Baylor’s Story
Baylor Nichols was born on February 4, 2014. She was a sweet, smart, silly, and sassy little girl who filled every room with joy.
Baylor loved all things unicorns, the color purple, Disney princesses, and playing tic-tac-toe. She especially loved playing tricks on everyone—if you couldn’t find your phone, there was a 90% chance Baylor was the culprit. She was also the undisputed champion of memory match, astonishing everyone with how good she truly was.
Baylor was the middle daughter of three. She was a devoted Mama’s girl and constant shadow, her Daddy’s best buddy, and she shared a bond with her sisters, Emerson and Lennon, that was unlike any other.
Early Signs & Hospital Visit
In April of 2019, we began noticing subtle changes. Baylor became clumsier and started having trouble with her balance. One morning, she couldn’t walk straight without assistance, so we immediately took her to her pediatrician. At the time, we attributed it to an inner ear infection, and she was prescribed antibiotics. By the following evening, her condition had worsened—one eye turned inward and she could no longer walk. The on-call pediatrician instructed us to take her to the hospital right away.
That night, our lives forever changed. Around midnight, a CT scan revealed a large mass at the base of Baylor’s brain. She was immediately admitted to the Pediatric Intensive Care Unit and was prepped for an extensive MRI and possible biopsy the following day.
Diagnosis
After a two-and-a-half-hour MRI, earlier than expected, we were called in to meet with the doctors - expecting an update and progress of the biopsy. Instead, we received devastating news. The head of neurosurgery explained that they would not be performing a biopsy. Baylor had been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a highly aggressive form of pediatric brain cancer. We were told there was no cure and no effective treatment. We were told radiation might temporarily prolong her life and that she had nine months to a year—two years if we were very lucky. We were told to go home and make memories.
Understanding DIPG
Diffuse Intrinsic Pontine Glioma is the deadliest form of childhood cancer, not only because of its location, but because of how it grows. The tumor forms in the pons, located at the base of the brain, which controls vital functions such as breathing, heartbeat, swallowing, and muscle control. Unlike tumors that can be separated from healthy tissue, DIPG weaves itself through this critical area—much like a vine tightly wrapping around a plant—slowly robbing the body of these essential functions while the child remains fully aware.
Treatment
Our family decided to take everything day by day and despite our devastation, we focused on staying positive and doing everything possible to bring Baylor joy. We immediately began radiation therapy—33 rounds over six weeks, the maximum amount of radiation a person can receive in a lifetime. The process was incredibly grueling for Baylor: daily needle sticks, sedation, machines, hospitals, and unfamiliar faces.
During this time, we were blessed to meet Drew and Megan from Apple-A-Day. They surprised Baylor at the radiation center with an iPad in a pink case, along with a blanket, bag, and toy featuring her favorite princess, Belle. That day was a highlight not only for Baylor, but for us as parents. The generosity and love shown by Apple-A-Day helped her endure not just that day, but many difficult moments throughout her journey. The iPad became an escape from her very scary and uncertain reality- comfort during long trips to appointments, hours in waiting rooms, countless procedures, hospital stays when she simply wanted to be home, and days at home when she didn’t have the energy to do much else.
Baylor bravely fought her battle, enduring those 33 rounds of radiation, plus two emergency brain surgeries to relieve pressure, a clinical trial in Washington, D.C., and weekly infusions to control swelling. Through it all, she remained remarkably positive and resilient. Much of that strength was supported by the generosity of organizations like Apple-A-Day and the hospital’s child life team, who gifted toys during treatments and stays – providing small moments of joy and distraction during her hardest of days.
Baylor’s Toy Drive
Baylor was deeply grateful for everything she received. After her second brain surgery, as we prepared to go home just three days post-operation, she asked if she could get toys for the other children in the hospital who “weren’t as lucky” as she was and didn’t get to go home. From that simple, selfless wish, Baylor’s Toy Drive was born.
Her desire to give back ignited our community, and the outpouring of love was extraordinary. Baylor proudly delivered the toys, filling the lobby of Johns Hopkins All Children’s Hospital with hope and joy.
Saying Goodbye
On August 31, 2020, Baylor, at the age of six years old, peacefully gained her wings. She fought for 16 months after her diagnosis with courage, grace, and love, capturing the hearts of so many and teaching powerful lessons in empathy, compassion, and what it truly means to live fully. We are forever grateful for the time we were given with her and miss her beyond measure.
Baylor’s Legacy: Bay It Forward
To honor Baylor’s legacy, our family committed to “Bay It Forward” in her memory. Each September, during Childhood Cancer Awareness Month, we continue Baylor’s Toy Drive and host our annual Bay It Forward event. Through these efforts, we raise funds for organizations that support children and families battling pediatric cancer and contribute to the ChadTough Defeat DIPG Foundation, which funds critical research and supports families facing the same devastating diagnosis we once received.
We are also incredibly excited and deeply grateful to reconnect and work with Drew and Megan as they launch the Bay It Forward Foundation, providing electronics to children battling serious illnesses throughout Tampa Bay.
Baylor’s light continues to shine through every act of kindness, every toy delivered, and every child comforted in her name. We believe Baylor would be so proud to have her memory associated with this mission—just as we are honored to carry it forward, ensuring that her love, compassion, and joyful spirit continue to touch lives for years to come.
