In an update to a story we brought you earlier this year of an Orange County toddler who's battling brain cancer, doctors now say she has little chance to survive the disease.
Ellie's parents, Richard and Carly Blaine don't know how long she has to live. They said other children with this rare form of cancer called pineoblastoma have lived days, weeks, and even up to two years after leaving the hospital.
Each day, as her cancer spreads, Ellie is showing little sign of being sick or in pain-- she's still living up to her motto of being "princess strong."
As NBC29 visited Ellie shied away from the cameras as she played with her Stitch stuffed animal. Her parents say she's still sassy, still smiling, still the two-year-old they know and love.
"Her attitude, her dimples her smile … she's just a picture of God's grace," said Richard.
"Her spunk. She hasn't lost that at all… she still has a great attitude," Carly said.
When we last met up with Ellie she was at St. Jude Children's Research Hospital battling brain cancer. Her dad was by her side, and we saw her reunited with her mom and siblings Noah and Sarah-Grace who got to visit. Now they're all home.
"It's wonderful to all be in the same house again, but it's hard the circumstances," Carly said.
That's because Ellie's cancer has now spread. "Although her scan showed that she was clear of tumor in her brain and her spine, since then about 4 weeks ago she had another scan which showed the cancer returned and was spreading and starting to cover her brain," said Richard. "They didn't check her spine but it's pretty much assumed that the tumor has spread throughout her spine as well."
Doctors now say Ellie's cancer is terminal. Her parents made the choice to let her live out her life at home instead of in a hospital. "At this point we're just taking God's grace for every single day. We don't anticipate any more but we just love every day that we get," said Richard.
"It's hard, but I think because she's in such a good mood it makes it a lot easier, because you just focus on her energy, her excitement, her smiles for today and then whatever happenstomorrow, happenstomorrow," said Carly. "So far she just keeps on smiling and having a good time and she hasn't shown signs that anything is really bothering her, that she's hurting or anything."
The Make a Wish Foundation sent the Blaine family to Disney World. There's been an outpouring of support from friends, family, and even people they've never met.
"We're grateful for all the help we've received from everyone," said Carly.
Now Carly and Richard are trying to make life as normal as possible for their family of five. They've been left with no choice but to live out each day as it comes instead of focusing too much on the future.
"Richard and I have talked about it a lot because you want to enjoy today, but should you be making plans fortomorrow. Should you be making plans for things to come, what's the next step? If what's expected to happen happens, what's life going to be like? How do we explain all that to Noa? How is it going to affect our family?" Carly said. "But you start thinking and then you just back up and realize it hasn't happened yet. We don't know what's going to happen or when it's going to happen so we just enjoy the laughter and joy today instead of start stressing about two weeks from now, three weeks from now."
The family is relying heavily on their faith to get them through. "It's pretty much in God's hands as far as what he's going to allow the cancer to do," said Richard.
Carly shared what she wants the world to remember about her two-year-old daughter Ellie. "That she enjoyed almost everything. She didn't let other people's opinion's bother her. She didn't have hair and she could care less. She likes to wear skirts all the time. She doesn't mind being a girl but she's also probably one of the...well...the strongest girl I've ever met," Carly said. "Just remember her sweet spirit, her love of laughter her love to dance, her love to just enjoy life."
The St. Jude Give Thanks Walk isSaturdayin Fredericksburg, Virginia. So far Ellie's family has raised nearly $9,000. Click here if you'd like to donate to their team. You can also make a donation to Habitat for Hope in honor of Ellie. For updates on Ellie, visit the family's blog or Facebook page.
Update: Orange County Toddler's Cancer Now Considered TerminalMore>>