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Girl Wants Out of Chemo
May 14, 2014 permalink
Eleven-year-old Makayla Sault of the New Credit First Nation near Brantford was diagnosed with Acute Lymphoblastic Leukemia (ALL) and underwent chemotherapy. Now that the disease is in remission Makayla and her family want to end the chemo therapy in favor of a traditional remedy. McMaster Children’s Hospital has alerted the children's aid society and legal process is under way to force therapy on the girl. The article mentions the similarity to the earlier case of Devon Sweeney:         .
New Credit child resists forced chemotherapy treatment
NEW CREDIT – Makayla Sault, daughter of Pastors Ken and Sonya Sault has taken a very brave and bold move to assert herself. The 11 year old, who was diagnosed with an aggressive form of leukaemia in January, has asked her parents to stop chemotherapy treatments and instead give her Ongwehowe Onǫhgwatri:yo: (traditional medicines).
They have done so, and now McMaster Children’s Hospital says that they have a fiduciary responsibility to report the Sault’s to the Children’s Aid Society for keeping Makayla out of chemotherapy. Additionally, despite hours of consultations with various physicians, and indigenous officials, McMaster Children’s Hospital is pursuing a judicial process with the Consent and Capacity Board, a provincial body, to determine if Makayla or her family are of sound mind.
If the Consent and Capacity Board deems that Makayla and her parents are not of sound mind to make this decision, all involved are concerned that the Children’s Aid Society will move to apprehend Makayla from the New Credit First Nation and force her into chemotherapy, thereby derailing the Ongwehowe Onohgwatri:yo: process she is on.
That decision also would violate Articles 10 & 24 of the United Nations Declaration on the Rights of Indigenous Peoples; that indigenous people cannot be forcibly removed from their lands without free and prior consent, and the right to use traditional medicines and health care practices without discrimination.
Makayla was diagnosed with Acute Lymphoblastic Leukemia (ALL) but also tested positive for the Philladelphia chromosome. This particular combination makes an aggressive form of leukaemia which, from a pharmaceutical perspective, requires two years of aggressive chemotherapy treatment with a survival rate of 75%.
However during the 11 weeks of chemotherapy that Makayla did complete, which brought the ALL into remission, the child endured acute side effects, including constant nausea, weakness, muscle wasting and a ten pound weight loss.
Pharmacists prescribed the child a variety of anti-nauseants, including medical marijuana to try and help control the vomiting, but there was no relief, leaving many in her team struggling to find a solution to alleviate Makayla’s severe side effects. “They kept saying that she is our mystery child,” said Makayla’s father Ken Sault, a well known Pastor of the New Credit Fellowship Centre.
“Coming to the last weeks of her treatment alarms started to go off inside of me” said her mother, Sonya. “It was that maternal instinct that told me that we’re not doing the right thing with her. She was so weak that when you went to go and talk to her you would have to get right down just to be able to hear what she is saying.” Sonya said. “I remember Makayla said to me, ‘Mom I can’t take this anymore. I want you to get me out of here. I don’t want to go this way no more’.”
The Saults’ were allowed to take Makayala home for a break from chemo. That is when the child spoke up and asked her parents for help. Her mother explained, “Makayla said to me, do you have the power to get me out of there? If you have the power to take me out of there I want you to take me out of there. I’m telling you mom it’s not right. The way that we are going it’s going to kill me.”
In the meantime, the child had a spiritual encounter where she says Jesus appeared and told her that she was healed. This encounter has been revered by the traditional healers and members of the New Credit First Nation, but the medical team told the family that in light of her spiritual encounter, she needed a psychiatric evaluation.
Taking all of this information, and Makayla’s specific request to stop chemo and instead use Onǫhgwatri:yo:, the family came together of one mind and is now treating the child via a traditional healer on Six Nations.
Hamilton Health Sciences has a number of Aboriginal Patient Navigators on staff to help medical officials and indigenous patients communicate effectively. However despite the hospital being next to Six Nations, which is the largest Indian Reserve in Canada, they do not have a current protocol in place for children whose families opt for Ongwehowe Onohgwatri:yo: instead of pharmaceutical therapy.
Because the hospital has no current protocol for indigenous families pursuing traditional medication in lieu of pharmaceutical treatment for children, staff feel that their hands are tied and that they need to bring this matter to a higher level of consultation with the Children’s Aid Society and the Consent and Capacity Board.
The Sault’s said that in a previous meeting one of the members of the team assigned to Makayla’s case told them that if they did not proceed with the two year protocol of chemotherapy for Makayla that Children’s Aid would become involved and that all three of the family’s children would be apprehended.
