CHARLOTTE, N.C.--Ellie's face was the one everyone knew. The huge blue eyes. The big smile. It was the face of--the reason for--an online community that rooted and prayed as 8-year-old Ellie Potvin battled cancer for 2 years.
But her mom Amy Potvin was the spokeswoman--the person behind the Twitter account and the websites that told Ellie's story. She was the chronicler of a journey that captivated thousands of strangers. (To date, the online journal she kept at caringbridge.com has gotten more than 2 million hits. "LiftUpEllie," the Twitter account Amy updates, has 27,638 followers.)
"I wanted people to know who Ellie was," Potvin explained, in an intimate interview with NewsChannel 36 Tuesday. "It wasn't anything planned. Cancer wasn't planned."
Potvin said she first reached out shortly after Ellie was diagnosed with stage 4 Rhabdomyosarcoma, a rare pediatric cancer, in July 2008. She emailed friends and colleagues, asking for prayers; Ellie got more than 1,000 emails at the hospital. She then began blogging on a website that connects families with cancer, partly as a way to keep friends up to date without the exhausting work of telling the story over and over again.
"I just started writing. I found it very therapeutic for myself," she said.
From the beginning, she welcomed, even asked for, the support of strangers. Her journals were intensely personal, explaining in detail Ellie's suffering. When she died, Amy tweeted the news just seven minutes after her daughter passed away: "Ellie gained her angel wings at 11:35 a.m. and rests in my arms."
"I saw how it was affecting people. As the journey became tougher, I had already made a commitment to these people who had become like family to us," she explained.
It helped that it was something to do against enormous odds. Rhabdomyosarcoma nearly always kills. The Potvins were determined to remain positive from the moment a lump on Ellie's pelvis was diagnosed as cancer.
"I went into her, and I said 'Honey, we found what was wrong, and the name of your booboo is cancer.' And even at 6 years old, you're so smart, and she said, 'Mommy, am I going to die?' And I said, 'Only God knows when we're going to die, but we're in it to win it," she recalled.
Ellie did go into remission in 2009, but the cancer returned.
"There is nothing," she said, choking up with tears, "...there is nothing harder than watching your child suffer and be in pain and not being able to give them the simple joys in life. That's hard work."
The online journal detailed it all, recording the lows and also the highs. "Sometimes, you have to find the blessings," Potvin said. "Hopefully with all that we learned from Ellie, we can help [people] learn to look up."
Even with Ellie gone, Potvin's positivity and faith is striking, "I'm never going to be whole again -- she was a part of me -- but I know she's okay."
She talks now on the blog and on Twitter about how Ellie won, and how Ellie is healed. She told NewsChannel 36 she knows now is the time to take their movement to the next level.
"How can you not continue to want to fight for her and raise awareness of pediatric cancer, and help other families and help other children and help this world see what's really important," she said. "We already had big plans of how we were going to reach out...We always said as soon as Ellie was healed, then we would start, and Ellie is healed. She may not be healed on Earth, but there is no doubt my mind that that spirit is flying around the heavens having a blast."
They actually formed the Lift Up Foundation just a month after Ellie was diagnosed. They will start working in earnest now to raise money to raise awareness of pediatric cancer and to assist families with the financial burdens it creates.
Potvin is also looking into turning her online journals into a book. A portion of the proceeds would go towards the LIft Up Foundation.
"it's just an honor to be her mom, and i just want to honor her life," Potvin said.