Hailey's Story
Hailey was a beautiful little lady who always knew what she wanted. She spent her time working through numerous daily dress and costume changes, dancing, playing in her playroom and on the playground, doing puzzles, shopping for dresses and stuffies, and taking blue Mustang rides to get cake pops. She loved her family, arts and crafts, her virtual preschool class, Disney (especially Elsa, Frozen, and Minnie Mouse), dinosaurs, Daniel Tiger, Bluey, and her puppy Skye. Hailey’s curly hair was always the first thing everyone noticed about her, followed quickly by her big personality which earned her the nickname, “Princess Sassypants.”
On 4/14/20, we noticed that she was having trouble with her balance after she woke up from her afternoon nap. While she was seemingly able to see objects, she was unable to properly track items with her eyes. That evening, we took her to UNC Children's Hospital. A CT scan revealed cloudiness around her brainstem and she was admitted overnight. The following morning, she was sent for an MRI and diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).
Our healthy and thriving little girl had just turned three years old and was given a prognosis of 9-12 months to live. Following her diagnosis, we relocated from Cameron, NC, to Huntsville, AL, to be closer to her medical teams leading the two clinical trials that she participated in. Those trials helped Hailey to defy the odds and feel well for almost 18 months. During that period, she was able to visit Disney World twice, take numerous beach trips across Florida thanks to Make-a-Wish and Blue Skies Ministries, go camping throughout Alabama, Georgia, and Florida, and visit her grandparents and family in Florida. She made many friends at three amazing hospitals—St. Jude Children’s Research Hospital, St. Jude Affiliate Clinic at Huntsville, and Children’s Healthcare of Atlanta at Scottish Rite—along the way.
Throughout her cancer battle, Hailey maintained that she wasn't sick; she simply had a “boo boo” in her head that her doctors and nurses were working hard to fix. Hailey never gave up, but was fighting the most unfair battle of all. While 85% of children who are diagnosed with cancer go on to be classified as "survivors," DIPG has a survival rate of less than 1%. Approximately 300-400 children are diagnosed each year in the United States alone and 90% of those kids die within two years. The standard of care for patients diagnosed has not changed since Neil Armstrong’s daughter was diagnosed in 1961. Simply put, DIPG is the most deadly pediatric brain tumor, it is incredibly underfunded, and more research is needed to change the prognosis for the next child diagnosed.
DIPG eventually stole Hailey's ability to walk, speak clearly, feed herself, play, and swallow. She was cognitively aware of what was happening to her while she was losing all of her abilities. Hailey passed away at home on 9/24/21; she was just 4.5 years old.