My name is Rhodes and I am 23 years old. For several months I had been experiencing severe headaches and dizziness when getting out of bed in the morning. They only lasted a few minutes and then I was on my way to work. Then I began to notice that my left eye and the left side of my mouth drooped. I went to the dentist thinking that I had an infected tooth to no avail. I took the path of ‘it will go away in due time’ but then the drooping became noticeable to my family. I was then seen by a neurologist who ordered a brain MRI. From that moment on, my life seemed to spiral out of control.
On August 8, 2020, as a young adult, I was admitted to the hospital and on August 12th I had an MRI-guided biopsy for a brain tumor. A few days later, I was told that I have a stage III/IV diffuse midline brainstem glioma. The brain stem controls breathing, swallowing, and heart rate so this tumor was not resectable or curable. My recommended treatment was six weeks of radiation and immunotherapy infusions to control the tumor growth. I was told the history of this tumor is grim with tumor regrowth usually within one to two years. This diagnosis is devastating to anyone but to a 23-year-old, it was beyond shocking.
Within the first hours of the diagnosis, I was in shock and then angry and defeated. Then, I went for a walk by myself, came back into the room, and told my Dad that I was going to fight this. I have been a fighter all my life and though I know the prognosis, I am going to have a positive attitude, ask God to walk beside me in this battle, fight and win!
I have an amazing family that is my support system, fighting this battle with me. I work at Home Depot and they have been my second family always giving me encouragement but my dad is my hero. He has been by my side throughout this challenge. I might get down, get scared, or confused but my dad is there picking me up, getting the answers I need, and being so positive.
I have completed the six weeks of radiation and am continuing with the immunotherapy treatment every three weeks. I have lab work every week in New Jersey and travel to New York for the immunotherapy infusions. I have had two MRIs since diagnosis and they have shown stable disease, no new growth. I continue being positive with the support of my family.
Rhodes’ Life List:
- A round of golf for 4 at Baltusrol Golf Club, Merion Golf Club and/or Pine Valley Gold Club.
- A weekend of bass fishing with my dad.
- A suite at a New York Red Bulls game and to meet the players (I’ve gone to a Red Bulls game with my family every year for my birthday).