Father and daughter battle illness as a team
Families always share things. But what is shared between Derek Dodson, Valley Grove Baptist's college and youth minister, and his daughter, Maurie, is not the pleasant experience of a family vacation at the beach.
Derek and Maurie have both been diagnosed with Crohn's disease, a potentially crippling condition that can cause inflammation throughout a person's gastrointestinal system. Common symptoms of Crohn's disease include abdominal pain, diarrhea and weight loss. Less common symptoms include poor appetite, fever, night sweats, rectal pain and rectal bleeding.
“Crohn’s is highly individualized,” Derek explained. “The disease is different in every person.”
Derek learned of his illness the summer before he turned 12 when he was visiting a friend and his family in Austin, which had been Derek's hometown at one time. The family had not seen him in quite awhile and was shocked at the amount of weight he had lost since his last visit.
“While I was playing tennis with my friend, I collapsed from exhaustion,” Derek recounted. “I was so weak. My parents came to get me and took me to my childhood pediatrician. He immediately suspected I had Crohn’s and admitted me to Seton Hospital there in Austin.”
Determining conclusively that the cause of Derek's problem was indeed Crohn's was a frustrating experience for the young boy.
“It took about six months for me to be diagnosed with certainty that I had Crohn’s,” Derek said.
Maurie's diagnosis came much more quickly after Derek and his wife, Carol, began to see the dreaded signs indicating she had developed the same malady.
Maurie suffered mostly from low grade fever and stomach cramps.
“She would go to school, and then the fever would come,” Carol said. “She had cramps and had to be sent home. This went on for three weeks.”
And while her friends were growing taller and developing as young pre-teens do, Maurie was failing to thrive physically.
“Slow development is one of the symptoms of Crohn's,” Derek explained.
Her doctor, who had initially prescribed Maurie Pepcid for stomach acid, soon recognized something more sinister than heartburn was to blame. He called Cook’s Children’s Hospital to amp up the investigation into Maurie’s condition. Within a matter of days, the Dodson family had an appointment with a physician at Cook’s.
“We saw the doctor on a Friday, and he immediately suspected Crohn’s and scheduled her for a colonoscopy the following Monday,” Derek said. “She was diagnosed within a matter of days.”
As can be expected, Derek felt no small measure of guilt after his daughter’s diagnosis, fearful he had passed on a genetic predisposition to the disease. As is often the case, it is those of tender years who impart the greatest lessons to the adults in their lives.
“I was crushed to know she was going to have to suffer through this,” he said. “About three days after her diagnosis, I was tucking her into bed and asking her how she was doing, about her classes?just getting a pulse on where she was. She could see I was tearing up, getting emotional, and she literally grabbed my face and looked me in the eye and said, ‘Dad, I’m going to be okay. This is a part of my story now. And God promises that I’m going to be okay.’”
Now managing the disease has become a father/daughter enterprise, with great support from Carol and Maurie's brother, Colby.
“You learn to cope with it,” Derek said matter of factly. “We are on a lot of medication.”
Both Derek and Maurie go for Remicade treatments every eight weeks in addition to taking medicine for their condition. The IV infusion treatments are not cheap.
“They’re very costly,” Carol, a teacher for Dublin ISD, reported. “Derek’s treatments are $9,000 and Maurie’s are $6,000. We have insurance for a portion, but on our salaries, it’s been very difficult.”
Though an upbeat young lady, Maurie admits the disease has affected her as a teenager. For Maurie, kids’ classic favorite foods such as spaghetti and pizza are verboten.
“I don’t eat anything with tomatoes because of the acid,” she explained.“I love pizza. And kids would ask me, ‘We’re having a pizza party here at school. Why aren’t you eating any?’”
The answers to their queries were not simple for the reflective young girl.
“At the very beginning she was very shy about discussing it with her friends,” Carol said. “She did not want people to know.”
But Maurie is a well-respected student with a great deal of friends?there were bound to be questions among her peers. She eventually confided her illness to a few close friends.
Crohn’s can be an embarrassing issue to discuss with people. There is no hedging around the fact it is a disease that affects the bowels?something people are loathe to discuss in polite society.
“Crohn’s is referred to by some people as a ‘silent disease,’” Derek explained. “It doesn’t present outward complications or symptoms. Since it presents itself so often in children, people might say, ‘Oh, they’re just faking it or just having stomach problems.' But we encourage people who have kids with ongoing stomach problems to have it checked out by their doctor. It could be something more serious. Tests now are very simple, very quick.”
The Dodson family has become heavily involved in the Crohn’s and Colitis Foundation of America's Take Steps Walk and have been selected as Fort Worth Honored Heroes for the walk scheduled for Oct. 27. Similar to Relay for Life, the event raises funds for the foundation's estimate of 1.4 million American adults and children affected by digestive diseases.
For Maurie, things are improving.
“Maurie is in remission at this time,” Derek said. “The first year she was diagnosed, she missed over 30 days of school. Last year she missed less than 10 days, including days of her Remicade treatment.”
For more information about Crohn's and other digestive disorders, visit the Crohn's and Colitis Foundation of America at www.ccfa.org. More information about Derek and Maurie and their Take Steps Walk team, Gut It Out, can be found by typing their names into the web site's search engine.