Stacy Hurt: Caring for a son with an ultra-rare disease while battling stage IV cancer
Stacy Hurt’s youngest son, Emmett, suffers from a genetic chromosome abnormality (a 1Q duplication) so rare that his syndrome does not have a name. Emmett is one of only three known cases in the world. Now 18, he is unable to walk, talk, stand up or care for himself. He is dependent on Stacy and her husband for his care. “We lift him, diaper him, feed him and give him medication several times a day,” explained Stacy. “He doesn’t sign or point or follow commands so knowing his wants, needs and pain is determined through a process of elimination, mostly comprised of crying. He is basically a 120-pound baby.”
Despite the immense amount work caring for Emmett, Stacy says that her role as caregiver is the most rewarding full-time job that she never asked for. “He is beautiful, sweet and pure — like an angel from heaven.” Emmett is even exceeding all the expectations that more than 60+ specialists had for him over the years. “Although he can’t speak, when he looks up at me with his big blue eyes and smiles at me — I smile at him — and I know that he knows how much he is loved.”
After nearly a decade of managing Emmett’s complex care, Stacy started experiencing nagging abdominal pain, chronic fatigue, and blood in her stool — all of which she dismissed to being part of her stressful caregiving life. However, a visit to her primary care physician and then a colonoscopy revealed “a tumor so large that the gastroenterologist couldn’t get the scope around it.” The tumor was confirmed cancerous — an aggressive stage IV cancer that had metastasized into 27 other places throughout Stacy’s body. Her prognosis was bleak — an 8% five-year survival rate.
“I had two young sons who needed their mother and a husband who needed his wife,” shared Stacy. “I knew I had to give this cancer fight everything I had and kick its ass.” Determined to defeat the odds against her, Stacy underwent 55 chemotherapies, 20 PET scans, chronic nausea and neuropathy, radiation sessions and two surgeries. During one of those surgeries, Stacy went into cardiac arrest and nearly died. In 2015 she was declared NED (no evidence of disease) and has been cancer free ever since.
Today as a patient advocate for colorectal cancer and rare diseases Stacy is often asked how she was able to manage these enormous challenges simultaneously. “It was sheer hell fighting for my life against stage IV cancer while caring nonstop for my disabled son. Each one of those tasks in and of itself is all-consuming,” said Stacy. “But there are millions of Stacy Hurts out there who are wives, mothers, aunts, volleyball coaches, teachers, nurses or others who are working double shifts to keep their lights on and food on their tables. I never once let my cancer define me or Emmett’s rare disease define him.”
