meow_173

He doesn't believe he will die.
It's that simple.
The cancer will not kill him. It won't get him the way it got his mom, he says. God will protect him. He does not want chemotherapy. It makes him sick.
But does it matter what he believes? What he wants?
The law says 'no.'
He is 11 years old. He has fetal alcohol syndrome and is in special education classes and has acute lymphoblastic leukemia.
Two of the country's top child cancer specialists say he will die without treatment.
A judge has ruled the boy cannot make an informed decision. That he is not capable of thoroughly understanding what it means to refuse chemo. That his father and stepmother -- who are backing his decision -- are not doing what is in the child's best interest.
And so, the sick and tired boy has been taken into the care of the Children's Aid Society of Hamilton. He is being forced to have treatment.
Late yesterday afternoon he is in a room at McMaster's Children's Hospital. He has, because of an interim family court order, completed his second day of chemo. His window faces the hospital's front entrance. Below that, with security guards watching, the boy's family gathers. His father, his stepmother who has raised him these past four years, his grandmother and sister, who is older by nine months.
They are about to see the boy for the first time in nearly two days.
He has been kept company by CAS workers. But his family has been banned from the hospital since he was seized during an appointment there and his father went into a rage, swearing, yelling and threatening CAS staff.
He was removed in handcuffs.
Dad is thin and quiet. Stepmom is angry. Sometimes she weeps.
The boy and his family cannot be identified because of their involvement with the CAS.
This is not the first time CAS has been a part of their lives.
When the boy was small, his mother was diagnosed with brain cancer. While she was ill, he and his sister were put in foster care and his mom gave birth to another baby. That child lived four days. Relatives say it died because of mom's cancer treatments. Treatments that didn't work and she died. The boy was four. When he was seven, he was diagnosed with cancer. He had chemo therapy.
"He couldn't even get out of bed," his stepmom says.
He had sores in his mouth. He had to wear diapers. His hair fell out. His legs were weak. He slept most of the day. Couldn't keep food down.
It was hell. But it worked.
For a while. He had one year of remission. A year of good health and high spirits. A year to go to Disney World. Enjoy school. Dance. Run.
Jan. 27 he celebrated his cancer-free year. Feb. 8, it was back.
"He was in tears," his stepmom says. "He was angry. He was yelling at the doctors, 'You lied to me.'" That day he punched his arm through his bedroom window and needed stitches.
The boy's fetal alcohol syndrome means he has difficulty learning. He sees a psychiatrist and a few months ago "he was hearing voices telling him to hurt his sister," his stepmom says.
He did one round of chemo in February. Then said no more.
They discussed it as a family and decided to honour his wishes.
The family says they have native blood in their veins. That dad's ancestors were native. That stepmom is native. And that the boy is Metis. (Family court documents say, however, that the child is "found to be non-native" and "non-Indian.") They say their spiritual beliefs guided their decision.
"There is only one person -- The Creator -- who decides who lives or dies," says dad. "It's not you or me or McMaster Hospital or the CAS -- it's The Creator."
They told Dr. Ronald Barr, Mac's chief of oncology, that the boy would not have any more treatment. They could not be swayed.
So the hospital called the CAS.
"The agency got a referral from doctors stating this child needed treatment," says CAS executive director Dominic Verticchio. "If he didn't have treatment he'd have up to six months to live. With treatment, he has up to a 50 per cent chance of going into remission."
CAS staff met with the family. Tried to negotiate. Persuade.
A second opinion was sought from the head of oncology at Toronto's Sick Kid's Hospital. He concurred with the Mac specialists. With treatment there was hope. Without, there was none.
The boy had a psychiatric evaluation and was found to be incapable of making an informed decision.
Still, the family refused treatment. And time was ticking. It went to court. Dad and stepmom have a lawyer. The boy has one appointed by the province. The CAS has its own. Wednesday a judge ordered the boy into CAS-approved treatment. And no other kind.
The family had been seeking alternative healing methods. They believe oregano, turmeric and green tea have healing powers.
On Thursday morning, dad took the boy to the hospital for what he thought was just a test. But due to the results of the test, doctors decided to begin chemo that day. Dad believes he was tricked into being there, but Verticchio says the CAS only knew tests would be done.
Dad was furious. Caused a disturbance at the hospital and was ordered to stay off the property. That order was lifted -- under tight supervision -- at 6 p.m. last night -- allowing the boy to see his family.
He is to be released from hospital after his treatment ends Tuesday. It is unclear if he will go home or into foster care. The same day, his case is in family court, standard practice after a child has been seized. There is a settlement conference set for June and if an agreement on the boy's medical care can't be reached there, it will go to trial.
A dozen times in 15 years Verticchio has had medical consent cases. All involved Jehovah Witnesses.
"I just wish we can do right by everyone," he says.
The last word goes to the boy himself. Once, when he was in remission, he talked to The Spectator about his cancer.
"I know God is here," he said, "and I know he can protect me