Apprehending children for preventing them access to chemotherapy is not a situation unheard of in Ontario. In 2008 an 11 year old Hamilton boy was temporarily apprehended by the CAS during a routine visit to McMaster and his parents were handcuffed and escorted out of the hospital by security after they refused to continue chemotherapy at the boy’s request.
The Saults say they are not refusing treatment, only one form of treatment via chemotherapy.
The family has put together a number of meetings with the staff of McMaster including the lead physician overseeing Makayla’s chemotherapy. McMaster proposed a compromise to combine chemo and Ongwehowe Onohgwatri:yo:, however the family declined stating that the chemo makes the child too sick to keep down the medicines traditional healers would be administering.
As for Makayla, the traditional medicines have helped her put the weight back on that she lost while in treatment. She isn’t vomitting anymore and she will be entering the track and field meet at her school in the coming weeks.
The CCB hearing date is not set at this time.
Source: Two Row Times
Addendum: Brant CAS has decided not to apprehend Makayla.
No plans to take New Credit girl away from parents: CAS
The Children's Aid Society of Brant says it won't take a cancer-stricken 11-year-old New Credit girl away from her parents after the family refused further chemotherapy treatments in favour of traditional medicine.
"We have no plans to apprehend the child. I understand on the referral that the family was told that we might do that. We don't have any plans for that," Andrew Koster, the society's executive director, said Monday.
"We are just hoping that there ends up with some kind of compromise that considers the child's safety and also her well-being."
Makayla Sault was diagnosed with acute lymphoblastic leukemia in January. She has refused to resume chemotherapy, in favour of indigenous traditional medicine after the side-effects of her treatment became too much for her to bare.
Koster said he's meeting with representatives from the New Credit First Nations and the Sault family on Tuesday.
Just weeks ago, Makayla's father Ken said he had to carry her around wherever she went because she had no strength to do it on her own. On Sunday evening, the girl led nine other children in a dance routine in front of a park full of supporters.
"She's been through an experience and these past few days, she's had a complete turnaround," Ken told a crowd of about 200 people at Veteran's Park in Oshweken Sunday night.
"This (story) has gone all across the country, standing up for our rights and privileges as First Nations … this is not affecting just our daughter, but it affects our nation as a whole, of First Nations people across this land," he said.
The crowd gathered for the Bread and Cheese fest, part of Six Nations Community Awareness week.
Ken, a pastor at the New Credit Fellowship Centre, introduced performers and speakers and led the concert with his wife Sonya.
"To see our daughter walk a path that she's called to walk, we stand with her and we support her 100 per cent," said her mother Sonya. "I know it's something that the medical world can't understand."
Through tears, Makayla spoke about her diagnosis and her "very intense chemotherapy." She was constantly throwing up; she couldn't walk; she lost her strength. She couldn't speak and she didn't want anyone to visit her in the hospital because she was so sick.
"I remember the nights when I would just pray to God to come get me, because I couldn't fight it anymore," she said weeping, while the crowd stood silent.
The family declined to speak to The Spectator at the event.
When the family decided to stop the treatment, McMaster Children's Hospital called CAS.
A statement issued by McMaster on Friday said it had no choice but to refer the case to the CAS.
"It is a legal obligation under the Child and Family Services Act of Ontario. It is then up to the CAS to determine whether action is required."
On Sunday, Six Nations Chief Ava Hill took to the stage to offer support for the family at the event.
She told The Spectator she was surprised McMaster had contacted CAS as she believes the choice of treatment should be a family decision.
"McMaster is so close to our community, people here have been taking traditional medicine for years. For them to now say it's not going to work is ludicrous," Hill said.
Source: Hamilton Spectator
Barbara Kay says Makayla faces an increased risk of death with the decision to switch to a traditional remedy, one that is probably a traditional placebo. She says this is a case in which the girl should be treated as a child in need of protection.
Medical interventions that reach the press are of the kind here, where medical technology could save a child otherwise facing a high likelihood of death. But that is not the common use of intervention for medical neglect. The overwhelming use is to force psychotropic drugs on unwilling children even when their parents demur.
Barbara Kay: Makayla needs to be saved from cultural correctness
Religion, medical science and the best interests of children can make a hot-potato stew. What do you do, for example, when scientifically ignorant parents believe prayers will be more efficacious than a proven medical intervention to save a critically ill child?
