Trinity was born on October 23, 2008, a beautiful, healthy 8lb 6oz baby girl. It was a full-term pregnancy with no complications. As a baby, Trinity was a quick learner, reaching her milestones early. She had a passion for singing, dancing, and learning new things. Always a perfectionist, she loved helping with cleaning and keeping her room a certain way. In school, she excelled, displaying determination in everything she pursued.
In second grade, Trinity began experiencing difficulties with reading and distant vision. An eye doctor’s visit revealed astigmatism in both eyes, and she was prescribed glasses, which significantly improved her vision. During her well-visit, it was noticed that she had not grown much, but the doctor assured it was just a case of being a slow grower.
At the age of nine, Trinity faced severe headaches, fuzzy vision, and no growth in height. After eight days of headaches, she felt light-headed and collapsed. Concerned, her parents took her to the ER, where an MRI revealed a brain tumor. The news was devastating, and they were immediately admitted to Vanderbilt Children’s Hospital.
The tumor, known as Craniopharyngioma, had taken over her pituitary stalk, pituitary gland, and was attached to her hypothalamus, causing brain swelling due to improper spinal fluid drainage. Trinity underwent surgery to remove the tumor and pituitary gland, followed by hormone replacement medications. Despite recovery, she faced short-term memory issues.
Trinity’s life changed drastically since then, with daily medications, temperature-sensitive outings, and coping with the effects of Craniopharyngioma. Despite these challenges, she remained loving, faithful, and determined. Her sister, Serenity, also played a significant role in supporting her.
As she grew, Trinity faced more challenges, including dealing with bullying due to her weight, memory, and inability to sweat. The public education system struggled to accommodate her needs, so her parents decided to homeschool her, allowing her to learn at her own pace.
The tumor’s effects extended to other areas, such as the liver, leading to Non-Alcoholic Fatty Liver Disease (NAFLD) from hypothalamic obesity. Weight loss medications are being considered to address the issue.
Throughout this journey, Trinity’s strength and resilience have been inspiring. She is a perfectionist like her mother, excels at helping around the house, cooking, drawing, and caring for her family. The road has been emotionally, financially, and physically challenging for the family, but they have managed to cope.
Timeline:
- 2015 (Age 7): Diagnosed with astigmatism in both eyes, worse in her left. Prescribed glasses.
- 2016 (Age 8): Pediatrician’s well-visit showed no growth in height for over a year. Determined she was a slow grower.
- March 15, 2018 (Age 9): Severe headaches began, attributed to weather changes initially.
- March 23, 2018 (Day 8 of headaches): Collapsed at Wal-Mart. Admitted to the pediatrician, who ordered an MRI.
- March 30, 2018: Brain tumor (Craniopharyngioma) discovered. Admitted to Vanderbilt Children’s Hospital for treatment.
- April 4, 2018: Surgery to remove the tumor and pituitary gland. Hormone replacement medications started.
- April 10, 2018: Transferred from PICU to a patient room.
- April 11, 2018: Discharged and sent home.
- 2019: Tonsils and adenoids grew quickly from growth hormone and were removed.
- 2019-2022: Yearly MRI and labs every three months to monitor tumor recurrence and hormone levels. Adjustments made to medications as needed.
- November 2022 (Age 14): Diagnosed with severe scoliosis with a 75-degree curvature of the spine.
- March 7, 2023: Surgery to straighten her spine with rods, screws, and a bone graft.
- March 10, 2023: Discharged from the hospital with a vacuum bandage pump.
- March 17, 2023: Vacuum bandage removed, and a dry bandage applied.
