Chemotherapy took such a horrific toll on Makayla Sault's weak body that she begged her parents to take her out of treatment and try traditional medicine instead, the mother of the 11-year-old Ojibwe girl said Thursday.
Makayla, who had acute lymphoblastic leukemia, died last month after suffering a stroke. Her death sparked a national conversation on aboriginal people's right to opt out of the health system and is under investigation by the chief coroner's office.
Doctors gave Makayla a 72 per cent chance of survival even with an aggressive chemotherapy treatment, her mother, Sonya Sault, told an audience at McMaster University in Hamilton.
"She became so weak so she couldn't even stand or sit at times," she said.
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As CBC reported last May, during the 11 weeks of chemotherapy, Makayla experienced severe side-effects that landed her in the intensive care unit.
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 the girl finally begged her parents to put an end to it.
'I don't care if I'm going to die, I don't want to die weak and sick in a hospital.' — Makayla's mother, Sonya Sault, recalls her daughter's experience in chemo
"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 remembers her daughter telling her.
After Makayla said she saw a vision of Jesus in the hospital, in which he proclaimed that she was healed, her family stopped treatment.
CBC reported last fall that Makayla had suffered a relapse of leukemia.
'Our hearts are broken'
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, with 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 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.
Makayla, J.J. attended Hippocrates Health Institute
Makayla also attended the Hippocrates Health Institute in Florida last summer, two months after Brant Children’s Aid society decided she was not a child in need of protection.
'Neither went to Florida seeking 'alternative' medicine ... they found peace, a safe place — that is all.' — Presentation at indigenous health conference on Makayla Sault and J.J.
Sault said Makayla didn't go to the Florida spa for cancer treatment, but to try out a new diet that might boost her immune system. As well, Sault said, Makayla got to relax and be a kid again, soaking up the sun and swimming in the ocean.
In August, another First Nations girl also attended Hippocrates after leaving chemotherapy. Her identity is protected by a publication ban but in a court hearing about her case, her doctors testified that she had a 90 to 95 per cent chance of survival with chemotherapy.
A slide presented by indigenous studies professor Dawn Martin-Hill at the McMaster University conference said, "Neither went to Florida seeking 'alternative' medicine — they fled Canada. Fleeing threats of apprehension, incarceration, horrible acts of aggression. In the U.S. they found peace, a safe place — that is all."
J.J.'s mother told CBC News that her daughter was also using indigenous medicine while in the hospital, but from the start she was conflicted about the chemotherapy treatment.
"I knew I had wanted not to do it, but I had no alternative method so I could not stop chemo without an alternative method. So it took me a number of days to get everything I needed, you know to get the blood work faxed down [to Hippocrates], to get an appointment set up, and that was the 10 days of chemo."
Her mother told CBC News she made the decision to pull her daughter out of chemotherapy after speaking to Clement. "I went in to a waiting room and I did my consultation with Dr. Clement and it was very comforting.… He was saying, 'Oh yes, no problem, we can help her. That was the day we stopped the chemo.'"
Clement denied speaking to J.J's mother when CBC asked him about it in December.
J.J.'s mother promised to share her daughter's story with the public after the deadline for appeal of the court decision expires on March 13.
A CBC investigation has since revealed that Clement has been ordered to stop practising medicine by Florida’s Department of Health. The Florida authorities found probable cause he was treating two minor children with "possibly dangerous" therapies.
He's been fined for advertising himself as a medical doctor despite not being licensed to practice medicine in that state.
CBC reached out to Clement for comment but did not receive a response.