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June calendar kid: Battling Crohn’s disease

Published by , on Jun 20, 2018

Connor Kelleher is a spirited, sports-loving 12-year-old. He plays football, basketball and baseball and dreams of becoming a professional athlete, sports announcer or sports writer someday.

Connor FootballOver the past few years, Connor has made very important strides with his health, showing his bravery, resilience and characteristic sense of humor along the way. He’s undergone a series of intravenous treatments to manage the effects of a chronic medical condition. Over time, the progress he’s made has allowed him to focus more on his love of sports and his big dreams. “Connor’s outcomes completely changed when we came to CHoR,” his mom, Pam, remarks. “With his medical issues under control and his growth largely back to normal, Connor can enjoy being an active 12-year-old boy and not be defined by his condition.”

Serious diagnosis at a young age

Connor was diagnosed with Crohn’s disease when he was seven. Crohn’s disease affects the lining of the digestive tract causing damaging inflammation, bouts of stomach pain, weight loss, diarrhea, rectal bleeding, and other related health and growth issues that can worsen over time. The inflammation most commonly occurs at the end of the small intestine but can affect the entire digestive system and cause damage to other organs including the eyes, joints and liver. Typically, symptoms flare up, or worsen, at different times throughout an individual’s life. The condition is most prevalent among those ages 15 to 35, but more and more cases are being diagnosed at much younger ages.

Connor’s symptoms were subtle at first and Pam is very thankful the doctor he was seeing at the time “put two and two together” and recommended a colonoscopy which led to the diagnosis. “While we were initially shocked, in retrospect we are so thankful that we found out early so he could start treatment to minimize further damage.”

For the year that followed, Connor took oral medication which helped reduce some of his symptoms, but he still wasn’t growing or gaining weight. “We decided to bring Connor to CHoR,” Pam says. “Having previously worked at an academic medical center like VCU, I knew they were more attuned to the latest research and often the first to try new and innovative treatments.”

Connor and his family began working with Dr. Narendra Vadlamudi, a pediatric gastroenterologist and member of our specialized gastroenterology and nutrition team who oversees our inflammatory bowel disease program. According to Dr. Vadlamudi, our program provides treatment options “that are both well-established and a bit more aggressive in controlling inflammation associated with inflammatory bowel diseases like Crohn’s.” Related services, support and monitoring are all offered in a setting designed for kids by a team that specializes in working with kids. Our program is also part of Improve Care Now, a nationwide network of providers working collaboratively to ensure optimal treatment and health for children and adolescents with Crohn’s disease and ulcerative colitis.

Infusion center treatments

Dr. Vadlamudi developed Connor’s treatment plan after studying several factors. While lab work did show improvement in his level of inflammation, his growth parameters and further studies, including MRI, indicated that inflammation was still actively occurring and affecting his growth. “It is extremely important that we control the inflammation as once it is controlled, the intestines can better absorb food and retain calories,” Dr. Vadlamudi explains. “Also, when you no longer have inflammation, your body isn’t using up as many calories fighting it.”

When he was in fourth grade, Connor began receiving IV infusions of a medication that can be used long-term to control his inflammation. Every eight weeks he comes to our Children’s Pavilion infusion center for a three-hour process involving check-up tests, a two-hour infusion and a 30-minute observation period once the infusion is complete. Our infusion team monitors his health and vital signs, checks his blood to be sure he isn’t building antibodies against the drug, and checks his immune system as he is more prone to infection with this medication. Wendy Johnson, Connor’s infusion nurse, says he’s always brave about having his IV started and usually puts on his headphones for distraction.

“It may seem hard to believe, but Connor loves going to CHoR, especially on his infusion days,” Pam says. “He always gets a lot of attention from the infusion nurses, Dr. Vadlamudi and his staff. They roll out the red carpet for him, and he loves every minute of it. Connor’s favorite part is playing the X-Box while getting his infusion and making Wendy laugh.”

Wendy says working with Connor always makes her day and that she especially looks forward to seeing his funny impressions of famous people. “He shows up at the door with a bright smile on his face and a mischievous look in his eyes,” she says fondly. “He loves to tell me corny jokes. He also likes to act out things for me and has a fabulous sense of humor. As most of these kids are, Connor is quite resilient. He uses his humor to make others feel good even when he may not feel well himself.”

Infusion care for kids

Infusion nurses are registered nurses who have experience and/or special certification in starting IVs and catheters and who are familiar with administering infusion medication. They work with many specialty disciplines at CHoR and administer many different types of infusions, including chemotherapy treatments.

At the infusion center, there are comfortable reclining chairs; I-Pads, laptops and gaming systems available; and snacks and beverages on hand. Afternoon appointments are scheduled as much as possible so patients don’t miss school, and the team connects families facing similar issues to share knowledge and support. Wendy says Connor and Pam have been instrumental in talking with other kids and families who are facing a new diagnosis of Crohn’s disease and beginning infusion treatments.

Connor And Dad

Connor and his dad

Connor’s infusions will continue indefinitely as long as they continue to control his disease. According to Dr. Vadlamudi, he’s now growing well and gaining weight, and Pam reports that “Connor is a healthy, happy and active soon-to-be seventh grader with his Crohn’s under control.”

“We truly feel we are partners with the care team at CHoR,” Pam says when describing Connor’s medical journey thus far. “In Dr. Vadlamudi, we have found not only a highly-skilled physician who’s so well versed on the latest advances, but also a caring, compassionate person who recognizes the many emotions involved for both the parent and child when facing a child’s chronic illness. We know Dr. Vadlamudi, his nurses, and the infusion nurses always have Connor’s best interests at heart in all that they do and our family couldn’t be more grateful for that.”

Topping the list of “Connor’s best interests” is that he’s happy and thriving – both on and off the field. “Connor is doing so much better and is healthier than when he first came to us,” Wendy adds. “He is able to lead a much more active childhood because of his care.”

Learn more about the symptoms of Crohn’s disease.

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