Resilience in the Face of Adversity: A Survivor's Journey

Meet 26 year old Mateo Coka, a film producer, director and writer who also happens to be a pediatric cancer survivor. Mateo’s story is nothing short of inspiring but even more importantly, his willingness to share his truth so openly serves as a call to action for us all.

When we first met Mateo, he generously opened up about his experience battling cancer as a child - sharing a story filled with resilience, unwavering faith, and the unshakable support of family. We were so moved by his depth and how forthcoming he was given such a difficult journey. Our exchange had Mateo delving deeper into the challenges he faced, the tireless support system that surrounded him, and his indomitable spirit that ultimately saw him realize a life beyond cancer. This pediatric cancer awareness month he will be celebrating 16 years cancer free. Thank you to Mateo for allowing us this window into his experience punctuated by remarkable strength that emerged from a young age in the face of enormous adversity.

C4KC: Mateo, you were three and a half years old when you were diagnosed with acute lymphocytic leukemia (ALL). You went thorough treatment and a relapse all before age seven and a half - What feelings, thoughts and / or memories from that time stand out for you?

MC: When I was five years old, I actually wondered to myself “what is my first memory?” I always recalled this memory of walking around our apartment during sunset as the first. The apartment was lit with powerful red and orange tones. I think it was a testament of how I felt as a kid, the underlying tone was peace. That peace came from two sources, from my faith and my family. For as long as I can remember, I always felt this truth in my heart that there was a God who was fighting for me and who loved me. That love was also personified through my family.

My mom protected me from my illness in many ways. She didn’t let me live my childhood with the knowledge of cancer and the sense of doom that comes with it. I actually never knew that I had cancer throughout my first two encounters with it. She would tell me that I was sick, like a cold with another name, and she explained that’s why I had to go to hospital so frequently.

My little sister, Domenica, was always by my side. She has always been my best friend. Even though I was a kid going in and out of the hospital unable to live a “normal” childhood, having her with me helped me feel like a regular kid. We did everything together. We would play games, swim in the pool, ride our bikes, do arts & crafts, watch TV and movies and more. Even though I wasn’t surrounded by a lot of other children, I still felt like a kid around Domenica. She never treated me like I was a sick kid. I’d realize later that my mom focused on enriching our time together through our shared activities.

 My brother Fonzy was always the coolest guy I knew. He’s seventeen years older than me and would visit us from time to time because he lived in Ecuador. Like Domenica, Fonzy also never treated me like a sick kid, he always just treated me like his little brother. He would constantly make me laugh and would always play with me and our sister. I remember fondly going to see the original Spider-Man movie with Fonzy. I got too scared so we left in the middle of the screening and headed to the arcade. Fonzy always understood me.

My dad, my grandmother, my cousins, aunts and uncles would also visit from Ecuador. Despite what I was going through, I still had a sense of family around me. I did always wonder why I didn’t have a life like the kids I saw on TV and movies, but I always saw it being my future one day. Even though I was a kid fighting cancer, I still had a childhood that I fondly reminisce about. That I credit to the peace that came to me from what I viewed as perfect love.

With that, I do remember all of the pain. My memories from when I was fighting cancer between those years are crystal clear. I could map out most of the hospital from memory. I remember always crying when my doctor drew an “X” on my back. I knew I was going to have a spinal tap and I was filled with fear. During that period, I was only given Benadryl before having my spinal taps. I remember having to be firmly held by nurses as the procedure happened. It is, without question, the most traumatizing pain I experienced as a child. Needles being injected into my mediport were one thing, but the intense, sharp, and burning pain from my spinal taps was worse.

Even though I suffered tremendous pain in the past, I am still fond of the past. I had joy being a kid. I was very loved. Even in the midst of pain, all I can remember is love.

C4KC: You had a third relapse at age ten and have said that time was the hardest. What do you attribute that to?

MC: I think what made it the hardest was that I now knew what death was and the true measure of pain that I was going to experience. I was self-aware. I knew that something was wrong. I didn’t know what cancer was by name yet, but I knew what I had to face again. After my mom eventually explained to me what leukemia and pediatric cancer were, the threat against my life became very real to me. My enemy now had a name. She explained to me that it was like I was in a war, a war against an enemy who was after my life. She told me that although I might feel like I was dying, to not believe it. It was then, especially, that I couldn’t give up. I understood that as long as I was alive, I could keep fighting and that I still had hope. Most importantly, I wasn’t fighting alone. I had my family, my team of doctors and nurses, and I had my God by my side. I also wanted to be like the heroes I saw on screen and played in my games. I wanted to be someone who never gave up, someone who saw the good in the bad, someone who was strong against the odds. I wanted to be like my hero at the time, Spider-Man. I never saw myself personally as a hero but I always wanted to strive to be one.

