"Mother of Six Nations girl with cancer speaks out"

By Donna Duric, Writer

"I was prepared to become a fugitive and run with my daughter."

That's how far a Six Nations mother was willing to go out of fear a court would order her daughter be seized after she was pulled out of chemotherapy this past summer in favour of alternative treatments for cancer.

"I lived in fear of losing her for so long. I was prepared to do anything to keep her. I had no fear of becoming a fugitive. I was going to run with her."

The mother and daughter, who cannot be identified due to a publication ban, were celebrating a court victory with about 100 community members at Polytechnic Sunday after a Brantford judge decided last week the girl was not a child in need of protection.

The mother spoke publicly Sunday evening for the first time about the harrowing journey she and her family have been on since her daughter was diagnosed with cancer.

The 11-year-old girl had been diagnosed with acute lymphoblastic leukemia in August after her mother noticed something "off" about her daughter while she was playing lacrosse.

"She couldn't run for a sustained amount of time," said the mother. "She started getting stomach pains, leg pains, she'd run off the field after about 30 seconds. It started getting worse and worse. One day, she almost collapsed. A few days later, I noticed her not eating and sleeping a lot. She almost slept four days straight. Her legs were really weak."

That's when the mother took her daughter to McMaster Children's Hospital and received the devastating news that her daughter had acute lymphoblastic leukemia, a childhood cancer.

"(The doctor) blurted out like it was casual: 'I believe your daughter has cancer,'" she said.

"From that moment, it was like a cloud, a fog, just come over me. I couldn't think. I was in disbelief. I said to him: 'I know ways to treat cancer.' And he just looked at me in disbelief."

The mother reluctantly agreed to start her daughter on her first round of chemo on Aug. 13, which doctors told her would provide her daughter with an 80 to 95 per cent survival rate.

While receiving treatment, her daughter experienced excruciating side effects and even caught an e-coli infection in the hospital.

"I hope no one ever has to see a child in the kind of pain I've seen her in. I knew I couldn't do that to her. It was too high a price to pay."

The mother eventually informed doctors she wanted to pull her daughter out of chemotherapy to try traditional and alternative approaches instead.

"The doctor was a little bit upset," the mother said. "She had to struggle to maintain her composure; she convinced me my daughter had zero chance of survival if I left this hospital. I didn't pursue a debate with her. I knew they were going to call (child services) but I had no fear. I knew it was going to become a legal fight. I knew they were going to come at me with medical neglect."

She told doctors she was taking her daughter to Florida to an alternative treatment centre called the Hippocrates Health Institute and was eventually discharged.

She said she set out for Florida a day earlier than anticipated because, "I knew they were going to try and stop me and they did."

A Brantford judge had placed an order calling for the family to remain in Ontario the day they left in mid-September.

The mother and daughter stayed at the Florida health centre for three weeks where her daughter underwent a treatment regimen of raw food, supplements, laser therapy, positive thinking, and exercise.

Meanwhile, a legal case played out in Brantford after McMaster took Brant Child and Family Services to court for failing to intervene in the case.

A number of expert witnesses were paraded through the

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court during eight days of hearings that spanned over two months, including pediatric oncologists, child welfare authorities, a Six Nations physician, and cultural anthropologist Dr. Dawn Martin-Hill, who coincidentally, heads the Indigenous Studies Program at McMaster University.

Doctors argued in court that without treatment, there was a O per cent chance the girl would survive, but ultimately, Justice Gethin Edward ruled on Friday that the family's constitutional rights to practice traditional medicine must be upheld.

"As for the court case, I can't say how happy I am that it's over," said the girl's mother at the celebratory dinner Sunday evening. "I lived in a lot of stress. I didn't realize the amount of stress I was living, knowing my daughter might be taken from me only because I'm trying to make her healthy."

Fearful of losing her daughter she fled to Buffalo N.Y. on the Wednesday before the decision to stay with her cousin. She said friends around the U.S. told her she could stay with them.

Now she can focus on continuing to treat her daughter with traditional remedies, she said.

The event held on Sunday was to celebrate her daughter's health and the fact that "we're free of trauma to our family," she said. "I lived under a lot of stress up until that moment. I really wasn't sure which way the case was going to go. I knew in my heart the way it should go. Once it was announced dismissed, I was beyond happy. I can't describe how happy and grateful I was that we can be free of that stress and just concentrate on getting her better now.

"I think it's a big win for our people all around, even though we haven't stopped practicing our traditional ways, our culture, our ceremonies - this is just a little bit of an acknowledgement that Canada understands its agreement with our people."

The mother said she never intended to abandon chemotherapy altogether. "I never did (rule out chemo in the future). I requested - just give us the opportunity to try this way (traditional medicine). If this did not work, I will be back for chemo. I will not watch my daughter perish."

Her daughter's health has since improved.

"We've seen an amazing response in terms of her blood count numbers."

Elected Chief Ava Hill said band council supports the family. "The council has always supported (the family) just as we supported Makayla Sault and her family in New Credit," said Hill. Makayla Sault, 12, is also fighting acute lymphoblastic leukemia using traditional medicine.

"When this case went to court, Six Nations was also named in the court (application) by McMaster," said Hill. Hill said it was a landmark decision. She said the band office has been receiving texts and congratulations from chiefs across the country.

Rick Hill, a Six Nations historian, chided the media for its coverage of the case, calling it "disgusting. They painted our culture as though it's foolish - that we're foolhardy people. It's that same culture that allowed us to survive here for 30,000 years. It's amazing that our culture, our beliefs are still put up to scrutiny."

He said he was "really disappointed in McMaster University and Six Nations might have to rethink partnerships it has with the university and hospital. We have allowed McMaster to come into our community to conduct studies and research and this is their reaction to our culture. He said First Nation health research is a "very lucrative" for hospitals.

"I think its time we started doing our own research."

He said "This young girl has made a courageous stand on behalf of all of us. The judge made a courageous stand to acknowledge finally, that our way of life deserves the same respect as everybody else's."

Dr. Karen Hill, a family doctor at Six Nations who works with traditional healers in the community, was one of the expert witnesses who testified on behalf of Six Nations. She said she was in tears when she heard the judge dismissed the hospital's application.

"I cannot tell you how wonderful it felt to hear the news that the decision the judge made - that he recognized our inherent right to use our own medicines," she said. "I didn't realize how much it was weighing on me."

She said she wants to work with other doctors in the future to help them understand the importance of traditional medicine and not to "shove western knowledge down our throats."