When you travel through life you meet special souls along the way. One example for me are Gavin and his family. I met Gavin and his mom, Nicole, in a Target parking lot when Nicole was my daughter’s math teacher. Meeting Gavin was uplifting. He wanted to know who we were and was genuinely interested in meeting us. As I have gotten to know Gavin I have seen an incredible young boy who, regardless of his circumstances, always takes the time to be present with those around him. When hospitalized, he would take the time to ask the person serving him breakfast who they were and how they were doing! What their names were. I hope I can be like Gavin. Never too busy or distracted to see those God places in my path. Nicole is very focused and inspiring. Her strengths leave me in awe.
As I planned my daughter’s 7th birthday party, I worried about the details. Will there be enough food? Will the decorations look as I had imagined? All of this planning had me busy and naïve to what was happening inside of my 5 year old’s brain. If only I knew, I would have been driving him to the ER, not to Dairy Queen to order a cake. In life, we plan for what we know- what we assume- will happen next. We worry about things that, in the end, don’t matter. As I tucked my three healthy children in that Good Friday night, I didn’t know it would all change tomorrow. I fell asleep with my plan for life that was never mine in the first place.
Gavin’s eyes had been bothering him for a few days. We thought it was allergies. Until my aunt, a pediatrician looked at them at the party. In the chaos, her face grew concerned as he tried to move his eyes side to side. She calmly explained that this could be serious and that we should go to Children’s hospital. As we left the party, leaving behind our other children and our life as we knew it, I was terrified. Within a few hours, we were told that our sweet boy had a mass in the middle of his brain. That he would need emergency brain surgery. Some of my first words once I understood what was being said to me were “God, no. Please God help us.” I dropped to my knees, sobbing and prayed he would be okay. After three brain surgeries, eight days later we were sent home with a plan. A plan that included surgery to install a chest port and g tube, chemotherapy, more surgery down the road, and radiation. A plan that we didn’t get to complete because the tumor began growing rapidly in his precious head. Two months after diagnosis, a mass the size of a peach was taking over his brain.
Through all Gavin endured, he began talking about God. He told us that in the hospital, God came to him and told him to be strong and brave. He explained how bright God was and how calm he felt when he saw Him. We held onto this as we met with his doctors to talk about options. We didn’t have a lot of time. Gavin’s brainstem was being flattened like a pancake and he was showing signs of progression daily. I followed Gavin’s lead of faith, and we stopped planning. We started to walk a journey of blind faith, as Gavin had craniotomy after craniotomy just to stay alive. We held onto the words-be strong and brave-as we searched for a drug that would stop the tumor from growing. Looking back, I can see how my strength in connectedness helped me get through the hard days. Even if it was difficult today, there is some purpose for all of this, and we are just strands in the intricate web of life. Gavin’s experience with God only strengthened this way of thinking about life. For some reason-even if I did not know why-we had to be strong and brave for something greater than we knew.
Months of hospital stays and complications led us to hard choices. Gavin’s doctors gave him at most, a few months to live. I will never forget how crushing those words were to my soul. As I sat in silence, tears running down my face, I told the surgeon we are not ready to give up. I told him I found a clinical trial medicine and were going to apply for compassionate use. I begged him to fight with us and search for neurosurgical technology. I had been researching new treatments for months, connecting trials and literature and engulfing myself in medical journals. My strengths-Strategic-Ideation-Achiever, led me to find a targeted therapy drug being used on adult patients with Gavin’s same tumor. Here I was, with the most important problem to solve in my life, and I was able to use the strengths God instilled in me to find something that may save Gavin. His surgeon agreed to keep fighting with us, and his oncologist helped us through the process of applying for compassionate use.
These were the darkest days of my entire life. I would cry near Gavin’s bed after he fell asleep, holding his hand and begging he survives. What I kept feeling though, was that, now more than ever before, I needed to fight hard. I could not sit back and wait for a no from a pharmaceutical company. I felt a push-from instinct, or God- to push now or we would lose him. I spread the word, asking for support, and we asked for a drug that had never before been used in children, because it was our only hope. I was prepared to show up on Pfizer’s doorstep if they said no. I deeply felt it was the only thing that would save my child.
Just weeks after the news we ran out of options, Gavin was granted compassionate use and Dr. Petronio found a laser he thought could treat the tumor. Instead of planning for hospice care, we were taking our child home to recover and prepare for more fuel to fight his tumor, which he named Joe Bully. Within a few months, Gavin was taking a medicine that stopped the tumor, and we were planning laser treatments. He celebrated his 7th birthday, with a chance at a future. Four years later, Gavin is in remission. He’s a ten-year-old boy, with scars and reminders- but with a fighters spirit. I think his strengths also fall into the same categories as mine. He always has showed this resilience against every problem. He refused to give up, and always found a way around what he faced. His ability to feel that we are all here for a purpose, and that God is with us even on the hard days, led to his cure. He is here four years after he was told he had months, and continues to make history and beat odds. His faith brought us here, and showed us that our plan is not His plan. Life for us is taken day by day. Not because it has to be, like it once was, but because we know the gift of time. We face every adversity knowing we are just a strand in God’s plan, and feel that no matter what, He will guide us along the way.