Also, one of the most frustrating things at the time was realizing that I only had one year of ‘freedom’. I only had one year of school and only one summer vacation before the cancer came back.

 I understood my family’s reaction even more as well. What stood out to me the most was my brother’s reaction to my relapse. When the doctors told my family that my cancer had returned, I looked at my brother Fonzy. He was by my side, breaking down. I could hear the devastation in their voices. I could see the despair in their faces. This was a moment that stood still in time for me. It felt endless, making me wonder if tomorrow would ever come.

But tomorrow did indeed arrive. That’s something we all focused on. That was something my family were all, by now, experienced in…trusting in God and fighting one day at a time.

C4KC: You mentioned your Doctor told you that you would lose your hair in this new round of treatment. Even though you had lost it before, how was this different for you as a 10 yr old?

MC: I remember feeling ashamed. I felt my third relapse happened so fast that when my doctor told me I would lose my hair, I’d totally blocked that as part of the process. I didn’t even say a word. I took the sheets from my hospital bed and hid under them. Looking back, I was trying to cover the shame I had felt before. I had already lost my hair twice and both times it was so hard, now a third time? I thought to myself, “I was only a ‘normal’ kid for one year. This isn’t fair. What did I do?”

C4KC: We discussed your steroid treatments and how they changed the look of your face and body. Tell us more about how that affected you in this time of your third relapse. Did you encounter other children or adults who made you feel different?

MC: Every time I took steroids my body would swell, especially my face. I was incredibly insecure about my appearance. Some of the steroids I took also gave me anxiety. I would describe it as feeling “guilty.” I would tell my family “I feel like something’s missing.” or “I feel like something bad is going to happen.” I reacted that way throughout my treatments and relapses. During my third relapse, I remember telling my mom that I looked like a monster and I refused to look at myself in a mirror.

Part of my treatment this time around was a transplant. After the transplant, when I was able to go to middle school, my insecurity increased. I was still very ‘puffy’ because of my steroid treatments. I hated everyone meeting me with a false impression of my appearance. I felt like I was wearing a mask and that no one had any idea of what the ‘real’ Mateo looked like. As I gradually got off my steroids, everyone complimented me for losing weight. They meant well, but their compliments weren’t entirely accurate. My swelling decreased as my steroid doses decreased. It was the illusion of losing weight.

My height was also affected because of my steroids. I didn’t grow at all during those three years in middle school. It was something that I had to seek therapy for. I struggled with my value and my height up until college. To be honest, I had forgotten the extent to which I struggled about it until our talk. I guess that kind of shows how far I’ve come in my healing. I’m very grateful.

C4KC: Tell us about the stem cell transplant you received at Duke Children’s. What you recall from that time?

MC: I experienced some intense rashes due to my transplant as the new stem cells were replacing my then current cells. I also received medicine that had a side effect of growing hair. I started growing hair on my cheeks and patches of hair around my head. I grew a unibrow and my eyelashes grew thicker (my sister Domenica would say she was very jealous of my eyelashes). I also became weaker than ever before with constant abdominal and lower back pain.

Looking back at my emotional state, it is very clear to me that I was depressed. I hated being stuck in my box of a room. My skin was so sensitive that bits of my skin would peel off with my IV dressings. It was so painful. It was the only moment in my treatment where I openly said that I hated my life. After I said that, I was full of regret. I knew it was valid to feel that way given the pain I had endured, but I was still alive. That was a gift. I felt the presence of God in that moment. He told me “I’m here.” I still had hope. As long as I was still breathing, as long as my heart was still beating, I had a fighting chance. This gift of life that I had, I knew I had to hold onto it tight. In moments when I wanted to give up, my family took care of me. They helped me stay together. They consoled me. They pushed me. They fed me. They played with me. They loved me. I celebrated my 11th birthday in that transplant unit. It wasn’t new for me to spend my birthday in a hospital. I would have loved to be back home, but the love of my mom, my sister, my dad, and my brother helped me forget that I was a patient. I was just a kid turning eleven and blowing out my candles.