Lily Haven Cook wanted to be an angel for Halloween.
But instead of dressing in white and trick-or-treating on that day, the 10-year-old Grand Junction girl wore a hospital gown and there were no treats.
It seemed like a nasty trick.
That was when Lily was diagnosed with Febrile Infection-Related Epilepsy Syndrome or FIRES. It’s a rare condition affecting about 1 in a million children, according to the Epilepsy Foundation at epilepsy.com.
During the past three months, Lily’s family members have been split between Salt Lake City, where Lily is in a medically induced coma at Primary Children’s Hospital, and their home in Grand Junction.
It has been difficult both emotionally and financially, and friends and extended family are organizing an online silent auction on Feb. 18–20 to help.
“If this is all we can do then this is what we will do,” said Missy McNeely, one of the organizers of the silent auction.
‘WE DON’T KNOW’
FIRES has no cure and no established treatment.
The hallmarks of an onset of FIRES include a previously healthy child developing a high fever. As the fever subsides, seizures begin and are nearly continuous for a time, according to the Epilepsy Foundation.
In Lily’s case, a fever spiking to 105 degrees came a little more than a week before Halloween.
Health providers thought Lily likely had COVID-19 and did a test, recommending her mother, Claudia Cook and her husband, Garrett Cook, give Lily some Tylenol and monitor her closely.
The evening before Saturday, Oct. 24, Lily’s fever was gone, and her negative COVID-19 test showed it was not the culprit. The Cooks thought the worst was over.
But when Claudia went to wake up her daughter on that Saturday morning, Lily was having a seizure and since then the seizures haven’t stopped.
“She’s still continuously seizing. One every five to 10 minutes and they last 30 seconds to 1½ minutes,” said Claudia Cook in a recent phone interview from Salt Lake City’s Primary Children’s Hospital.
Lily has been in a medically induced coma since Oct. 26. Her prognosis is “we don’t know,” Cook said. “And they (Lily’s doctors) won’t give a best case (scenario) because we don’t know.”
‘THEY JUST MISS HER’
Lily loves mermaids and she likes Captain Underpants and Junie B. Jones books. She likes to pretend she’s running a kitchen and will take her parents’ food orders and “charge us a million dollars for a cup of coffee,” Cook said.
She has two younger sisters: Zoey, 5, and Addison, 7 months.
She is a girlie girl with a bit of a tomboy streak, and “she was just starting to get into soccer when all of this happened,” her mom said.
Most of all, though, Lily loves school.
Lily is one of those students who is excited to be at school every day, said Megan Hill, Lily’s fifth-grade teacher at Lincoln Orchard Mesa Elementary School.
Lily was constantly giving Hill pictures she had drawn. “I have like a wall of Lily pictures in my classroom,” Hill said with a laugh.
When Lily wasn’t at school day after day and the holidays approached, her classmates began asking questions. Some of them had been Lily’s friends and classmates since first grade and they wanted to know where she was.
Eventually, Hill, the school principal and the school counselor gathered all three of Lincoln Orchard Mesa’s fifth-grade classes and told the students what they could about Lily. “We didn’t want to scare them, but we also wanted them to know that it was serious,” Hill said.
Lily’s classmates drew pictures and signs that now decorate Lily’s hospital room, and they recorded videos to express how much they miss her, even though they knew she couldn’t see any of it.
Hill enlarged a photo of Lily as big as she could get it, and students have taken it with them out to recess.
“They just miss her so bad,” Hill said. “It was their way of coping.”
Lily’s desk stands empty, waiting for her to come back, and nearly every day a student asks for an update. Unfortunately, there isn’t always an update to give, “which is hard for them to understand,” Hill said.
NEVER LOSING TRACK
Cook flew with her daughter to Salt Lake City in October and has stayed. She was able get an apartment through the Ronald McDonald House Charities, but she pretty much lives at the hospital.
Sometimes with all the tests and treatment she loses track of time. She never loses track of Lily, though.
“I have a hard time just leaving the hospital,” she said.
She had to leave her job with Office Outfitters & Planners, and the separation from her husband and two younger daughters has been incredibly difficult. They FaceTime every day, she said.
Garrett Cook continues with his job with the U.S. Postal Service and is trying to save as much of his vacation time as possible for the day when Lily wakes up, Claudia Cook said.
The couple has relied heavily on Garrett Cook’s parents to care for Zoey and Addison.
“(Zoey) is 5, so she’s going to process things like a 5-year-old. We just tell her that (Lily’s) brain is really sick and she sleeps a lot,” Claudia Cook said.
But while young, the kindergartner is aware of the serious nature of her sister’s illness.
Garrett Cook and the girls visited Claudia recently and as the family drove past a cemetery, Zoey spoke up, “I don’t like those. They remind me of Lily.”
“I think she thinks Lily’s not coming home, so that’s really hard,” Claudia Cook said.
‘IT’S TRIAL AND ERROR’
Lily’s team of physicians has tried a number of different medications to bring her seizures under control, but with limited success.
FIRES is slightly different for each person who has it and “it’s really hard to get an action plan for how to treat it,” Cook said. “It’s trial and error to see what works.”
To complicate things, Lily has a gene expression that makes her resistant to non-seizure medication.
“We’ve reached kind of a wall in that we’ve done all that we can do,” Cook said.
Lily’s physicians want to transition her from the pediatric intensive care unit to a neurotrauma unit as they wait “until her brain says, ‘I’m done constantly seizing’ or her brain says, ‘I’m just done,’” Cook said, sadness mixing with the weariness in her voice.
MRIs have shown significant damage to Lily’s brain from the seizures, but exactly how that will impact her won’t be known until she wakes up. Kids have amazing brains and Lily could wake up and her deficits may not be as bad as we’re expecting, Cook said.
Lily could have a few or a great many physical and mental setbacks, however most children with FIRES “basically start over. I would basically have a 10-year-old newborn,” Cook said.
‘A LONG, LONG ROAD’
While much is uncertain with Lily, her family and friends are planning an online silent auction Feb. 18–20 on Facebook to help Lily’s parents financially.
Claudia and Garrett Cook “are people who would never ask for help,” said Missy McNeely, who is one of the organizers of the silent auction, which can be found at bit.ly/39OU9IV.
“It’s going to be a long, long road, unfortunately,” McNeely said.
The silent auction includes packages with nights at the Red Cliffs Lodge or The Gonzo Inn near Moab, Utah, a night at Two Rivers Winery & Chateau on the Redlands, and gift certificates to local businesses including Palisade Brewing Co., The Feisty Pint, No Coast Sushi, Enstrom Candies and many others.
This fundraiser is the latest in a number of other efforts over the past three months to help Lily’s family.
A friend printed T-shirts with a mermaid drawing by Lily and sold the shirts to support the Cook family. Megan Hill, Lily’s teacher, did a fundraiser through her LuLaRoe business.
A mom who read a letter about Lily sent home from school created “Strong Like Lily” T-shirts and stickers to sell with proceeds going to the family.
There also is an ongoing Go Fund Me fundraiser at gofundme.com/f/lily-haven-medical-emergency.
“Lily is just the best kid, and it’s not fair that it’s happening to one of the best kids in the whole wide world,” Hill said.