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Alternative / holistic therapy - sad case

by TerryH on Thu Jan 22, 2015 12:14 pm

I came across a news story this morning that reminded me of postings I had seen here in the forum about alternative / unconventional / holistic therapies.

A First Nation girl in Canada who had a highly treatable form of leukemia refused chemotherapy after initially being treated with it, and she died this Monday.

The girl had acute lymphoblastic leukemia, which, according to specialists, has a cure rate of about 80 to 90 percent. She suffered a stroke, which her family is attributing to one of the chemo drugs she had been given, but which specialists say is unlikely to have been the cause of the stroke, since it has been almost a year since the three months of chemotherapy she received.

Instead, specialists say the likely cause of the stroke was thickening of her blood due to the progression of the disease.

There are lots of news stories out there about this development. Here are two that may serve as a good starting point:

"Ontario girl Makayla Sault, who refused chemo in favour of traditional medicine, dies," Global News, January 19, 2015.

Makayla Sault, the 11-year-old Ontario girl who refused chemotherapy treatments in favour of indigenous medicine, died Monday.

Makayla, a member of the New Credit First Nation near Caledonia, Ont., made national headlines last year when she refused chemo for her leukemia. The province’s Children Aid Society chose not to intervene after her family decided to pursue alternative medicine.

A statement from the family published in the Two Row Times said Makayla died on Monday at 1:50 p.m. after suffering a stroke Sunday morning ...

She had been receiving chemotherapy for acute lymphoblastic leukemia at McMaster Children’s Hospital in Hamilton when she decided to stop the treatment in the spring of 2014 after suffering severe side effects.

"Makayla Sault likely died from rebounding cancer, not chemotherapy effects: specialist," National Post, January 20, 2015

... Makayla, a resident of Ontario’s New Credit First Nation, pulled out of treatment after her first round of chemo last spring, opting instead for native and other alternative remedies, including a stint at a non-aboriginal “holistic”-health clinic in Florida.

Doctors say 80-90% of children with acute lymphoblastic leukemia [ALL], which she had, can be cured today with proven medical therapy.

But in a statement Monday, Makayla’s parents blamed her death squarely on the treatment she received at a Hamilton, Ont., hospital.

She was “bravely fighting toward holistic well-being after the harsh side effects that 12 weeks of chemotherapy inflicted on her body,” they said, but “chemotherapy did irreversible damage to her heart and major organs.”

“This was the cause of the stroke,” the family said, without elaboration.

A Western Canadian pediatric oncologist, who asked not to be named because of the case’s “political sensitivity,” challenged that assertion, however.

There is one drug – asparaginase – the girl might have received that could have caused a stroke within a week or two of first receiving chemotherapy, the specialist said, but not months after the fact.

“It had absolutely nothing to do with the chemo,” asserted the university-based oncologist, while cautioning that he was not familiar with the details of her specific case. “It probably has everything to do with the leukemia coming back and causing her death, which is what it does when you don’t treat it.”

The cancer cells that accumulate in an untreated child’s blood make it more viscous, and more likely to cause clots that could lead to stroke, the physician said.

TerryH

Re: Alternative / holistic therapy - sad case

by Nancy Shamanna on Thu Jan 22, 2015 1:10 pm

Thanks for posting that, Terry H. It's a national scandal actually. This was an 11-year-old girl whose parents allowed HER to refuse treatment. They took her to an 'alternative' medicine clinic in the US, BUT that did not help her, and it was not a centre of what you would think was aboriginal traditional medicine.

There have been editorials written about this case. If she had been taken from her home by Social Services in order to force her to have the usual chemotherapy for her blood cancer, there probably would have been large protests.

I feel very sorry for the little girl and her family, who I think were terribly misinformed.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Alternative / holistic therapy - sad case

by Salzmav on Fri Jan 23, 2015 6:53 am

Unfortunately this happens the world over. I live in Australia, here is one story from 2009:

A couple whose baby daughter died after they treated her with homeopathic remedies instead of conventional medicine have been found guilty of manslaughter. Gloria Thomas died aged nine months after spending more than half her life with eczema. The skin condition wore down her natural defenses and left her completely vulnerable when she developed an eye infection that killed her within days of developing. Thomas Sam, 42, a homeopath, and Manju Sam, 37, of Earlwood, Sydney, were charged with manslaughter by gross criminal negligence."

