Family of young cancer patient struggling with grim news
BY STEVEN MAYER, Californian staff writer smayer@bakersfield.com
Her medical scan was enough to make any parent cry -- and they did. The image showed large black cancerous spots on the bones in her legs, her ankles, her wrist and now her shoulder.
For nearly three years, Californian readers have been following the Carrasco-Cazares family and 4-year-old Ylaria's struggle against the aggressive childhood cancer known as stage IV neuroblastoma. Just last August, the family was back in Bakersfield basking in the news that Ylaria's scans were clear after months of painful treatment at Memorial Sloan Kettering Cancer Center in New York City.
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But then, a few months ago, the cancer returned. And on Monday for the first time, Belen Carrasco and Gino Cazares heard their doctor use words he had never used with them before.
"I don't even know if I would give her eight weeks," he said gently, the words nevertheless landing like bombs in the hearts of the parents.
Many of his colleagues, their doctor said, were pushing for hospice care for Ylaria. They were saying it was time to end treatment and send Ylaria home.
But the frightened couple still had the option to try one more round of high-dose chemotherapy, though it has been tried three or four times before without success.
"It seems unthinkable, impossible for this to be happening, but it is," Carrasco wrote Monday night in her online journal on CaringBridge.org. "Not only are Ylaria's scans clearly showing disease progression, but she's having on-and-off fevers, her LDH level (a neuroblastoma marker) is 1150, which is nearly four times higher than what it's supposed to be, and she of course is in increasing pain, with little to no appetite."
As soon as they heard the prognosis, the parents of other neuroblastoma patients at Sloan Kettering rallied around Belen and Gino. They didn't tell the Bakersfield couple what to do; they just shared experiences and lent their support.
"Should we bring Ylaria home and let her sit on the couch and snuggle with her sisters and try to enjoy what time she has left?" Mrs. Carrasco wondered aloud in a telephone interview Tuesday. "Parents told us that's not giving up on your child."
On the other hand, might another round of chemo stabilize Ylaria just enough to make her eligible for some new experimental treatment? It's not probable, but there's a thread of a chance.
"It's just an awful, awful place to be in," she said.
The couple spent hours Monday talking with their "NB family," parents who are in, or might someday be, in their shoes. Then they called the mother of a boy who died a few months ago after his cancer had spread. The parents had brought the boy home after his scans showed little hope of recovery.
The Bakersfield couple thought the mom would probably support the choice to Bring Ylaria home. But when she learned Ylaria's cancer is in her bones and has not spread to her internal organs, she told Belen and Gino she would try again if she was in their position.
That was it for Belen and Gino. The powerful perspective of a still-grieving mother had solidified in their hearts what they must do.
On Monday, Gino and the couple's two other daughters boarded a plane. On Tuesday they were home in Bakersfield where Gino must return to his job as a teacher at Roosevelt School before he loses it.
"It has to be done," he said. "We have two other daughters who need us. It's hard, but you can't stop."
Belen will remain with Ylaria, who on Tuesday had already begun her final round of chemo.
"So maybe," Gino said. "One more try.
"It's a small chance they are giving us," he said. "But it's a chance."
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