On August 3 of 2019 our 16 year old daughter, Paris, came downstairs to the kitchen complaining of a headache. We gave her Advil and urged her to rest which seemed to help. August the 5th was a Monday and what was supposed to be the first day of Patrick Henry band camp for Paris. To say she was excited about her upcoming junior year would be an understatement. Sadly, this was not a day she spent playing her trumpet with friends, it was a day spent in the RMH ED following a seizure. After hours of diagnostic tests Paris was admitted to the pediatric ICU. As we walked around the radius behind Paris’s bed, we locked eyes with what seemed to be the entire Carilion Clinic neurosurgerical on call team. The shock in their eyes was painful. It was in that moment we knew we were about to hear something that no parent or child should ever have to hear. A very large tumor had displaced much of her left frontal and temporal lobes.
As we tried to process the new reality of our daughter having a brain tumor, we ultimately needed a plan of action and we needed it fast. We utilized every contact and connection possible and after a flurry of phone calls, research, prayers, and soul-searching we chose to navigate Paris to Duke Health’s Brain Tumor Clinic after speaking with doctors Henry Friedman and Alan Friedman. Paris needed additional testing that was not available locally to complete her preoperative evaluation, such as a functional MRI for mapping brain activity which would later prove to be critical for optimal tumor resection.
We had a plan. We brought Paris home that Wednesday. This seems like a good place in the story to mention the birth of Paris’s baby sister, Smith Ashby, on August the 10th, a joyful distraction for our family. Paris adored her instantly and they had a sisterly connection that was undeniably special.
On August 29, Dr. Allan Friedman was able to resect about 80% of Paris‘s tumor. Her surgery lasted nine hours. They needed her to be awake for much of the surgery engaging her in conversation in an effort to preserve her speech and fine motor skills. Unfortunately, the tumor pathology revealed a grade 3 anaplastic astrocytoma. Paris was now not only faced with recovering from a major brain surgery, she would be spending the next few months receiving daily radiation and starting a new oral chemotherapy specific to brain tumors. Carilion Pediatric oncology graciously coordinated with Duke to facilitate Paris’s care in Roanoke and after a year of treatment, her remaining tumor remained stable without new growth.
During this time we watched Paris ferociously and faithfully fight her brain tumor. She wanted to live life and be a normal teenager. Paris wanted to go to school and academically excel, listen to music, experience live music, travel, go to college, get a summer job, go to church, spend time with family and friends, and so much more. She didn’t waste a moment of life. We let Paris guide us. She scored a 1300 on her SAT and was accepted to every university where she applied. She ultimately followed her heart and chose Liberty University which she was able to call home for the first semester of her freshman year. During and following Paris’s completion of treatment she had routine imaging to check for tumor progression and all revealed a stable tumor, until December of 2021. A new bright white lesion appeared just anterior to her original tumor and this lesion looked angry.
The biopsy at Duke confirmed this lesion was in fact different. It was a glioblastoma. Paris had stereotactic high-dose radiation, chemotherapy, and new targeted immunotherapies but nothing slowed the growth or the progression of her symptoms. Paris died on November 16, 2022 at home in our arms. She had just turned 20.
Paris never lost her faith or her happy disposition. She had the kindest heart and the sweetest laugh. She never complained about her battle with cancer. It never broke her. In fact, she kept a prayer box to hold tiny prayers she would write for others. She truly cared about people. She was strong, resilient, hilarious, beautiful, faithful, honest, brilliant, and so kind. Her spirit will continue to live forever through the people she touched during her far too brief life.
Brain cancer is the second most common malignancy in children following leukemia. Glioblastoma is the most common primary brain cancer with 12,000 cases diagnosed in the United States annually. Survival is essentially zero with an average life expectancy of 12 to 18 months after diagnosis.
