Children’s Aid Society investigating

The hospital has referred Makayla’s case to the Children’s Aid Society, sparking fears that she may be apprehended and forced back into treatment.

“We just felt so scared that they could actually come in and remove our children from a home where we are loving them and caring for them and we want what’s best for them,” said Sonya Sault.

The Saults are from the New Credit First Nation near Caledonia, Ont. Their chief and council are supporting the family’s decision.

The Saults said their community has also created a group called the "Makayla defence force," a group of hundreds of community members ready to act if Children's Aid attempts to apprehend her.

Decision made after spiritual encounter

During the 11 weeks of chemotherapy, Makayla experienced severe side-effects that landed her in the intensive care unit.

“It's a mother's worst nightmare.… I remember I would just watch her, and listening to her pray, ‘Oh, God. Come and get me, come and take me from here.’ She said, ‘Mom,

[it’s] not the leukemia but it is the chemo that is going to kill me.'”

After Makayla said she had a spiritual encounter in her hospital room, she begged her parents not to make her return.

“I know that what I have can kill me but … Jesus came into my room and told me not to be afraid, so if I live or if I die, I am not afraid.”

The Saults won’t elaborate on the exact medicine Makayla is using but they feel it is already working. 

“There are people in our community who have been on traditional medicines and are well today and are thriving. We know that our traditional medicines work. We know that our daughter is going to be OK.” says Sonya Sault.

The Children’s Aid Society is hoping to schedule a meeting with the family next week to discuss a possible compromise.

In 2008, a Hamilton boy was taken into care after he and his family refused chemotherapy for leukemia.

Thank you for this

I doubt the tradition medicine will be of much use, and I think that any claims for it need to be real.  There's not enough information for me to comment on whether or not it's reasonable for the traditional medication to be used.

When it comes to stopping the conventional medication treatment, it should be allowed.  It makes it easier that she and her parents agree on this.  There are downsides to chemotherapy, and I don't think it should be forced, as long as everyone understands what happens if treatment is stopped.

chemgal, that was my thought as well. She is 10 years old and would she be old enough to make this decision?

Legally, she is not but I've known some very mature 10 year-olds so I don't doubt her capacity to make the decision. Her parents must consent to treatment, though and if her parents and band support her, I'm not sure Children's Aid will be able to do much. There's already too much tension between the First Nations and non-First Nations communities in the Caledonia area so I seriously hope CAS doesn't risk a confrontation over this. It sounds like they are talking to the band to start, so that's a hopeful sign.

Mendalla

Remind me again why Christianity isn't a fucking blight on humanity....

explain what you mean, Chansen.

Yeah, I'm not quite sure where Christianity factors into this. We're dealing with the secular health system and secular child welfare authorities versus traditional First Nations' medicine here.

Mendalla

I think if it wasn't Jesus in that vision, it would have been something else.  Whether or not that influenced her parents, we don't know.

In the last few year I've become much more aware of cancer, and the effects of treatment.  I watched my daughter writhing in pain, sobbing, holding back screams both from chemo and radiation.  After a year of suffering she has been cancer free for four years.  We are hopeful that it has added years of quality life for her - and her children.

Her next door neighbour died from the side-effects of chemo - despite her best efforts to live for herself and her children.

My cousin (in her 70s) stopped chemo when she couldn't stand the pain and suffering it caused.  I don't know what other treatment she might have tried (she'd had a breast removed) but she is enjoying life a year or so later.

I have made up my mind that I will not go through what Seelergirl had to.  Surgery and treatment - but not chemo or the type of radiation that she had.   I'll settle for paliative care.

But here we are talking about a child.  There are lots of questions to be considered.  What is the prognosis if she continues with chemo?  Is there reasonable hope that if she continues with chemo for a few more treatments, she will have a good recovery?   What other treatments could be considered and what is the prognosis with them?   What are the tradeoffs - quality of life vs quantity of life?

And how much does she understand?

I don't see this the same as faith healing.  For the information posted here it seems that the child, her parents, and her people realize that she might die without chemo.  But maybe the odds are not good for her survival with it.  

This is not an easy decision for anybody; nor is it black and white.

If the kid had simply come forward and said, "I can't fight any more," that's a valid reason for doing what she's doing. That Jesus came into her room and told her to stop chemo? Come on, we all know how this is going to end. It's religious escapism from reality, and it is likely to cost a girl her life.

Exactly. Really, we'd all need more information to pass judgement on this, but the doctors are clearly trying. That Children's Aid is getting involved typically means there is a good chance for her with chemo, or else they wouldn't be called.

