Phils have a gutsy fan rooting for them at Children's Hospital

Conner Nestler has cystic fibrosis, a condition that frequently lands him in the hospital for long stretches. That's where the 19-year-old watched Wednesday night's Phillies game.
Conner Nestler has cystic fibrosis, a condition that frequently lands him in the hospital for long stretches. That's where the 19-year-old watched Wednesday night's Phillies game. (MICHAEL VITEZ / Inquirer Staff)
Posted: October 07, 2011

"The Mayor of CHOP is back in office," Chris Nestler posted on Facebook.

The mayor would be his son, Conner, 19, who has been coming to Children's Hospital of Philadelphia so long, so often, you'd think they'd at least give him a room with a flat-screen TV to watch the baseball playoffs.

Children's did get the NFL channel since his last visit in June.

Sitting in his hospital room Wednesday, watching the Phillies, ordering takeout wings with the nurses, Conner looked like a normal sports fan, albeit one who flushes his own IV as if he were Conner Nestler, M.D.

After the first three batters in the top of the first inning, Conner said, "This is going to be a long game for St. Louis."

It ended up being just the opposite.

Much of the night he sat on his bed, holding onto the handle of the IV pole next to his bed. Maybe that was metaphor (symbolism?) for the suffering of all Phillies fans.

He did laugh when Cardinals catcher Yadier Molina slammed his helmet in the dugout in frustration, and he felt bad for Phils slugger Ryan Howard when he struck out.

"There's so much pressure on him," Conner said of Howard. "Everyone expects him to hit home runs."

Journey together

Conner graduated from Exeter High School in June but didn't send out announcements, didn't feel any special sense of pride or accomplishment. His father wept during the whole ceremony.

Father and son made this journey together. Conner is an only child. His mom died from a medical error during surgery when he was 4. In running a catheter into her heart, doctors punctured her lung and never knew it. She bled out and died in the recovery room. So it was a bereaved father and a very, very sick son.

Over the years, Chris, a cop in Limerick, made endless trips first to St. Christopher's Hospital for Children and then to Children's to get Conner the care he needed.

(I first met Conner when he was 8, at St. Christopher's, when I was writing a story about Woody Wolfe, a "musicianary" who sings to sick children.)

Dad worked two jobs, the craziest shifts, to support his son. Conner cooked his own meals by age 12 and took control of his own medicines and medical care.

Conner has cystic fibrosis, an inherited disease of the lungs and digestive system. When you have CF, and really when you have any chronic disease, and you're a teenager, there is often a rebelliousness, a tendency to slack off on your medications, to lapse on the strict regiments of home treatments required for your very survival, said his pulmonologist, James L. Kreindler.

Conner had no mother. He had a very, very busy father, and he did his three-times-a-day inhalers, took all his meds, hooked up his own feeding tube at night.

For many years, when Conner came to the hospital, his grandpop sent down two bags of Swedish fish the size of lawn fertilizer - one for the nurses, which they'd polish off in a day, and one for Conner's room, so staff on the floor would wander in and say hello, grabbing a handful.

Many CF patients, especially around his age, get a central line placed in their chest, and this makes the administration of medicines much easier and faster, and also allows patients to do more IV antibiotic infusions at home. So a 15-day hospital stay might be cut down to five.

But Conner knows his dad trembles at the thought of losing his son the way he lost his wife, and so he has opted against a central line and makes do in the hospital with IVs in his hand or arm. Everybody understands.

Remarkably positive

There has been incredible improvement in care for people with CF. There is even hope, real hope, that scientists before too long will be able to prescribe a pill that minimizes the effect of the disease, said his doctor.

For Conner, it is unlikely any advances will reverse damage that's already occurred to his lungs, and he could one day be a candidate for a lung transplant. Next year, he will transition to an adult program for CF at the University of Pennsylvania.

He seems remarkably positive. "It's my life, so why should I be down about it?" he says.

Conner has two great hopes. Both are long shots, maybe impossible.

He wants to fly helicopters. He's never been in a helicopter. His grandfathers were in the Air Force, and he heard endless stories from them. But he's been told by every branch of service that he can't enlist. Now he's checking into commercial flight school.

Conner also wants, after 11 years, to remove the feeding tube in his stomach. He wants to be able to rip off his shirt at the beach.

Because his lungs have to work hard, much harder than a healthy person's lungs, he burns calories.

So Conner, who is 5-foot-6, 130 pounds, eats four or five meals a day. But it's not enough. So he uses the tube at night. Every few months, typical for people with CF, his lungs start to give out. The disease begins to overwhelm him. His ability to breathe gets much more difficult. He gets sick. And at this time, for some reason, the body releases chemicals that diminish one's appetite. So Conner eats less when he needs his nutrition the most, and the weight flies off.

This summer, he tried to forgo the feeding tube. He ate and drank all the calories he could, and he lasted a couple of months. But then his weight flew off. When he got to Children's Hospital two weeks ago, he was down 20 pounds and very, very sick.

"It was kind of an eye-opener," he said. "I do kind of need this to stay healthy."

Just another fan

The folks at Children's worked their magic. Conner is feeling much better. So good that he watched the Eagles game twice, on Sunday and a replay on Tuesday. Pain is relative.

We watched the Phillies lose Game 4 together. He was pretty calm and quiet. He says he gets much louder at home, where he hopes to return in a few more days, but this is a hospital for children, and he has to set an example. He is the mayor.

Conner doesn't feel confident about the postseason. But if there is a parade down Broad Street, he'll be there, just another fan in the crowd.


Contact columnist Michael Vitez at 215-854-5639 or mvitez@phillynews.com, on Facebook or @michaelvitez on Twitter.

 

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