In the fall of 2016, I started my senior year of high school. Just a couple weeks into the school year, I noticed very unusual symptoms. For example, I got unbearably hot while working at a grocery store and had to take my breaks in the walk in freezers to cool down. My parents told me I had to go to the doctor, but being 17 and having a ton of homework, I told them I couldn’t. After a few days of postponing going to see a doctor, I couldn’t put it off any longer because nothing was getting better. It was then that the journey of having PH+ ALL (acute lymphoblastic leukemia), a rarer form of leukemia with an atypical chromosome mutation, started. I actually was officially diagnosed on the night of September 21st so I can NEVER forget the day that is so remembered because of the band Earth, Wind and Fire! I quickly had to start treatment and was pulled from mainstream school. I finished high school online, took a gap year, and then started college majoring in physics in the fall of 2018 all while fighting cancer. There were many bumps in the road, I would often get seriously sick at bad times like finals weeks while I was in college. I remember things like common colds turned into pneumonia and collapsed lungs. It was hard to keep up with my peers during this time. My treatment consisted of many ups and downs. For example, I had to receive 62 blood transfusions and 69 platelets transfusions in the three years I was in active cancer treatment. My doctors mentioned I set a record of most blood product transfusions “by a long shot” in their words. The large amount of blood product transfusions I received resulted in hemochromatosis which basically means there is much more iron in my liver than normal. Since I ended treatment in August of 2019, I have been getting phlebotomy treatments once a month to lower the iron levels in my body. It was the most recent appointment at the beginning of June this year that I found out I relapsed. I am currently 24 and have recently graduated college in December 2022. Just a few days before my diagnosis, I started a job as a STEM educator, specifically for robotics at a local museum. Because of my health status, I am on a current leave of absence from my job and am back in active cancer treatment.
Since I am in relapse, I am no longer a candidate for receiving just chemotherapy like my first treatment.Tests showed that I had leukemia in my spinal fluid, which had not occurred in my first treatment. I have been receiving chemotherapy orally, through an IV and in my spinal fluid. Luckily, even in just a short amount of time, my counts have been doing really well and my spinal fluid is clear. My doctors are hopeful that everything continues to go up from here. As of right now, I am preparing to undergo CAR T-Cell therapy. I didn’t even know about this treatment until recently, but it is very promising. My T-Cells in my body were collected successfully and are being engineered to be more adept at fighting the leukemia in my body. In the next couple of weeks, I will receive the transfusion of my stronger T-cells. If it is not successful, I will prepare to receive a bone marrow transplant. People in my family and some of my friends have gotten tested to see if they are a match for potential transplant which I am grateful for in addition to the hospital staff searching the bone marrow registry as a precaution. Right now, I am managing well at home surrounded by my support system. I am nervous to start this treatment because everything I have done so far has been pretty standard and I went through the exact same thing years ago. However, CAR T-cell therapy is new to me so it feels like venturing off into a great unknown. Luckily, my medical team is amazing and I have trust that this will go well.
Alex’s LifeList:
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VIP Trip to Universal Studios Hollywood
