After getting tucked into bed one night, nine-year-old Emilie Gibson told her father Trey that she had a “bucket-list” item.
Emilie, who was fighting for her life after being diagnosed with a rare pediatric brain cancer, wanted to be a queen on a Mardi Gras float.
Emilie got her wish in 2017, riding on a Highland Parade float dressed like a pirate with her older brother Alex.
The spunky daughter with her “sparkly rainbow unicorn-loving sense of style” battled for 13 months against Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive form of brain cancer which has no cure.
Emilie passed away on Halloween Night in 2017 just four months after her 10th birthday.
But a question she asked before the Highland Parade is part of what carries her legacy on.
“She and I were hand-in-hand walking to go look at all the cool floats (before the 2017 Highland Parade), and she asked why there isn’t a childhood cancer float?” said Trey Gibson, an LSUS instructor in the arts and media department. “Ok, well I guess we’re going to have to make that happen.”
It did happen, starting with the 2019 Highland parade.
Gibson, his wife Candi and an incredible support team that includes fellow debate coaches A.J. Edwards (LSUS) and Bob Alexander (Bossier Parish Community College) will enter floats in their fifth Highland parade this year.
Attendees to the Feb. 11 Highland parade will see two floats – a castle and a pirate ship – that were born out of Emilie’s desire to see childhood cancer represented.
Each year, children fighting their own cancer battles ride on the floats and toss beads and other throws to the crowds lining the historic Shreveport neighborhood’s streets and yards.
“The Highland Parade is the most special event because it was Emilie’s idea, it’s her contribution,” Gibson said. “Emilie got to have a ton of people yelling and celebrating her.
“We want to give these kids an opportunity of a lifetime to have a bunch of people yell and celebrate them. This day is such a bittersweet day because you have tough memories of Emilie, but on the other hand, the kids look like they have so much fun on the floats. We’re pushing her legacy forward.”
After Emilie’s passing in late 2017, there wasn’t enough time to prepare for the 2018 parade.
The childhood cancer float started in 2019 with a friend’s truck and a canopy with an “incredibly precocious 5-year-old” who had one of her eyes removed because of cancer.
“Apparently she had a rocket arm, and she’d grab the beads and chuck them as hard as she could at people,” Gibson said.
Foster-Somerled Construction helped build the castle float for 2020, which is able to accommodate more kids and their families.
With the 2021 parade cancelled because of COVID-19, Gibson and Co. expanded the castle float and added a pirate ship float.
Typically operating on borrowed trailers, the crew now have their own trailers complete with a blow-up dinosaur and unicorn.
This year, Boy Scout Troop 100 out of Bossier City is building a canopy for the float in case of inclement weather.
Gibson fondly remembers another rider who threw beads as fast as he could to the waiting crowd.
“I looked at him and said, ‘Hey, why don’t you slow down a bit? We want to make sure we have throws for the end of the parade,’” Gibson recalls. “He said, ‘But I want everybody to have a bead.’
“You know what, you throw as many beads as you can. To see that expression in a kid, all of it brings tears to my eyes partially because of Emilie, but also because it’s such a neat event.”
THE CURE STARTS NOW
A competitive swimmer, one of the phrases on Emilie’s shirt during the 2017 Highland Parade was “Just Keep Swimming.”
The Gibsons started the “Fight Like Emilie Foundation” to help raise money and awareness for childhood cancer research.
But parade-goers will see something new on the childhood cancer floats this year – a QR code on the side with the ability to donate to the childhood cancer research organization The Cure Starts Now.
Gibson’s organization decided to morph the foundation into a chapter of The Cure Starts Now after partnering and donating to that national group for a couple of years.
Gibson’s chapter will be the first in Louisiana and one of nearly 50 around the world (most in the U.S.).
“The Cure Starts Now is making such huge strides in terms of research because they take an entrepreneurial approach,” Gibson said. “When Emilie was sick, we experienced that some doctors and pharmaceutical representatives weren’t communicating within their groups or with each other.
“But with The Cure Starts Now, we saw 200-something participants at a conference all sharing their research in its infancy, before anything was published or before firm results were obtained. They were collaborating, and that’s a complete (180-degree-turn) from the atmosphere around this research when Emilie was diagnosed (in 2016).”
Proceeds donated via the QR code will go toward The Cure Starts Now Krewe of Emilie, which will help offset costs to continue to participate in the Highland Parade.
Donations can also be made via the Louisiana chapter of The Cure Starts Now to contribute to the national organization’s cancer research.
The Cure Starts Now created a registry of DIPG patients complete with tissue samples, genetics, MRIs and other records.
That registry yielded a particular histone (protein that structurally supports chromosomes) mutation found in glioma patients, one of the key elements in driving DIPG.
Speed is imperative when dealing with DIPG, with a prognosis of nine to 12 months after diagnosis.
Childhood cancer research already faces uphill battles in funding and clinical trial approval.
Just four percent of federal cancer research funding is allocated to childhood cancer, which creates difficulties in attracting doctors and researchers to work toward cures.
Trials for new drugs typically must be approved in mice and go through several phases of adult trials before reaching children trials.
But with DIPG being almost exclusively a childhood disease, organizations are working toward acquiring a waiver and other legislative actions to bypass adult trials.
“There was basically no progress made in DIPG research for about 55 years, dating back to (the astronaut) Neil Armstrong’s daughter Karen who died in 1962,” Gibson said. “But since Emilie was diagnosed, we are seeing progress being made.
“Brain cancer could hold the link to curing all cancer because researchers think DIPG is born from the stem cells in the womb.”
EVENTS YEAR-ROUND
While the Highland Parade is the crown jewel of the annual event calendar, Gibson’s chapter of The Cure Starts Now will hold a variety of events throughout the year.
A social media fundraising campaign around Emilie’s birthday on June 15 and a golf tournament in September to honor Childhood Cancer Awareness Month are other key events locally.
Gibson welcomes raffle items, sponsors, or ideas for any of the events.
In November, The Cure Starts Now participates in a “Giving First” fundraiser.
Instead of “Giving Tuesday,” which follows the retail boons of “Black Friday” and “Cyber Monday,” a “Giving First” event comes before all of those days.
“Their idea is that kids should come first, and last year they raised about $900,000 from social media and a digital telethon,” Gibson said. “They put on a great show, and each chapter including ours will be a part of that.”
To visit Louisiana’s chapter of The Cure Starts Now, click here.
To contact the local chapter, email [email protected] or call 318-642-5272.