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Deadly Type of Leukemia Claims 2 Victims: Son and Devastated Father

William Stewart pressured Massachusetts to cover therapy and to change law to help others. But boy died, suicide followed.

May 02, 2000|ELIZABETH MEHREN | TIMES STAFF WRITER

BOSTON — Maybe letting go of his 12-year-old son was more than William Stewart could manage.

Father and son, Stewart and his boy David rose to the rank of local heroes here. David was the ginger-haired boy with AML, acute myelogenous leukemia, an aggressive cancer that is fatal to about 60% of its victims. William was the advocate who turned his son's condition into a cause, a crusade to gain state funding for children with catastrophic illnesses whose families cannot afford treatment.

David was the boy who went through radiation, a bone-marrow transplant and stem-cell replacement before volunteering to take part in a risky clinical trial far across the country, at the Fred Hutchinson Cancer Research Center in Seattle. William was the father who faced down state Medicaid officials who refused to provide $93,000 for the experimental chemotherapy. Rebuffed by the state, Stewart, a carpenter and single father of five, launched a fund-raising drive that raised $160,000--much of it from friends and neighbors.

One day after the state House of Representatives voted to set aside $2.5 million per year from an existing health insurance fund to pay for children's care when no other funding source exists, David Stewart died Friday in his father's arms at their home on Cape Cod. Hours later, 43-year-old William Stewart took his own life.

A close family friend, Bob Peredna, told reporters: "I don't think he wanted David to be alone."

The pair was remembered Monday at a double funeral attended by many of the state legislators who now hope to push the "David Stewart bill" to swift passage in the state Senate.

The measure is modeled after similar legislation in New Jersey, where the Catastrophic Illness in Children Relief Fund has operated for more than a decade. In the last fiscal year alone, the New Jersey program approved more than $5 million in assistance for 231 families. Payments ranged from $250 to $250,000.

The Massachusetts bill, inspired by the Stewart family's saga, would cover everything from primary care to medical supplies and home health care for children under 18. The funds would be allocated according to a formula based on family income.

State Bill Aims to Aid Families

State Sen. Therese Murray, a Democrat, sponsored the David Stewart bill with the hope that families will seek care for their children even when it is beyond their financial means. Although the majority of people have some form of medical insurance coverage, Murray said, "families lack the protection against the high cost of chronic or single episodes of serious illness that may destroy their resources."

The Stewart family fell square under that description. A self-employed carpenter, William Stewart was divorced. Along with David, he was rearing two daughters and another son. A third daughter is married. The family recently moved to the Cape Cod town of Sandwich from Hanover, a small community south of Boston where much of the fund-raising for David's treatment took place.

AML, the cancer that afflicted David, accounts for about 20% of childhood leukemia cases. Its high fatality rate distinguishes AML from other forms of childhood leukemia, from which about 70% of young victims are cured with treatment.

The Stewart family knew the experimental treatment in Seattle was a longshot. But William Stewart was so determined to seek the "antibody-targeted" chemotherapy for David that he braved an impending hurricane to plead his son's case before the state Medicaid board.

Flying to Seattle last October in a private jet donated for his use, David became the fourth pediatric patient at the Seattle cancer center and the eighth in the United States to be treated with CMA-676, a drug that combines a potent anti-cancer toxin with an antibody designed to attack only leukemia cells.

The news at first seemed positive. Initial tests showed no traces of leukemia in the boy's blood. But the disease failed to go into remission, and the Stewarts returned home for Thanksgiving.

State Rep. Robert Nyman, a former neighbor of the Stewarts in Hanover, recalled how David's need for treatment rallied the region.

"He was a little boy who touched the hearts of the entire community," said Nyman, a Democrat who sponsored the David Stewart bill in the state House of Representatives. "I don't think there was a person who wasn't behind him."

The death of William Stewart--a father who not only fought for his son's life, but also built David the biggest treehouse anyone in Sandwich can remember--saddened those who watched the struggle. Concern was raised for the surviving children, who were staying with relatives. But close friends were not entirely surprised to learn that Stewart hanged himself from a neighbor's tree.

"This was his way to be with David," Peredna said. "And who's to say that's wrong?"

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