Child with cancer to go home; CAS to oversee treatment

KATE HAMMER, Globe and Mail

From Wednesday’s Globe and Mail

May 13, 2008 at 10:15 PM EDT

HAMILTON, ONT. — The tug-of-war with an 11-year-old leukemia patient at its centre reached a truce Tuesday in court, as the boy’s family regained custody and Children’s Aid Society retained control of his health care.

For a young boy who wrinkles up his freckled nose at the soy milk and brown rice served to him every day in his hospital bed, the truce means that he could be at home enjoying hamburgers as early as Saturday.

Legally, however, the decision leaves his family and the agency in the same place they were last week, before the boy was seized by the CAS after his family refused chemotherapy treatment on his behalf.

Lawyers for both parties and the judge agreed that a decision needed to be reached in order to protect the boy from the conflict that had escalated into his father being handcuffed and escorted from Hamilton’s McMaster Children’s Hospital, loud protests outside the hospital and invasive news media attention.

Ontario Family Court Judge Alex Pazaratz told the courtroom that he agreed with the arguments presented by both sides, but that, ultimately, the debate could not play out in front of a gravely ill young boy.

Reporters will be barred from having contact with the boy and protests against the CAS were ordered to stop while the family is allowed to seek second and third expert opinions on the boy’s prognosis.

As they exited the courtroom, the father’s shoulders slumped a little less, and his wife, dressed in black pants and golden open-toe sandals, hooked her arm into his.

“We’re ecstatic,” he said outside the courtroom. “What’s different is that we’re complying so that we don’t lose our baby.”

He added that “the hard part” will be explaining to his son that he will have to begin another 22-month cycle of aggressive cancer treatment. The father and stepmother promised the judge that they would not prevent their son from receiving the chemical arsenal of cancer treatment mandated as a right to all children by the Ontario Legislature.

Although the chemotherapy will continue, friends and family members who attended court Tuesday, including an aunt dressed in a woven poncho and an uncle transported in a wheelchair with flat tires, were jubilant as they left the courtroom.

“We won!” shouted one family friend.

But five kilometres away, sandwiched on a narrow hospital bed between a stuffed dog and a doll in a red felt dress, a young boy sought an entirely different kind of victory.


Should an eleven year old decide whether or not to have chemo treatments?


Globe editorial

A child can’t weigh life and death
From Tuesday’s Globe and Mail

May 13, 2008 at 8:03 AM EDT

Children who are dying of cancer do not, and should not have, the right to reject potentially life-saving medical treatment. Child-welfare authorities in Hamilton were right to ask for a court order forcing an 11-year-old boy to receive chemotherapy. And the court was right to give the order.

The boy is entitled to his own feelings about the most appropriate course of treatment. He has certainly earned them. Diagnosed at age 7, he has a generally curable form of cancer, acute lymphoblastic leukemia. Chemotherapy has caused him to vomit, feel bloated and have pain in his spine and difficulty walking. He had been cancer-free for a year after an earlier round of treatment. When the disease returned in January, he tried a round of chemotherapy again. He now wishes to try natural remedies such as vitamins, even though doctors say he will die without chemotherapy.

An adult would have the right to choose the natural remedies. The right to refuse medical treatment is fundamental. But that is because adults have the capacity to understand what is at stake. It would be perverse to put children’s rights on such a pedestal that an 11-year-old could be exposed to harm, even death, over something he cannot understand.

The common-law concept of the “mature minor” with the right to make some decisions affecting his own body emphasizes the first word: mature. It strains credulity to think that any 11-year-old has enough understanding of life to be able to weigh what he is giving up in making a decision to forgo potentially life-saving treatment. It would also be difficult to understand the medical course of treatment and the prognosis, if treated. There may be other matters as well that the child cannot think through. In this case, the child has fetal alcohol syndrome and, his father says, has a mild intellectual delay. He also has serious behavioural problems for which he takes medication. So his judgment is probably below the level of a typical 11-year-old.

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Usually it is the role of parents to help ensure that 11-year-olds are given every chance to live. But the father of this 11-year-old (he was 4 when his mother died from a brain tumour) says he wishes to respect his son’s wishes. The father says his son would like to be at home with his family, “and play with his sister and just try to have fun and live as long as he could live.” The father may feel he is trying to protect the boy’s happiness and dignity; but the parental role is to make vital decisions for which the child lacks capacity.

