Lexi
This is the story of Lexi:
Candlelighters were some of the only people I would let in my hospital room,” remembers 31-year-old cancer survivor Lexi.
My cancer journey started in 2005, when I was just 12 years old. I began having back pain in October of that year. I was an active kid and thought I had pulled a muscle. My parents took me to multiple doctors who dismissed their concerns and gave me pain relievers, but by January the pain was debilitating. Then, my legs started to go tingly and numb. On January 20th I was unable to walk when I woke up, I tried to get out of bed and fell to the floor. My parents rushed me to the ER at Sunrise Hospital where I was finally given a CT scan. That’s when doctors found there was a tumor in my spine, pressing on my spinal cord which caused the paralysis. They said if I had waited much longer, just hours even, the paralysis would have gone into my lungs, and I would have stopped breathing. I probably wouldn’t have made it. Later, we learned that the tumor was a type of cancer called Ewing’s Sarcoma.
Soon after my diagnosis, I met Dr. Jonathan Bernstein. I had never met a young person with cancer at that point, so I was really uninformed about everything. I immediately associated it with death and assumed I was going to die. Dr. Bernstein and nurse Catalina Hosmer helped me to process in that moment. They told me it was only stage 1 cancer and that it was treatable. Because of where the tumor was, it caused the alarming symptoms I experienced and was found quickly, so my prognosis was good.
From that moment on, I believed their words. I knew I was going to live through this. I had 14 rounds of chemo and radiation therapy that stretched a little over a year. I had this little pocket calendar with me that I could look at and track my days of treatment. The tumor was gone after the first round of chemo, but the continued chemo treatments were extremely rough for me. I had severe side effects and was bed bound pretty much for the whole year. Chemo dehumanizes you, physically and mentally. I was angry. I would think, ‘Why me?’ Then I got to the point where I thought, ‘I fought so hard for my life. I’m not going to live this way and let it define me.’
Sue Waltermeyer was one of the first people I met with from Candlelighters. She was there at my bedside for my very first round of chemo. When the drugs started and I began to get sick, she helped me with visualization and mindfulness. Danielle Munao would often come and bring me things to do throughout my long hospital stays. One of the things that helped me the most was the peer connections I made through Candlelighters. At first, I felt alone in my diagnosis. Then I met another young survivor, Aurora Roach. She came to my hospital room with Candlelighters and talked to me about how she had made it through treatment and how her hair was growing back. Once I was well enough to go to camp and meet a whole bunch of kids like me, and I knew I was on my way to healing. Helping me and my family to not feel alone and connecting us with other families who have gone through this was everything for us. If you haven’t gone through it, it’s hard to grasp. Feeling safe during treatment, that anything we needed financially or emotionally would be taken care of, helped us feel more secure and supported throughout this difficult time in our lives. It gave us the confidence we needed to push forward.
Today, I’m 18 years cancer free. I’m happily married, and we have two beautiful little girls: Phoenix Jude who is 4 years old and Siouxsie Ann who is 1. I have reached a full circle moment in my story, as last year I began contracting with Candlelighters as a clinical professional counselor, providing mental health services to their current clients. Each year, I look forward to being a counselor at Camp Firefly and this year stepped into a new role as the camp behavioral specialist. I am so thankful to everyone at Candlelighters and my medical team for helping me get to where I am today.
