Tomorrow Makayla Sault's family will lay her to rest. The 11-year-old First Nations girl died on Monday, nearly one year after her leukemia diagnosis and nine months after leaving chemotherapy treatment at McMaster Children's Hospital in Hamilton.
Her death is something many feel could have been prevented.
But while it is too late for Makayla, it's not too late for another First Nations girl with leukemia. Her mother took her out of chemotherapy at McMaster last August after 12 days of treatment.
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Her doctors gave her a 90 to 95 per cent chance of survival with chemotherapy, but cautioned that the longer they wait, the harder the fight will be.
We can't identify her, other than by the initials J.J., because of a publication ban, but I've met her and her mother.
I spent a morning with them at their home on a First Nation near Brantford, Ont., in November.
When we arrived, J.J. was preparing her "green drink" of wheatgrass and juiced raw vegetables. Raw vegetables have been pretty much the only thing she's been allowed to eat since she left chemotherapy in August.
But if she minded, she didn't say. She didn't say much of anything actually. She was quiet and shy but very sweet, and like most children in a frightening situation, she looked often to her mother to guide her.
A fierce love
Her mom is a strong, confident woman. Direct and honest. Not afraid to share her views.
We had a long interview at their kitchen table where she described in detail her experience since her daughter's diagnosis.
Last summer, she says, she had a healthy, happy daughter, and within a matter of weeks she was living every parent's worst nightmare. It was obviously traumatizing for both.
There is no doubt she is a mother who loves her daughter fiercely. She won't let anyone stand in her way in doing what she believes is best for her little girl.
And while a court battle was waged for weeks to decide J.J.’s fate — doctors at McMaster had petitioned the local Children's Aid Society to intervene and keep her in chemotherapy — the court never observed any of these family dynamics.
The girl and her mother never once appeared before Judge Edward Gethin in the Brantford courthouse. For most of the hearing, they weren't even in the country.
While those in the courtroom debated the validity of indigenous medicine, J.J. and her mother were in the most un-indigenous place I've ever been to: West Palm Beach, Fla., at the Hippocrates Health Institute.
It was a place J.J.’s mother was convinced was better for her daughter than any Canadian hospital.
In fact, it was the mother who urged me to look into Hippocrates. She felt we in the media were focusing too much on the indigenous medicine and not enough on the "comprehensive treatment plan" she had chosen.
It was a deliberate choice. Her mother told me that as soon as her daughter was diagnosed, she knew she wanted to send her to Hippocrates, which she had first heard about it through a family friend.
But at first she didn't have the thousands of dollars it costs to attend Hippocrates. So she started the chemo even while saying she didn't feel right about it.
She also said the family was relying on indigenous medicine from the start, including when they were in chemo at McMaster, and continued to do so while they were at Hippocrates. She showed me the medicine.
There were two teas — one given to her by a healer in their community and another sent by someone she met on Facebook who says he is a medicine man from Saskatchewan.
The tea was likely the only indigenous medicine at Hippocrates.
'It's like a resort'
As a First Nations person myself, I'm confident I can say that none of my ancestors abided by a strict raw vegan diet, or took high doses of vitamins intravenously or underwent cold laser technology. Regardless, her mother said Hippocrates was in line with her belief in natural medicine.
'[Brian Clement] was not afraid of cancer. Cancer didn't shake him like it shook me.' — J.J.'s mother
She described Hippocrates as an amazing place. "It's like a resort," she said. She spoke about the director, Brian Clement, with glowing adoration. "What struck me most," she said, "was he was not afraid of cancer. Cancer didn't shake him like it shook me."
I've seen many videos of Clement. There is no doubt he has a way with words. He travels around the world giving lectures, extolling the virtues of wheatgrass, and talking down vaccines, cancer and Western medicine.
It was his words that convinced her to leave chemo. She said she called him from the waiting room at McMaster and he assured her that leukemia was "not difficult for them to deal with."
It's a claim he denied when we confronted him about it in Florida. He denied other allegations, too.
No, he was not practising medicine without a licence as some former employees of his alleged. Nor was he treating people battling cancer and other serious illnesses, he said. He was teaching them to heal themselves.
Can he give me the names of anyone he's helped? I asked. "Get off my property!" he shouted.
Is the treatment working?
Our look at Hippocrates might make some people question its methods. But not J.J.'s mother. When I called to tell her about what we uncovered, she said she didn't care. The treatment was working, she felt, and that was all that mattered.
Despite the news of Makayla's relapse and fight to stay alive in the months leading up to her death, her faith remained unwavering.
Last Friday, she posted a video to Facebook. It starts with her daughter standing in front of the wheatgrass sprouts they are growing for her green drink.
J.J. has her hands in her pockets. Her mother says, "I just got a call from the Toronto Sick Kids … and they gave me the results of your test..."
There is a dramatic pause before she asks "How come you're looking at your sprouts?" J.J. shrugs and after another pause, her mother says, "The doctor told me … that … there is no cancer in your bone marrow, there is no cancer in your spinal fluid."
She holds the camera on her daughter's face. Neither of them speak while her daughter wipes tears off her face. Finally, her mother hugs her and they cry together.
The relief on her daughter's face is nothing short of heartbreaking. Her mom is still holding the phone out and turns it toward them so we can see the hug and the tears.
I tried calling her after seeing the video, to verify the results and get more information about the test, but since our first story aired about Hippocrates, she no longer wants to talk to me.
In our earlier interview, she told me that she won't rule out returning her daughter to chemotherapy if her treatment plan fails.
But she clearly believes that what she is doing is working.
Her daughter may very well be in remission, perhaps from the little chemo she initially received. Makayla was in remission too. It lasted for a few short months before her cancer returned.
An oncologist I spoke to said that although this type of leukemia is very curable, it needs to be treated urgently.
Most children go into a remission in the first four weeks of chemo, but a remission does not necessarily equal a cure as some undetectable cancer cells can remain, which is why a long treatment of two or more years is required.
Role of Children's Aid Society
At the court hearing, J.J.'s oncologist testified that doctors don't know of any cases of survival of this type of leukemia without chemotherapy.
That certainty, along with Makayla's death, adds to the pressure on Andrew Koster and his team at the Brant Children's Aid Society (CAS).
Twice now they have decided not to intervene when these girls' parents took them out of chemotherapy.
Both times, after just a few days investigating, they determined that despite the life-threatening illness that would almost surely result in death without treatment, these girls were not in need of his protection.
I interviewed Koster in May. In his office, he showed me the hutch filled with First Nations artifacts he's collected over the years of working in child welfare.
He said it was the Child and Family Services Act that required them to "respect First Nations culture" and he "couldn't even begin to think" about removing her from a caring family environment and forcing her into chemo.
I can understand this logic. I know, first hand, the impact that previous child welfare policies and the after-effects of residential schools have had on our communities.
But is this really the same situation? Isn't this more about two girls having the same rights to be protected as other kids in Canada?
At the court hearing involving J.J., Koster's lawyer argued that it was not a child welfare issue, that the responsibility rested on the doctors who didn't assess whether or not J.J. had the capacity to choose her own treatment.
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In November, in what was called a precedent-setting decision, the judge dismissed the CAS argument, but still ruled against the hospital. He said it was J.J.'s mother's aboriginal right to choose indigenous medicine.
But now, with Makayla's death, there have been a number of calls, particularly in national media, to ensure that J.J. doesn't suffer the same fate. As the head of the Brant CAS, Koster might be the only one in a position to make that happen.