She’s a ‘rock star’ who doesn’t let disease get her down

Published 8:06 am Friday, June 5, 2009

CARRSVILLE—At Children’s Hospital of the King’s Daughters, little Madison Arnot is known by nurses, doctors and everyone else as a “rock star.”

It may have something to do with the way she takes her sickness in stride.

The 9-year-old Carrsville girl, who has a rare genetic disorder that all but guaranteed her a diagnosis of colon cancer, recently had her entire colon removed.

According to her parents, she was the youngest patient to ever undergo that procedure at CHKD.

“Her spirit has not been broken,” her mother, Monica Arnot, said while hugging her daughter. “She doesn’t complain. She never asks why. She’s like, ‘OK, this is what I have, and let’s do something about it.’”

Madison’s dad, James Arnot, had colon cancer when he was just 21 years old. He underwent a total colostomy and now has been cancer-free for 17 years.

Doctors later tested Arnot for a genetic predisposition to the disease.

“They found a mutation of the gene and told us to get our children checked,” he said.

The boys — Camron, now 15, and Sean, now 10 — tested negative.

Madison, who was 14 months old at the time, tested positive for hereditary Familial adenomatous polyposis, or FAP.

People who have FAP develop hundreds or thousands of colorectal polyps at a very early age, according to

The polyps don’t usually cause physical symptoms. Doctors told Madison’s parents to look for signs of polyps when Madison became a teenager because the average age of onset of colon cancer for people with FAP is 39.

The couple was taken aback when Madison, at age 7, started having the same colon cancer symptoms her father had had nearly two decades ago, including passing blood.

Doctors ran tests and told the family on Madison’s eighth birthday that they had found pre-cancerous cells in her colon.

They decided to perform a total colectomy with a j-pouch reservoir in March — the removal of all of Madison’s colon and the creation of a waste collection site from her small intestine.

Eventually, Madison will likely be able to use the bathroom normally. For now, as she recovers, she has to be fed intravenously through a tube that is inserted through her nose and down to her stomach. Another tube in her arm takes nutrients directly to her heart.

It’s a pricey disease. Even with health insurance footing some of the bill, the medical expenses are piling up.

Because of her sickness, Madison now has to be home-schooled and her mom had to quit work as a hair stylist to stay home with her.

The pump medications and IV nutrition, as well as home health care, cost about $980 a day.

“The last time we counted, the bill totaled about $620,000,” James Arnot said.

“We call her our million dollar baby,” Monica Arnot joked.

A barbecue benefit to help the family with mounting medical bills will be held at the Windsor Ruritan Club from noon to 7 p.m. on Saturday.

James Arnot said his co-workers from CIBA Specialty Chemicals in Suffolk and friends offered to throw the barbecue.

“There’s been a lot of community support,” he said.

Seven dollars will buy one pound of barbecue or a pork barbecue dinner with coleslaw, potatoes and a roll.

For more information about the benefit or for tickets, call 653-8655.