The Uniting Power Of Sharing Patient Progress Online For those who are ill, Facebook helps friends and family keep up with a patient's progress. But when that patient is a very ill child, the challenges of how to navigate social media are different.
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The Uniting Power Of Sharing Patient Progress Online

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The Uniting Power Of Sharing Patient Progress Online

The Uniting Power Of Sharing Patient Progress Online

The Uniting Power Of Sharing Patient Progress Online

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For those who are ill, Facebook helps friends and family keep up with a patient's progress. But when that patient is a very ill child, the challenges of how to navigate social media are different.

RACHEL MARTIN, HOST:

When someone is seriously ill, it happens a lot now that friends and family share updates on their loved one on social media. But when that patient is a child, a child with a life-threatening illness, there are more complicated decisions to make about how much private pain a family should share. Stina Sieg of member station KJZZ in Phoenix brings us this story of one little boy.

STINA SIEG, BYLINE: If you see Atticus VanSlyke on YouTube, you see a happy, cuddly toddler loves books, like "Where's Baby's Birthday Cake?"

(SOUNDBITE OF YOUTUBE VIDEO)

KRYS VANSLYKE: Is it behind the wrapping paper?

ATTICUS VANSLYKE: No.

KRYS VANSLYKE: No, those are my party friends. Yeah.

SIEG: But that video was a few months old, and it's not the full story.

(SOUNDBITE OF YOUTUBE VIDEO)

KRYS VANSLYKE: Don't fight me. Don't fight me buddy.

(SOUNDBITE OF COUGHING)

SIEG: This isn't a good day for Atticus, being cradled by his dad, Krys VanSlyke, 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. Krys remembers a moment in that hectic, overwhelming day when a question came up between him and his wife, Melissa, that surprised them both - what are we going to post about this?

KRYS VANSLYKE: That's so crazy that that crosses your mind at that moment, but it's like, we know that there's people who are going to want to know what's going on

SIEG: And they wanted them to know, even if they didn't know what to say

KRYS VANSLYKE: How do you communicate that? What do you share?

SIEG: They're still figuring that out every day on their Facebook group Atticus Updates. Krys and Melissa have to approve each new member, which keeps it small, mostly family, friends and friends of friends. Even with that intimacy, there are still downsides to being public with their pain, like unhelpful comments. Krys says if you know a cancer parent...

KRYS VANSLYKE: You don't need to bring up a concern about treatment to them because they have already gone through the pain and the anguish of impossible this or that scenarios.

SIEG: There's also beauty to sharing online. The page has helped them raise money - tens of thousands of dollars - and also a momentum of hope. Krys says that even if Atticus is having a hard day...

KRYS VANSLYKE: When he perks up, that's when we're going to take a picture and that's what we're going to share, you know? And we're going to say, today was rough, but he is still a fighter and he's still himself and he's still amazing.

SIEG: There's a genuineness to what the VanSlykes are doing, and they're being embraced by a tight-knit, online community. Krys imagines telling Atticus one day about these people who love him.

KRYS VANSLYKE: I don't know what that's going to mean for him, 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.

SIEG: But one day after those words, Atticus suddenly stopped breathing. A scan revealed the cancer had completely consumed his brain. He died within hours, a few weeks shy of his second birthday. Hundreds came to the memorial service. In an online video of that day, Mom Melissa smiles and says she's amazed at the hearts her baby touched.

(SOUNDBITE OF VIDEO)

MELISSA VANSLYKE: Doctors, nurses, lawyers, teachers, coaches, baristas, cousins.

SIEG: So many types of people, she says, but their differences don't matter.

(SOUNDBITE OF VIDEO)

MELISSA VANSLYKE: None of that matters. What brings us all together is that if only for a moment we were able to be united in love for this beautiful boy.

SIEG: Online they still are. Atticus's Facebook page has become a living memorial of photos and poems and musical tributes, with new posts every day. For NPR News, I'm Stina Sieg in Phoenix.

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