23 Aug 2014
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'Sean's Love is Living on in Everybody'

Seven-year-old Sean Fischel, of Moorestown, lost his battle against hemophagocytic lymphohistiocytosis, but leaves behind a legacy of love.

'Sean's Love is Living on in Everybody' 'Sean's Love is Living on in Everybody' 'Sean's Love is Living on in Everybody'

This is part three of a three-part series about Sean Fischel. Read part one here and part two here. 

Searching for meaning

Somewhere in those 100 days, a fungal infection crept into Sean Fischel’s body—probably through one of his chest tubes, his mother, Kim, says. The infection, and the resultant complications, eventually led to Sean’s death.

HLH is often treated with the same medications as cancer—chemotherapy, steroids—to suppress the immune response, explains Dr. Kim Nichols, a pediatric oncologist and HLH expert at Children’s Hospital of Philadelphia (CHOP). However, these treatments often increase the patient’s susceptibility to infection, which is why more research is so vital.

Unfortunately, because it’s so rare, there is little funding for HLH research and the field of study is much smaller compared to more common diseases, Nichols says.

If there was some meaning, some higher purpose, to Sean’s death, it’s here, Kim thinks. Soon after his passing, the Fischels agreed to undergo testing to see if they can help doctors identify more of the genetic markers for HLH. The body of research on HLH has only identified about five or six thus far, according to Nichols.

Despite all the testing done on him, “Sean was not identified to carry alterations to any of the known genes linked to HLH. He falls into this group of non-hereditary patients, at least right now,” says Nichols. “In my heart of hearts, I have a feeling people like Sean, who present with such extreme HLH, are going to have an underlying genetic defect. We just need to find it.”

There’s another wrinkle to the Fischels’ saga, and it’s part of the reason Nichols is so confident they’ll find something:

The same week Sean got sick, Kim’s older son, 10-year-old Connor, also came down with an illness, which was later identified as a different autoimmune disorder—idiopathic thrombocytopenic purpura, or ITP. With ITP, the immune system attacks platelets, which are necessary for blood clotting. The disorder typically causes easy bleeding and bruising in those who have it.

ITP is nowhere near as serious as HLH, but the fact that both boys were diagnosed with autoimmune disorders—developing symptoms separately within days of each other, after contracting a virus—can’t be coincidental.

Connor was admitted to CHOP days after Sean, and for a little while Kim rode the elevator back and forth from Sean’s room on the seventh floor in the intensive care unit to Connor’s room on the fifth (in hematology). Though recovery could take a while, Connor is on medication to calm his immune system so his platelets can replenish. In the meantime, he can’t play sports—a bummer for a “super active kid” like Connor, but better than the alternative.

“It was extremely stressful,” Kim says of having both her sons living under CHOP’s roof at the same time. “But the way I handle things is I break it down, and I can’t worry about things I can’t do anything about. I have to be positive. I didn’t want to freak Connor out. So, yes, in the back of my mind, of course, I was like, ‘Seriously, God, what more could you put on us?’

“People ask: ‘How can you make it through this? Aren’t you mad at God?’ And, no, I’m not. It’s just not how I’m processing it. There’s an ultimate reason why this happened. I may never know what it is. But I think Sean’s love is living on in everybody. And I know that sounds almost hokey, but I do believe we’re all connected.”

‘Just a little bit of time here’

When the Fischels moved to Moorestown from Arkansas in August 2010, the transition was difficult for Kim. Her kids—Sean, Connor and 8-year-old Sydney—adjusted well, made new friends with no problem. But Kim, who says she’s “not super outgoing,” took a while to open up to the community.

Through Sean’s passing, the community—and beyond—has opened up to her in ways she could have never imagined.

Countless letters of support have poured into the Fischels’ mailbox—from friends and neighbors, from Sean’s classmates at Baker Elementary School, from people across the globe who have heard Sean’s story through Facebook pages and prayer groups.

“A necklace was sent to me yesterday from somebody in Illinois,” Kim says with a touch of bewilderment. “It’s just amazing. So many people are so touched that haven’t even met Sean. There’s food being delivered to our door every single day for the last four months, people taking our kids to and from activities. We are so blessed to live here.”

Nowhere was that support more evident than at a wrestling tournament held last month at Moorestown High School in Sean’s memory. The event raised more than $20,000 for CHOP (in addition to $20,000 raised for the Histiocytosis Association at a “S’mores for Sean” fundraiser last fall). During the tournament, the Fischels were presented with a plaque in honor of Sean and told the league had created a $500 scholarship in his name, to be presented each year to the most courageous high school wrestler.

Kim finds solace in the goodwill Sean has generated—from the money raised so other sick kids can be helped, to the emotional support given to her family.

Because there has to be a point to everything Sean—and his family—went through. And even if doctors don’t find a genetic marker in his DNA, even if there’s never a cure for HLH, Sean has already left behind an important lesson, Kim says. 

“To be appreciative of every little thing you have in your life. From your health, to your children screaming—even if they’re annoying you. To appreciate the people around them, to appreciate the love they’re receiving. And that we’re all just so connected … Ultimately I think we’re all going to be together in the end, and this is just a little bit of time here.”

Click here to make a donation to CHOP in Sean's name.

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