Charlie's PurposeJanuary 15, 2021
By CHRISTINE STEPHENSON
JASPER — Charlie Schnarr is getting restless after being cooped up in the house.
Brooklyn, his mom, helps stuff him into a coat and furry hat so his head won’t freeze — he lost all his hair after starting chemotherapy — and he runs outside.
After a while, Nick, his dad, decides to check up on him. Many 4-year-olds aren’t allowed to explore outside by themselves. But Charlie knows where he is and isn’t allowed to go, so they trust him.
Nick opens the front door and scans for Charlie, but he’s not there. He walks across the house to the balcony overlooking the backyard of their Jasper home. No Charlie.
“Do you see him out there?” Brooklyn asks.
“Oh, I’ll find him,” Nick says. “He’ll pop up somewhere.”
Nick stands in the balcony entry, halfway inside and halfway outside, contemplating.
“Maybe that’s the moral of this whole story — trust,” he says after a few seconds. “We have to trust each other. We have to trust the doctors. We have to trust God. There’s a whole heck of a lot of trust going on.”
People always say that everything happens for a reason. For some, it grounds them and helps to make sense of the chaos of human life. Others think it’s a dodge, an excuse to allow for so much suffering without even questioning it.
Nick used to say it but never truly believed it until Charlie came along. After watching his youngest child, his only son, go through surgery after surgery, get needles stuck in his chest every week and miss out on parts of being a normal kid, there has to be a purpose for it all, he thinks.
There’s a reason Charlie is stronger than his parents or pretty much any adult Nick knows, he says. There’s a reason Charlie is still alive.
He’s still got more to give.
“There he is,” Nick says, peering over the balcony at Charlie. He was there the whole time.
Since before Charlie even came into the world, the Schnarrs have prepared for the worst. But no one was expecting that phone call last November.
Nick isn’t much of a crier, but when he heard Brooklyn on the phone across the house, wailing, he couldn’t help but to break down.
Doctors had found a tumor the size of an egg-and-a-half connected to Charlie’s diaphragm. When they removed it, they reassured the Schnarrs it was benign but had to send it to pathology as protocol.
“Not one single person used the C-word,” Nick said.
Then they got the call. Charlie was diagnosed with rhabdomyosarcoma, a rare type of cancer that forms in the soft tissue. It accounts for about 3% of all childhood cancers, according to the American Cancer Society.
This began the second saga of Charlie’s life, as Nick puts it. The first began before he was even born.
When Brooklyn was pregnant with Charlie, doctors found that he had hydrocephalus, or an excess of fluid in the brain. He’d likely need immediate chest compressions and a ventilator as soon as he was born and probably wouldn’t be able to crawl, walk, speak or smile if he didn’t die.
Nick and Brooklyn spent more time with palliative care than any other doctors.
Instead, when Charlie was born, he came out screaming — the sign of a healthy newborn — and went home a week later. Doctors and nurses coined him their “miracle baby.”
Charlie still endured several surgeries, including brain surgery when he was 8 weeks old that left him with a scar that wraps around the side of his head. But for the most part, he got to live like a normal kid.
Doctors found Charlie’s cancerous tumor during a routine checkup for the hydrocephalus last September.
“Would we have caught the cancer too late if it wasn’t for that? I don’t know,” Nick said. “In a weird way, it was kind of a blessing.”
So far, Charlie has had seven surgeries, including three cancer-related surgeries in November, and does chemotherapy at Cincinnati Children’s Hospital Medical Center every week.
One of the hardest parts for Nick and Brooklyn is watching the doctors stick needles in the port in Charlie’s chest, which helps inject medicines into his bloodstream.
“He looks at me like, ‘Why are you doing this to me? Why aren’t you protecting me?’” Nick said. “You can’t take it for him, otherwise you would, as a parent. So the only thing we can control is making sure that he gets the best care that we can provide him.”
