Battling for Bailey: Family, community support Benton City 4-year-old with brain cancer

By Ty Beaver, Tri-City HeraldApril 19, 2014 

BENTON CITY -- The little girl with curly brown hair, glasses and a floral dress walked with the help of her mother to several tables as her fellow preschoolers swarmed around her.

Bailey Castillo, 4, spent time decorating an Easter egg-shaped paper cutout before moving to another area to play with Play-Doh with the help of an older friend.

She looks like any other girl in the developmental preschool class run by the Kiona-Benton City School District.

And that's just what her teachers and parents want.

"That little girl has no idea what we do for her," said preschool teacher Judi Harding, who, along with Bailey's other supporters, were wearing shirts emblazoned with the message, "I believe in miracles and Bailey" on the back.

Diagnosed with a malignant brain tumor less than two years ago, Bailey has undergone surgery, chemotherapy and radiation treatments.

Doctors recently found more than 20 new tumors spread throughout her body, prompting a new round of chemotherapy. Her parents, Lindsey Parr and Eddie Castillo, said the treatment has shrunk the tumors slightly.

Her family describes her condition as terminal.

Yet they remain hopeful.

Hopeful the cancer treatments will continue to stunt the disease's growth.

Hopeful a new treatment will be found to treat their daughter's disease.

Hopeful Bailey will get to live a normal life.

"Honestly, the only thing we can hope for is that things stay well enough for something better to come along," said her mom.

Until then, they're making every day count.

Today, she'll get three Easter egg hunts with her brother -- one at her house, at her grandmother's and at her great-grandmother's.

Tumor detected

Bailey and her entire family came down with a bad stomach flu in fall 2012, her mother said. While Parr, Castillo and their now 7-year-old son Conner recovered, Bailey remained ill, vomiting for weeks.

Multiple trips to a pediatrician and the emergency room yielded no answers. Then, one morning, Bailey woke and couldn't walk in a straight line.

A CT scan revealed a tumor at the base of her skull.

Bailey immediately was flown to Seattle Children's Hospital and diagnosed with a medulloblastoma brain tumor, one of the more common malignant tumors to affect children.

Surgeons removed the tumor but the procedure left her unable to walk or swallow, requiring Bailey to use a feeding tube. She then had six months of chemotherapy and went to the University of Texas' MD Anderson Cancer Center in Houston with her parents for proton radiation treatment on her brain.

Following those treatments, Bailey's regular cancer scans came back negative -- until January. That's when the new tumors, some along her spine, were discovered.

"They can't do surgery just to take it out and fix it," her mother said. "What we're doing now is just to delay progression, not to cure."

Bailey cannot walk without the aid of one of her parents or a walker, but she is eating again.

Attending developmental preschool for a few hours each day is as much a part of her life as her regular trips to see doctors and for cancer treatments.

Parr and Castillo have not told their daughter she is ill, they said. She has no memory of a life without doctor visits, feeling sick and having to stay home from school or not being able to eat on her own.

"She's actually pretty happy," Parr said. "She likes going to the hospital."

"The worst thing is putting Band-Aids on her because then you have to pull them off," Castillo said.

Community steps up

Bailey's needs have strained her family. Both parents worked before her diagnosis, but Parr quit her job processing medical insurance claims to care for her daughter full time after the first tumor was found. Castillo works at Best Buy installing car stereos.

The family has health insurance and Parr said most of Bailey's care is covered.

But the family still has to make ends meet on one income now instead of two, along with getting Bailey to treatments and checkups at Seattle Children's Hospital and making sure Conner is looked after.

Parr's and Castillo's parents have helped the family a lot, Parr said, from picking up Conner from school to making dinner.

Bailey's school and others in Benton City also have stepped up to help.

Fundraisers have generated thousands of dollars for the family, primarily to pay for Bailey's travel for treatment in Seattle and elsewhere outside the region.

The little girl has become a rallying point for the tight-knit community, residents said.

"I know if it was my child I'd move heaven and earth," said Mandy Mokler, whose son Alex is in Bailey's class.

The family's needs inspired Mokler and others to organize a bingo night not long after Bailey's diagnosis to benefit her family and the Benton City families of 1-year-old Piper K. Finkbeiner and then 5-year-old Kase Warner. Piper drowned after being left unattended in a bathtub and Kase was seriously burned after a gas can his father was holding exploded.

"I hadn't even met Lindsey," Mokler said of wanting to include Bailey in the fundraiser. "Alex came home from school and told me that Bailey is sick and they don't know why."

Bailey's family received about $1,600 from the bingo night, which went toward travel expenses, her parents said.

And the community rejoiced when Bailey's initial cancer scans came back clear, her supporters said. But when the new tumors were discovered, her supporters jumped back into action.

Mokler worked with a crowdfunding website to produce the Bailey T-shirts and hooded sweatshirts. Hundreds have been sold.

Others worked to produce various bracelets, including Tatum Carnahan, 10, a fourth-grader at Ki-Be Elementary whose mom is friends with Bailey's parents.

Tatum's loom band bracelets always incorporate the colors pink and blue for Bailey.

"I just wanted to help her," Tatum said. "I was inspired by the other people who were (helping)."

Those efforts have raised more than $4,000, supporters said. Parr said she and Castillo are saving most of it to use if they have to travel to Houston again for radiation treatment.

Living life

No medicine or treatment available can cure Bailey's condition, Parr said, but there is research and experimental treatment under way to fight the disease.

The results are promising, Parr said.

But it's not known when or if that treatment will ever be available. And waiting to see if it might help Bailey has been hard, her parents said.

But the family perseveres, they said.

And Bailey continues her life that in some ways is as typical as any other little girl's.

She enjoys pestering her older brother and doing crafts at preschool. She will smile as she playfully pulls a cookie away from her father when he tries to take a bite out of it.

"That smile, it's what keeps me going," Castillo said.

It's what keeps Bailey's supporters going as well.

"We will always have hope," Mokler said. "I refuse to give up."

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