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Friday, July 25, 2014

Maya Fest fundraiser to help 2-year-old with leukemia

By RICK PLUMLEE
The Wichita Eagle

Diego and Tabatha Flores’ first indication something was wrong with their daughter was a dark red spot on the tip of her right thumb.

They didn’t know on that Friday last June that Maya, then 14 months, had acute lymphocytic leukemia.

Or that over the next 9½ months little Maya would be hospitalized nine times.

The couple couldn’t have imagined then the heartbreaking months that lay ahead as they watched their only child endure inflamed tissues from her mouth to colon and lose weight and her thick, dark hair.

No one knew then that Maya would receive a total of 19 whole blood or platelet transfusions and would spend her second birthday on Monday going through her sixth round of chemotherapy.

At first, Tabatha thought Maya had been bitten by a spider. Or perhaps her habit of sucking the thumb had caused an infection.

They couldn’t get in to see Maya’s pediatrician that Friday, so they went to an immediate care clinic. Medical staff wasn’t sure what caused the red spot either but put Maya on antibiotics and told Tabatha to see their pediatrician on Monday.

That was June 20, 2011, the day after Father’s Day. Tabatha and Maya had given Diego a pair of new golf shoes, so he had taken that Monday off to hit the links.

Instead he waited in the exam room with his wife and little girl while the pediatrician checked lab work.

“He took forever,” Diego said.

“At least an hour,” Tabatha said.

The doctor finally returned to the room. He had taken a long look under the microscope, acknowledged he wasn’t an expert on this but said Maya’s white blood cells looked like leukemia.

Tabatha and Diego took a deep breath.

“We weren’t expecting it,” she said. “And then everything happened so fast.”

A trip to the hospital that same day and more tests the next day confirmed it was indeed leukemia.

Leukemia caused Maya’s platelets to be low and reduced clotting, so sucking on her thumb brought blood to the top and created the red spot, Diego said.

Maya immediately began her first round of chemo and was in remission within 28 days, Tabatha said.

If only that’s all there was to it.

Maya faces another two years of chemo treatments. She lost three pounds during her last round, dropping her weight to 22 pounds.

Stress from all the treatments has doctors concerned about her heart, liver and kidneys. A bone marrow transplant may be necessary.

On rough days when she’s deep into a six-week round of chemo, Maya is tired, cranky and doesn’t want to eat.

On good days, like a recent one at the Flores’ home in southeast Wichita, she chatters almost nonstop, breaks into her favorite song, “Twinkle Twinkle Little Star,” with her soft, sweet voice and shares a potato chip with a visitor.

Maya never grows tired of watching her favorite movie, “Tangled,” but “Finding Nemo” is a close second. She loves her Rapunzel dolls and french fries.

All very much like most 2-year-olds.

And as Ali Flores, one of Maya’s aunts, will tell you, “She’s really outgoing and smart.”

If you don’t believe it, listen to Maya say her ABCs and count to 15.

Diego, 23, and Tabatha, 30, speak in upbeat tones. They deal with the realities — including financial ones — while trying to match Maya’s smiles.

“Financially, somehow we’ll figure this out,” Tabatha said. “We spend most of our time and energy making sure she’s all right.

“Any time she’s awake, we have to have the happy face on.”

Only quietly does Tabatha say, “It’s been pretty difficult.”

They have health insurance, but they’ve already spent more than $12,000 on out-of-pocket expenses.

Maya can’t be in day care because of the risk of infection by being exposed to other children, so Tabatha has had to cut back her hours working as an office manager for a hospice.

To offset that income loss, Diego has taken on a second job. After finishing his day job as a stockroom coordinator for Via Christi Health Clinic, he pulls a four-hour night shift as a FedEx package handler.

In between, Diego tries to keep up with two online classes he’s taking through Butler Community College. No complaints, though.

“We’ve had so much help from family, friends and people we don’t even know,” Diego said.

They want to help more.

Friends and family have organized a fundraising event, Maya Fest 2012, to be held from 9 a.m. to 2 p.m. April 28 at Lawrence Dumont-Stadium.

Josh Robertson, president and general manager of the Wichita Wingnuts and the National Baseball Congress, learned of Maya’s illness and offered organizers the use of the stadium at no charge.

The fest will have school carnival-like activities — including an inflatable bounce and face painting — food, a silent auction, a bake sale and a one-mile race for adults.

Arrangements for donations to the auction can be made by e-mailing mayafloresfund@gmail.com, or items may be dropped off at Franklin Elementary, 214 S. Elizabeth, between 10 a.m. and 4 p.m. during the week.

“It helps you feel better when you realize strangers will help you however they can,” Diego said.

Helping Maya get better is the parents’ central focus

Most of the studies done on Maya’s type of leukemia have been for children between 2 and 9 years old. Success rate for that group is good, about 95 percent.

Tabatha and Diego have been told that Maya is at a higher risk because she was diagnosed at a younger age.

But parents’ hearts know hope drives possibilities that medical science can’t touch.

“When you become a parent, you never consider things like this will happen,” Tabatha said. “We will do what we can to make sure she gets better and stays healthy.”

That includes heavy doses of love.

“This has brought us closer together,” Tabatha said. “We appreciate every minute we have with her.”

Reach Rick Plumlee at 316-268-6660 or rplumlee@wichitaeagle.com.

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