This case is different from those involving teenage children of Jehovah’s Witnesses who reject medically necessary blood transfusions. In those, the children are heavily influenced by the beliefs of their religious community, and may feel that to maintain the love and respect of their parents they need to abide by their beliefs. Judges have questioned to what extent 15- and 16-year-olds have a fully free will in these cases.

The 11-year-old in Hamilton may know his own body, and may not wish to suffer any more. The father may respect his son’s wishes. But loath as a democratic society should be to intervene in family matters, it is right to assert the value it puts on children’s lives by insisting that children can’t make life-and-death decisions.


Boy, 11, can’t endure chemo any more, defiant father says

From Monday’s Globe and Mail

May 12, 2008 at 3:40 AM EDT

He is angry, misses his family and is losing his reddish-brown hair. His dad says his “spirit’s broken.”

The 11-year-old Hamilton boy, who has leukemia, was seized by the Children’s Aid Society last week and is being forced to undergo chemotherapy against both his and his family’s wishes.

“We may still lose him and we may still lose against them, but that doesn’t mean I’m going to give up,” his father said in an interview yesterday.

The child’s father and stepmother are exploring their legal options and friends have hired Marlys Edwardh, a prominent Toronto lawyer whose long-time law partner is veteran counsel Clayton Ruby.

Last night, about two dozen people, including members of the child’s family, held a vigil in the rain outside his hospital window. The boy waved down at his supporters, who held candles in Styrofoam cups.

At a hospital appointment for routine tests last Thursday, the Children’s Aid Society of Hamilton took the boy, who cannot be identified under youth-protection laws, into its temporary custody. Chemotherapy treatment was then commenced.

His family can visit him only under the watchful eyes of CAS workers and security guards; his father was evicted from the hospital in handcuffs after reacting in anger when his son was seized.

A judge earlier ruled the boy is not capable of understanding the implications of refusing chemotherapy.

Two of Canada’s top pediatric oncologists have said he will die without the aggressive treatment.

The deeply spiritual youngster, who likes dancing, singing and writing stories, is to be released from hospital tomorrow after his treatment is finished, his father said. It is unclear if the CAS intends to place him in foster care or release him to his family.

A spokeswoman did not return messages yesterday.

The father called the ordeal “awful, hell on wheels.”

He said he will fight to regain custody of his son, saying the boy has suffered enough.

“The best thing for him to do would … be home with us so that if he did pass away, at least it would be home with us and we could take care of him and we could make sure that he’s sent away the way he deserves to be, not poked and prodded and treated like a criminal,” he said.

Family friend Belma Diamante, who hired Ms. Edwardh, said the boy’s views have not been heard by the court and child welfare agency.

“Every institution and every individual, if they’re claiming that we’re making the best decision in [the boy’s] interest, then naturally [he] has to be heard,” said Ms. Diamante, who met the boy when she helped him realize his dream of dancing in The Nutcracker three years ago when she was president of the Canadian Ballet Youth Ensemble.

The child was diagnosed with acute lymphoblastic leukemia, which has a cure rate exceeding 80 per cent, when he was 7.

He underwent chemotherapy and in January, marked one year cancer-free. But the disease came back just a few weeks later.

The boy, who has aboriginal ancestry, did one round of chemotherapy in February and then decided to stop aggressive treatments in favour of natural remedies, including chelation therapy, vitamins, oregano and green tea.

Chemotherapy makes him extremely ill and causes effects such as vomiting, bloating, pain in his spine and difficulty walking.

“He told us that he didn’t want to undergo any more treatment because he felt that it wasn’t going to give him quality of life, that he felt that it would probably take away his life,” his father explained.

“He would rather just go traditional and natural and take it for as long as it would take him so that he could be with his friends and so that he could be at home with his family and play with his sister and just try to have fun and live as long as he could live.”

The boy also has fetal alcohol syndrome and is mildly intellectually delayed, his father said.

He also has serious behavioural problems, for which he takes medication. His mother died of a brain tumour when he was 4.


Image from “Boy, 11, can't endure chemo any more, defiant father says”

Friends of a boy taken into temporary custody by the Children’s Aid Society so that he can receive chemotherapy wave to him from outside his window at McMaster Children’s Hospital in Hamilton Sunday evening. A vigil was held to protest against the boy’s treatment by the authorities. (Glenn Lowson for the Globe and Mail)



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