In December 2022, as the holiday season began, my dad, Otis Mattox, Jr., started feeling unwell, marking the beginning of an unexpected and challenging journey. What initially seemed like a minor health issue quickly escalated, turning our festive season into a period of uncertainty and worry. Doctors initially suspected food poisoning, but repeated emergency room visits revealed a more serious underlying problem. His health was rapidly declining, and the path to getting a crucial MRI became fraught with obstacles. It was only when his condition severely worsened, leading to sepsis and pneumonia, that we were able to secure the necessary MRI at the VA Hospital. This marked a dramatic shift, plunging us into a health crisis we were unprepared for.
Otis Mattox Jr. smiling warmly
Following the MRI, we were directed to another hospital for a brain biopsy. On January 27, 2023, our lives were irrevocably altered when we received the devastating diagnosis: glioblastoma multiforme grade 4, an aggressive brain tumor spreading across his corpus callosum. The prognosis was grim – less than 30 days to live. Our world crumbled. With no options for surgical removal or a cure, we returned to the familiar spinal cord injury (SCI) unit at the veteran’s hospital. Given the limited specialized care facilities at the VA, the SCI unit, with its known staff, offered a semblance of comfort during this tumultuous time, as returning home was not a feasible option.
Our primary focus shifted to providing my dad with the highest quality of care possible as he bravely faced a rapidly advancing tumor. This aggressive disease swiftly impacted his memory, mobility, speech, and mood. Despite the overwhelming circumstances, I was determined to ensure he remained engaged and active. We encountered hurdles in accessing various therapeutic interventions such as music, art, occupational, and physical therapy. However, the compassionate nurses on his team were instrumental in helping us find solace in simple pleasures. They facilitated moments of joy, like moving his bed outdoors so he could bask in the sun’s warmth and breathe in the fresh air – small acts that became significant in those difficult days.
My personal life underwent a seismic shift. The demands of caregiving led to job loss; the Family and Medical Leave Act (FMLA) did not adequately protect my need for time off. Paradoxically, losing my job became a blessing in disguise. It granted me the invaluable opportunity to spend extensive time with my dad in the hospital. We created precious memories, shared laughter, and openly expressed our love for each other. Initially, coordinating a comprehensive care plan proved challenging, taking several weeks to solidify. Thankfully, my dad showed an initial positive response to the prescribed medication. However, complications arose when steroids were discontinued just before radiation therapy commenced. This led to a recurrence of pneumonia, and a subsequent MRI revealed further tumor growth, exacerbating his weakness.
In light of these difficult developments, we made the heart-wrenching decision to transition to palliative care. We explored radiation treatment briefly, but discontinued it as it offered no discernible benefit. We found ourselves celebrating my dad’s 59th birthday within the hospice setting, surrounded by the love of friends and family. As we confronted the stark reality of our situation, our final days together were filled with worship and gratitude. My dad gradually ceased eating and speaking, but we remained connected, holding onto each other in those profoundly meaningful final moments. On April 1, 2023, the hospital nurses called, signaling that the end was near. I rushed back to the hospital to say my final goodbyes. As my dad was respectfully taken away, a final salute resonated over the speakers, a poignant tribute from the night shift nurses standing silently in the hallway.
The most critical aspects of my dad’s journey were not solely defined by medical events; they were profoundly shaped by simple expressions of love. From the moment of diagnosis, our lives changed course, but we navigated it together, united by love. Daily affirmations of love and gratitude ensured he never felt isolated or afraid. These memories are indelibly etched in my heart. I deeply cherish the time we shared, recognizing the profound gift of such precious moments, a gift not everyone is fortunate enough to receive.
Serving as my dad’s sole caregiver was an immense undertaking. I became his primary source of support while simultaneously navigating the complexities of being a single parent to my son, who was preparing for the pivotal high school admissions process. Balancing these demanding roles felt like a delicate and intricate dance. My dad’s deteriorating health added another layer of complexity, and the constant worry for his well-being took a significant emotional toll. Each day was a struggle, marked by a spectrum of emotions ranging from profound grief to intense frustration.
The challenges seemed relentless, making this journey incredibly arduous. I had to persistently advocate for my dad’s rights within the VA system, ensuring he received the deserved support and care. Simultaneously, I grappled with understanding the intricacies of brain tumors, processing overwhelming grief, and managing financial instability after losing my job. The situation was further compounded by witnessing the decline of my dad, a once active, independent, and loving man, as he lost so much of himself with no prospect of recovery. The most heart-wrenching aspect was witnessing his transformation and feeling helpless in securing the medical interventions he desperately needed, especially the inability to bring him home, leaving me with a sense of profound failure.
Amidst these incredibly challenging times, the National Brain Tumor Society (NBTS) emerged as a vital source of support and connection. My research led me to this organization, and I became increasingly dedicated to their mission. In September, I participated in my first NBTS event, the virtual “Head to the Hill,” joining a community of advocates for loved ones affected by brain tumors. Finding strength in shared experiences, I felt a powerful sense of belonging and understanding. In October, a grief anthology I co-authored, ‘Lineage of Grief,’ was published, and I am committed to donating a portion of the proceeds to an NBTS fundraiser established in my dad’s memory. My commitment to NBTS remains unwavering, fueled by a desire to support others navigating similar heart-wrenching journeys with their loved ones. Although my dad’s earthly journey concluded on April 1, 2023, his enduring legacy inspires me to transform my pain into purpose, ensuring that no one has to traverse this difficult path alone. This journey to love, though marked by loss, continues to guide my path forward.
