She was a ‘Riley kid’ diagnosed with a rare disease

Heather Lowhorn first came to IU Health as a Riley Hospital for Children patient at the age of nine. Now she’s back, diagnosed with a rare disease.

By TJ Banes, IU Health Senior Journalist, tfender1@iuhealth.org

At the age of 44, Heather Lowhorn, says her chart reads like a “sad medical novel.”

Consider that she underwent her first colonoscopy as a child (under conscious sedation); experienced the loss of three pregnancies; witnessed her mother’s progressive death; and nursed her father during his final days before he passed in the middle of her living room.

She was recently undergoing infusion at IU Health Simon Cancer Center, diagnosed in 2019 with colorectal cancer. The cause of the disease stems from a rare hereditary condition called “Familial adenomatous polyposis” (FAP). The condition leads to hundreds of thousands of polyps inside the colon and rectum.

It was during one of her hospital visits three years ago that Lowhorn, of Thorntown, Ind. first met massage therapist, Michelle Bailey. IU Health’s CompleteLife offers various therapies - music, yoga, massage, and art, that attend to the whole patient.

“One of the tumors is on my sciatic. Massage is something I look forward to on chemo day. It resets my focus. Cancer doesn’t just effect you physically; it’s also mentally. This is a way to readjust my psyche,” said Lowhorn. She was accompanied by her husband of 12 years, Jeff. They have a blended family of four children ranging in age from 15 to 37. They also have nine grandchildren.

Of those children, Lowhorn has one biological son, 15. “I call him my one in four; my 25 percent chance of having a child because I’ve been pregnant four times,” said Lowhorn. “Everyone in my family has or will die of this disease. It’s important that my son goes through gene testing,”

Lowhorn remembers spending most of childhood going to Riley Hospital for annual colonoscopies. In 2015 she moved to South Carolina and wasn’t getting regular checkups. When she moved back to Indianapolis she began having digestive pain. A biopsy confirmed that she has cancer. In February, Lowhorn was hospitalized for 17 days.

“The good thing about the type of cancer from FAP is it’s slow growing. I have three places that have gotten bigger or smaller but they haven’t spread to the lymph nodes,” said Lowhorn who is the care of Dr. Paul Helft.

“I love Dr. Helft. His bedside manner is unmatched. I’ve never had a doctor who knows who I am and remembers everything when I come in. He pays attention and takes his time.”

Lowhorn said she also has confidence knowing that she is in a teaching hospital.

“I’m always telling all my doctors if there’s something I can do to help someone learn something then I want to do it,” said Lowhorn. “I have an ostomy and when I was hospitalized for 17 days I was showing the nurses, students, and staff all of my ostomy supplies. They see things but they don’t always know the brands. My husband makes sure I have the Cadillac of supplies. I always feel like you learn the most from the patients.”