group of staff came into my room, including oncologist Dr. Nathan Hagstrom. Dr. Hagstrom explained to my parents and me that my blood was diseased because I had Acute Myeloid Leukemia (AML). He then went on to explain that AML was an aggressive form of leukemia found in only 20% of pediatric leukemia cases and I would need to begin treatment right away. The thought of being completely healthy one moment to having no certainty in my future was indescribable. Suddenly my presentation for school seemed liked the smallest worry in the world. Being only fifteen years old my worry was about losing my hair. Soon I learned that losing my hair was also not an important issue anymore.
That night I had a spinal tap which included my first dosage of chemo. The next day I had a Double Hickman line put into my chest to receive medicine and to draw blood and my first chemo treatment via IV. I received four rounds of chemo at Connecticut Children’s before heading up to Boston to receive a bone marrow transplant from an anonymous donor found by the national bone marrow registry, Be the Match. Each round was one week of chemo followed by three weeks of waiting for my immune system to recover. During these weeks I stayed in one of the three rooms on the eighth floor known as “isolation” rooms. These rooms had two doors to enter and special filtered air to minimize my chances of getting an infection while my immune system was weak. Once my immune system dropped to a certain level, usually within the first few days, I was only allowed to leave the room for tests and scans.
You may wonder how I felt being in my isolation room for weeks at a time. There were days when I thought about my life before getting sick and I just wanted to hide under my blanket with all of the lights off. But on the days when I was feeling well I wanted to make the most of my situation. I was so lucky to have parents who stayed with me every night and family who visited almost every single day. Connecticut Children’s offered so many resources with every type of therapy one could imagine, from massage and pet therapy to music. All of the staff members, from the doctors to the cleaners, were always friendly and polite and I could tell wanted what was best for me. The nurses and patient care assistants saw me the most and I appreciated that they all took the time to get to know me. They treated me as a real person and not just as another patient. No matter how busy they were, they always took the time to talk and play games with me. I loved exchanging stories with my nurses and hearing why they chose to become a pediatric oncology nurse. After hearing their stories and seeing firsthand what nurses do, I knew from then on that I would want to pursue nursing in the future.
Three and a half years later that is exactly what I am doing. I am currently a sophomore nursing student at Quinnipiac University. One of the reasons I chose Quinnipiac was that two of my favorite nurses from Connecticut Children’s had graduated from there; I knew that the program must have done something right to produce such great nurses. Although I have yet to start my core nursing classes I am excited to see what the next two years bring me. I have my nurses from Connecticut Children’s to thank for showing me how exceptional nurses are…kind, knowledgeable and, most importantly, compassionate.
Since my successful bone marrow transplant in November 2012, followed by a year of recovery, I have been in good health and remain cancer free. A piece of advice I would give to a current patient would be that even though the situation feels like it will never end, every day you are one step closer.
Every drop that goes through your IV, every ounce of blood you take in, every bad cell that is killed, while it may not seem significant at the time, is getting you one step closer to the end of treatment.