Watching 5-year-old Katelyn Roker buzz around her living room – bossing her little brother around while creating a rich, imaginative world to play in – it is easy to forget there is a ruthless battle raging inside her tiny body.
“Katelyn, don’t pull him around,” Katelyn’s mom, Jaime Roker, says, adding, “Remember your line.”
Katelyn lets the squirming 4-year-old Alex go, offering a high-pitched “Uh huh” in recognition of her mother’s warning. The Hickman line IV in Katelyn’s chest is integral to her chemotherapy treatments and cannot be damaged.
Katelyn has high-risk, Stage-4 neuroblastoma, which means malignant tumors develop from her nerve tissue. There is currently no cure for the disease, and her chances of beating it are slimming.
A benefit, called “Kupcakes for Kancer,” is scheduled on May 21 at St. Matthew’s School in Kalispell to help the Roker family stave off the considerable costs associated with Katelyn’s medical treatments, and to raise awareness for childhood cancer.
Katelyn’s fight with the disease began in January 2010, when her parents Jaime and Brian Roker, both 25, noticed she was sluggish, had a persistent fever and aches that wouldn’t go away. An initial visit with the pediatrician didn’t show any abnormalities, and Jaime thought her daughter was simply experiencing some arduous growing pains.
But during a subsequent check-up, the doctor lifted Katelyn’s long hair, revealing a large lump on the child’s neck. Jaime said she and the doctor stared at the lymph node in shock; further scans found a grapefruit-sized tumor wrapped around Katelyn’s aorta.
Months of rigorous treatments ensued once the neuroblastoma diagnosis came through, beginning with six rounds of intense chemotherapy, tumor resection surgery and a stem cell transplant in Seattle.
Katelyn then endured 20 rounds of radiation treatments in Spokane, as well as a trial study in immunotherapy.
The treatments wreaked havoc on Katelyn’s body, but one of the lasting results is her severe high-frequency hearing loss. When the chemotherapy took her hair, it stole it from everywhere, including the important little hairs in her ears that facilitate hearing.
This will be permanent, Jaime said, and will likely get worse. Katelyn wears hearing aids, but her short, brown hair largely hides them. She likes to sport headbands, especially the sparkly variety, and would wear dresses every day if her mom let her.
“She’s very much a girly girl,” Jaime said.
Last October, Katelyn’s tests came back with NED results – meaning No Evidence of Disease. It wasn’t until April that she relapsed, with tumors in each small thigh and hip and in her bone marrow.
“She can’t do much running around, it gets painful,” Jaime said.
Some of Katelyn’s favorite activities require moving around. She likes to play with her brothers Zach, 6, and Alex, and says soccer is her favorite sport. Katelyn is also quite sure her favorite animal is a zebra and pancakes top her list of preferred foods.
And her favorite type of dog? That award goes to the family’s black and white puppy.
As a parent, Jaime said it is tough to watch her daughter constantly battle her own body, but Katelyn’s youth and resilience help everyone cope.
“Kids are so … they just rebound so easily,” Jaime said. “It amazes me. It definitely helps keep me positive about things.”
That’s not to say the last year and a half has not affected the little girl. Her big eyes exude deepness beyond her years, and Jaime says her daughter is flying through phases of interests quicker than most girls her age.
For example, Katelyn’s fascination with princesses was barely a blip on the radar, and she recently informed her mom that her favorite color is no longer pink or purple, but green.
Jaime sees it as her daughter’s accelerated maturation, which she attributes to the host of very adult experiences she has lived through already.
“She’s done so much growing up,” Jaime said.
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Katelyn Roker, 5, starts up a hand-held game while sitting on the bed in her Kalispell home. |
The intense medical treatments and the travel involved have affected the Roker family financially as well. Jaime quit her job to take care of Katelyn, leaving Brian as the sole income provider.
This was financially jarring, and the family held a benefit last year to help pay for the expenses that private insurance does not cover. Those funds lasted until just recently, Jaime said.
Proceeds from the May 21 benefit at St. Matthew’s will help the young family move on to the next round of treatments, which might include a trip to New York for procedures that could increase Katelyn’s chance of survival.
The benefit will include gourmet baked goods provided by Vintage Vegas Cupcakes in Spokane, the owner of which is a mom of a child with cancer the Rokers met during Katelyn’s treatments.
There will also be cupcakes from other people who wanted to help, including the emergency room nurses Katelyn met last week when she came down with pneumonia, and local bakeries.
The event includes raffles and auctions, with donated items such as a BMX trick bike from Pepsi, goods from local businesses up for bid and emcees from Bee Broadcasting. There will also be spaghetti, a Roker family favorite.
Sitting at her dining room table, Jaime speaks matter-of-factly about her daughter’s illness and the steps they have taken to fight it. Once the cancer’s shock value wore off, it was replaced with a sense of pushing forward, wherever that may be.
Still, the fear of losing their child is a reality Jaime and Brian deal with every day.
“I have to wake up every day thinking, ‘Is my daughter still awake, is she alive in her bed?’” Jaime said.
While the significance of Katelyn’s situation helps the family handle the little annoyances in life, it places more perspective on the little joys of life as well.
“She loves life and enjoys being with her brothers, being home,” Jaime said.
Jaime’s narrative, however, is interrupted when Katelyn and Alex come to invite everyone to the restaurant they have created in her room. The two had laid out toy plates and utensils for a feast consisting of a plastic cake and various plastic fruits and vegetables.
“Come on in, people,” Katelyn said, sweetening the deal with an offer to do all the dishes.
She’s a gracious host in her pretend restaurant, an interest her mom says stems from an appreciation for cooking and baking shows on TV. Once the make-believe meal is over, she fulfills her promise to take care of the dishes and sees her guests to the door.
“Have a good day,” Katelyn says, waving briefly before getting back to a 5-year-old’s serious business of play.
The Kupcakes 4 Kancer benefit takes place on May 21 at St. Matthew’s School in Kalispell at 4 p.m. There is no entry fee. Donations may also be sent to the Katelyn Roker Fund c/o 55 Sunrise Drive in Kalispell.