Over 80% of childhood cancer patients survive at least 5 years, but surviving isn’t the end of the story. Did you know that up to 90% percent of childhood cancer survivors develop one or more chronic conditions? Many of the drugs used to treat childhood cancer are toxic and leave survivors with late effects. Childhood cancer survivors face a unique set of challenges far into adulthood, and sometimes forever. In honor of National Cancer Survivors Month, we feel grateful to be able to share Mateo’s cancer journey with you. Below, Mateo details his story from diagnosis, through many rounds of treatment, his feelings and fears, and miracles along the way, along with his advice for other families experiencing a childhood cancer diagnosis.
Mateo's Story
When I was three-and-a-half years old, I was diagnosed with Acute Lymphoblastic Leukemia. My cancer returned at the age of seven-and-a-half and ten years old. The third encounter was the hardest.
The moment my oncologist reminded me that I would lose my hair to chemo, I hid myself under my bed sheets. I was ashamed. I didn’t want to lose my hair again, not for a third time. Later on in my treatment, the steroids I was taking puffed up my body, especially my face. I told my mom I didn’t want to look at myself in the mirror. I believed the lie that I was less because of cancer. I am here to tell you this: you are more than your cancer. You are a champion. You are a survivor. You are a hero.
While the doctors initially thought my body had become too toxic for chemotherapy, miracles are possible. I entered remission and was sent to Duke Hospital to receive a Stem-Cell transplant.
On September 30, 2008, I received the transplant and my cancer was gone forever. The isolation unit served to protect me as the treatment left me with no immune system to fight any ailments. One day I went to the restroom and there was blood. I was diagnosed with an adenovirus, and our worst fears started to come true. My doctors explained that if we caught it early and if the virus wasn’t spread all over my system there would be a chance, the results came back, and it was everywhere. I was given a medication called Cidofovir that stopped further spread of the virus in my system. This medication was so toxic that my kidneys were in danger and I was at risk of acute renal failure. My doctors explained that there had only been two or three patients that survived this medication up to the fourth dose. All the odds were stacked up against me. I had nightmares. “Was this gonna be my last birthday?”
My mother used the analogy that my body was at war. She told me to pick up my sword and fight! While in isolation, I would walk miles in the hallways to pass the time. My pain was unbearable, my legs would throb in pain, but I had to fight! For breakfast, lunch, and dinner, my mom would make me a blended vegetable soup that would give me the nutrition and strength my failing body desperately needed. All I wanted was to be a kid. I wished for soda, chips, and sweets instead! Gradually, I received the first, second, and third dose of Cidofovir. Within nine months, I took thirteen doses of Cidofovir—it was a baffling miracle that I was still alive.
But the virus was still in my body, I had no immune system to fight back with, and the Cidofovir wasn’t going to cure anything. The amazing doctors at Duke Hospital presented my parents with a last resort option: an experimental transfusion of T-Cells to fight the virus on my behalf. It was genius, but it had never been done on children before at Duke Hospital. I would have been the first child to receive this experimental treatment. The risk would be that my body could reject the cells, but it was my only choice for survival.
My family and I prayed for victory. A couple days later, that victory came. My blood results came back and the virus was gone without a trace. My oncologist believes I was the first kid in the world to receive that treatment. Now, this treatment has been used to save so many lives.
On September 30, 2023, I will be celebrating fifteen years without cancer. I am so grateful to God, my family, and the amazing doctors and nurses who have helped me reach this far in my life. Now, at twenty-five years old, I am pursuing my dreams as an aspiring director, driven to equip others with strength, courage, and hope through the stories I share on screen.
I am currently writing and directing my very first animated short film titled “Unwavering.” It’s about the story of three kids facing childhood cancer. Their fear, depression, and anxiety are manifested into these nightmarish creatures that haunt them in their dreams. To strive forward they must envision and transform themselves as the heroes that their loved ones already perceive them as. When all hope is lost, what remains? The faith of a young child.
“I want you to remember who you are. I know you may look different, I know you may feel different, but you have and always will be a hero” is what I would tell my younger self. That little boy who had to face cancer three times and all the other obstacles along that journey is my hero. These are the same words I would share with anyone who’s fighting cancer right now. You are a hero."
