Columbia cancer survivors will be feautured in Rose Parade Float
Lexington resident Nick Gilger long remembers watching the annual Tournament of Roses Parade on TV each year before the Rose Bowl college football game in Pasadena, Calif.
“I remember all the way back to ‘The Granddaddy of Them All’ with Keith Jackson and all of that,” said Nick, a Citadel graduate who works for an employee benefits brokerage firm in Forest Acres.
Little did he know those many years ago that one day he, his wife and the couple’s 7-year-old daughter, Edie, would not only be riding on a float in the 2017 Tournament of Roses but that they would also be the inspiration for the float.
Nor did he know that the reason behind the family’s inspiration would be one that would change his life — and theirs — forever.
Like most new parents, Nick and Emily Gilger were overcome with joy when they welcomed their first child — a daughter the couple named Edie. The couple had just moved from South Carolina, where they had met, to Lynchburg, Va.
“She was such an easy baby,” Emily said. “The first four months were awesome. She ate, she slept 12 to 14 hours every night, she smiled. It was right around the five-month mark when we started noticing small, but bizarre, changes.”
Edie began waking every hour and a half screaming, her appetite decreased and she lost weight. “I took her to the pediatrician and told her that I didn’t know exactly how to describe it but I felt like something was blocking her system,” Emily said.
The pediatrician, however, told Emily that Edie just had the stomach flu and to give it time.
“I think we took four trips to the pediatrician and things just weren’t getting any better,” Emily said. “By that point, I just wore her in a Baby Bjorn almost all the time and walked laps around the house because that was the only thing that seemed to comfort her. All the while I just knew something was not right. As a mother I just knew.”
During this time, Emily’s parents drove up for a visit from South Carolina.
“My dad, who’s a doctor, saw Edie and said, ‘I don’t want to alarm y’all, but she looks like she might be a little yellow,’ ” Emily said.
After another weekend of sleepless nights, the whites of Edie’s eyes had become yellow and the then 6-month-old was completely lethargic. Another trip to the doctor was necessary. This time, the Gilgers saw an established doctor in the practice.
“He came in joking and saying, ‘Goodness, somebody’s been eating a lot of carrots and sweet potatoes,’ ” Nick said. “I told him that, no, to that point she had only had one feeding of rice cereal and the rest had just been milk. That’s when his expression completely changed and all the joking around stopped.”
After a physical exam, the doctor noted that Edie’s liver was enlarged and ordered ultrasound scans of the organ the next morning.
But that trip did not provide the reassurance Nick and Emily hoped for.
“It’s never good when you’re about 20 minutes into it and the ultrasound tech starts crying and gets up and walks out,” Nick said.
“We just looked at each other like, ‘What’s going on here?’ ... The anticipation of just not knowing was terrible but nowhere did our minds go as far as they were about to go.”
Edie had a massive tumor on her liver.
The Gilgers were sent that afternoon to the children’s hospital at the University of Virginia, 70 miles north of Lynchburg in Charlottesville.
“At 3:15 we entered the parking garage at UVA that December afternoon,” Nick said. “Edie didn’t leave the hospital until April.”
A long year
After three days of tests and scans at UVA, Edie was diagnosed with neuroblastoma — a malignant tumor or tumors that can run along the tissue that connects the sympathetic nervous system.
“When they first said neuroblastoma, my response was, ‘No — she doesn’t have anything wrong with her brain,’” Emily said. “We just really didn’t know what it was.”
In Edie’s case, the cancer had taken the form of a tumor growing out of her left adrenal gland, a tumor growing out of her right adrenal gland, a tumor on her liver and across her midline that joined together and some tumors growing up her back along her spine and into her chest cavity.
The prognosis was not good.
“They told us to stay off the Internet,” Nick said.
After six months of trying to stabilize Edie’s system and prepare it for chemo, multiple trips to intensive care and installation of a feeding tube, Edie began treatments and eventually had surgery to debulk the tumors.
Finally, when Edie turned 1, the news came that the family had hoped for.
“It was gone,” Emily said. “No trace of it was anywhere.”
But the good news wasn’t to last.
Edie relapsed — not once but two more times. The doctors at UVA finally told the Gilgers it was time to take Edie to a research hospital and suggested Children’s Hospital of Philadelphia.
“When we went there, it was like a breath of fresh air,” Nick said. “It was a new beginning. And that’s when we met Dr. Mossé.”
After one round of treatments that didn’t prove beneficial, Dr. Yael Mossé — one of the nation’s leading neuroblastoma researchers — got Edie in on an experimental trial for a new chemotherapy drug, crizotinib, which was taken orally twice a day.
Edie remembers it well.
“It tasted like rotten something,” she said, nose wrinkled. “We mixed it with Hershey’s syrup, Sprite. I would have a drink ready when I took it. Oh, and M&Ms. But I would rather take it than have cancer.”
The drug and the trial — which was made possible solely through funding from sizeable grants from Alex’s Lemonade Stand and Northwestern Mutual — proved to be a miracle medication for Edie and others on the trial.
Only 28 days after starting it, multiple and extensive scans showed that Edie was cancer-free — no trace of tumors in her system.
