Tuesday, May 13, 2008

Where even Angels fear to tread

When my son was approximately 14 months old he needed corrective surgery to repair a hernia. The morning of the surgery we were ushered into a special waiting room where parents waited with their children for one of the surgical staff to arrive with a special wagon to escort your child into the surgical area. It was all very cutesy and was most effective for calming the nerves of parents. We really were not aware of the other parents and children until our son left our side.

There were two other families with older children in the room with us. What the children had in common was the hairlessness and grayish pallor all children who have undergone chemotherapy for with cancer share. When the nurses came to get the first child, a little girl about 8 years old, she started to cry. She felled to her knees and wrapped her arms tightly around her mother’s legs and begged her mother to save her. I could say the sound of her pleading was pitiful but it was nothing to the cries she gave when the nurses pulled her off her mother. My husband couldn’t bear to watch the scene play out in front of us so he dug his face into my neck and grabbed hold of my arms so tightly that a week later I was still bruised with the visible outline of his handprints on my arms. As she was carried the hall, we could hear her still begging for her mother to make them stop. She didn’t want any more bone marrow treatments.

Ten minutes later the nurses arrived for the little boy who was about 6 years of age. As soon as he spied the nurse pulling the wagon the tears started to pour down his face. Montana’s father who had faced down a gunman and charged him in a crowded nightclub could not face another round of a child crying and fled before the nurse even put the boy in the cart.

That happened just less than 14 years ago but made such an indelible impression on my mind that I have never forgotten it. While I am thankful I have never had to make those kind of hard choices for my children it has also made me wishful that there were other less invasive and painful ways of treating cancer effectively in children. All of which brings me to this incredibly sad story in the Toronto Star.:
The family of an 11-year-old boy forced into chemotherapy after being removed by the Hamilton Children's Aid Society is back in court today in a bid to bring him home. "I think it might go pretty good," his father said yesterday. "We're pretty hopeful that he's probably going to come home and be home with us." The child was taken by the Children's Aid Society last week after he and his family rejected chemotherapy to treat acute lymphoblastic leukemia. They cannot be identified because of their involvement with the society.

The boy was diagnosed with the leukemia at 7, had chemotherapy, went into remission for a year, then had more chemo earlier this year after the cancer returned. His stepmother recounted to Hamilton Spectator columnist Susan Clairmont how chemotherapy at age 7 opened sores in his mouth, forced him into diapers, made his hair fall out and his legs weak, and made him vomit. "He couldn't even get out of bed," she said. The cancer came back Feb. 8. He did one round of chemotherapy in February, then refused any more until chemo was forced on him this past week at McMaster's Children's Hospital.

The case has sparked wide debate over when, if ever, it's appropriate for authorities to supersede the wishes of parents and children and impose medical treatment. Cheryl Regehr, a social work professor at University of Toronto, said when a child's life is at risk, the first obligation is to protect that child. "Our first responsibility is to ensure ... medical care is provided and then think afterwards about what should be the long-term strategies."
Apparently in this boy’s case, the doctors have ranked his chance of survival at only 50% even with further treatment. I suspect the doctor’s assessment might even be an overtly optimistic considering this is the child’s second bout of leukemia in less than 5 years and would imagine a positive attitude towards treatment might very well make the difference between life and death.

There is just something so incredibly grotesque about the state waltzing in, seizing the child and literally using all its coercive powers to force the child to undergo more chemotherapy, and hence, more horrendous physically suffering surrounded by strangers. What of this child’s emotional health? I cannot begin to imagine how you could ever make this right to a child.

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