An in-depth profile on a local child and her battle with leukemia documented through the Beads of Courage program.
Fernie mom strings together beads of courage
Lily Earl is four-years-old. She is lively, excitable, loves freezies and My Little Pony. She also has leukemia.
Diagnosed with acute lymphoblastic leukemia when she was 28 months old, Lily has endured hundreds of rounds of chemotherapy, lumbar punctures and visits to hospital rooms.
Seeing her in her living room, playing with her mom’s iPad and shoveling chocolate pudding into her mouth, you wouldn’t be able to tell that a disease afflicts her.
In November 2012, during a routine check up, doctors in Fernie noticed an abnormality with her blood.
“The doctors called us later that night,” said Sheri Earl, Lily’s mom, “and told us to go to Calgary first thing in the morning and to pack for 10 days.”
The Earls only packed for two, not suspecting that the doctors at the Alberta Children’s Hospital would tell them that Lily had leukemia.
“The E.R. nurses were bawling when the doctor gave us the news,” said Earl. “They said, ‘We had such high hopes for you guys’.”
Lily was transferred to the oncology department where she spent the next two weeks undergoing bone marrow aspirates and chemotherapy injected into her spine to prevent the leukemia from crossing over into her spinal fluid and central nervous system.
After another fortnight spent in Calgary to get Lily into remission, the Earls were permitted to come back to Fernie.
Since then, Lily takes an oral chemo once a day, another oral chemo consisting of six pills once a week, once a month she gets chemo in her port in Calgary and then once a month she gets a five-day run of steroids orally.
“Think of steroid rage in a toddler,” said Earl with a laugh.
Earl talks about bringing her daughter home from the hospital, three days before Christmas, as “worse then bringing home a newborn.”
She laughs now, looking back, at the memory of her and Lily getting the stomach flu together on Christmas Eve.
“It isn’t that I don’t remember the dark days or that I’ve forgotten,” explained Earl, “but they’ve faded.”
To help remember everything that Lily has gone through, Earl recently joined the Beads of Courage program.
“I had thought about doing it for two years but knew that while I was undergoing that process and those dark days that I wouldn’t be able to have time for that,” said Earl.
But now, she thinks it will be a good keepsake for Lily and a testament to her brave journey to beating cancer.
Earl pored over what she calls ‘the cancer binder’ — a collection of every treatment schedule and hospital stay Lily endured — for days.
“I had to figure out everything from the last two years and the numbers astonished me.”
Ninety-two black glass beads clink together and slide on the line that spools them along. Those beads represent intravenous injections to Lily’s arm and the port surgically implanted in her chest.
Twenty-two more beads for lumbar punctures, 28 more for nights spent in hospitals, 21 for days
spent in isolation due to fevers or infection, 55 for outpatient clinic visits or oncology check ups. Others more still make up the long string of treatments Lily has undergone.
“Everyone has beads in their pockets,” said Earl. “The nurses, the receptionist, the oncologist. When she’s done with a certain thing they’ll just pass her a bead.”
Looped on the string are also some very special beads. Her name, spelled out on large white beads. A fish, to represent her travelling a long distance to get the care she needs. An apple, to mark that she began school during treatment. A wooden face with a flower in its hair to symbolize the locks she lost from chemo. Most significantly are two beautifully ornate beads that each represents 100 chemo treatments.
“She’s part of the 200 club,” said Earl.
At one point, Lily interrupts to ask her mom if she can watch Finding Nemo.
Earl promises afterwards that she can.
She explains later on that to a lot of cancer kids and parents, a prominent quote in the film to “just keep swimming” has become a sort of mantra for them.
“It’s just what you have to do,” said Earl.
Right now, Lily is swimming towards her purple heart, the final bead that will represent the end of her treatment.
Earl said it’s important to let the community know how dire funding is for pediatric cancer through a post she had written on the Lily Earl Facebook page.
“I wanted to write that post on the last day of Pediatric Cancer Awareness month to show how much these kids need support,” explained Earl. “Only one penny of research goes towards these kids per dollar raised of cancer research.”
For now, the Earl family has a routine when it comes to dealing with Lily’s illness.
“You almost have to have some kind of humour to get through it,” said Earl. “With the gravity of the years worth of treatment that we’re faced with … you wonder how life is ever going to be normal. But it becomes a new normal.”
Family vacations have been piggy-backed onto trips to Calgary for Lily’s treatment. Waterslide parks, a hike up to the top of the World’s Largest Dinosaur in Drumheller and many others on what Earl calls the family’s Southern Alberta Historical Tour.
Lily interjects and asks to play with her Flynn Rider doll, the male lead from the Disney film about Rapunzel Tangled.
She is expected to see Flynn in person when the family makes a trek to Disneyland following Lily’s final treatment.
It’s a chance to try and give her a sense of normalcy and laughter that she may have missed out on otherwise.
“I don’t think that she’s felt yet that she’s missed out on a lot,” said Earl, “But I do. I feel sorry I can’t take her to playgroups I used to take my son to. Or library reading groups.”
But Lily makes the most of life. She laughs, she squeals, she scampers around the house with her lopsided pigtails bobbing. She had begged to be placed in preschool, which she attends twice a week.
“The notion of being off-treatment is actually so frightening,” admits Earl. “You know you get conditioned for so many years that chemo keeps the bad things away.”
What scares Earl now isn’t the ‘c’ word (cancer), which used to often be a synonym for a death sentence.
“The ‘r’ word, relapse, is what scares me the most,” said Earl.
But Lily’s prognosis so far is good, her family is good and the community she belongs to is good.
“This is my opportunity to thank everyone I never got the chance to thank,” said Earl.
She mentions someone in Sparwood who donates $60 faithfully every month to a bank account opened in Lily’s name. She speaks of anonymous donors who left food and presents on their door during the Christmas season when Lily was at her worst. She thinks of her friends who decorated their home with twinkly lights for the holidays when they were in Calgary and away from home. She is constantly blown away by the unending support of the Elk Valley who once raised $25,000 for Lily through an auction set up through Facebook.
“There is a lot of love in this town, in this entire valley,” said Earl.
At this point, Lily asks for her second freezie and another chocolate pudding.
Earl simply smiles and complies, “How can you say no to a kid with cancer?”
Appeared in print October 30, 2014 and online at The Free Press.