They were both diagnosed with neuroblastoma within a few years of each other. However, the ways their cases were discovered were vastly different.
It all started when Edie was only 5 months old. She began to cry all the time and lost her appetite. Her parents, Emily and Nick, took her to the pediatrician a number of times, but he kept telling them it was just a stomach flu, nothing serious.
However, she didn’t get better.
When Edie awoke one morning looking yellow, her parents took her to the children’s hospital at the University of Virginia, where they learned her body was riddled with tumors. The tumors were growing because Edie had neuroblastoma, a type of cancer that produces tumors along the adrenal system in the body.
Over the next six months, Edie went through several rounds of treatment and finally had surgery to remove the tumors. For a while, she was cancer-free, but then the cancer came back a second and a third time.
That’s when the family was referred to the Children’s Hospital of Philadelphia (CHOP) and Dr. Yael Mossé.
“I didn’t think anything could cure her, but I can tell you, as soon as Dr. Mossé walked into the room, I knew we were at the right place,” recalls Emily.
She put Edie on a new chemotherapy drug called Crizotinib.
Edie didn’t care much for the taste of it. “It tasted like rotten something,” she told The State, her hometown paper. But, within 28 days of being on it, she was pronounced cancer-free.
She stayed on the drug for several years just to be safe, but the cancer never returned.
She was seven months into her pregnancy when she stared experiencing shooting pains in her back. Thinking it was kidney stones, she went to have an ultrasound and learned her adrenal glands were enlarged.
The situation sounded all too familiar to Nick. He immediately reached out to Dr. Mossé who, in turn, ordered many tests. Sure enough, Emily had neuroblastoma, just like her daughter. Since Edie’s case was proven hereditary, the likelihood that her mom would also get the disease was high.
Thankfully, the family had already made a connection with a fantastic doctor and hospital. Emily was treated at CHOP by Dr. Mossé with the same medication her daughter had taken.
Today, the family can often be found conducting fundraising events for Alex’s Lemonade Stand Foundation— a nonprofit dedicated to funding pediatric cancer research.
“We’re here now to make an impact on the lives of others,” Emily says.
Despite the fact that cancer is the leading cause of death in children, only 4% of all federal funding for cancer research goes to pediatric cancer. Organizations like Alex’s Lemonade Stand Foundation and Northwestern Mutual are making a concerted effort to make up the difference.
But, of course, the doctors doing the research are the real heroes. There’s a reason the Gilgers consider Dr. Mossé family — she gave them back their future.
Watch Edie and Emily’s whole story here:
Sometimes children can’t advocate for themselves. So that’s why programs like this are so important.
Posted by Upworthy on Friday, September 22, 2017