The story detailed below is an account written by Jordan. Jordan is a acinic cell carcinoma survivor and advocates for childhood cancer every chance she gets.
My mom noticed a golf ball sized lump in my neck. After a few months of doctors dismissing it, my mom finally got a biopsy approved. The provider said it came back with abnormal cells and I needed surgery but it was probably not cancer. After my biopsy was sent away for testing, it was confirmed that I had acinic cell carcinoma. At that point, I had another surgery to remove the rest of the cancer.
I had multiple surgeries and radiation to get rid of the cancer. Chemotherapy did not work on this type and I did not get to ring a bell.
Being told I had an “easy cancer” was hard to hear because I didn’t have chemo, or lose my hair, or lose a limb. I was thankful for all that. I still had my own unique issues. I had hard days of drainage tubes, radiation burns and vomiting. I didn’t want to eat, and even now, I have chronic health issues. The battle is often looked at over after treatment is done, but I have found that is not true.
Knowing that ACCO exists to help fight for childhood cancer, better research and treatment is amazing. Childhood cancer warriors deserve better treatment for long term thriving and not just surviving. Connecting families with local support gives me hope when I used to have none. I’m happy that ACCO and others are fighting for us when we often feel that childhood cancer is overlooked and forgotten. It gives me and other patients/their families a spark of hope and passion again to keep trying and keep fighting with others.
I now work at the same children’s hospital that I was treated at. It is often surreal thinking about a young me in those halls – lost and scared and in pain in a big new world of cancer – but today I am back there giving back to the people and place that helped me get through. While it saved me physically, the people or support groups/camps that helped me and my family in our darkest hour, helped save my spirit. Other kids who I connected with via camps or groups helped me feel like a kid again. Cancer stole my childhood to an extent, but community support gave me some back and helped revive hope and happiness in my soul again.
After everything, I am still fighting for myself and others. I hope to ease the burden and weight even just a little by letting them know they are not alone. I hope to continue to advocate for better medical and mental care, for better resources and research, and treatment improvements to help kids THRIVE and not just survive after it all.
My advice is, don’t be afraid to ask for second, third or sixth opinions! Research for yourself, ask others what they went through, each cancer and person is different but don’t be scared! Never let someone tell you there is a “good” kind of cancer, that is not a thing. What you feel is valid, you are not weak for crying, it’s OK to ask for help, you are NOT alone, and please – never ever lose hope, no matter what.
Read more stories here: https://www.acco.org/survivor-stories/