Last October, the Media Department
told the story of Johnstown, Pa., Local 459 member Tom Whitehead, his wife Kari
and
daughter Emily,
who was in remission from leukemia after undergoing a revolutionary treatment
at Children’s Hospital of Philadelphia. Fellow IBEW members
rallied
around the Whiteheads
and supported them both financially and emotionally
during a time of crisis.
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| The Whitehead family outside their home in Phillipsburg, Pa. From left, Kari Whitehead, Emily Whitehead and Tom Whitehead.
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Soon, Emily’s treatment likely will be available to children around the world.
On July 12, the Food and Drug Administration’s advisory panel unanimously recommended approval of Novartis Pharmaceutical’s T-cell therapy for acute lymphocytic leukemia. The treatment was developed at the University of Pennsylvania, led by gene therapy pioneer Carl June. It was tested in studies on 68 children, according to the Philadelphia Daily News. Formal approval by the full FDA is expected in the next few months.
The first test subject was Emily. She was suffering from acute lymphoblastic leukemia with little hope for survival when Tom and Kari decided to enroll her in the then-experimental treatment.
There were some initial side effects. Emily’s temperature spiked to 105 degrees. But she was leukemia-free by May of that year and has lived a healthy life ever since.
Now 12, Emily and her father attended the advisory panel’s hearing and urged for approval. There was some concern about the side effects, but the T-cell therapy has been effective. About 75 percent of the children in the trial remained cancer free after six months, according to the Daily News.
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| Emily Whitehead discusses her cancer treatment in an interview from 2016.
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Tom Whitehead told the panel the treatment saved Emily’s life. He said he thinks it could do the same for others.
“Our daughter was going to die and now she leads a normal life,” he told the panel while choking up with emotion, the Daily News reported. “We are honored to attend this hearing and be a part of this process.”
Emily was diagnosed in May 2010 and IBEW members stepped up to aid the family immediately.
Local 459 members rallied to donate vacation days and money to allow the Whiteheads to continue to be with Emily during her treatments. So did workers at Penn State, where Kari worked as a research and evaluation associate in the school’s Clearinghouse for Military Family Readiness.
Tom said he took 280 vacation hours in 2011 – almost seven weeks. In 2012, when Emily’s condition was at its most dire, he took 520 hours – 65 full days, thanks to vacation days supplied by fellow IBEW members.
Donations covered most of the expenses not covered by insurance or Medicare, which the Whiteheads qualified for. The Penn State Dance Marathon, which annually donates millions of dollars to childhood cancer causes, also supported the Whiteheads.
Emily’s treatment was so new and revolutionary that she and the rest of the family reached something of celebrity status. They were profiled in media outlets around the world, including in the New York Times, and have started the Emily Whitehead Foundation to aid child-cancer research.
Tom Whitehead has never forgot those IBEW members stepping up in the family’s time of need.
“I never missed a 40-hour paycheck,” he said. “We never missed a meal. To know they were willing to donate to me to save my daughter’s life, it’s really hard to put into words how much it meant to us.”