‘Tomorrow may not come’
Nov. 12, 2017
“Your battle is my battle.”
Stephanie DeLosSantos, 28, inked those words and a ribbon on her arm to remind her of the journey she’s been on with her toddler.
About Christmas last year, Esme DeLosSantos lost all of her dark brown curls. Her mother said that was really when the cancer diagnosis started to sink in.
Months before, she had rushed her 17-month-old daughter to the hospital with a swollen stomach.
“I knew something was wrong,” she said.
Esme was diagnosed with acute lymphoblastic leukemia March 22, 2016.
This is the most common type of childhood cancer and means her bone marrow makes too many immature lymphocytes.
Esme has a condition known as ALL with MLL-r, in which patients typically have a poor prognosis.
Immediately after her diagnosis, Esme went into surgery and started undergoing intensive cancer treatment at Driscoll Children’s Cancer and Blood Disorders Center in Corpus Christi.
Esme and her mother stayed at Ronald McDonald House Charities near the hospital for nearly a year.
DeLosSantos had to leave the job she had just started so she could be by her daughter’s side.
“It was just us,” Stephanie said. “We were alone.”
Her husband is in prison, and her young son is staying in Victoria with his grandparents.
DeLosSantos and Esme left Corpus Christi in March and moved to the small town of Runge near her younger sister, Kayla Villanueva.
The family has struggled to travel to Corpus for Esme’s cancer treatment every other week and cover the bills on a limited income of $700.
“It’s not enough,” she said. “There are times I don’t know if my lights are going to get paid. Sometimes you feel like nobody understands those kind of things.”
Family has helped her stay afloat, but after Hurricane Harvey she knows they can only lend so much support.
She’s in the process of transferring Esme’s ongoing cancer care to a hospital in San Antonio, which would be closer to home.
The sisters said the experience has made them think about the sacrifices their father went through when their half-sister, Hannah, fought brain cancer at 8 years old.
“Dad would travel every day after work to Houston to see her,” Villanueva said. “That had to be hard.”
Hannah died the next year.
DeLosSantos said she still has a hard time wrapping her head around the situation.
Her daughter has endured countless medical procedures and complications during the past 18 months.
Esme went into remission in December but still undergoes chemo every other week and will take daily maintenance medication until next September.
The toddler had surgery last month to replace her mediport and is still on a feeding tube.
But she’s also eating solid foods and loves to snack on ham and cheese.
Sometimes chemo makes Esme really tired, but other days she is her regular self - loving and energetic with a little bit of an attitude.
“She knows she can get her way,” she said with a laugh while she holds her sleeping daughter.
With Esme turning 3 on Dec. 1, DeLosSantos is taking things day by day. And when she can, she spoils her.
“We never know what can happen,” she said. “We live with that fear that tomorrow may not come for her.”
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