Makayla, who suffered from a rare form of leukemia, died last month after suffering a stroke — her death sparked a national conversation on aboriginal peoples' right to opt out of the health system.
Doctors gave her at most a 72-per-cent chance of survival even with an aggressive chemotherapy treatment, her mother, Sonya Sault, told an audience at McMaster University.
"She became so weak so she couldn't even stand or sit at times," she said.
Sault said the treatment took a heavy physical and emotional toll on the little girl.
"Are you sure I'm getting better? Are you sure we're doing the right thing? I feel I am getting worse," she recalled her daughter asking.
Makayla said things like "the chemo is going to kill me," the mother said, adding that finally she begged the parents to put an end to it.
"Mom, if you have the power to get me out of here, then you have to get me out of here."
Sault said she and her husband Ken thought about it.
"We know that chemotherapy is not easy for anyone, but for Makayla it was devastating," she said.
Makayla, she said, understood the "harsh reality of stopping chemotherapy," but she wanted to try traditional medicine.
"I don't care if I'm going to die, I don't want to die weak and sick in a hospital," Sault remembered her daughter telling her.
So they stopped treatment.
"We know that chemotherapy is not easy for anyone, but for Makayla it was devastating."
Makayla nearly died of septic shock just three weeks into her treatment last year, Sault said. And the girl suffered three other serious illnesses while receiving the treatment.
Sault spoke at an event organized by McMaster University's Indigenous Studies Program in an effort to understand the problems between First Nation peoples and the health-care system.
"Our hearts are broken by the passing of our daughter," an emotional Sault said before composing herself — her husband by her side.
The parents said they want their daughter to be remembered for more than cancer.
She was a dancer, gymnast and lacrosse player, Sault said, and was "wise beyond her years."
The mother also said she wanted to clarify "misinformation in the media" about her daughter's treatment.
The medical staff at McMaster Children's Hospital in Hamilton threatened to get the authorities to apprehend the girl and her two brothers and force chemotherapy treatment upon her, Sault said.
Makayla started to feel better once the chemotherapy stopped, Sault said, but she didn't stop treatment altogether. She continued to receive treatment from her family physician, Dr. Jason Zacks, as well as an oncologist at McMaster hospital. She also received traditional medicine from a healer near her home on the Mississaugas of the New Credit First Nation.
Then the family went to the Hippocrates Health Institute in Florida to get away from the brewing media storm over her case, Sault said.
Florida's Department of Health recently issued a cease-and-desist letter to the man who runs the spa, Brian Clement, for practising medicine without a license.
Sault said Makayla didn't go to the Florida spa for cancer treatment, only to try out a new diet that might boost her immune system. Plus, Sault said, Makayla got to relax and be a kid again, soaking up the sun and swimming in the ocean.
The mother of another cancer-stricken aboriginal girl who refused chemotherapy also spoke at the event. The case of her daughter, who cannot be named because of a court-ordered publication ban, made headlines after McMaster hospital took the local Children's Aid Society — and eventually the family — to court in an attempt to bring the girl back for chemotherapy treatment.
The court sided with the family, saying as a First Nation person, the girl has the right to choose her health-care procedures.
"The issue is not whether traditional medicine will be respected, but how it will be respected and how and when the two systems can work together," the mother said Thursday.
She promised to share her daughter's story with the public after the deadline for appeal of the court decision expires on March 13.
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