By Cynthia Needham
The Haights, of Warwick, who lost a son to cancer and found a mission, are guests at the White House to witness the signing of the Conquer Childhood Cancer Act.
For Nancy Haight, stepping into the Oval Office yesterday to shake hands with the president of the United States was bittersweet.
Something was missing.
“Ben should have been there with us,” the Warwick mom said from Washington, D.C.
Nancy and Vince Haight’s old-est son, Benjamin, lost his battle with cancer in 2003. He was 9 years old.
His loss devastated the young family, particularly Nicholas, then 8, who not only lost his big brother but also his best friend.
No other family should have to experience that kind of pain, the Haights resolved.
It was not an idle thought. Within months, the couple threw themselves into the crusade to help expand childhood cancer research and increase services to patients and families affected by the disease.
“I’ve seen too many kids from too many walks of life die and it breaks my heart,” Nancy Haight said. “Somebody needs to bring attention to this.”
Hearing of the family’s work, Sen. Jack Reed authored a bill that did just that.
Earlier this month, Congress passed the Reed-sponsored Conquer Childhood Cancer Act, authorizing $30 million annually for the next five years for biomedical research programs at the National Cancer Institute. It will also establish a national childhood cancer registry to track pediatric cancers.
Yesterday, Nancy, Vince and Nick Haight accompanied Reed to the White House to watch as President Bush signed the bill into law.
On Monday, it will be five years since Ben’s death.
It seems like just weeks ago, Nancy recalled, that she took her energetic 4-year-old to the doctor to check on a nagging stomachache.
“When they told me it was a mass in his abdomen, I thought, it can’t be cancer, he’s 4,” she remembers.
What followed was a nearly five-year blur of hospital stays, chemotherapy treatments for neuroblastoma, a particularly aggressive form of cancer, bone marrow transplants, and on the days when Ben was well enough, summer baseball games.
Through it all, the Haights watched other families like them struggle to stay afloat financially and emotionally while caring for sick children. And they watched too many children from too many walks of life succumb to the disease.
Ben was one of them. On Aug. 4, 2003, the Little Leaguer from Warwick lost his battle with cancer, touching off the family’s next fight to raise awareness of the disease.
“We go back and say ‘why did this happen to Ben?’ but maybe this was Ben’s purpose, to save the lives of so many children,” Nancy said yesterday.
Each day, the equivalent of two classrooms worth of children are diagnosed with some form of cancer. Each year, 2,000 children die from it. But because these deaths don’t happen all at once, or in one place, the immediacy of the problem can be lost.
“There is an awareness in the sense that we know situations where children have passed away, but in terms of making that a reality in research and the trials they must do in developing therapies that are child-specific, that hasn’t taken place,” said Reed, a senior member of the Health, Education, Labor and Pensions Committee.
The Conquer Childhood Cancer Act, he said, will deliver both hope and support to children and their families battling cancer and help better track incidences of the illness, as researchers work toward eradicating it.
The House unanimously passed the bill in June with the Senate following several weeks ago.
When the Haights stepped into the Oval Office yesterday, Nick, now 12, carried a picture of his older brother. In it, Ben poses in uniform on opening day of the 2002 Little League season a year before he died.
It’s more than just a photo.
At the time it was taken, Ben had been in the hospital for more than a week, but he was determined not to miss the season opener. Too weak to walk, Ben persuaded his mother to help him into his red and white uniform and wheel him out of Hasbro Children’s Hospital and onto the Warwick baseball diamond in a wheelchair.
When it came time to pose for his shot, Ben asked his father to help him stand.
A determined little boy raised his bat in the air and smiled into the camera.
President Bush is joined at his desk by First Lady Laura Bush, and Sen. Jack Reed, far left. Holding a photo of his deceased older brother Ben, at left, is Nicholas Haight. In back of him is his father, Vincent Haight; at his left is his mother, Nancy. AP / Ron Edmonds [email protected] / (401) 277-7045
Originally published by Cynthia Needham, Journal State House Bureau.
(c) 2008 Providence Journal. Provided by ProQuest Information and Learning. All rights Reserved.
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