Childhood Cancer Warrior: Kennedy

As told by his mom, Christina 

Kennedy’s story did not start on the day he was born, his story started long before he became the warrior we all know today. Kennedy was the only embryo that made it through the first round of his IVF, his life was already planned with a purpose we did not yet understand.  As a mother, when I found out Kennedy was the only embryo, I knew God had great plans for him; but I did not think His plan was childhood brain cancer. When Kennedy was 9 month old, he was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT), a rare, aggressive and terminal tumor of the central nervous system;  typically found around the cerebellum and brain stem. On August 3, 2021 I walked lone with my son into Texas Children’s Hospital ER; that weekend he started having sudden vestibular issues and random vomiting which started a few weeks prior. As a mother, cancer doesn’t cross your mind when your child is vomiting but taking him to the emergency room to get looked at and have access to testing, it felt like the best answer. And the answer that day changed our life as a family of 4 in its entirety, the words “your son has a mass on his brain and needs emergency surgery to alleviate the fluid and pressure on his brainstem before he suffocates” will forever be itched into my memory. Kennedy had a craniotomy 3 days later, a near total resection and spent 17 days in the ICU before we were transferred to the neurology floor. Once Kennedy was discharged from neurology, he started inpatient chemotherapy on September 1, marking his cancer journey on the month of Childhood Cancer Awareness. Kennedy went through 2 rounds of low dose chemotherapy, 2 stem cell aphaeresis harvest rounds, 3 rounds of high dose chemotherapy with the Bone Marrow Transplant team and 28 rounds of focal proton radiation. Between chemotherapy, sepsis and every bacterial/fungal infection you can imagine, radiation was the easy part on his ever growing body; Kennedy fought like he knew nothing different. Kennedy allowed us to survive and gave our family strength, the courage and bravery of a lion. The strength of God and Kennedy allowed us to get through over 200 days inpatient. They say the journey of childhood cancer is a marathon, but I fully believe no matter where you are in the journey of cancer, it never ends. Kennedy has constant checkups with his oncologist every month, MRI scans every 3 months, as well as checkups with ophthalmology, audiology, ENT, facial therapy, plastic and general surgery all due to facial palsy of his 7th cranial nerve due to the surgery and location of his brain tumor. Kennedy is fully deaf in his left ear due to the residual tumor left in his auditory canal, so Kennedy will never fully be “cancer free”; we pray the tumor is dead/dormant from chemo and radiation. As Kennedy approaches his ONE year off treatment on April 26, 2023 at 2 ½ years old, I can’t help but celebrate all the obstacles Kennedy has overcome to feel and act like the average toddler, keeping us on our toes. Although Kennedy has been through so much in his short life, I know his purpose and perseverance is here to show everyone he meets, he’s beyond his terminal statistic.


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