'Neuroblastoma moms' help family cope with little girl's cancer fight
BY STEVEN MAYER, Californian staff writer
In the quiet of the bedroom, where Disney music plays softly and visitors speak in low, careful whispers, you can't help but wonder if there are wings hidden beneath her bedspread.
But all that's visible is the sweet, elfin face of 5-year-old Ylaria Carrasco-Cazares and a blue stuffed bunny tucked in beside her.
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Regino Cazares waits by his daughter Ylaria Carrasco-Cazares' bedside. He has an iPhone playing Ylaria's favorite music as she rests in her parents' bed Monday afternoon. Ylaria is fighting neuroblastoma and came home Friday for hospice care.
Parents Regino Cazares and Belen Carrasco wait by their daughter Ylaria Carrasco-Cazares' bedside in this photo shot last week. Ylaria battled stage IV neuroblastoma for 3 1/2 years before succumbing to the illness Sunday morning.
There for support: Stephanie Cotton, from Iowa, Belen Carrasco, Trish Madigan, from Indiana, Robin Gaines, from South Carolina, Carmen Murray, from Gilroy, Calif., and Melissa Byrd, from Alabama. The women have formed a support group for one another and came together to help Gino and Belen. They formed a bond while all were at a New York City hospital; all have children who are fighting or have fought neuroblastoma.
After three and a half years of fighting stage IV neuroblastoma -- what some call the cruelest childhood disease on the face of the earth -- Ylaria has come home, all treatments virtually exhausted.
"Tumors are everywhere," says Ylaria's mother, Belen Carrasco, herself drained by the epic fight this Bakersfield family has waged, much of it chronicled in The Californian, since June 2007. "They're in her lungs, kidneys, spine, arms, legs and her skull."
In recent weeks, Ylaria was at a cancer hospital in Orange County. It soon became clear the battlefield had shifted -- from fighting the cancer to trying to ease the agonizing pain Ylaria was experiencing.
For the parents who had forgone teaching careers and a semi-normal family life to dedicate years to saving their daughter's life, the questions they were being asked seemed unanswerable.
"They gave us the decision," Ylaria's dad, Gino Cazares, said. "Do you want to go home or stay here at the hospital?"
"We couldn't decide for days," he said Monday afternoon as he sat at Ylaria's bedside, occasionally stroking her face as she slept.
"Ylaria wanted to go home, but we knew the hospital had doctors and nurses available 24-seven," Cazares said. "It was a hard decision, but we decided this was the best place for her."
Ylaria is now under the care of Hoffmann Hospice. A strong narcotic is controlling her pain, and if it spikes, her parents can push a button to deliver a bump in the dose.
Inside the family's southeast Bakersfield home, beneath the hall linen cabinet (which was long ago turned into a hospital supply closet), a stack of children's books testify to the parents' efforts to help their daughters -- Yoly, 4, and Belen, 9, and the girls' half-sister, Azlin, 12 -- process what is happening.
In language children can understand, the books explore difficult territory, including the arbitrary nature of cancer and that topic many of us find so difficult to discuss.
"These are books I've been reading to my girls," Mrs. Carrasco said. "Books about funerals, books about angels, about cancer, to try to help them cope a little bit."
In the living room, five women spoke about how they came to be there, their talk punctuated by tears, then laughter, then tears again.
"We're all neuroblastoma moms," said Melissa Byrd, who flew in from Alabama to help the Cazares family.
"They are our friends," said Robin Gaines, a medical doctor from South Carolina. "Not wanting them to go through this alone, Melissa and I started talking."
Byrd lost her 5-year-old son, Jensen, to neuroblastoma in August. Gaines' daughter, Lauren Maziarz, died on the day after she turned 5.
Eventually, six "neuroblastoma moms" would arrive at the Cazares doorstep on the same day Ylaria and her mother arrived via ambulance. They've been cleaning, cooking, doing laundry, caring for Ylaria, organizing -- and even making a trip to a funeral home for the overwhelmed couple.
They included Trish Madigan of Indiana, whose 8-year-old daughter, Kate, has been fighting the disease for five years.
Gilroy, Calif., resident Carmen Murray met the others at a hospital in New York through her 4-year-old son, Ty; and Iowa resident Stephanie Cotton is battling the illness alongside her child, Dakota Neblock, 5.
A sixth mom, Emily Pierce of Florida, left on Sunday.
"If we didn't have each other, it would be unbearable," Gaines said.
All of the women want the terror of this disease to be more widely known by the public.
"People are not mad enough about it," Gaines said. "So there's not enough money to find a cure."
So it was that in the midst of a family's worst nightmare, they have found comfort and love, and sometimes even laughter and joy.
"They're amazing," Mrs. Carrasco said of her friends. "If we had arrived from Orange County to a quiet home, we wouldn't have known what to do."
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