Here is another from 2014:

Tamar Stitt reportedly died in El Salvador in November 2009 after a long battle with stomach and liver cancer. The 10-year-old had been in the country's capital city San Salvador receiving natural therapies after her parents, Trevor and Arley, flew her out of Perth the night before the Supreme Court of West Australia was due to decide if she should be forced to have chemotherapy. The Department of Health and Princess Margaret Hospital launched legal action after Mr and Mrs Stitt decided to withdraw their daughter from the care of the hospital."

Why should children be made to suffer and die because of the ridiculous notions of deliberately ignorant parents?

Salzmav
Name: Salzmav
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2010
Age at diagnosis: 52

Re: Alternative / holistic therapy - sad case

by Melanie on Fri Jan 23, 2015 8:38 am

Right now I have been following the story of a young woman named Cassandra C. from Connecticut who was recently removed from her home by the state's Department of Children and Families because she and her mother wanted to treat her Hodgkins lymphoma with alternative medicine. It raises a lot of interesting issues because, in approximately 9 months, she will be 18 and legally old enough to make her own medical decisions, yet, right now by law, she is not.

Her doctors have said her cancer has an 85% cure rate, but the girl's mother believes and taught her daughter that chemo is poison and therefore the girl was deciding against chemo.

Granted, chemo can be considered "poison", but an 85% cure rate is nothing to sneeze at. This kind of makes me angry since multiple myeloma is incurable and this mother and her daughter just seem to think doctors are out to poison the world.

Melanie
Name: Melanie
Who do you know with myeloma?: husband
When were you/they diagnosed?: July 2014
Age at diagnosis: 54

Re: Alternative / holistic therapy - sad case

by Eric Hofacket on Fri Jan 23, 2015 7:26 pm

I get why people may be lured into trying alternative medicine when there are no more options left and they are desperate. That is a really tough spot to be in. Walking away from a treatment that has an 85% average cure rate for “alternative” medicine of unknown and unproven ef­fec­tiveness is beyond any logic I can understand.

Often I see that people who pursue alternative medicine and are very strong and vocal advo­cates of it go completely silent when it fails them. In comparison, I see people who try “con­ven­tional” medicine – such as Revlimid, Velcade, etc – have no difficulty being open about this when it eventually fails them. The Beacon is full of such postings.

For those who have pursued alternative therapy, it is like they have put their personal repu­ta­tion behind it, as if it were their own cure or invention. Neither I nor my doctors have any per­son­al stake in the treat­ments I receive, other than the most important one: Do they work or not. If not ,then we move on to something else.

I really appreciate and admire the courage of those who have tried alternative medicine and come forward with their stories when it has failed them so others can learn from their ex­per­ience. It seems this is a really hard thing to do being afraid of being ridiculed for trying al­ter­na­tive medicine.

I really dislike the word “alternative medicine”, by the way, as it implies some legitimacy in terms of it being medicine. To me, there are treatments that work and those that do not work, and that is how I see them. Not “conventional” or “alternative”. If a treatment works or shows some effectiveness or benefit, then it is just another treatment option, not an “alternative” treatment option.

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: Alternative / holistic therapy - sad case

by Guitarnut on Fri Jan 23, 2015 9:00 pm

Eric makes some great points and I wholeheartedly agree.

The thing that really bugs me about the proponents of "alternative medicine" is they ALWAYS feel the need to bash conventional medicine, which is my choice of treatment. I feel they are attacking me personally and it really gets my dander up! I find it amazing for anyone to publicly state they are taking coffee enemas or taking hundreds of capsules of swine enzymes or herbal concoctions and then look at the rest of us with disdain as if we're idiots. That just boggles my mind!!

You want to try a different course of treatment? That's great! It's your choice and yours alone. I sincerely hope it works out for you. I really do. Just don't use your words and tone to cut down others' treatment choice in the process!

I personally don't believe children have the maturity to make treatment choices like that in most cases. Unfortunately, the stories posted here point that out. For an adult to allow their paranoia of conventional medicine and anecdotal evidence of alternative medicine to be viewed as factual, and cost their child their life, is just unfathomable to me.

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47


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