“We couldn’t believe it,” Emily said. “It was a miracle.”
That was more than four years ago. Edie stayed on the medicine for several years after the initial cancer-free scans but the cancer never returned and Edie lives life as a normal first- grader in Lexington.
Not on the Yellow Brick Road ... yet
While Edie was doing so well, the Gilgers decided to have another child — despite being warned by doctors not to do so. Emily became pregnant with the couple’s son, Kinsey.
But seven months into the pregnancy, Emily began to experience severe pains in her side and up her back. Thinking it was just kidney stones, she went for an ultrasound and was told her adrenal glands were enlarged.
“It sounded way too familiar to me,” Nick said. “I immediately texted Dr. Mossé, who is like part of our family now and was like, ‘So ... This is what Emily was just told and I just want to see what questions you think we should be asking.’ Within five minutes she was on the phone with me telling me — all business — telling me what tests she was going to order.”
That was a Tuesday. By Friday, with Emily’s pain worsening to the point she could no longer walk unassisted, the tests confirmed the news the Gilgers already knew was coming: Emily had neuroblastoma.
By Sunday, the couple was back in Philadelphia; by Monday, more scans were conducted and Tuesday morning Kinsey was delivered via C-section at 30 weeks.
“They told me if we waited that the cancer could pass to him through the placenta,” Emily said.
After putting Kinsey in the neonatal intensive care unit where he would stay the next nine weeks, Emily began treatment for neuroblastoma with the same drug her daughter had taken.
“This time we felt like we had a silver bullet in our back pocket,” Nick said. “It’s not that we weren’t scared but we felt like we knew we could beat this this time thanks to the drugs.”
Those drugs are what tied everything together, according to Nick.
“If it wasn’t for people like Alex’s Lemonade Stand and Northwestern Mutual, we would never have been able to start the trial with Edie and who knows where we would be today,” he said.
Two and a half years later, Emily is still on crizotinib but she is in remission.
Finally ... everything’s coming up roses
Several months ago, the Gilgers were approached by Northwestern Mutual — the company whose grant to CHOP funded the research trial that save Edie’s life.
As the presenting sponsor of the 2017 Rose Bowl Game, Northwestern Mutual has a significant float in Honda’s Tournament of Roses Parade. This year, the company decided to showcase the company’s commitment to fight against childhood cancer. Since 2012, Northwestern Mutual has contributed more than $12 million to fund more than 130,000 hours of research through its Childhood Cancer Program.
With the theme of the parade set as “Echoes of Success,” the company could think of no better representatives for the float than Edie and Emily.
“The Gilger family is an unbelievable example of strength in challenging times, and we are thankful to be able to tell their story and bring awareness to the need for childhood cancer research at the 2017 Rose Parade,” said Eric Christophersen, president of the Northwestern Mutual Foundation.
Northwestern Mutual first told the Gilgers that Edie was the inspiration for the float’s theme and design. Then, they surprised the family by asking them to be on the float in the parade with Edie as its centerpiece.
“We were blown away,” Nick said.
The float, called “Waves of Hope,” will showcase the care-free joy of being a child — a joy that, for Edie and many other children with cancer, is made possible through funding and research.
Edie will be decked out in fins and goggles and cannonballing into a cresting ocean wave made up of more than 12,000 irises and 10,000 roses and will be surrounded by dolphins made from 300 bunches of lavender sinuata statice. Joining Edie will be her mom and dad, Mossé and a Northwestern Mutual managing partner in Pennsylvania.
This time, it’s dad’s turn to be the patient. He is allergic to flowers.
“He’ll be on a lot of medicine,” Edie said. “We can’t even have one single flower in our house.”
“I have steroid injections lined up to get through it,” Nick said. “But it’s so going to be worth it. It’s going to be fantastic. Just what the float represents in general and especially what it represents in our life. We realize how fortunate and how blessed we are. It hasn’t been easy but it could have been a lot worse. Now we’re at the point where we can share our story and create awareness. And I think it’s a story that needs to be told.”
A rendering of the Northwestern Mutual Rose Parade float inspiredhttps://cone.sharefile.com/d-s8e51535dc9a4887b
Here is a coloring page that local families can color and send to Edie to cheer her on:
(Shortened link to coloring page: http://u.nm.com/2gsOfhE)
About "Waves of Hope"
The float, created in partnership with Fiesta Parade Floats, epitomizes how character is developed through the selfless contributions of others and how success cannot be achieved alone. The highly-whimsical design celebrates Edie’s hope and the joy she feels at being able to be a kid. Highlights include:
* The float’s centerpiece will be a Edie Gilger, decked out in fins and goggles and cannonballing into a cresting ocean wave. Her head will sway from side to side as she takes in the beach scene around her. More than 12,000 iris and 10,000 roses will make up the swirling water.
*Surrounding her will be three dolphins made from 300 bunches of lavender sinuata statice, bobbing and weaving through the floral wave.
* A happy starfish will spin atop its sand castle as the smiling oyster opens its shell to reveal a large pearl. The crab will move its eyes and wave its claw to the crowd, and the pelican will swivel his head and flap his wings as bubbles fill the air.