Community comes together for London

A video pans the empty chairs of Arnold Palmer Children’s Hospital waiting room before it locks on the blue eyes and round face of 6-year-old London Peoples.

“It’s day 23,” he says, managing a strained smile as his mother, Ginger Nader, softly pinches his cheek.

“You only have seven days left,” Nader says from behind the camera over the faint background calls of the hospital’s intercom, stroking the boy’s thinning Mohawk. “Is that exciting?”

“Seven days left?” he says, his voice picks up hopefully, “Mhmm.”

As of May 14, it’s been 23 weekdays that London and his mom have been coming to the hospital bright and early for his radiation treatment, and 23 days they’ve recorded different variations of the same less-than-a-minute-long countdown video.

It’s been 35 days total since their world was turned upside down, when London was diagnosed with diffuse intrinsic pontine glioma (DIPG), a cancerous brain tumor on his brain stem.

On Friday, April 6, London went to kindergarten at Conway Elementary, giggling, running and playing as usual, and on Saturday, April 7, Nader said he was walking into walls, falling out of chairs and having problems operating the right side of his body.

“London’s never sick — he’s never been sick — and all the sudden my beautiful, healthy little boy was falling out of chairs and could barely walk,” Nader said. “It was just that quick.”

By April 9, doctors confirmed that London had DIPG, an inoperable and incurable form of brain cancer the affects an average of 200 children, primarily between the ages of 3 to 6, in the U.S. every year. Three days later he would start radiation treatment to try and temporarily shrink the tumor, as the location of it makes surgical removal impossible and chemotherapy ineffective — with radiation offering only a short-term fix for a devastating diagnosis.

“When I heard, I scoured the Internet for hope, and I really couldn’t find any,” said Cyn Sellards, London’s family friend and manager of All Fired Up paint-it-yourself pottery in Winter Park. “And that’s just not acceptable.”

London’s oncologist, Dr. Amy Smith with MD Anderson – Orlando’s Cancer Center, told Nader a DIPG diagnosis comes with an average eight- to 15-month survival rate with radiation, referring to DIPG as a “uniformly fatal disease.”

Unable to accept that fate for her little heartbreaker and painting pal, Sellards lept into action, conjuring up support from the extended Central Florida community to launch “Love for London,” a support and fundraising campaign for London and his family, hosting multiple events a week across the area.

“It just hurts your heart that these children don’t stand a chance; it’s just unfathomable. I knew I had to try to do anything I could to help,” she said. “I can’t imagine life without him.”

Fighting the same struggle

In her research for Love for London, Sellards came across another DIPG support group for a 4-year-old girl right across town called “Cheering for Caitlin.”

Caitlin Downing of Oviedo faced the same diagnosis as London just three month earlier. Her mother, Denise Downing, said in a span of five days her daughter went from her lively, sassy self to cross-eyed and uncoordinated, much like what happened with London.

Two of the estimated 200 children to be diagnosed with DIPG this year, less than 20 miles away from each other, three months apart.

“It was so dramatic and so fast,” Downing said. “…It’s crazy how much your life can change in less than a week.”

On May 1, Caitlin underwent surgery as part of a phase I clinical trial for DIPG at the Sloan-Kettering Cancer Center in New York.

Downing said the clinical trial’s only goal is to check for any toxic side effects from the procedure, not to treat or cure. But that doesn’t mean both Caitlin’s and London’s family aren’t holding out hope.

“As a parent desperate for a treatment for my child I can only hope that this’ll hit a grand-slam and my daughter will be cured, but I have to know that’s not the goal with this,” Downing said.

London’s mom said they’ll be watching Caitlin’s case closely, as she goes back and forth from Oviedo to New York for follow-up appointments weekly for the next month.

“We’re really hoping that this will be something new that works,” Nader said.

But in the meantime, both families continue to feed off of the support systems their situations have spread for them in and beyond their communities.

All Fired Up in Winter Park held a bake sale, Tim Burton movie night filled with London’s favorite films, and a benefit on Friday, May 11, with 20 percent of pottery proceeds going to Love for London.

Having met London previously at All Fired Up, Lawrence Phillips, president of the Goldenrod Chamber of Commerce, arranged for Scruffy Murphy’s pub in College Park, where his co-worker from United Legacy Bank Mike Scures’ band was playing, to donate part of the night’s proceeds on May 12.

The Goldenrod Chamber blasts out email lists with upcoming local Love for London events.

“It’s one of those stories that just pulls at your heart strings and sucks you in,” Phillips said. “This young kid with this devastating diagnosis, you just have to help.

“…The best part of it all is seeing the whole community coming together for a kid in need,” he said.

London’s wish

For more information about Love for London events and updates, visit Love for London on Facebook or loveforlondon.org. To learn more about Cheering for Caitlin, and her progress since surgery, visit cheeringforcaitlin.com

Over Mother’s Day weekend, Love for London supporters came together organizing trips for London, now relatively symptom free, radiation having temporarily shrunk his tumor. He and his family were sent to the circus and Universal Studios for the first time.

At Universal, London got private meet and greets from all the superheroes and received a signed “honorary super hero” certificate, signed by each of them, that sits on the family’s kitchen table waiting to be framed.

“Superheroes can do the stairs by themselves,” London says, as he makes his way to the second floor of his home to show off his pirate-themed bedroom on his own, a far cry from the wheelchair bound boy the tumor had turned him into a month prior.

London may be bouncing of the walls, running around with his action figures and cracking jokes like normal now, but Nader knows that without further treatment, this normal likely won’t stay. London’s future, absent advances in treatment, rests on the unknown.

But in the present, Nader says, it’s been the unexpected outpouring of community support that has gotten her family and London through the last month of chaos.

“We really love our kids and always only want to do what’s best for them,” she said. “…But I wouldn’t have been able to cope with all of this if I didn’t have all these great people to back me up.”