HARRISON MCCABE'S mint-green vest and bow tie matched perfectly with his prom date Jessica Cohen’s Grecian-style gown. On a mid-May evening, he slipped a wrist corsage of white roses and baby’s breath onto her arm upside down. “Sorry, I’ve never done this before,” he said before sliding it off and flipping it around.
Like all proud parents of prom-bound progeny—Jessica’s had driven her from their home in Severna Park to Harrison’s house in Potomac—the McCabes and the Cohens snapped photos of the smiling couple, who had become friends through BBYO, a Jewish youth group. Dark-haired Harrison, a strapping 6-foot-1, looked for all the world like the varsity football player he’d been at Winston Churchill High School.
Listen closely, though, and you might have noticed that something was amiss. As the 18-year-old sat on the family’s living room couch, Lois McCabe came up from behind and gently placed her hand on her son’s shoulder. “Do you want to take an Advil?” she asked softly. He shook his head.
The families went outside for more pictures. “You look so happy, Harrison,” Lois said. “It looks like you just got drafted for the NFL,” added his father, Michael McCabe, a patent attorney.
In reality, Harrison had been too ill to play football since the homecoming game in his junior year. By going to the prom, his mother said, he was “trying to have a little normalcy in the middle of the biggest crisis of his life.”
Less than three weeks later, Harrison would undergo life-changing surgery at a hospital hundreds of miles from home. On this lovely spring evening, though, he was just another high school kid on the way to his senior prom.
“He made it all the way to 2 a.m., and it was so great to see him happy!” his mother wrote in an email the next morning.
IT ALL STARTED just before Labor Day 2012, as Harrison—“McBabe” to his school friends—began his junior year at Churchill. “He says to me, ‘Mommy, I’m bleeding. I have diarrhea,’ ” Lois recalls. “It was really bad, really quick.”
She thought her son might have picked up a bug that August at a BBYO camp in Pennsylvania, and a gastroenterologist friend agreed. But there was no evidence of an infection in Harrison’s stool sample, and he wasn’t getting better. He was running fevers and would go to bed as soon as he got home from school.
A colonoscopy at the end of September revealed that Harrison had ulcerative colitis, a type of inflammatory bowel disease (IBD) that affects the large intestine, which is also called the colon. IBD occurs when the immune system mistakes food, bacteria and other materials normally found in the intestines for foreign invaders. It sends in white blood cells to do battle, producing chronic inflammation and ulcerations.
As many as 1.4 million Americans have IBD, according to the Centers for Disease Control and Prevention in Atlanta. Genetic, immunologic and environmental factors all seem to play a role in IBD, whose symptoms most often begin between the ages of 15 and 30, according to the CDC. Medication can help control symptoms, sometimes putting patients in remission for years, but it can’t cure IBD.
Rates of ulcerative colitis and Crohn’s, the other most common type of IBD, are growing faster in children and teens than in adults, especially in urban areas. Research suggests that 20 percent of patients with ulcerative colitis and 25 percent to 30 percent of patients with Crohn’s disease are diagnosed before age 20, says Dr. Amosy M’Koma, an IBD researcher at Meharry Medical College and a colorectal surgeon at Vanderbilt University Medical Center, both in Nashville, Tenn.
“Stress, pollution, diet, antibiotic use, medication use—all these things are probably involved in the incidence of IBD increasing worldwide,” says Dr. Aline Charabaty, a Potomac resident and the director of the Center for Inflammatory Bowel Disease at MedStar Georgetown University Hospital, who helped care for Harrison.
Why Harrison developed ulcerative colitis probably will never be known. But he and his family soon found themselves facing a medical crisis as his disease progressed quickly.
AFTER HARRISON WAS diagnosed, his doctor prescribed steroids and Asacol, a brand name for mesalamine, an anti-inflammatory drug.
He felt well enough to play in the October homecoming game, but three days later the bleeding returned. His diarrhea was so bad that he had to make 10 to 14 trips to the bathroom every day, Lois says. Going to school regularly was out of the question.
A second colonoscopy before Thanksgiving that year revealed “out-of-control colitis,” his mother recalls. “He never got better from that. He would go to school for a couple of hours, and he would call me. He couldn’t stay awake. He kept going to the bathroom.”
By January 2013, he couldn’t go to school at all. His doctor prescribed Remicade, a last-ditch medication for ulcerative colitis that’s also used to treat a handful of other autoimmune diseases, such as Crohn’s and rheumatoid arthritis. Remicade belongs to a class of drugs known as immunosuppressants. It is administered intravenously and can cause serious side effects, such as a lowered ability to fight infections and a rare, fatal type of lymphoma.
The family sought a second opinion and then a third, but doctors at Johns Hopkins in Baltimore and at Sibley Memorial Hospital in Washington, D.C., concurred that Remicade was Harrison’s only remaining option in the armamentarium of drugs used to try to put ulcerative colitis into remission. If medication didn’t work, the next step would be surgery to remove his diseased colon.
Harrison didn’t respond to the first infusion, which took nearly five hours at Shady Grove Adventist Hospital in Rockville. After his second infusion, he felt better for a couple of weeks, “and then he tanked,” Lois says. His doctor upped the dose for his third infusion, on Valentine’s Day 2013, but he was so sick he was barely able to participate in the BBYO international convention held that weekend at National Harbor in Washington, D.C.
A PHILADELPHIA NATIVE, Lois McCabe worked in the 1990s as a prosecutor in Washington, D.C., handling cases involving abused and neglected children. After Harrison and then his younger brother, Andrew, now 17, were diagnosed with developmental delays as toddlers, she left the prosecutor’s office and became an advocate for children with learning disabilities. She served for seven years as head of admissions for The Diener School, a small private school in Potomac for children who have deficiencies in language, learning and social skills. She is now beginning her second year as head of The Diener School.
Desperate to relieve Harrison’s suffering, Lois looked beyond Washington and Baltimore for answers. She kept hearing about Dr. David Rubin, a University of Chicago gastroenterologist who specializes in inflammatory bowel disease. In February 2013, she emailed him while waiting for her youngest, 11-year-old Caitlyn, to finish a dance lesson. “I was sitting in the car,” Lois says. “I poured my heart out to this doctor. In three minutes I had a response. He said, ‘Thank you so much for reaching out. We want to help your son. It sounds very, very serious.’ ”
Rubin asked Lois to send him all of Harrison’s medical records. After reviewing them, he emailed Lois: “Our team wants to see him immediately.”
“We just dropped everything,” Lois says. She emailed 10 friends and said, “I need help. You just need to take care of my kids. I’m leaving.”
Harrison and his parents flew to Chicago on Monday evening, Feb. 25, just a few days after his mother had emailed Rubin. The next morning, Harrison was admitted into a new hospital building that had opened over the weekend. “We thought we’d be home by Friday,” Lois says. “We ended up being there 18 days.”
RUBIN SAYS HE THINKS of every patient as a family member, but he didn’t realize until his first year of medical school at the University of Chicago that he actually was related to someone with inflammatory bowel disease: his grandmother Pearl. “I thought she was like every Jewish grandmother,” Rubin recalls. “She just complained about her stomach all the time.”
Now co-director of the university medical center’s Inflammatory Bowel Disease Center, Rubin is one of the country’s top experts on IBD. When Harrison arrived at the hospital, Rubin ran tests to see how his body was tolerating the Remicade. The results revealed that his immune system had begun producing antibodies against the drug, which explained why it had stopped working. About one in seven inflammatory bowel disease patients doesn’t respond to drug therapy, Rubin says, adding that Harrison was unusual in that he responded, but only intermittently.
