June 4, 2013 – June 27, 2020
Diagnosed: October, 2019
Hadley is a 6-year-old from Lawrence, Kansas. She loves Wonder Woman; her cat named Goose; her mom, Tarah; and more than anything, her little sister Mia. She’s witty and smart, and if you tell her something once, she’ll never forget it.
“She isn’t one of those kids who talk a lot, but when she does, it’s usually an unbelievably timely retort that always has us laughing,” said Tarah. “She loves science and creating things. She’s never satisfied with a simple drawing; it always must have a three-dimensional component.”
Hadley was enjoying the start of first grade when in October she started experiencing balance issues. Hadley started walking oddly, and even began having strange speech patterns. After several tests and an MRI scan, Tarah heard the unimaginable words “inoperable brain tumor.” Hadley was initially diagnosed with diffuse midline glioma on her left brain stem. Following an 11-hour brain surgery to remove as much of the 4.5-centimeter mass as possible, a biopsy confirmed that the brain tumor did contain the H3K27M mutation, and was in fact Diffuse Intrinsic Pontine Glioma (DIPG).
“I never imagined that the diagnosis would be what it was,” said Tarah. “A tumor that cannot be fully removed, and there has never been a proven treatment. Nine months to live… it was like I was no longer in my own body. I still feel like that some days.”
Tarah immediately decided to do everything she could to get Hadley the best medical treatment, but to also provide her with the fullest life imaginable for as long as possible. With support from Hadley’s aunt Misty, their community, and even strangers far and wide, Tarah set out to make every one of Hadley’s dreams come true.
DIPG is frequently referred to as a rare disease, but sometimes the coincidences surrounding the children fighting it can take your breath away. A few years back, Hadley’s cousins danced at the same dance studio as another DIPG warrior, Parker Monhollon. Hadley’s aunt, in an effort to do everything she could to help her family, reached out to Parker’s mom, Amanda, for help. Amanda happened to live near the Ward family. Jace Ward, a 21-year-old college student, had also recently been diagnosed with DIPG, and his mom, Lisa, was in the midst of researching treatment options. Lisa connected with Hadley’s family, and within five days was able to find Hadley an open trial with Dr. Carl Koschmann of Michigan Medicine.
In November 2019, Hadley spent five weeks in Ann Arbor, Michigan, undergoing 30 radiation treatments concurrent with ONC201. This new drug, for which Lisa Ward has fought tirelessly to help more patients gain access, has shown promising results in patients whose tumors contain the H3K27M mutation.
“Through all the ups and downs of treatment, Hadley remained incredibly spirited, resilient, and never stopped sharing that beautiful smile,” said Dr. Andrea Franson, Hadley’s primary pediatric neuro-oncologist.”
By February of this year, Hadley had returned home and her MRI showed significant shrinkage. She continued to do well throughout March, but then on April 16 an MRI confirmed that Hadley’s tumor had suddenly and very aggressively progressed and had reached her spine.
Feeling hopeless, the family asked Hadley what she wanted to do most in the world. “Without hesitation, she answered that she wanted to see the beach. We immediately made the decision to make her dream come true,” said Hadley’s aunt, Misty Schmidt.
With help from their community, Hadley and her family were able to visit Dauphin Island, Alabama, where she was able to not only see the beach for the first time, but also swim with dolphins. By then, COVID-19 had caused most everything to be closed, but the city’s mayor gave the family special permission to utilize the beach, and strangers made sure to deliver goodies, toys, and food to the family.
Hadley gained her angel wings on June 27, 2020. In her short time on earth, Hadley touched and impacted many lives. After her death, the family donated Hadley’s tumor to the DIPG Research Team at C.S. Mott’s Children’s Hospital in Ann Arbor, Michigan. Through the gift, Hadley will continue to impact the lives of children affected by DIPG.
