Kyle copes with Crohn's

After 13 years of care for his chronic condition, this Suffolk teen is a much-loved member of the CHKD family.

KyleFarleyA bellyache and diarrhea are not that unusual for a 4-year-old. That’s what Butch and Dina Farley thought when they first took their son, Kyle, to a pediatrician near their home in Suffolk. When the diarrhea and stomach cramping grew worse, however, the pediatrician suggested that they take Kyle to CHKD.

That’s where the Farleys met CHKD gastroenterologist Marc Tsou, MD, and where they learned that Kyle’s bellyache was a symptom of a chronic inflammatory bowel condition called Crohn’s disease.

“What can we do to fix this?” Butch asked. An electrician at Norfolk Southern’s Lambert’s Point coal terminal, he has a can-do attitude that most anything can be repaired. Dr. Tsou informed the Farleys that Kyle’s condition couldn’t be fixed exactly, but that proper treatment might be able to reduce its devastating effects.

Like many CHKD patients, Kyle had been diagnosed with an incurable but treatable illness. Other examples of chronic conditions treated at CHKD include diabetes, sickle cell disease, asthma and heart defects.

“In these cases, parents can feel powerless. They want to fix it but can’t,” explains Dr. Ann Kuhn, one of Kyle’s surgeons.

First described in the 1930s, Crohn’s causes the immune system to attack and destroy the cells of the gastrointestinal tract.

“While genes have been tied to Crohn’s,” Dr. Tsou says, “nobody knows why it happens. It’s not activated by a specific food. It can go into remission, but it never goes away.”

At age 4, Kyle was, by far, the youngest patient Dr. Tsou has ever diagnosed with Crohn’s disease, which usually strikes in the teen years. And at CHKD, his case is one of the most severe.

While Crohn’s can’t be cured, doctors can help make sure patients have the best possible quality of life.

Kyle doesn’t remember his early days at CHKD, but they are seared into the memories of Butch and Dina. Not long after Dr. Tsou diagnosed Kyle, an X-ray showed that the Crohn’s disease had disintegrated a swath of Kyle’s intestines.

“Doctors told us the destroyed tissue was the consistency of overcooked spaghetti that’s been left out to cool too long,” Butch remembers. In order for Kyle’s healthy intestinal tissue to function, the destroyed tissue would have to be removed.

Both he and Dina were stunned. “I’ll admit there were tons of tears,” Butch says.

KyleFarley2A CHKD team of pediatric surgeons removed the diseased portions of the intestines and joined the remaining portions of healthy bowel together.

Recognizing the severity of Kyle’s Crohn’s, Dr. Tsou immediately sought a cutting-edge medication called Remicade that showed promise in Crohn’s patients. “The standard drugs for Crohn’s suppress the entire immune system, attempting to keep immune cells from attacking the intestines,” Dr. Tsou says. “Remicade targets a specific immune protein that is directly involved in promoting inflammation. It works less like a grenade and more like a sharpshooter.”

Kyle responded well – at first. But before a year was out, he developed a resistance to Remicade and became sick again. He returned to CHKD for more treatments, more drug protocols and more surgeries. Over 13 years, he’s made more than 170 visits to CHKD and undergone 30 surgical procedures.

Throughout, Kyle’s attitude and resilience has impressed everyone around him.

“Kyle was always a happy kid, never down,” Dr. Tsou says, “even after surgeries that required weeks of recovery.”

Adds Dr. Kuhn: “He was the most optimistic patient I’ve ever met in my entire life.”

Fun with food

Kyle’s first recollection of being at CHKD was when he was 7. By then, his personality had already charmed CHKD’s nurses. His “G-tube steak dinners,” when he was being fed through a tube from a food bag hung on an IV pole, are among the fond memories.

“We knew when Kyle would go in,” Dina says, “he wouldn’t be able to eat after surgery. He would be in there months without eating.” Dina and Butch would get home-cooked meals delivered and eat them in the hallway, but Kyle said it was OK if they ate in his room.

“I told him, ‘Whatever we’re having, you’re having it too,’” Dina says. “We got construction paper and cut out the food to match what we were having. We glued it to the plate and put it on his IV pole.”

Kyle loved the ritual, which he carried on for years, fully aware that the food was just paper shapes on a plate.

“I thought it was funny,” he says.

Then there were Kyle’s famous food parties. During recovery from his surgeries, he would jot down lists of all the foods he missed: macaroni and cheese, pizza, pepperoni rolls, brownies and a specialty of the Farleys, hash-brown casserole. After he was discharged, Butch and Dina would throw parties stocked with all the foods on Kyle’s list, parties often attended by Dr. Tsou and Kyle’s nurses.

The nurses also involved Kyle’s older sister, Kaitlyn, in his care, explaining his illness, the procedures he needed and his medications.

Once, after Kyle started first grade with an ostomy bag, CHKD nurse practitioner Beth Bonifas went to Northern Shores Elementary School in Suffolk to explain his condition to the school nurse. “Beth then went to the classroom to talk to the kids at their level,” Dina recalls. “It just eased him into being around other kids.”

The Farleys remember how the surgeons and Dr. Tsou made medical decisions to accommodate the needs of their family, not simply to treat the illness. At one point, for instance, Kyle was scheduled in May for surgery that would have required months of recovery.

KyleFarley3“Kyle wanted to enjoy the summer,” Dr. Kuhn says, “so we put it off until the fall.”

Today at 17, Kyle has a mop of dark hair and a perpetually amused look. Because of his illness, he was homeschooled or taught by tutors during eighth, ninth and tenth grades. This year, he decided that he wanted to go to Nansemond River High School.

“I worried a little about him going back after working one-on-one,” Dina says. “But I wanted him to at least try it.”

Kyle has not only handled the change, he’s excelled. Today, he has a 4.0 grade point average, plans to attend Virginia Tech and wants to continue on to become a pediatric surgeon.

The condition has altered not only Kyle’s life, but his family’s as well. His sister, Kaitlyn, now 20, is studying in the nursing program at Tidewater Community College and says she wants to become a pediatrician. Kyle’s 6-year-old brother, Kaden, knows more about the hospital than anyone else in his first-grade class at Northern Shores.

Both Butch and Dina feel grateful to have had the quality of care Kyle received so close to home.

“If we’d had to go to Philadelphia or Johns Hopkins, what could I do?” Butch asks. “I was already working what amounts to the midnight shift and had another child in elementary school. Having to go elsewhere for treatment would have been almost impossible.

“We were incredibly blessed to have CHKD nearby.”

Dr. Tsou practices with Children's Specialty Group at CHKD. Dr. Kuhn practices with CHKD Surgical Group.

This story was featured in the Spring 2013 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.