Everyone at Grant and Norma Davis ChildLife Center who helped Carter Berkley’s intravenous treatment get started seemed like an old friend, chatting about the new toy he was assembling, asking about school, catching up.
And it was the same for 5-year-old Carter, sporting a fresh Mohawk his dad gave him the night before. He is cooperative and comfortable with the procedures after numerous treatments over the past four years, and doesn’t even mind coming in for them.
“He loves the nurses here at Via Christi,” said Carter’s mom, Mandy. “He calls them my nurses, and says, ‘When can I go see my nurses?’ He’ll even get out his bag early sometimes and start getting ready.”
Carter has opsoclonus myoclonus syndrome (OMS), which can manifest as a combination of involuntary, nonrhythmic eye movements and shocklike muscle contractions. He is doing well on the treatments, but they can take as long as 10 hours so he and other family members spend hours and hours in the brightly decorated, well-equipped playroom filled with arts and crafts materials, games, toys and other activities provided by Children’s Miracle Network Hospitals at Via Christi Health.
“We can go downstairs and walk around if he feels like it, but we like the IV cart that looks like a car,” said Mandy. “He never runs out of things to do here.”
Carter is “one child in 10 million,” the only OMS patient in Kansas the family has heard of, Mandy said. After getting inoculations at age 1 that contained live viruses for chicken pox and other diseases, his immune system was simply overwhelmed, she said.
“He was so young, we were just beginning to know what our little guy was like: outgoing, outspoken, very lively and always in a hurry. He was walking around furniture at 6 months and walking completely independently at 9 months. Then within a week, he couldn’t walk, crawl or sit up. It was easy to see something was seriously wrong. He had rage attacks that were far beyond a temper tantrum and no words to verbalize it. The words he’d had before he was sick he was unable to use.
“His eyes were twitching and turning back in his head. It was easy to see something was seriously wrong.”
Because of its rarity, OMS can be hard to diagnose.
“In six weeks, we had a tentative diagnosis and we felt very fortunate for that. His immune system recognizes the protein around his brain as a virus and attacks his brain,” said Mandy.
Children’s Miracle Network Hospitals also helps the family by covering gasoline expenses for their twice-yearly trips to consult Dr. Michael Pranzatelli, professor of neurology and pediatrics at Southern Illinois University School of Medicine and director of the National Pediatric Myoclonus Center in Springfield, Ill.
One-year-old Carter received two rounds of chemotherapy after his diagnosis, plus one about six months later. Two years ago, he had a full relapse after being taken off some of his medications and was given three more rounds of chemo.
His parents also had to give him steroid injections every other day over extended periods, which made him retain fluid. When he first came off steroids in July, he quickly lost five pounds, his mother said. Because of Carter’s diet restrictions while on steroids, the whole family learned to eat a low-sodium diet.
Children’s Miracle Network Hospitals also helps pay the cost of some of his medications. While the family is fortunate to have insurance, Mandy said, Carter’s medications are so experimental that none is FDA-approved, which makes the family’s share more expensive.
“Even if you have insurance, you can’t plan for everything,” said Mandy. “Who could plan for how much medications would cost? Who would have expected to have to travel out of state to see a specialist? It’s great to have their help with both of those.”
When he grew drowsy from some of his medications, Carter snuggled down to nap next to Shepley, a stuffed sheep he’s had since he was 1 month old. Mandy describes the toy as his “very best friend.” Shepley is so worn from their journey together he is no longer woolly and wears a protective sweater because his fabric can no longer be mended. Just before Carter drifted off, he ordered a meal of chicken breast, steamed broccoli, steamed carrots, rice and tea, with grapes for dessert.
“It’s the same meal he’s been getting for the past four years and he orders it the same every time,” Mandy said.
Happily, Carter is back to being an outgoing, outspoken, lively boy. His kindergarten classmates at Meadowlark Elementary School in Andover understand his need to wear a Mickey Mouse-decorated surgical mask to avoid infection and have all received instructions on how not to spread illness, such as covering coughs and using hand sanitizer.
“Sometimes they’ll even say, ‘Put your mask back on, Carter. You don’t want to get sick,’ ” Mandy said. “Everyone has been so kind and generous to us, each in their own way.”