A Journey of Love and Loss: Navigating Glioblastoma with My Dad

In December 2022, my dad, Otis Mattox, Jr., started feeling unwell at the start of what should have been a happy holiday season. In the beginning, the doctors in the ER thought it might be food poisoning, but after several trips to the emergency room, it became clear that something more serious was going on. His health deteriorated, and we faced challenges getting him an MRI. It wasn’t until he became seriously ill and rushed back to the VA Hospital with sepsis and pneumonia that we were able to get the MRI he so desperately needed. This unexpected turn of events turned our festive season into a difficult and uncertain time.

After finally getting the MRI, we were sent to another hospital close by for a brain biopsy. It was there, on January 27, 2023, that we received the earth-shattering news — glioblastoma multiforme grade 4, a massive tumor spreading across his corpus callosum. With a prognosis of less than 30 days to live, our world collapsed. There were no options for removal or cure, so we returned to the spinal cord injury (SCI) unit at the veteran’s hospital, where he had been treated before. Considering there weren’t many units adequately equipped for his condition at the VA, we opted to stay in SCI because he was familiar with the staff, and it felt like the most comfortable option for him, as going back home wasn’t possible for us.

Our primary focus was getting my dad quality care as he battled a fast-growing tumor that brought about swift declines in memory, mobility, speech, and mood. Even though we were dealing with incredibly tough circumstances, I firmly pushed to keep him engaged in an active life. Unfortunately, we encountered obstacles accessing various therapies like music, art, occupational therapy, and physical therapy. Despite these challenges, the caring nurses on his team helped us find comfort in simple joys, like moving his bed outdoors so he could feel the warmth of the sun on his face and breathe in the fresh air.

My life changed a lot. I lost my job because I had too many days off, and FMLA didn’t protect my leave. Surprisingly, not having a job turned out to be a good thing. I got to spend a lot of time at the hospital with my dad, making memories, laughing, and expressing our love. Because of difficulties in coordinating efforts, establishing a plan of action took a few weeks. Thankfully, my dad was initially responding positively to the prescribed medication. However, troubles arose when he was taken off the steroids a few days before starting radiation. This led to him getting pneumonia again, and a subsequent MRI revealed new growth, further weakening him.

Given the difficult situation, we decided to transition to [only] palliative care. We tried radiation a couple of times, but eventually decided to stop as it wasn’t proving helpful. We found ourselves celebrating my dad’s 59th birthday in hospice, surrounded by friends and family. As we settled into the harsh reality before us, our final days were steeped in worship and gratitude. My dad gradually stopped eating and talking, but we held onto each other in those poignant final moments. On April 1, 2023, the nurses called, and I returned to the hospital to say my goodbyes. As my dad was taken away, he received his final salute over the speakers, with the night shift nurses silently standing at the end of the hall in tribute.

The critical moments in my dad’s journey weren’t only about medical events; they were the simple expressions of love. When he was diagnosed, our lives changed, but we faced it together. We shared words of love and thanks daily, ensuring he never felt alone or frightened. These are the memories that will stay with me forever, and I value the time we spent together, knowing that not everyone gets to experience such precious moments.

Taking care of my dad as his only child was incredibly tough. I became his primary support while also dealing with the challenges of being a single parent to my son, who was preparing for high school admissions. Juggling these responsibilities felt like an intricate dance. My dad’s declining health added another layer of difficulty, and the fear for his well-being took a toll on me emotionally. It was a daily struggle, with emotions ranging from deep sorrow to frustration.

The challenges seemed never-ending, and the journey was really tough. I had to constantly fight for my dad’s rights at the VA to make sure he got the support he deserved. On top of that, I had to figure out the complexities of dealing with brain tumors, cope with grief, and handle financial instability after losing my job. It was even more difficult because my dad, who used to be active, independent, and loving, lost so much of himself with no hope of getting better. The most heartbreaking part was seeing him change and knowing he couldn’t get the medical treatment he so desperately needed, which made me feel like I had let him down, especially since he couldn’t come home.

Amid those difficult times, the National Brain Tumor Society became a source of support for me. In my research, I came across this organization and became more committed to working with them. In September, I participated in my first NBTS event, the virtual “Head to the Hill,” where I joined others in advocating for our loved ones. Finding strength in shared experiences, I felt a sense of community. In October, a grief anthology I co-wrote, ‘Lineage of Grief,’ was published, and I plan to donate part of the proceeds to the NBTS fundraiser I initiated in memory of my dad. My dedication to working with NBTS remains strong, and I’m eager to help others on their challenging journeys with their loved ones. Even though my dad’s journey ended on April 1, 2023, his legacy inspires me to transform my pain into purpose. As I navigate the unfamiliar terrain of grief, I am determined to make sure that no one goes through this heart-wrenching journey alone.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.