This is a kid, with potentially a long life in front of her if she can win this battle. That she stops the fight is arguably her call. That she thinks Jesus wants her to stop the chemo, but not necessarily the fight (but with "traditional" medicine) scares the crap out of me. How often do we see this play out? It's depressing as hell, and yes, I'd blame whoever gave her the idea that Jesus can heal her. That thinking has a really good chance of seeing her dead. I've seen enough of dead and dying kids from things that aren't preventable, to accept them dying from things that might be, just because somebody talked to fucking Jesus.

My experience with doctors is that they fight disease.  Generally this is good.  I'm certainly glad that Seelergirl had a doctor who said from the start "We are going to fight this.  We will throw everything in the book at it.  You will be sick, very sick, but you are strong and you can get through it."  

I also know that some doctors can become so focused on the struggle that they tend to forget that they are treating people.   We don't know the prognosis for this girl.  How much pain and suffering should she be put through if the doctor thinks he has a 70% chance of saving her life?  or 50% chance?   But maybe the odds against her are much worse.   We don't know from the information we've been given.

This child accepts the fact that she might die.  To her that is preferable to living a life of extreme pain.  

If I were in that position myself I know what my choice would be.    I wonder if I have the right to deny a child that same choice.

Incidentally, according to the article Jesus didn't tell her to discontinue the treatment.  Jesus told her not to be afraid.  

I thought the prognosis given was reported as 75%, but I would have to double check that.

Well, Chansen , I will agree that Jesus did not enter her room and talk to her. But that is my opinion and your opinion.

But does each of us have the right to our own opinions.

Her opinion was that Jesus came.

However, I think there are a lot of factors that enter into the dropping of  chemo and having just traditional medicine - whatever that is. If she dies, what will it be caused from in both cases ?  Cancer.

Makayla was diagnosed with acute lymphoblastic leukemia in January. Her doctors told her family that she would have a 75 per cent chance of survival if she continued treatment. If not, they warned that her situation could become dire.

http://www.cbc.ca/news/aboriginal/first-nations-girl-chooses-traditional...

No. Here, there is apparently a 3 in 4 chance at survival if she fights tooth and nail. That is, she probably survives if she continues. If she stops, she probably dies.

Weighing on her decision to stop chemo, is a chat with Jesus.

If Jesus didn't come to her like you and I suspect, then religious thoughts are very likely going to contribute to her death. If Jesus did come and talk to her, then Jesus very likely is going to contribute to her death.

Either way, Christianity is not an innocent bystander here.

Someone asked upthread about age of consent - in Ontario, there is no defined age of consent for treatment decisions - capacity for consent is determined on a decision specific basis, and involves a determination of one's ability to understand and appreciate the consequences of the particular decision in question. 

Now we have a bit more information - 75% chance of survival.  With that information I think I would encourage her to try to bear the pain for just a little longer.  

But I think I would still respect her decision.  I think that somewhere above I read that she is 10.  I think her input is valid - it's her life.

As for the Children's Aid being involved - I don't think that proves anything.  I think that Children's Aid gets involved whenever anyone reports a case to them.  I know that twice I reported suspected child abuse/neglect.  One time I was told that the Children's Aid was already involved with the family.  The other time, there was an  investigation and changes were made.   The fact that Children's Aid is investigating doesn't surprise me.   They investigated a neighbour of mine when another neighbour reported them for 'torturing' a foster child, when the family's adopted child through a temper tantrum.   They get involved when something is reported to them.  They follow through.  

Chansen - did you admit that an atheist child might decide to stop treatment and state "I can't fight anymore", and that would be valid?   What if he added "I'm not afraid to die - that would be preferable to this suffering." ?   But because this child said basically the same thing  "It hurts too much.  I want to stop.  I know I might die, but Jesus told me not to be afraid."  It's a terrible thing.  

Intersting, seeler

I am thinking what if a 5 year old cries and cries and asks it to stop. Leave Jesus out of the picture. Is she making her own decision?

The odd thing is that she has gone through chemo treatment and is now in remission. This type of childhood leukaemia is very treatable. This is not some rare, you will nerve recover but have this for your life, disease.

I have a niece who works for children's aid on the native file. She said it would be automatic for children's aid to step In to at least evaluate. The medical staff have n obligation to cll them when a child's welfare is at risk.

It is an interesting cross section of beliefs in this case. Her father is the local pastor, she is native , I assume he is too but that could be wrong.

So she is a Christian but also choosing to follow a traditional smoke and herb cure.

Smoke and herbs are not going to cure leukaemia. I don't think 11 is old enough to make this decision on a disease that should get cured and allow her to live a normal life.

