Carolyn Vacheresse's daughter Danielle was diagnosed with a brain tumour at 18 months old and survived at least 30 surgeries and experimental drug treatments as a child. Now as an adult, her daughter isn't getting the care she deserves, she said.
Danielle is in the late stages of liver failure, her life hanging by an always thin thread, Vacheresse said Monday.
"When she was first diagnosed they gave us three days," Carolyn Vacheresse said. "Since she was diagnosed, and up to 20 (years), we've been fighting life and death. We've been at that door many times."
Danielle Vacheresse, in a wheelchair and eyes closed, attended a meeting organized by Opposition New Democrat health critic Judy Darcy. Danielle did not speak.
"In 2003, she went blind," said her mother. "As I said, she's in liver failure, last stages. She has osteoporosis. She has dementia. She has psychosis. She has depression. And she has a whole host of big medical issues that require 24-7 care."
Several other families whose children have struggled with cancer were also at B.C.'s legislature Monday appealing for the creation of a specialized treatment centre to help childhood cancer patients once they reach adult age.
Vacheresse said her daughter and up to 3,000 other childhood cancer survivors in B.C. received specialized treatment — many at Vancouver's Children's Hospital — but once they reached adult age, the parents and their children are left to find treatment on their own.
"My family is (left) to get help for her because no one understands her condition," said Vacheresse.
She said one specialist at Vancouver General Hospital told her that her daughter has received excellent care during her life and, perhaps, the time had come for the family to let nature take its course.
Darcy said families are essentially left to fend for themselves after receiving years of specialized treatment at Children's Hospital in Vancouver.
Health Minister Terry Lake said he has empathy for the suffering of the families and the government is prepared to review their concerns but he isn't making any promises about a specialized treatment facility for adult survivors of childhood cancer.
"They need more than empathy. They need action now," said Darcy.
Vacheresse, who is the president of B.C.'s Pediatric Cancer Survivorship Society, said the government should take responsibility for the late-stage affects of those drugs, offering her and others the care they require in what remains of her adult years.