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Alongside his scar, a smile

Published:November 8, 2009, 8:56 AM

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Updated: August 21, 2010, 2:55 AM

If you didn’t know it was there, you’d never notice the red scar that curls around the front of 4-year-old Deaglan Carney’s right ear, then zigzags its way under his hair to the top of his head.

The boy doesn’t flinch when his father, Ed Carney, lifts his son’s blond hair back to show the scar to a visitor.

After all, Deaglan’s parents have told him there’s no reason he should hide it. Quite the opposite, in fact.

“What do chicks dig?” Carney prompts the boy.

“Scars!” Deaglan hollers, grinning.

It’s been a trying road that has led the Carneys to this point, a place where they can laugh about the visible reminder of the cancerous brain tumor that threatened a much bleaker future.

Three months ago, as Deaglan was headed into surgery, doctors warned it was likely that the boy who came out of the operating room would never be quite the same as the spunky little boy who went in — even if they were able to extract the entire tumor.

Memory problems are common for kids who recover from this kind of cancer. School might be a challenge, one doctor said. And kids often end up morbidly obese, because of problems the tumor causes with the pituitary gland.

In the short term, doctors pre-dicted, Deaglan’s head would be so swollen that his parents probably wouldn’t recognize him for more than a week. Most likely, he’d have to stay in the New York University Medical Center for about two months before he was stable enough to go home.

None of those things happened.

“The doctors were very pleasantly surprised,” Ed Carney said.

Dr. Jeffrey H. Wisoff and his team were able to get the entire tumor out, and Deaglan’s recovery has exceeded expectations.

The boy’s head did not swell. He was discharged in eight days, not eight weeks. His memory seems just fine. And, although Deaglan’s face is fuller than it had been, he hardly seems on a track to obesity.

“Times like this renew your faith,” said Ed Carney, an officer with the NFTA police. “It’s something bigger than yourself.”

Some would say Deaglan’s recovery has been the result of heavenly intervention. The Rev. Joseph Moreno of St. Lawrence Catholic Church in Buffalo, who has helped the family through the past several months, is one of them.

Several times before and after Deaglan’s surgery, Moreno blessed the boy with a relic, a garment that Father Baker once wore.

“I really believe it’s Father Baker’s miracle,” the priest said of the boy’s recovery.

Moreno, who came to know the family through a mutual friend, has proved to be something of a guardian angel for the East Aurora family. Moreno at one point orchestrated a get well card-writing campaign to boost Deaglan’s spirits that generated thousands of cards, and he traveled to see the boy during his hospital stay in New York City.

Craniopharyngioma, the type of cancer Deaglan had, generally strikes children and adults over 50. More than a year ago, Deaglan started suffering a variety of symptoms, including weight loss, excessive thirst, nausea and headaches.

In April, a doctor at Women & Children’s Hospital diagnosed the tumor and performed an initial surgery to relieve pressure from the tumor on his optic nerve. In the weeks after that, Ed and Audra Carney, an accountant at Praxair, lined up appointments with the best pediatric neurosurgeons in New York City.

After his surgery in July, the good news was that Deaglan’s tumor was benign, meaning it should not spread elsewhere in his body.

There’s no guarantee, though, that it won’t grow back in his brain. Every few months for the next 10 years or so, he’ll return to New York City so the pediatric neurosurgeon can look at MRIs of the boy’s brain to make sure the tumor hasn’t come back.

Even though the golf ball-size tumor is gone, the damage from it remains, largely because it destroyed Deaglan’s pituitary gland. So he takes thyroid replacement pills and medication to control urine production.

His parents diligently track every milliliter their son drinks, and every milliliter he urinates, to make sure the two match. If they don’t, his medication is adjusted to compensate.

In other ways, too, Deaglan’s experience growing up will be different from that of his friends. For one thing, he won’t be growing — at least, not without the help of hormones. As it grew, the tumor in his brain crushed his pituitary gland, effectively stopping his growth.

“Before this, he was at the top of his growth chart,” Ed said. “Now, he’s at the bottom.”

Little brother Finnin, who is 19 months younger, is starting to catch up in height to Deaglan, the brown hair on top of Finnin’s head reaching closer and closer to the top of his blond brother’s head.

Eventually, Deaglan will take growth hormones. But doctors want to wait a year before starting the hormones.

A benefit is being held today to help the Carneys defray medical expenses not covered by insurance and the cost of ongoing travel to monitor Deaglan’s condition. The event will be from 2 to 7 p. m. at the Iron Workers Hall, 196 Orchard Park Road, West Seneca. Tickets are $20. Donated items include two autographed jerseys from Derek Jeter and a television from Jay Leno.

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