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Inspirational Stories

Avery

ALK Positive Anaplastic Large T-Cell Lymphoma

When I was a senior in high school, my life changed forever. In my senior year, playing my last season of basketball and gearing up to play college softball that next fall, everything was looking up. I had great friends, and great family, not to mention that I had the best-looking curly hair there ever was. Back in September 2019, I noticed a knot in my right armpit. At the time, I was playing high school softball and was just moved to a new position. I thought the reason for my underarm pain had been from soreness, so I put it off until the season was over. In November, I then went to see an orthopedic doctor for a consultation. I had an MRI without contrast, with contrast, and finally, my mother and I had received a call with the results. My mom checked me out of school to go to my appointment. I was in the driver's seat while she was working and giving directions. I had no idea where we were going. She finally mentioned that we were going to see an orthopedic oncologist, and at that moment, my heart broke. I kept thinking to myself, “How would I get cancer at 17/18 years old?” As we walk into the office of the orthopedic oncologist, she tells me I need surgery to remove the lymph node under my right arm so they can run a test on it. I could not do a biopsy because it had pressed against my nerves. So many things had been rushing through my mind at the time. I kept thinking, “How could this be real?” In January of 2020, I finally had surgery to remove the lymph node. I waited a good month before deciding to have the surgery because I wanted to finish my basketball season first. After talking with my parents, we decided to do it as soon as possible. I was scared, terrified even, and had no idea how to cope with the thought of having cancer at 18 years old. After the lymph node removal surgery, my diagnosis came back, grey zone lymphoma (GZL). My doctor at the time explained the severity of the situation as he told me around 6% of all diagnosed patients get diagnosed with GZL. Immediately, I was devastated. My first questions to the doctor were, “Am I going to lose my hair?” and “Will I still be able to play college softball?” He immediately answered “yes.” He said I would lose my hair, but I would never be able to play college softball, and I needed to give up that dream now. He then proceeded to tell me, “We need to get started on chemo as soon as possible.” My parents demanded a second opinion as we were about to put me through six months of chemo, five days a week, followed by radiation to my right arm. The doctor told my parents that his radiologists were hardly ever wrong, and he did not believe my parents needed a second opinion. That is exactly what we needed, so we went to get one.

While my parents were scrambling to figure out a second opinion, I was getting poked and prodded, feeling as if I were just another science experiment. I had a bone marrow biopsy that fortunately came back clear. I then had an appointment with my fertility doctor to decide if I wanted to freeze my eggs. There was mention of taking a Lupron shot to pause my menstrual cycle, or I could simply do nothing and take my chances. While all this was going on, my doctor at the time did not want us to get second or third opinions, and we became extremely frustrated. Finally, my parents sent my scans to MD Anderson in Houston, Texas, and the oncologists just so happened to be at a conference in Boston about the misdiagnosis of GZL. We got the call in February 2020 that it was not GZL, and my official diagnosis was ALK-positive anaplastic large cell lymphoma (ALCL). This is stage 1 non-Hodgkin lymphoma (NHL) that was very treatable. My family and I were so happy. This was the best possible outcome that we had heard since my journey first started, and if it was not for my parents going with their guts, I would have put my body through more than it needed.

February was a huge month for me. I received my official diagnosis, a new oncologist, had my port placed, and got my first Lupron shot. The regimen for my type of lymphoma was six rounds of chemo every three weeks, followed by radiation to the affected area. My second oncologist was perfect. He was a dream come true. He understood that my goal was to finish treatments and get to feeling better so I could move on to college and play ball. He did everything in his power to make it happen. To keep my strength and stamina up, I met with a nutritionist. While going through the process before treatment, I kept thinking to myself, “Am I really an 18-year-old kid with cancer?” I kept trying to remain positive through it all, but it was very hard to see past the devastation. On February 28, I had my first chemotherapy treatment, and, boy, was I nervous. It consisted of three hours of chemotherapy, known as CHOP. As I was sitting in the cancer center about to receive treatment, I looked around, and there I was, during it all, the youngest patient in the room. I knew I was young, but being the youngest in the room made me feel more alone. My parents, my high school coach, and my soon-to-be college coach showed up for me and sat with me through my treatment. It was okay, everyone talked about how exhausted chemo would make me, and I needed to rest. Truthfully, I felt perfectly fine and was okay. I continued to play my last season of basketball throughout my first round of treatment and continued to play as my treatment went on. As I was about to undergo my second round of chemo, I was also about to play in the state tournament for basketball. The unthinkable began to happen, coronavirus struck and canceled everything. The last basketball season I was to ever play, and all the rules at the cancer center had changed. I could not have anyone at my appointments with me. I soon realized I had to conquer this myself. Going to treatments, doctors’ appointments, everything was all by myself, and no matter how much I wanted close support, I knew I could handle this on my own. The next thing I knew, I was going in for my second chemotherapy treatment by myself. I was there facetiming all my friends and family that I had by my side, trying to get through one of the toughest battles of my life. As I finished my second round, I got home, and it hit me. I felt like I had just gotten run over and beaten up. My body had hit extreme exhaustion, and I thought to myself, “How can I do these four more times?” I knew others had endured much worse than me, but I still could not fathom doing it over and over again, every three weeks. I knew I could do it.  All my life I have played sports and persevered through hard times. Although this was not comparable to a few suicides up and down the court or field, sports set me up to face everything head-on. Throughout my third and fourth treatments, it got harder and harder to keep myself in a positive mindset and in good health. After those two treatments, my amazing oncologist decided to wait three weeks and do a scan to see if the cancer was still in my lymphatic system. May 27, 2020, was the day of my scan. Listen here, scanxiety is real! There is nothing more terrifying in my opinion. I was so nervous, and I wanted all of it to be over. My body was in distress, and all I wanted was the ability to regain strength and be healthy before moving to college. After waiting on scan results, I received the news on June 5 that my results came back, and I was officially cancer-free. The feeling after receiving that news exceeds description. All the soreness, aches, hot flashes, and nausea, it was all for one goal, and I had finally achieved it. In August 2020, I moved into the dorms of my new college and started the next chapter of my life. I was beyond grateful. Even though coming back from cancer was not easy, my teammates and coaches understood and had my back through it all. I can now proudly say I am a college athlete, and I have overcome the biggest obstacle in my life. I beat cancer. Cancer is not easy or any walk in the park, but if I could go back and change myself to not having cancer, I would simply not. It made me into the young, empowering woman I am today. Cancer put things into perspective for me and made me realize that little things in life matter. Never take anything for granted. Enjoy the little moments with your family and friends, take everything in, accept everything for what it is, and attack it head-on.

Since then, I have been known as the girl with cancer. However, I do not let those things define me. I am more than a cancer patient. I am a daughter, sister, friend, and athlete. I take pride in being these things every day. I still struggle with the way I look, but I know things will never be the same, and there is beauty behind all of that! I am me, a new person with bigger and better goals. I absolutely love who I have become! My goal within all this is to educate and implement the opportunities for kids my age, athletes or non-athletes, that there is life after cancer! Your diagnosis does not define who you are, and you can write your story however you choose.

Avery