Just before Friday’s close of the 40th International Convention, delegates heard via video from Johnstown, Pa., Local 459 member Tom Whitehead, where he gave an update on the inspiring story involving his daughter, Emily.
Emily Whitehead was diagnosed with leukemia as a 5-year-old in 2010 and was near death when her parents took her to Children’s Hospital of Philadelphia, where doctors began an experimental treatment that never had been used on children.
Now, nearly 10 years later, she is a healthy high school junior with a 4.0-grade point average and has become something of an international star. Her story has been told in several major media outlets and the family released a book, with the forward written by noted filmmaker Ken Burns. The Whiteheads began a foundation in Emily’s name. They will be the subject of an upcoming documentary film that will premiere at New York’s Tribeca Film Festival in June.
All the while, Tom has continued to work a regular schedule for his employer, Penelec, and remains an active IBEW member.
“When we got her home and got her better, I said to her and my wife Kari that I’m going to work the rest of my life paying it forward while continuing to work as a lineman and help other families have the same outcomes that we did,” he said.
Whitehead, who has spoken at the last three International Conventions, again thanked IBEW members for donating vacation hours during the early days of Emily’s ordeal. That, along with donations from Kari’s colleagues at Penn State University, her employer, allowed them to be by their daughter’s side without missing a paycheck.
“I wanted to put a positive message out there to never give up when times are the hardest and stick together,” he said. “I always felt like being a part of the IBEW and having the support back then to keep me at the hospital while still being paid allowed me to make those decisions that saved her life. I’m very thankful I’m still working in the IBEW and proud to be a lineman.”
The IBEW Media Department has chronicled Emily’s recovery over the last several years, both via video and in the Electrical Worker. A video detailing her recovery was shown to delegates before her father’s speech to the convention.
Doctors used a disabled virus that causes AIDS to kill Emily’s cancer cells. The disabled HIV cells were used in the lab to train Emily’s T cells – the white blood cells that are a key part of the immune system – to recognize and kill her B cells, which were causing the cancer.
For many years, Emily was listed as being in remission. But just this week, her doctors said she was cured, and the treatment continues to spread across the world.
Tom Whitehead said one of the family’s reasons for continuing to tell her story is to remind families these experimental treatments are out there.
“Anybody in the IBEW that might need help with cancer care for themselves or a loved one can reach out to me at any time,” he said. “I’ve been fortunate enough to meet some of the best oncologists in the world. We have connections to find these experimental trials that are hard to find when standard treatment isn’t working for you.”