Ella Grace Fuller gripped her father’s hand as she stared at a quote taped to one of the colorful walls of her hospital room at Children’s Mercy in Kansas City, Missouri.
The quote read, “Fate whispers to the warrior, ‘You cannot withstand the storm,’ and the warrior whispers back, ‘I am the storm.’ ”
Other words of inspiration papered the wall, handwritten on poster board for Ella to see,but the phrase about the warrior held her attention as a nurse changed the implanted ported buried under Ella’s skin.
“Daddy,” she cried, her grip tightening. “I need to learn how to become that.”
“Become what?” Ella’s father asked. Trevor Fuller followed her line of sight.
Trevor looked at his 8-year-old daughter. A hospital bracelet encircled her thin wrist, and tubes of every length snaked around the bed rails, feeding into her tiny body. Her hair was gone now. A wrap covered her head where side-swept bangs once hung. (Ella had insisted on that particular haircut because she wanted to look like her mother.) And despite everything, Ella was squeezing his hand with incredible strength.
“Are you kidding me, Ella! This is fighting … what you’re doing right now. You’ve got this. Keep it up.”
‘IF ANYONE IS GOING TO BEAT THIS, SHE FITS THE DESCRIPTION’
Ella Grace, the tiny fighter, is part of our large REV family. Abbi, her mother, is a sales and marketing coordinator at ElDorado Mobility. She and her husband have been at their daughter’s “ringside” ever since Ella was diagnosed with Nueroblastoma, a type of childhood cancer where immature cells develop into cancer — solid tumors — instead of functioning nerve cells. The cancer usually starts in the adrenal glands, like in Ella’s case. Then, like a ghost, it quietly spreads.
It was a pain in her leg — an ache that started in September — that cued endless doctors visits. After a Dec. 7 trip to the local emergency room, doctors misdiagnosed Ella’s condition as Osteomyelitis, an infection that causes bone inflammation. They performed an emergency arthroscopic knee flush but within weeks Ella’s condition worsened. More doctor visits followed, but with each one, Ella was losing more and more weight.
It wasn’t until the Fullers made the three-hour trek to Children’s Mercy that they finally received answers. She was diagnosed with Neuroblastoma on Jan. 25, 2016. The pain in her leg? A tumor on her femur … and worse, there were lumps everywhere, riddling the inside of her body. Masses on her lungs. Lumps on her liver and kidney. Tumors in her pelvic, neck and skull. Between her ribs. Cancer in her bones. The ghost had even worked its way into her marrow.
Stage-four mestatic cancer, doctors said.
By the end of January, three days after been admitting to Children’s Mercy, Ella was paralyzed from the waist down. Months prior, a tumor had nestled itself near her spine.
“Basically, when you hear that there are tumors all over your child’s body, you come to the conclusion that all you can you do is provide comfort,” Abbi recalls. “But the next morning, they started talking treatment.”
Trevor remembers that day. “They told us there is a 40 percent 5-year survival rate.”
And so Ella’s fight soon began.
Just 8 years old, Ella has endured three rounds of chemotherapy. She has two more rounds to go before two high-dose rounds. In between, doctors rescued healthy stem cells for later immunotherapy. Surgery is planned after the fourth round of chemo, and doctors hope that sometime after the third the tumor near her spine will shrink enough to remedy paralysis. Ella will receive a fifth round of chemo, followed by two high-dose rounds, then radiation. From start-to-finish, treatment will take two years.
But Ella, they say, is up for the battle. She’s the Fuller Fighter.
“After that day when we talked about her being a fighter, it was like she started to fight even more,” the family recounts. Ella has begun cutting her recovery by a quarter of the time. Her stem cell harvest was miraculous. And her unrelenting smile never seems to waver.
“She’s a sassy girl,” Abbi laughs. “She always wants things done her own way, and the doctors tell us if anyone is going to beat this, she’s the girl that fits the description.”
Trevor agrees. “She’s created a supernatural feel around this hospital — a hospital that sees illness every day. I’d be willing to say that it’s probably very rare for a child to create a buzz quite like she has. I’ve never cared to be like any other person. I’ve always been OK with being me. It’s amazing how quick all of that can change. What I see in Ella, I would like to have more of it. Some of it. She’s a true inspiration.”
FAMILY, FRIENDS, CO-WORKERS SHOW ENDLESS SUPPORT
With mounting medical bills, a family of five kids and a three-hour drive separating home from hospital, Abbi and Trevor can’t say “Thank you” enough to the many family, friends and co-workers who have shown support.
“Our town is doing a lot … helping care for our children, depositing money in our bank account to make sure our utilities are paid, doing the little things you don’t think about,” Abbi says. “And Ella loves looking at her Facebook page, seeing that 20 new people want to be her friend.”
In fact, Mindy Kline, the mother of Ella’s friend, Macy, has jumpstarted a fundraising effort — the Ella Grace 5K & Kids Run, complete with its own Facebook page. The two races are slotted for April 30 in Ella’s hometown of Minneapolis, Kansas, with 100 percent of proceeds going toward the family’s medical expenses.
Friends have also set up a GoFundMe account, and so far, 138 people have helped raise $13,880 of the $20,000 goal, which will adjust soon to make the Fuller’s home handicap accessible.
But sometimes, it’s the little things that make a difference. Friends can send Ella a card through the Children’s Mercy website, and small care packages can be mailed to
Children’s Mercy Hospital, 2401 Gillham Rd., Kansas City, MO 64108, 4 Henson Room 36. Ella loves everything from games and crafts. She’s particularly fond of books. (Abbi remembers when she was just 2, and instead of sleeping with stuffed animals, Ella slept with books piled up on all four sides of her bed.)
“My co-workers at ElDorado even gave her a Kindle Fire,” Abbi says. “It’s been a big hit.”
Even the smallest gifts have helped Ella weather the paralysis.
“For a lot of people, losing movement would be a crushing thing, but even though Ella can’t move the lower half of her body, she’s very upbeat. We still have hope that she’ll walk again, but at the same time, working at ElDorado has helped me absorb the shock. That was one of the first things I expressed to Denny, one of my co-workers. I always had empathy for the end customer. It was there before, but it’s magnified now.”
And now, more than ever, the Fullers appreciate the small things in life.
“When Trevor worked at the prison in Ellsworth, an hour from our home, Ella would sit on the counter and help him pack his lunch. As he sliced fruit, he would share bites with her,” Abbi remembers. “And when it was time for him to leave, she would grab onto his leg and try to convince him to stay.”
Sometimes holding on is part of the battle.
TO HELP ELLA GRACE IN HER FIGHT:
Children’s Mercy Hospital
2401 Gillham Rd.
Kansas City, MO 64108
41 Henson Room 36