Charlie has two sisters, 6-year-old Lily and 10-year-old Sophie. Nick said he and Brooklyn try to be as honest with them as possible about Charlie, because not knowing is the scariest part.
One time, Lily asked her dad if Charlie was going to die. He said yes.
“We’re all going to die someday,” he answered. “But is he going to die from this? No.”
One day, when Nick, Brooklyn and Charlie were on their way back from Cincinnati after another round of chemo, they got stuck behind a semi accident. When Brooklyn called the Kentucky State Police for an update, they said to prepare to sit in traffic overnight.
“At first, we were both obviously irritated,” Nick said. “But then (Brooklyn) looked at me and said, ‘You know what? This is not the end of the world. We’re here with Charlie. We’re together. We’re safe. Let’s just make the best.’”
For eight hours, they sang songs and played games while waiting for traffic to clear. In the end, Brooklyn and Nick agreed that they enjoyed the uninterrupted time spent together.
“I’m not one of those weirdos that say something like this changes your life,” Nick said. “But it does make you look at certain things in a little bit of a different light and focus on what’s truly important.”
Often, the trauma of something like cancer can put strain on families or sometimes even tear them apart. But the Schnarrs feel stronger now than ever before.
Especially in recent weeks, when the family has been quarantining together because of the pandemic, they’ve done everything together.
Every week, they squeeze onto a massive beanbag chair for a movie night. For Sophie’s 10th birthday in December, they hiked in the woods and had a weenie roast together while she couldn’t see her friends.
When Charlie’s hair started to fall out in chunks, Nick shaved both their heads so he wouldn’t have to go through it alone.
Sophie and Lily are the unspoken heroes of Charlie’s situation, Nick said.
“They’ve been amazing, the way they’ve just jumped on board and been supportive,” he said. “They’re so protective of him.”
Every so often, Nick gets upset and wonders why his family has to endure so much. Usually, though, everyone is too busy living life to really sit and think about it.
“You know when you’re driving, and you’re like, ‘I can’t even remember the last 20 miles?’” he asks. “You just go, and you just do it.
“People say, ‘Oh, you must be exhausted.’ And you say, ‘I don’t even know if I am.’”
Nobody knows Charlie quite like Brooklyn and Nick do, so they’ve noticed him losing weight and getting tired more easily. But if a stranger met Charlie on the street — and if he was wearing a hat — they’d likely never know he has cancer.
Although the outdoors is his happy place, Charlie will still run around inside until he’s out of breath, like many preschoolers do. He loves trucks and excavators the most, but he plays with his sisters’ Barbie camper, too. He loves to sing, and if he doesn’t know the lyrics to a song, he’ll just make them up. He sometimes says things that only Brooklyn and Nick can understand, and he’s best friends with the family dog, Katie.
When Charlie prays at night, he always lists off the members in his family he’s thankful for: parents, sisters, cousins. Every night, the family sings “Tomorrow” from the musical “Annie” before he goes to sleep.
Charlie has at least 20 weeks of chemotherapy left. His family hopes he can return to preschool at Holy Trinity Catholic School in the fall.
Every good parent thinks their child is going to be extraordinary when they’re young. But more than just the Schnarrs think that about Charlie.
This Christmas, Charlie got cards from people the Schnarrs didn’t even know. A few weeks ago, a stranger recognized Charlie and told the family they are not fighting the cancer alone — “Jasper is fighting it with you,” she said.
“Every single person says, ‘Man, Charlie is here for a reason, and he’s going to do something special,'" Nick said. “And I don’t think there’s any other explanation for all this, right?”
Brooklyn and Nick are smart, though. They know, statistically, what could happen. They don’t just tell themselves Charlie is going to beat cancer just to comfort themselves, though — they really believe it, and they won’t accept any other option.
“I’d never imagined that we’d be in these types of circumstances,” Brooklyn said. “But still, I’d rather have it this way and be this happy with them than I would otherwise.”