Inspirational Stories

My story begins when I was 11 years old, and I remember it being the summer after my sixth-grade year. I had just made the volleyball team and was so excited about that and the upcoming school year. I don't know if you remember middle school, but it was a bit of an awkward time, so I was looking forward to getting older, becoming surer of myself, and making more friends. Unfortunately, at some point during the summer, I started to feel fatigued. Nothing extreme at first, but something I remember is not being able to make it through volleyball practice without having to sit down while my team was able to continue. As the summer continued, I only became more exhausted, and soon this fatigue was paired with a sharp pain in my abdomen. I went to my pediatrician for a check-up, and she didn't find anything wrong, but she did tell me that I know my body better than anyone else can. So, if I think something is wrong, I should listen to my intuition, and at the time in my 11-year-old head, I just knew something wasn't right. As you can imagine, I continued to deteriorate to the point where my abdominal pain was so intense, I couldn't eat.  I lost around 40 pounds during this time, and with my stature, I was very frail at only 85 pounds. I was so weak I had to crawl on the floor to get around my house. Seeing this, my parents finally took me to the emergency room, and after hours of waiting and a few tests, they came back and told me I had anaplastic large cell lymphoma (ALCL). And that sharp pain in my abdomen was the cancer growing in my spleen.

As shocking as this news was, we had to begin treatment immediately. I had a port placed and was in the hospital for about a month until I was strong enough to go home. This was an incredibly hard time for me considering how young I was, but I made it through. After I had regained the strength that I had before being diagnosed, I decided I wanted to get involved with The Leukemia & Lymphoma Society (LLS) to advocate for childhood cancer, and that's exactly what I did. I volunteered with them and shared my story with hundreds of people. I was an Honored Hero, so I would do speaking engagements just like this and encourage people to give. I encouraged other survivors by showing them there is hope for healing, and I led fundraising efforts at my high school. I was even nominated as Young Woman of the Year for my involvement with the organization at the time.  I did this until it was time for me to go off to college.

So, at this point, I am seven years into my remission. I go to college and finish up my first year, and again I am so excited about the future and my new freedom as a student away from home. But yet again, I started to notice a few things that weren't quite right. First, it was a few swollen lymph nodes, which I’ll be honest scared me. I kept an eye on them and went to the doctor for a CT scan. They saw nothing. Things got worse. I very gradually became fatigued and was having trouble moving my arm. I went to my pediatric oncologist where over the next few months they tried a series of antibiotics and lymph node biopsies. They couldn't find what was wrong, and nothing they did made it any better. Then I developed a really aggressive skin rash and intense pain in my arm that made it even more difficult to move freely. My last effort was to check into the hospital and receive triple antibiotics to try to fight whatever mystery illness I had, but this did not work. They did one final biopsy, and that's when they found the cancer. I have no idea why or how it wasn't seen before, but my cancer from seven years ago had relapsed. It turns out that the cancer was attaching to tendons in my arm which is why I was having pain and mobility issues. And the rash on my skin was the cancer breaching the surface. I was once again torn away from normalcy, away from my education and the friends who I had just started to make. And I had to battle this cancer once again. I ended up transferring hospitals to somewhere where I would be treated as an adult medically rather than a child. This was a difficult transition considering I had known the pediatric staff for most of my life. And for the fact that even though I was 19, I still felt like a kid. And it was hard to balance what I wanted with what my parents and doctors wanted. For example, my mom wanted me to get my eggs frozen to preserve my fertility, but that was overwhelming to 19-year-old me. But these are the things you have to think about when diagnosed with cancer even though it may be uncomfortable. And there were certain surgeries my doctors wanted to do that my parents did not want, and it came down to me to decide. And sometimes my decision did cause conflict with the people around me. But I made it through all of this, and I had an amazing and loving support system through it all.

Here I am today, now four years into remission and doing better than ever. And what better way to use this, quite frankly, depressing and difficult time in my life than to use it to build awareness and maybe encourage others to keep trying? I am so glad that I was able to reconnect with LLS, and now I have another platform to share my story. Every time I prepare to speak about my cancer, it leads me to revisit a part of my past that is so significant, but I don't always realize how much it changed me. It feels therapeutic to reflect on my journey with cancer and remember everything I went through. If you take anything away from what I’ve said here today, it's that cancer does not have to be the end. My life may have paused or slowed down when I had cancer, but it did not stop me from growing. There is hope for healing, and support from organizations like LLS is just one source of that hope for many patients and survivors.