Perhaps she did see Jesus. She said he told her she was cured and in fact the chemo has put her in remission.

I hope they convince her, by here time she needs more treatment , to continue. But she perhaps needs a revised treatment or certainly more support during the therapy.

The authorities are trying to find out if the family or members of the family are "of sound mind". Would seeing Jesus make her of "unsound mind" Just wondering?

Yes, it's a terrible thing. There is nothing wrong with fearing death. It's natural. We have an innate sense to fight to avoid death whenever possible. Christianity looks to a next life, and can, in some Christian circles, even within the UCCan, devalue this one. That's where it's reprehensible.

More information - thanks.  In this case I would agree with the 'wait and see'.  If she is off chemo for the time being, it's not pressing.  Perhaps if and when she needs it again, she will feel strong enough to deal with it.  

My point from the beginning was that its a grey area.  At what point and for what reasons should a person be permitted to make life and death decisions for themselves?  

this article is a bit more fulsome in its descriptions of processes to date, IMO - http://www.tworowtimes.com/news/local/new-credit-child-resists-forced-chemotherapy-treatment/

Such a difficult situation for all parties, I think.  I hope they will find resolution that rests well with all concerned.  I am grateful that I have never had to face such decisions myself. 

Crazyheart - I think the articles use the "in sound mind" phrase poorly.  It's more a matter of what the decision makers understand about the situation - you can see pink elephants & it may not affect capacity!    Here's an article about deciding capacity in young people, for those who are inclined to do more reading -  http://cpj.sagepub.com/content/49/9/834.full.pdf+html

What if she said Elvis visited her? Any different?

I don't think so.

I'm with you in the being grateful that I haven't had to make those decisions, carolla.

I can't imagine how hard it would be as a parent to choose what I believe my child's wants and believes to be true for them but not recommended by the medical profession.

A friend of ours grandchild has gone through four months of aggressive chemo treatment for cancer. How he suffered those four months. He recently received confirmation that the chemo was successful in fighting the cancer. It must have been so hard for his parents to continue each treatment when it made him so very ill. But I am sure today they are thankful they did.

This sounds like a very mature 11 year old girl. Is she capable of making such a decision as this? Only those close to her will know that. If a made decision is not successful then, unfortunately all will have to live with it.

Lastponte mentions herbs and smoke is not enough to kill leukaemia. This could very well be true. Is a little girl's faith enough. I don't know . . .

Hi crazyheart,

In this case it is pretty hard to know what to think.  The case sits almost on my door step and there are factors involved I have precious little knowledge nor understanding of.

Some will be tempted to think of this simplistically as a matter of faith vs science.

Also in the mix, particularly because this is a first nations family is traditional vs colonial.

Add to that a long-running history of disagreement between the Children's Aid Society and more traditional expressions of the first nations people on this particular reservation which has explosive potential.

It is a recipe rife with fear and suspicion so I invite everyone to try those lenses on

A colleague of mine, whom I am quite fond of was stricken with the same form of cancer a few years back while she also served this community.  Her story is very similar to Makayla's even up to the visit from Jesus.

The primary difference is that my colleague understands that the chemo drugs are derived from the Madagascar Periwinkle.  The history of this particular plant is that is has been used in numerous "folk remedies"

Is it part of the traditional means the Sault family are using?

They are being pretty tight-lipped about what meds are actually being used.

The possibility exists that the medicinal benefits of the madagascar periwinkle are still being accessed.

Though I have to admit I suspect that is a very remote possibility.

A dying child who gets tremendously sick from the medications administered will gain a great deal of sympathy from their parents and supporting community.  Should that child beg and plead for relief from those medications any parent would falter in seeing them continued.

So let's see if we can spare a crumb of empathy for a family watching their child die and suffering from the promised cure.  I've sat with many parishioners who demonstrated far more pain and suffering from the chemo than they did while they were dying from the cancer the chemo was intended to cure.

If adults can wish the "cure" to end why wouldn't a child?

In this case the child is 10 years old.

I know what I would do as a parent.  Mind you I'm a white male so most of my racial and social detractors would find me typical.

Do I believe that the traditional medicines will be effective?

No.  I don't.

Do I believe that Makayla had a visit from Jesus?

I'm in no position to insist that she did not.

Do I believe that Jesus told Makayla to discontinue her chemo?

No.  I don't.  According to Makayla's testimony Jesus simply said not to be afraid.  Anyone with any passing Biblical literacy would hear that and take note.  It is not an insignificant statement in our faith narrative.

