A Tribe of Courageous Warriors
May 31, 2018, After weeks of headaches, random vomiting, doctor visits and calls to their office, my son’s headache was severe and one of his eyes began to cross. The pediatrician sent us for an MRI. They found a mass in his brain and encephalitis that was at a critical stage - his life was in danger. The doctors began scrambling to figure out the best course of action, they ultimately gave us two options, one of which being St. Jude Children’s Research Hospital. We knew in our hearts it was the right option for us, and the very next morning, my son and I were on a private jet flying to Memphis to begin the fight for his life. My husband and teen daughter drove to meet up with us there. He was placed in the ICU where they worked to reduce the swelling enough to operate. A few days later, I kissed my little guy as they wheeled him in for brain surgery. After eight long hours of waiting, the neurosurgeon let us know he was in recovery. He had removed the entire tumor, but only time would tell the extent of brain damage he may have from the ordeal. They warned us he might not be able to speak or walk upon awakening, and in some cases, children lose those functions permanently. We waited and prayed for the best.
Nate awoke from surgery very angry and talking. WIN! The best sound I ever heard was him grumpy and yelling for people to leave him alone. Walking took some time and therapy, but after a few weeks, he was up and around, wobbly and off-balance, but walking.
The next step was to meet with the St. Jude Neuro Oncologist for test results, hoping for a benign tumor. The result: it was cancer. Specifically, medulloblastoma with a genetic amplification that made it extremely aggressive. They recommended the most intense radiation protocol to the brain and spine that a child can withstand, followed by seven rounds of harsh chemotherapy treatments. At that moment, we realized Nate and I were not going home for a while, as we walked into a big battle. We could be crushed by the weight of our situation or we could rise and fight. We dug in our heels with faith and determination that cancer would not win. We became warriors that day.
Within a few weeks of starting radiation, my son lost his hair.
Around that same time, all the other side effects began as well, nausea, vomiting, weight loss, and extreme fatigue. It was heartbreaking to see him go through it, but he fought on, rarely even complaining. We spent our days at the hospital for treatments, physical therapies, health monitoring, school tutoring, and daily life. We lived in an apartment building near the hospital where they housed us and other patients. Our neighbors became our family, all of us supporting each other and warring with our kids. This was such an unexpected blessing, one we are so extremely grateful for to this day.
We developed an extremely close bond with our neighbors across the hall. The boy, B, was a year younger than Nate, with the same cancer diagnosis and protocol. Those two became brothers. We spent much of our free time with them, playing video games, going to dinner, playing baseball, riding scooters, and just being together. I love B’s mama like she is my own sister. It’s a beautiful bond that can’t be broken no matter what. Even death can’t stop our love for our St. Jude family, as we found out on May 29, 2019, when B passed away after battling a relapse. We were heartbroken, but Nate stayed strong even in his grief. He told me one morning that if he died, it would be ok because he would be in heaven with B. To hear those words spoken from his mouth broke my heart and made me so proud all in the same moment. I told him with God’s help we were going to do everything in our power to make sure that didn’t happen.
I so admire my little warrior’s faith and bravery.
Nate finished treatment last April. The final MRIs and spinal taps were clear and he was declared NED (no evidence of disease). After almost a year of being away, we were finally able to go home. It was time to start the next phase of healing. His physical body had to regain strength and recover from the ravages of treatment. Our minds and emotions had to heal from the trauma and losses we had experienced because of cancer.
The battle is not completely over for us. We go back to St. Jude every few months for scans and spinal taps to make sure the cancer has not returned. In the meantime, Nate is doing very well, gaining weight and strength by the day. He is thrilled to be home and in a normal routine, and especially happy to be back in school. His balance is greatly improved, he can participate in most normal activities. His hair has not returned yet, and the doctors tell us it might not regrow due to the intense radiotherapy, but we pray it will.
We plan to stay the course and keep moving forward until he reaches the five-year mark at which point, he will be considered “cured”. As we walk this journey out, I will wear my Tiny Tags necklace in memory of B, as a reminder of how far we’ve come, and as a symbol of faith for how far we will still have yet to go. It will remind me every day that we belong to a tribe of courageous Warriors.