Navigating Social Media Complicated When Your Child Has Cancer

By Stina Sieg
Published: Friday, August 28, 2015 - 11:41am
Updated: Friday, August 28, 2015 - 3:47pm
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(Photo by Stina Sieg - KJZZ)
When life deals you the worst hand, what do you say about it online? Atticus VanSlyke's parents have been navigating that question since their baby boy was diagnosed with cancer last October.

If you see Atticus VanSlyke on YouTube, you see a happy, cuddly toddler who loves books like “Where’s Baby’s Birthday Cake?”

“Is it behind the wrapping paper?” asks his dad, Krys VanSlyke.

“No!” Atticus squeals, smiling and pawing at the colorful pages.

But that video is a few months old, and it’s not the full story.

Today isn’t a good day for Atticus, who’s coughing loudly in his father’s arms at Phoenix Children’s Hospital. Atticus has been in and out of hospitals for 10 months, since he was diagnosed with neuroblastoma at a year old.

VanSlyke remembers a moment in that hectic, overwhelming day when a question came up between him and his wife Melissa that surprised them both: What were they going to post about this?

“That’s so crazy that that crosses your mind in that moment,” he said. “But it’s like, we know that there’s people who are going to want to know what’s going on.”

And they wanted them to know, even if they didn’t know what to say.

“How do you communicate that?” VanSlyke asked. “What do you share?”

They’re still figuring it out every day on their Facebook group, Atticus Updates. It’s closed, so the VanSlykes have to approve each new member. That keeps it small, less than 1,000 people total — mostly friends and friends of friends.

Even with that intimacy, there are still downsides to being public with their pain. Like unhelpful comments.

If you know a cancer parent, “you don’t need to bring up a concern about treatment to them, because they’ve already gone through the pain and the anguish of impossible this-or-that scenarios,” Krys VanSklye said.

But even with the occasional platitude or moment of backseat parenting, there’s also beauty to being online. Not only has it helped them raise money — tens of thousands of dollars — but also a momentum of hope.

Even if Atticus is having a rough day, “when he perks up, that’s when we’re going to take a picture, and that’s what we’re going to share,” Van Slyke said. “And we’re going to say, ‘Today was rough, but he is still a fighter, and he is still himself, and he is still amazing.’”

Tracy Floyd knows that mix of reality tempered with hope. For two years, she chronicled her teenage son’s cancer fight on the Facebook page Nick’s Epic Battle To Defeat Osteosarcoma.

“It kept me in check,” Floyd said.

That’s because she couldn’t get lost in her own sorrow. She owed that to the more than 50,000 followers. 

“So it kept me positive, which kept Nicholas positive,” Floyd said. “He didn’t need a mom that was crumbling. He needed a mom that was ready to fight with him.”

He got that. And because of his huge and public online following, Nick got pretty much whatever he wanted, including a girlfriend he’d liked in since sixth grade. 

It was a “rock star exit,” Floyd said, and she regrets nothing. 

But the VanSlykes have shied away from celebrity status. They’re happy with their tight-knit group. Krys VanSlyke imagines telling Atticus one day about these people who came together and loved him.

“And I don’t know what that’s going to mean for him,” he said. “But, I hope that he lives from a place of gratitude and generosity because of how the community has cared for us in this time.”

But one day after this interview, Atticus suddenly stopped breathing. A scan showed the cancer had completely consumed his brain. He died at 3:01 a.m.

At 3:49 a.m., his parents shared the news on their Facebook page, which quickly morphed into a living memorial of photos and poems and video tributes. It’s still going. His mother wrote this week: “We are so grateful for all of you.”

Atticus’ memorial service is Saturday. And everyone in his Facebook group is invited.