Cayman Steele is the typical 4-year-old boy — he loves playing with cars, trucks and trains and is fascinated by sharks and crocodiles. He wants to be a cowboy when he grows up and can recite lines from his favorite TV show, “Sponge Bob Square Pants,” from memory. He’s learning to write his letters and he doesn’t like spiders.
“He has a mind of his own,” his mom, Soledad, said. “He’s very strong willed.”
And like any other 4-year-old, Cayman’s parents, Soledad and Michael, tell him that’s he’s special out of love — but here the similarities end. They tell him he’s special, his mom said, to help convince him to take treatments for a disease most 4-year-old’s can’t even pronounce: rhabdomyosarcoma of the bile duct or, more simply, liver cancer.
The location of Cayman’s tumor makes him a rare case — Soledad said his doctors have only seen a handful of children with a similar condition, and that there is little research on the subject. Although rhabdomyosarcomas are the sixth most common cancer type for children, the majority of the tumors occur in the head, neck, urinary organs or reproductive systems, according to the American Cancer Society.
Even Cayman’s diagnosis has a touch of the miraculous about it and is largely thanks to his mother, a self-described hypochondriac when it comes to her only child.
“It all went really fast,” she said, saying Cayman developed symptoms of discolored bowel-movements and itchy skin last October that were initially diagnosed as a pasta-rich diet and a detergent allergy, and then as scarletina, or scarlet fever. No labs were run — Soledad thinks because they had no insurance for Cayman. But the prescribed steroids and antibiotics did nothing to alleviate his discomfort and Soledad suspected a more serious problem.
“No one would listen to me and I knew there was something wrong,” she said.
When then-3-year-old Cayman couldn’t muster the energy for an afternoon of roller skating and developed yellow coloration in his eyes, Soledad took matters into her own hands.
The Steeles took Cayman to a lab where Soledad’s sister worked and drew the boy’s blood to test. And even before the tests were completed, Soledad said, her sister urged the Steeles to take Cayman to the hospital.
“She said, ‘He’s in liver failure,’ ” Soledad said. “Within a few days, his whole body was yellow.
“They said if we hadn’t caught it at all, he wouldn’t have made it to Christmas.”
But Soledad’s concern and the tests from the lab got Cayman the diagnosis he needed in early November, in time for hope that radiation and chemotherapy will be effective.
Initially, treatments were especially hard for strong-willed Cayman, who would scream for an hour after getting a single shot and often refused to eat or get out of bed.
“He was so angry — I couldn’t punish him for being angry,” Soledad said.
While many young cancer patients can have trouble understanding how sick they are, Cayman’s problem was the opposite, his mom said.
“He did know what was going on, and he wanted an answer.”
But with time and some tough conversations about the consequences of not taking his treatments, the family’s multi-weekly visits to the hospital go much more smoothly.
“He’s finally accepted it,” Soledad said. “Once it’s done, it’s done and he can leave it there.”
The hardest time now, she said, is when low white cell counts force Cayman into isolation to avoid illness, and low platelet counts limits play because the smallest cut or scrape will mean a trip to the hospital to stop the bleeding.
Since Cayman’s diagnosis in October, the Steeles have seen outpourings of love from friends and family— from piles of gifts at Christmas to a trip to Disney World courtesy of the Make-a-Wish Foundation in March.
There, Cayman saw snow for the first time as it was blasted from snow machines at a winter-themed party at a resort for sick children and got to see Captain Hook of Peter Pan infamy.
“I’m not scared of pirates,” he said emphatically as he played on the floor of his family’s Waxahachie home on a recent morning.
On the good days, Cayman is still as rambunctious as ever— working on art projects, wrestling (carefully) with his Dad, and watching his pets, Dory the fish and Ephraim the hamster, who Cayman says he has a special connection with.
“When he’s climbing, I tell him no, and he stops and he climbs back down,” Cayman said.
Soledad says when he’s feeling good, everything’s good.
“Overall, he’s pretty strong,” she said, watching him run cars over a snapped together track. “He can still play. … That really increases his odds of survival.”
And despite the risks and uncertainty, Cayman and his family are full of plans for the future — Cayman can’t wait for Halloween to come so he can dress up as a man with a mustache, and he’s already developed a scheme to mail Santa directions to the family Christmas tree and leave a gift of chocolate chip cookies and strawberry milk. He also says he wants to dye his hair green, once it grows back.
“We are going to throw him a huge party when it’s over with,” Soledad said.
She’s also looking forward to when Cayman has been cancer-free long enough that his immune system can handle public school, though she worries whether he’ll be caught up to the other kids when he does.
Soledad plans to return to work when Cayman goes to school, and hopes to become an advocate for more research on his type of cancer.
Since Cayman’s illness, finances have been tough for the Steeles, who went from a two-income household to one when Soledad quit her job as an office manager to stay home full-time with Cayman. The family had left Waxahachie for Michael, a police officer, to take a position in Tyler shortly before Cayman was born, but he requested and received a transfer back to Waxahachie eight months ago to be closer to Cayman’s hospital in Dallas. He now works as an Ellis County Detention Officer and part-time with the Red Oak Police Department, though he often has to miss work when Cayman goes into the hospital.
“It’s been really hard on us,” Soledad said. “We’ve been getting by the skin of our teeth.”
Cayman’s aunt, Theresa Steele of Waxahachie, said her husband and Michael had grown up together in the area and that she encouraged the family to move back after Cayman’s diagnosis.
“I just have seen this community come out above and beyond anything I’ve ever seen before,” she said. “This is a precious, precious family. They are the sweetest, kindest family, and nobody deserves this but they have handled it with such grace.
“Their family and friends have helped out to keep them afloat, and we just wanted to give the community the opportunity to also help. … (Cayman) is the smartest young man I’ve ever known, he is the sweetest and now the strongest, young man I’ve ever known. He takes this and he believes in the Lord and he prays to God every night for his healing power.”
Soledad said it has been difficult for the family to ask for help, but that circumstances have made it necessary.
“We’ve always been independent,” she said. “There just comes a point where you have to put your pride aside and say, ‘We need help.’ ”
The Steeles have placed donation buckets at IHOP and Ace Cash Express in Waxahachie, though many businesses said it was against their policy when approached about placing the containers, Soledad said.
In assistance to the family, Foundation of Life Church, where the Steeles and many of their family members attend, will accept donations on their behalf.
Checks should be made out to Foundation of Life, with Cayman Steele’s name in the memo, Dawn Lipsey with the church said.
“I hope everybody does help them out, that would be very kind,” she said. “He’s such a sweet little boy.”
The church will also send donation receipts to those who chose to contribute at the end of the year for tax purposes, Lipsey said.
Soledad said that every bit helps.
“Any help would be appreciated,” she said.
Foundation of Life is located at 515 E. Marvin and can be contacted at (972) 923-9470.