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Lissa

The parents should have the right to decide what is best for their child. Brain cancer is terminal. A long and painful treatment will only postpone death. That being said, I back the parent's and the boy's decision to die naturally. The court needs to stay out of it.

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Lissa

Sorry, I misread the article. The boy has leukemia not brain cancer. I still, however, think that it should be up to the parents and the child.

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fallon

I totally agree...this is horrible. The boys wishes should be respected overall

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Cleverly Disguised As A Responsible Adult

musicmom

I'm not sure what to think. It would be a hard call. My husband treats cancer and he would not have treatment if he was terminal. I would just to have a few more days with my children.
Things like this are just hard to hear. Poor child. ^i^

Kaytee

To tough to even comprehend

__________________

If you can't stand behind our troops, feel free to stand in front of them!
http://www.spcnicholasidalski.com

Ari2

I'm undecided about this, in part because the articles I've read don't seem to have all the details straight.

Here's a link to a CBC article on the story: link. In that article, a child welfare official says that the doctors estimate the boy has a 50/50 chance of going into remission after chemo and no chance of survival without treatment. The boy's father disagrees, saying he was told the boy had a 20% chance of surviving chemo and, if he did survive, a 50% chance of remission after chemo. That's a big difference.

I do think older kids should participate in their health care decisions. But I don't think they should have the last word. It is hard enough for adults to understand the significance of statistics and look ahead to the future. I think it would be very difficult for an 11-yo, especially one with Fetal Alcohol Syndrome like this boy, to be able to make a completely balanced decision in the face of the immediate horribleness of chemo.

It's just awful, however, that the boy and his family have to contend with a forced separation and a ton of legal cr@p while facing such difficult times.

hwnorth

Im the replies posted ... and to whoever ponders any of this ... all I ask is one question ...

If your child was sick... and possibly terminal.. but there was a chance .. would you not put every ounce of energy into giving them life ... in the chance .. rare as it may be that there was recovery ? Could you live with yourself knowing you let your child die... if you found out later there was actually a cure?

Cancer is no stranger in my family ... Ive lost relatives to it who refused treatment .. have relatives with a full recovery .. and some that have been given an extra 5 years ...

I understand the quality of life argument... but... let me ask you this .. whats the difference between refusing chemo when your terminal ...and mercy killing someone who is terminal ....

One is illegal and one isnt ...


There is nothing that says this child CANT make a full recovery

XOMLE30

My Husband is 27 years old and was diagnosed with the exact same thing this young man has ( as ALL is more common in children than adults) That was in August of 07---here we are almost 9 months later and 5 months post- bone marrow transplant, and he is alive and kicking!!! He has lost 60 some pounds, tons of strenght and is dealing with transplant complications, but he is alive and getting better and stronger every day. I will be the first to tell you that it is not easy!!!!! But right now it was worth every sleepless night , changing his bedding, getting him a drink , watching him violently puke, having our children live my parents for months and missing them terribly, watching him cry hysterically over the thought of dying, or over the stress he was putting on me and the kids the guilt, the resentment....I could go on and on...but treatment saved his life.

budnkota

How many times do you force a child to go through the hell of chemo before you say enough? Comes back in 6 months, are they going to force him undertake a 3rd round of chemo?

I want every possible minute with my child - who doesn't? But if my little boy went through treatment once and it came back a year later like for this little boy, I think I would honor his choice. He's been there once. He knows what he's facing. FAS has different levels and it was not stated how severe he is. It sounds to me, however, that he remembers treatment the first time around and doesn't want to experience it again. I say honor that.

First time around, yes. Put him in treatment. But he's been there already. now he just wants to be left in peace. I think I might make the same choice for myself and just try to enjoy the time I had left. Why can't that be honored for this kid?