"Maddie often asks when her cancer will be gone," says Elizabeth Hight, Maddie's mother. "And sadly, I can't give her an answer."
In the years since Maddie was diagnosed with Stage IV Neuroblastoma , she's watched as many of her playmates in the oncology clinic at Children's Hospital at Erlanger have started treatment and—one by one—progressed to having no evidence of disease but that's not the case for Maddie, who's considered a medical marvel. Maddie has been in continuous treatment since her diagnosis on July 11, 2005.
When Maddie was diagnosed, the rambunctious 3-year-old had no idea what she was up against. She was stubborn about taking medication and she hated the physicians' exams.
"It was a constant battle of the wills, but Maddie would also joke and be playful through some of it," Eizabeth says. "While it's become her way of life now, she understands that what she has could also take her life." The Hight Family did everything in their ability to make sure that didn't happen.
Plans for Fighting Forever
The numerous treatments—some mild and some rough—have included chemotherapy, tumor resection, a stem cell transplant, radiation, and an antibody study. Today, however, Maddie remains on a Phase I study medication, in a protocol written solely for her. The medication, for which she was granted five years of compassionate use in 2011, has kept her disease stable.
"T here is no end in sight" says Elizabeth, who believes her daughter's Neuroblastoma may soon be treated as a chronic condition because of its long-term stability. "I think, for the most part, Chris [Elizabeth's husband and Maddie's father] and I have accepted that we will continue to fight forever if we have to. We are not willing to take the risk of taking Maddie off treatment and have the cancer blow up again."
Supporters Since Day One
Maddie and Emily Ransom, for whom Emily's Power for a Cure was named, met in the oncology clinic at Children's Hospital at Erlanger. The two little girls became fast friends—as did Elizabeth and Wendy Ransom, Emily's mother. When Emily passed away and the Ransom family created Emily's Power for a Cure, Maddie and her family immediately became foundation supporters.
"Neuroblastoma is a horrible disease that robs children of their childhoods, and sometimes takes kids away, but the research it will take to find the cure is expensive and time consuming," Elizabeth says. "Though Maddie's trials were not funded by Emily's Power for a Cure, they were funded by someone, and these trials have been Maddie's miracle. Who knows whose miracle is possible because of funding from Emily's Power for a Cure?"
"Maddie is one of the reasons Emily's Power for Cure was needed and she was a guiding light for me during my darkest hours. That little girl, young woman, showed the world what true bravery is. I am a better person because I knew her, loved her and was loved by her." Wendy Ransom, Founder of Emily's Power for a Cure