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'Tremendous Fighter, Little Angel' Defies Odds Against Rare Disease

Though it ended in tragedy, 7-year-old Sean Fischel's fight against hemophagocytic lymphohistiocytosis (HLH) inspired everyone around him.

This is the second part of a three-part series about Sean Fischel. Click here to read part one. Part three will run Thursday.

100 Days 

There’s no getting around it: The details of Sean Fischel’s battle against HLH are truly agonizing, a horror story of child illness and parental heartbreak.

After more than a month at the Children’s Hospital of Philadelphia (CHOP), in order to stave off further infection, doctors amputated both of Sean’s legs below the knee and nearly all of his fingers, which had become necrotic and hard to the touch, says his mother, Kim, as she raps her hand on the coffee table for effect.  

Sean should have been building forts in the woods with his older brother, Connor, or riding their bikes through their neighborhood in Moorestown, or playing street hockey or soccer. In spite of it all, Sean’s spirit rarely wavered. Kim only caught him crying three times, she says. Shortly after the surgery, Sean asked his mother whether his legs would return, and quietly wept at the answer.

“He said that he didn’t want to live like this anymore,” recalls Kim, her own voice breaking at the memory. “He was just so sad. He did that two days in a row. And after that he seemed to quietly accept it, and move on, and was trying to fight the battle with his body.”

As debilitating as the disease was, Sean made progress. It was incremental, and often plagued by setbacks, but he made progress. Progress enough for Kim—and all of Sean’s doctors, and nurses, and all the staff who came to know him—to hope. After initially giving him little chance to survive, doctors began to hint at recovery.

“At a certain point, one of his doctors said, ‘Maybe, six months to a year, you’ll get out of the hospital. We just need to get him out of the intensive care unit out onto the oncology floor.’ We were planning that,” says Kim. “I really truly thought we were going to make it out of there and I was going to be Sean’s physical therapist, and rehab specialist. I envisioned us going to the Virtua pool, and teaching him how to use his robo-legs. I was already looking up challenged athlete programs. There was so much hope that was generated.”

About half of all HLH patients survive—many require stem cell transplantation—according to Dr. Kim Nichols, pediatric oncologist at CHOP, and the ones who don’t rarely last more than a few months, especially those who manifest the disease as severely as Sean.

“He was a tremendous fighter. He really had an amazing mental attitude about him,” says Nichols. “He defied the odds in a way. But it wasn’t related to anything that I understand at this point. It really was quite a miracle that he lived as long as he did.”

Thanks to Sean’s resilience and the expert care at CHOP, the Fischels got 100 more days with Sean. It doesn’t seem like much—and the days often consisted of little more than sitting at his bedside, watching him breathe, praying—but they made them count.

“They were a gift,” says Kim. “We spent so much time with him, it was like we packed a year’s worth of time in those 100 days.”

‘I’m happy to be alive’

The Fischels’ story is one that makes you marvel at the mental and emotional resiliency of people. That ability to adapt to tragedy with grace. Kim talks about God, and an “ultimate purpose” to all this—though she's still waiting to find out what it is.  

Sadly, the staff at CHOP bear witness to these stories all the time. But the Fischels, and Sean in particular, stood out.

Alicia Rizzo is a nurse in the Pediatric Intensive Care Unit, where Sean spent his entire stay. She works mostly night shifts, and spent a lot of one-on-one time with Sean while his parents slept. They’d stay up together sometimes and watch movies in the middle of the night.

She looks at the Fischels and it gives her perspective.

“Sometimes you think about all the little things in life you get stressed out about, and you’re worrying about this and you’re worrying about that," she says. "(This) happened to them in the blink of an eye. You’re a completely normal family with three beautiful kids and a beautiful life, and all of a sudden you get hit with this pile of bricks, and the whole entire time they were so positive and just so thankful. They kind of teach you: Don’t sweat the small stuff. They were that kind of family who makes you remember why you want to help every sick kid out there.”

It would be too easy to let Sean’s story be about disease, or death. But that would miss the point of everything the CHOP staff did for he and his family, of the courage the Fischels showed, of the courage Sean showed.

Like Rizzo, Nichols has her own story that she comes back to when she thinks of Sean. She was in the room with Sean and Kim. He had just come off the ventilator after being on it for a while and it was hard for him to speak. He mumbled something, softly.

“I looked down at him and his mom looked down at him, and said, ‘What did you say, honey?’ He said, ‘I’m happy, mommy,’” says Nichols. “And to look at him, you wouldn’t believe it … And she says, ‘What do you mean honey?’ And he says something like, ‘I’m happy to be alive.’ He was just a tremendous little guy, this little angel.”

Nosni Mannic March 13, 2013 at 03:47 PM
Terrific Part 2. So sad. Amazing family. And medical staff.

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