Does it mean that Makayla should stop the chemo?

No.  It doesn't.

The fact that the Sault family has chosen an alternative "traditional" route suggests that it had that route available to them.  They didn't make it up on the spot nor did Christianity.

They are a desperate family grasping at straws in the middle of a culture which fears the power of the White man greatly and distrusts it more.

So yes, things are tense and things will be tragic.  A tragedy that could have been averted if history had played itself out differently.

So what do I think about all of this?

I think a family is grieving and yet still hoping.  I think they are getting so much "help" from so many corners that it is all but impossible to know which "help" is actually offering a solution to all of their fears.

And to be perfectly candid.  I think the best thing for Makayla would be for the state to flex its muscle and apprehend her and force her to take the proven medicines.

And to save that one child in that one way I would have to repeat a nightmare that Makayla's culture has lived through tens of thousands of times.  Most of those times simply because we thought we were doing the right thing then.

There is no easy answer here.

People will look for one and the easiest answer reached for will be how stupid the family is and what will be completely ignored and overlooked will be our culpability.

This is the world we have created.

It isn't consequence free.

Grace and peace to you.

John

Here are 2 videos - one is  on  the CBC story, the other is on You Tube.

I saw on the CBC last night that this girl is being permitted to stop chemo.  

I don't think we can know it she is making the right decision.

Ask yourself that question again in six months.

I wonder if she's talked to other kids that have gone through this treatment and even some survivors. Maybe she needs more peer support?

That's an excellent point. It's something the hospital has probably tried. At least I hope so. There are so many kids who have been through so much, and are still here.

Chansen - I think she is more concerned about quality than quantity of life.  We will never know how the quality of her life has been affected.  She found that the chemo was more than she could bear.  Her parents agreed.  Under such circumstances I am not sure that forcing her to take more chemo, especially if it meant having the Children's Aid remove her from her parents, could not be considered torture.  Chemo is not without its problems.  I have known people to die from it.  Others have suffered permanent damage.  And it might not have been successful in curing her cancer (I understand that doctors gave her a 70% chance with chemo).

Since we don't know (and will never know) what would have happened if she had continued chemo, I don't think we can know if she made the right decision or not.  If she were my child I would probably have urged her to try it a bit longer, but she is not my child and, fortunately, I didn't have to make that difficult decision.

I think that, whether in six months or six year, she lives or dies she is a brave little girl and right now she says that she is not afraid.

The typical choice is this: 75% chance of survival with chemo, vs. almost 0% chance without it. Yes, the chemo might kill her, but those are the chances you have to take. We know the leukemia will kill her, and that's no fun, either.

Christianity can influence people to make catastrophically bad decisions. I fear that is the case here. Why is she not afraid of death, for example? Could it be it's because she believes heaven awaits? Is that what Jesus told her? Is that what her father told her?

If you're referencing your discussions with Jesus, then religion influenced your decision.

Most of the time, these kids die. That's just the reality of withholding life saving treatment for religious reasons. The few who survive because the cancer went into remission, are lifted up as miracles, but they stand on the graves of many more dead kids for whom no miracles occurred.

It's hard as hell to watch your kid suffer through painful treatment. It's a whole lot harder to watch them die. For that to happen over something so pathetic as religious beliefs would be very difficult to take. I can see why Children's Aid attempts to take custody of kids in the homes of religious nutjobs. Here, an entire defense force threatens a massive standoff, which people in Caledonia remember all too well. So, rather than risk an all out war, trying to save the life of one child, everyone will walk away. The doctors are crushed, I bet. Children's Aid probably feels helpless. The parents get what they want, which at best, is to allow their daughter to avoid chemo. The daughter gets to not be sick this week.

Longer term, we all know the end game. How will the defense force feel then? Who knows. When she gets sicker, will they go back to the hospital? Will her odds be above zero if they do?

I don't have an answer here. I don't think we should go in, guns drawn. I just see this as another example of religion fucking things up and likely costing the world a child. You may see that as my anti-theistic bias, and I understand. But there is so much to be anti-theistic about.

Some people would rather die from cancer than suffer from chemo.  I think as long as they completely understand, there's nothing wrong with having the choice between the two.  We all go eventually.  Religion isn't a huge influence on how I feel about this.

Chemo doesn't just have short-term side effects, there are long-term ones too.

I don't agree. I really don't think a child can understand the situation.

I agree that not going through chemo is a good thing.

But if this child dies I think it will be because no one wants to push the aboriginal "healing"

And that is too bad.

If smoke and herbs could heal cancer. Then the entire world would be onto it. Don't you think?