That was the question asked and answered in the 1995 case, B(R) v. Children’s Aid Society of Metropolitan Toronto, when Jehovah’s Witness parents refused a blood transfusion for their severely anemic 1-year-old daughter who was at risk of congestive heart failure. The decision was to make the baby a ward of the court in order to administer the transfusions, because it was felt that they offered the child’s best hope for survival.
The Supreme Court of Canada ultimately ruled that this state intervention was a legitimate limitation on religious freedom. In their ruling the Court considered Canada’s Charter of Rights (section 2 (a) – right to freedom of conscience and religion) versus the Ontario province’s obligation to a “child in need of protection” under the Ontario Child Welfare Act.
Jehovah’s Witness is a religion, not a culture. Its practitioners are not a burden to Canada’s national conscience. The transfusions would not afflict the baby with undue suffering. And in any case a baby has no opinions of its own to consider. The ruling doubtless pleased the vast majority of Canadians.
Today we contemplate the case of 11-year old Makayla Sault, an aboriginal child from the New Credit First Nation, afflicted with a rare form of leukemia touching only three to five percent of children with the disease. Its prognosis used to be extremely grim even with aggressive and uncomfortable medical intervention.
But the survival rate has increased dramatically under new medical protocols, which would give Makayla 70% odds of survival if followed to completion. As Christie Blatchford wrote in her May 22 column, “[Makayla’s] doctors at McMaster had good reason to believe she has a real shot at beating this thing – and that stopping the treatment after only one round, would put her at risk.”
Makayla seems to be a remarkably mature child with decided opinions of her own regarding her treatment. And she has made it crystal clear, with the encouragement of her parents Ken and Sonya, that she wants to stop the debilitating chemotherapy treatments she has been enduring in favour of a native treatment administered by a native healer from the nearby Six Nations reserve.
Makayla’s case was investigated by local Brant Family and Children’s Services. Two outcomes were possible. Either Brant could apprehend Makayla and force continuation of medical treatment, or they could acquiescence to the family’s wishes. Brant chose the latter course on “humane” grounds.
And are we happy with this decision? I confess that I am not happy at all. I would consider it far more humane in the long run to provide Makayla with optimal odds for survival than to grant a tranquillizing respite based on an illusory hope of a cure arising from “medication” for which no research or scientific literature exists.
I cannot imagine a more pressing “best interest” than life itself. And I have no confidence at all in the efficacy of homemade brews. I daresay most Canadians would agree that the chances of a cure from whatever natural ingredient is involved here are vanishingly slim; if native treatments for cancer were truly efficacious, that would be a hard secret to keep.
The problem is that Makayla has been told by people she trusts that she has just as good a shot at survival with natural treatments as with chemo. So she is not basing her decision on informed consent. What naïve child wouldn’t choose a painless procedure over a painful one, if her own parents and other trusted adults had given her such assurances?
I cannot help but think that this decision, unlike the Jehovah’s Witness case, has been influenced by political squeamishness rather than common sense. In its essentials, the 1995 case and this one are parallel, as both involve children who are incompetent to objectively assess their own long-term interests, and loving parents with the best of intentions, but guided by faith-based trust in remedies they erroneously consider the healing equivalent of medical science. Makayla’s parents have misinformed her. But Makayla does not know that. It is better that this little girl should be seen “as a child in need of protection” than run the elevated risk of her dying as a martyr to cultural correctness.
Source: National Post
The press has gone back to the case of Devon Sweeney. Devon is alive, but has not otherwise had a good outcome.
Family says forced chemotherapy wrecked their son’s mind
A Hamilton family whose son was forced to have chemotherapy says it saved his life, but wrecked his mind and body.
The boy, who can't be named because he is under the care of the Children's Aid Society, was 11 years old when he refused treatment for acute lymphoblastic leukemia because he believed God would protect him. His family wanted to turn to traditional indigenous medicine instead.
He was seized by the CAS in 2008 and a judge ruled the boy, who has fetal alcohol syndrome, wasn't capable of making an informed decision.
"They should never have done what they did," his stepmother told The Spectator Friday. "I'm thankful he is alive, but at what cost to his body and mind? He's a different person now."
She says his behavioural issues escalated after he was forced, under the watch of security guards, to have chemotherapy.
"He's angry at the system," she says. "He feels the system failed him. It made him rage against the machine."
His stepmother says he was diagnosed with post-traumatic stress disorder. He self-harms, including cutting, and once tried to kill himself, she says.
Now at the age of 17 , she says he's recently been convicted of a number of crimes including arson, assault and mischief.
"It has been a roller coaster."
She says his body has also felt the effects of the treatment including issues with his sight, bladder and mobility, as well as delayed puberty.
