Emily’s Story Continues

The Whitehead family – Kari, Emily and Tom.

July 23, 2020

Penelec employee Tom Whitehead talks with an easy voice about the road he and his family have taken over the years. And he shares a story so poignant that he feels he’s changed a few minds along the way.

When 5 years old, Tom’s daughter Emily was diagnosed with a rare and deadly form of leukemia. But thanks to a then-experimental treatment that genetically alters a patient’s own T cells to fight cancer, Emily made a full recovery. She also made medical history by being the first child ever given the altered T cells to combat her B-cell acute lymphoblastic leukemia. Now 15 years old, Emily is doing well and enjoying life as a teenager. And because of her illness, doctors learned of a new use for a drug that is now helping COVID-19 patients survive.

“It’s been a journey,” said Tom, a Line Construction & Maintenance lead at the Philipsburg facility. “There were a number of times when we were told we’d lose Emily.” Tom reflected on one day in particular.

“The day before I had a vision, or what I now refer to as ‘whispers,’ where I saw myself helping Emily walk down a hospital hallway. That spurred the faith I needed to know Emily would pull through that crisis.”

The Journey Begins

After Emily was diagnosed, her physicians had tried every known treatment, but she was not responding. Tom and his wife Kari along with Emily’s doctors at Children’s Hospital of Philadelphia (CHOP) knew of a trial T-cell treatment but it was months away from approval by the Food and Drug Administration (FDA). But, miraculously, when Emily was home on hospice care Tom contacted CHOP and learned that the FDA had approved the trial for a child.

Emily was transferred to Philadelphia where her T-cells were extracted to be trained to recognize and kill her cancer. She then stayed in isolation in her hospital room for six weeks until her T-cells were ready. After her treatment she became very sick and remained in a coma for 14 days. It was at that time when Tom and Kari were told by doctors that Emily had a one-in-1,000 chance of surviving the night.

“Emily not only survived but she woke up the next day – which also was her 7th birthday,” said Tom. “And, within the next few days she improved. However, her muscles had weakened from being in a coma, so I helped her learn to walk again and that was the whisper I’d seen earlier.”

Tom continues to share that faithful experience. “My main message is we don’t have to separate faith and science. When the two go hand in hand, miraculous things can happen,” he said.

Helping with COVID-19

In addition to being the first child to survive cancer through T-cell research, Emily may become a trailblazer in the battle against COVID-19.

While going through cancer treatment, she developed complications requiring a ventilator. As her condition worsened, Emily’s immune system revved up, which in turn increased a protein that resulted in water retention and swelling.

“Emily’s medical team felt a drug called tocilizumab that had been approved for rheumatoid arthritis may help Emily. With special permission for off-label use of this drug, Emily improved. And because of this, tocilizumab is being used in trials as a treatment in the fight against COVID-19.

d Emily reaches another health milestone.

He’s Also a Hero

Tom has received so much support from others during Emily’s illness and recovery that giving back comes naturally to him. In 2019, he helped out a couple in need of rescue and was recently recognized as a FirstEnergy Hero Award winner for his actions. You can read about Tom and other FirstEnergy Heroes here​​.

Praying for Emily

The many stories of Emily’s battle could fill a book – and now it does. Praying for Emily: The Fai​th, Science, and Miracles that Saved Our Daughter will publish this October. In the book, Tom and Kari share their family’s story and how their faith and resilience helped them navigate the painful, then ultimately joyous, trip through the most difficult time of their lives.

The book is available for presale on Amazon and will be on bookshelves Oct. 6.

Tom realizes that the Whiteheads’ journey together wouldn’t have been possible without the support of his FirstEnergy family. “I really want to again thank FirstEnergy and the wonderful employees who donated their vacation time through the CARE program,” he said. “It made such a difference in our lives while Emily was fighting for hers. “I’m blessed to work with such caring people and for such a wonderful company.”