Reporter: Danner Evans l Videographer: Brian Whitesell
Lynchburg, VA - A little girl from Lynchburg fighting a very rare form of cancer made the pages of the Wall Street Journal. Now we're sitting down with Edie Gilger's parents to talk about their journey and why doctors are so interested in her case.
"She was diagnosed in December of 2009," Emily Gilger remembered. " She was 6 months old."
"The first thing that went through my mind was why her? Why Edie?" said Nick Gilger.
"She had a large tumor, one growing out of her right adrenal gland, one growing out of her left adrenal gland," Emily explained. "They met in her abdomen and she had spots going up her spine."
"That tumor was closing off liver, her stomach and all that so it was kind of just shutting down her body," Nick said. "It was mind blowing to say the least."
It was Neuroblastoma - stage 4. Tiny Edie Gilger spent months at UVA getting rounds of chemo so doctors could operate and take those tumors out in June of 2010.
"It seemed like such a huge thing to us, but it was just the beginning of what we would see over the next year and a half as far as chipping away at the disease that was in her body," Emily said.
"We knew that in the beginning -- multiple surgeries and multiple rounds of chemo -- that sort of thing -- to get through it."
The next scan brought new hope for Edie's family.
"January of 2011 was when she was diagnosed for the first time cancer free," Emily said.
But three short months later Edie's cancer was back.
"I can remember it like it was yesterday," Nick said.
Doctors operated again at UVA to take the tumors out, but they also suggested the Gilgers take Edie to Children's Hospital of Philadelphia in case the tumors came back again, which they did.
"UVA said this is where the cutting edge treatment and medication for children is being researched and prescribed," Emily said. "This is where you need to be."
Children's Hospital of Philadelphia is where they found out that Edie's form of neuroblastoma is genetic. She has a defect in a gene known at ALK. It's very rare. Her parents say of the 600 to 700 kids per year who develop neuroblastoma, only 1-2% have the defective ALK gene.
Doctors gave them two choices: go through chemo or try something new. They had an experimental drug from Pfizer called crizotinib that only 9 other children in the world were taking for neuroblastoma at the time.
When faced with trying the drug or going through another round of chemo -- the Gilgers said the choice was easy.
"We decided here is this drug being put in front of us - nothing any of us had been exposed to before," Emily remembered. "It was a sign we needed to go ahead and take that leap of faith and see what would happen."
What happened is something amazing, something the Gilgers haven't seen in their daughter's short life.
"It's been six months," Emily beamed. "And this is the longest time Edie has gone cancer free."
Edie will likely stay on the drug for the next five years under the watchful eye of doctors in Charlottesville and Philadelphia.
"We're living in the moment with it right now," said Emily. "We are so happy to have her healthy right now that we do think ok, if five years from now something comes up, we'll deal with it when it comes up."
"This is going to be a part of our life for the rest of her life," Nick said. "But she is going to grow up to be a normal every day child. She is going to get in trouble. She is going to make us laugh. She's going to be our daughter."
Finally, a glimpse at a normal life for a little girl who has fought so hard.