Thanks for Changing Me

by Alyssa GreenwellDecember 3, 2021View more posts from Alyssa Greenwell

“Code Blue, ninth floor, room 20.”

Those are words I never heard in the hospital, because I was in room 20 in cardiac arrest. It is always terrifying hearing color codes being called on the PA system, but a Code Blue makes your heart sink. You know someone could be potentially taking their last breaths on this earth. It really makes you think about what life is and how fast things can change. In the blink of an eye, everything can come crashing down and change forever. This is my story on how my life changed forever.

It was the Summer of 2015 when I began feeling sick. I would be super nauseous all day and couldn’t eat much. I had lost a ton of weight, and I began to look like a skeleton. Eventually, I went to my pediatrician to get checked out. Bloodwork was the first step to solving my very complicated puzzle. The tests revealed my calcium levels were extremely high. Quickly, I was sent to St. Louis Children’s Hospital to see an endocrinologist. Hopes were I just had an issue with my parathyroid, but that was not the issue. A couple other things were considered from endocrine standpoint until I was sent to rheumatology. After more testing and scans, still nothing could explain my high calcium levels. Soon I ended up staying in the hospital for more extensive testing. I saw specialist after specialist, until eventually my rheumatologist found a hard spot on my left calf. That was the only abnormality there was. With an MRI they found pockets of inflamed granulomas. After a biopsy, I was diagnosed with sarcoidosis, an autoimmune disease. I started treatment for that, but nothing truly seemed to control things. Something was always off for two years while being treated for sarcoidosis. Nothing ever kept the symptoms at bay. I went through steroids and medicine after medicine until things hit a tipping point. I was itching my skin raw, I couldn’t sleep, and I was so fatigued. No one could figure me out. I was considered a mystery. At the time I was a senior in high school and was just trying to make it to graduation. I missed a lot of school that year. I was depressed and felt out of place. I did not know what was wrong with me. I felt like I may never get a straight answer. It was beyond frustrating.

Towards the end of my senior year, I ended up back in the hospital once again. I could not take the itching and fatigue anymore. I earned another week full of testing, poking, and prodding. At the time I had a little bit of nagging pain in my back, but I didn’t think much of it. After a CT scan, a mass showed up in my back. The mass was compressing my spinal cord. I was told I would need to get emergency neurosurgery right away to take the pressure off my spinal cord. Without surgery I could become paralyzed if the mass got any worse. It was such a scary thing to hear. Luckily, I had some of the best surgeons for the risky five-hour procedure. Recovering from that surgery was the hardest thing I had ever been through. It was extremely painful. The worst part was being told that I could possibly have lymphoma. I was mortified by the thought of having cancer. Eventually, the biopsy results came back as juvenile xanthrogranuloma, a histiocytosis disease. This disease is sort of like cancer, but not. I got a port and started chemo. I began having weekly infusions of vinblastine and felt better immediately. Scans got better, but that was just another piece of this complicated puzzle.

It was now July 11th, 2017. I was excited to see a concert that night. For my high school graduation present, I was going to meet my favorite band, Shinedown. I felt awful that day, but I was not going to miss that concert. I could barely stay standing for the meet-up. I was weak and fragile. The concert was amazing, but two days later I was in the hospital shivering uncontrollably with a fever of 105. Instead of rocking out, I was stuck in a hospital bed hooked to tubes trying to figure out what was going on this time. I was being pumped with all kinds of medicine to manage all the symptoms of the prevailing lymphoma. Soon, an enlarged lymph node was found and biopsied. This time the lymph node was sent to the National Institute of Health (NIH). The results came back, and I was diagnosed with Anaplastic Large Cell Lymphoma ALK-Negative. Treatment started immediately, as I was borderline between Stage III and IV. I had my port, but I needed more vascular access. They decided to place a PICC line at the bedside. I remember the nurses pushing the relaxation medicine into my port and the soothing sounds of the relaxation channel on in the background. There were pictures of animals passing on the TV as my eyes closed. What I thought was just falling asleep though, was something much worse.

I woke up dazed and confused a couple days later. Why was I in a different room? What was all this stuff attached to me? I soon realized I was in the PICU, but I didn’t know why. What happened? I knew something serious happened because that’s the only way you end up in the PICU. Soon I was told by my mom what had happened. Because of all the different medicines they were using to control my symptoms, I went into ventricular fibrillation. My heart was out of whack because all the medicines prolonged my QT-Interval. I had coded. The doctors performed CPR for two minutes before they had to shock my heart back into rhythm. I was lucky and am so grateful for all the healthcare heroes who were able to save me. Now though, I would have to begin a slow recovery.