She says he's lost his faith in God.
"He tried to hold strong to his faith," she said. "It's sad."
His stepmother, who is native, strongly believes he would have survived if he'd got traditional indigenous medicine instead.
"If they'd let me give him the natural medicine there might have been a different mental health outcome."
She hopes telling their story will help the New Credit family of 11-year-old Makayla Sault who wants to fight leukemia with traditional indigenous medicine.
"Stay strong and hold on to your beliefs," she says to them. "I still stand by it 100 per cent. They are native people. They should believe in their own medicine."
Source: Hamilton Spectator
Addendum: Makayla died on January 19, 2015.
Makayla Sault, girl who refused chemo for leukemia, dies
Ojibwe girl, 11, dies after abandoning chemo in favour of traditional, alternative treatments
Makayla Sault, the 11-year-old girl who refused chemotherapy to pursue traditional indigenous medicine and other alternative treatments, has died.
She died Monday after suffering a stroke Sunday.
"Surrounded by the love and support of her family, her community and her nation … Makayla completed her course. She is now safely in the arms of Jesus," her family said in a statement published by the Two Row Times.
The girl’s case made national headlines and ignited a debate about the validity of indigenous medicine and the rights of children to choose their own treatment.
Makayla was given a 75 per cent chance of survival when she was diagnosed with acute lymphoblastic leukemia (ALL) in March. She underwent 11 weeks of chemotherapy at McMaster Children’s hospital in Hamilton.
Her mother, Sonya Sault, said Makayla experienced severe side-effects and at one point ended up in intensive care.
After Makayla said she had a vision of Jesus in the hospital, she wrote a letter to her doctors asking to stop treatment.
“I am writing this letter to tell you that this chemo is killing my body and I cannot take it anymore.”
She left chemotherapy treatment while in remission to pursue alternative and traditional indigenous medicine.
"Makayla was on her way to wellness, bravely fighting toward holistic well-being after the harsh side-effects that 12 weeks of chemotherapy inflicted on her body," the family statement reads. "Chemotherapy did irreversible damage to her heart and major organs. This was the cause of the stroke."
Although her family claims her death was due to chemotherapy, in September, a McMaster oncologist testified that Makayla had suffered a relapse. The doctor also testified that there are no known cases of survival of ALL without a full course of chemotherapy treatment.
Attended 'life transformation program'
When Makayla decided against continuing chemotherapy, the hospital referred her case to the Brant Children’s Aid Society. After a brief investigation, it decided Makayla was not a child in need of protection and that it would not apprehend her to return her to treatment.
In an interview with CBC News in May, before the Brant Children's Aid Society closed its investigation, the director Andrew Koster said, "For us to take her away, to apprehend and place in a home with strangers, if that's the case, if there aren't any relatives, when she's very, very ill — I can't see how that would be helpful."
“I think people much more knowledgeable than ourselves need to be involved to look at what types of traditional medicines are being used, how does it fare up to some of the chemo treatments," said Koster.
In July, Makayla travelled to the Hippocrates Health Institute in Florida and took its three-week "life transformation program." A CBC investigation revealed that Hippocrates is licensed as a "massage establishment," and is being sued by former staff who allege the company's president Brian Clement is operating "a scam under Florida law" and practising medicine without a licence.
Makayla touched everyone she knew, said Peter Fitzgerald, president of McMaster Children's Hospital, in a statement.
"Her loss is heartbreaking," he said, extending his condolences to her family.
Related precedent-setting case in Ontario court
Her death comes a few months after an Ontario judge ruled in an unprecedented case of another First Nations girl who also refused chemo.
The girl, whose identity is protected under a publication ban, was diagnosed with acute lymphoblastic leukemia in August. Doctors at McMaster Children’s Hospital gave her a 90 to 95 per cent chance of survival.
After 10 days of chemotherapy, she and her mother left McMaster to seek treatment at the Hippocrates Health Institute in Florida.
The mother of the 11-year-old girl, who cannot be identified because of a publication ban, says the resort’s director, Clement, told her leukemia is "not difficult to treat."
Clement, who goes by the title "Dr.," denied telling the mother that.
In an interview with CBC's Connie Walker, Clement said, "When we educate them they take care of themselves," he said, before shouting, "You're a liar. Get off the property."
In an interview with CBC News, her mother said, “This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work.”
The girl's mother said her daughter received cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies at Hippocrates.
Judge Gethin Edward rejected the application from the Hamilton hospital that would have seen the Children’s Aid Society intervene in this case.