Recovering from what was deemed “The Event” was hard. I could barely do normal, everyday tasks. Simple things like walking or even just getting to the side of my bed felt almost impossible. I felt like a baby. Everything had to be done for me. Thankfully throughout recovery I had a great support system. I had my mom, dad, and stepdad there for me the whole time. Every day, I had someone there for me. Even some of my friends and a teacher from elementary school came to see me. It was amazing to see them and have their support, even after not seeing some of them for a while. It helped give me strength and motivation to do the therapy to get out of the PICU. Soon, I was taking baby steps, like sitting on the edge of my bed. Then, sitting on the edge of my bed turned into sitting in a wheelchair to eat my favorite hospital meal, a chicken quesadilla. Slowly but surely, I began to regain my strength. One thing I vividly remember, was doing occupational therapy with a knitting loom. I was trying to make a hat, but I could not get the string to stay on the loom. I remember being frustrated because I couldn’t finish a project I started, and I do not get discouraged easily. Each time I wrapped the yarn around a peg, it would slip off. Struggling with a simple project for kids was one of the big things I remember for some reason. It seems silly now, but it was frustrating to not be able to do something deemed “simple.” After a while though, with the help of physical therapy and occupational therapy, I was on my feet and walking again. I was one step closer to going home.

I had soon graduated to the Cardiac ICU, which was not much better than the normal PICU, but I was closer to going home. However, I would have to adapt to life with a new snazzy device called the Life Vest. The Life Vest is basically a bra that can defibrillate you back to life. It also has a monitor attached to it that weighs about as much as a brick. I had to wear this all day every day.  This life-saving device was one of my biggest enemies recovering from my first chemo regime. I already didn’t feel good, and on top of that I had to wear this torture trap for 11 months. Normally when you have a Life Vest you only wear it for about three months until you get a permanent defibrillator implanted, however, since I had a compromised immune system, doctors didn’t want to increase infection risk with surgery.

By the time I was able to get a permanent defibrillator installed in my side, I knew I was relapsing. The night sweats, swelling, and pain were coming back. No one at my home hospital in St. Louis knew what to do. I was stuck in another rut. I had to make a decision and fast. I knew if I kept waiting around, I would run out of time. I am fortunate that my dad lives near Philadelphia and that Children’s Hospital in Philadelphia (CHOP) has one of the best pediatric oncology programs in the country. I made the decision to leave all familiarity to go find lifesaving treatment on the East Coast. I met with the oncologist at CHOP and they looked at all the pathology and determined I had indeed relapsed, and my best and only options were clinical trials. I was soon referred to two different oncologists who were specialists in my specific type of lymphoma. One was at The Hospital of the University of Pennsylvania (HUP) and one was at Memorial Sloan Kettering (MSK) in New York City. Soon began the process of trying different clinical trials to reach remission with the goal to reach an allogenic stem cell transplant.

Trials began, and soon I was back on the road to recovery. Going through trials was interesting. It wasn’t without its setbacks, but nothing worth it in life is ever easy to achieve. Each trial had an amount of success, but I just kept relapsing. When I felt good though, I was able to accomplish and see a lot. I was able to explore so much of the East Coast while going through the various treatments. Without cancer, I don’t think I would have been able to experience most of the things I got to do, and for that I am grateful. From showing my family around Philadelphia, to days spent in New York City, to beach days at the Jersey Shore, it was all so fun and freeing. I was getting a taste of a life I never thought I would have a chance to experience after my cardiac event. Eventually, after victories and defeats, I was finally told I had reached complete remission. After two years and five different treatment plans, I had finally heard those sweet words. The next step was stem cell transplant.

For transplant, I had to decide where I wanted to have it done. I made the decision to have my transplant at MSK. It would be difficult logistically, but I knew I had my family’s support. This meant for the first 100 days post-transplant I would be living in the Big Apple. Luckily, my mom was able to stay with me to be my caregiver, and we were able to get a room in the American Cancer Society Hope Lodge. At Hope Lodge I got to meet people from all over the country, and even the world. It was an amazing experience. I have met a ton of people during these past three years, and I am so thankful for every person I have encountered, but our group from the eighth floor at Hope Lodge was special. One of the first nights we were there after getting discharged from the hospital, we all gathered to play cards. We had a blast. It is in these special moments when everyone is smiling and laughing that you see how the simple things bring such joy. We were all there under the same circumstances, but we were all able to find joy in the little things, like a card game or bingo. During bingo one night, our floor was on a roll. A couple of us won some gift certificates to Hooters since they were the hosts of the bingo night and dinner. With those gift cards, we were able to have a chicken wing party in our kitchen on our floor. We all forgot about why we were there for that night with the party. It was just a time to have fun with friends. Things can be hard and unfair, but if you surround yourself with the right people, you will always make it to the next phase.

Now I am at the next phase, and what will be my next endeavor? I made it through transplant, with a few bumps of course, but that is to be expected.  January 29th, 2021 will be my first birthday since transplant. It will be considered my “rebirth.” I think these past three years have already been a rebirth, though. I have finally discovered my voice and purpose in life. I realized that all the petty problems I thought I had in high school were really nothing. I realized how lucky I am to still be here to tell my story. My story makes me who I am, and to be able to tell it and maybe make an impact on someone is incredible. Through all the hardships I was able to find ways to smile. I was able to explore and do new things in new places. I guess this is almost a thanks to cancer. A thank you for opening my eyes. Thank you for my new “cancer family” I have. Thank you for the journey of a lifetime. It will never be over, but I am ready for the ride it will bring. I found out I am a strong woman who can make it through so much more now.

This piece originally ran in the March 2021 issue of the Elephants and Tea magazine. Click here to read all of our issues!

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