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Treatment That Saved Emily Whitehead’s Life Holds Promise for Thousands

by and on April 16, 2017 5:00 AM

An experimental procedure that saved the life of a young Philipsburg girl may soon be saving thousands of youthful lives across the world.

Emily Whitehead, now weeks away from her 12th birthday, was diagnosed with acute lymphoblastic leukemia when she was just 5 years old in May 2010. After the second relapse, her parents, Tom and Kari Whitehead, were told they were out of options to treat their daughter’s cancer.

They did not quit. And, neither did Emily. She underwent a radical new treatment called T-cell therapy at Children’s Hospital of Philadelphia. It worked.

In April 2012, at the age of 6, Emily began the therapy — which involved collecting a type of white blood cell, known as T-cells, from her body and then introducing the human immunodeficiency virus, which genetically reprogrammed the modified T-cells to recognize and attack cancer cells.

The treatment caused Emily to become very sick and she spent the next two weeks in an intensive care unit, that first night beating the odds of survival of 1 in 1,000, according to the doctor in charge. After her treatment, Emily slipped into a coma, which was reversed by yet another experimental procedure — the introduction of an arthritis medicine called tocilizumab. Slowly, she recovered, and a few weeks later, the family, her doctors and, most importantly, Emily, realized she was cancer free.

‘WE BELIEVED’

“The nurses couldn’t believe it. The doctors couldn’t believe it. I don’t think anyone believed it,” Tom said. “But, we did. My wife and I believed it all along. We never gave up. We believed.”

“We believe” caught on as a motto in the Philipsburg-Osceola community, as residents threw unrelenting support toward Emily from diagnosis through treatment and recovery.

Purple ribbons, representing Emily’s favorite color, were displayed in support of the fighting little girl. They could be found wrapped around utility poles, displayed as vehicle decals and worn as rubber bracelets around the wrists of an entire community. When she returned home from her successful treatment, the P-O community welcomed her back with a parade.

The experimental therapy worked. She didn't need to undergo any further chemotherapy. She didn't need to suffer through radiation treatments. Her procedure just may change the face of how the medical community handles pediatric cancer.

On May 2, the Four Diamonds girl turns 12 years old, and just a little more than a week after that, Emily will head to the doctor’s office for her “milestone” checkup — five years of being cancer free.

“Emily is doing great and we all count our blessings every day that she’s here with us,” said her father, Tom. “This was truly a miracle that came from a lot of hope, a lot of support and a lot of prayers. We think Emily was a gift to us from God, and she was put here to go through what she did so others don’t have to suffer like she did. She is a miracle and she’s continuing to pass that miracle on.”

Since Emily’s treatment five years ago, technology has advanced the procedure, which has now treated 200 pediatric patients in the United States. Doctors said the procedure has around a 90 percent success rate with an initial remission, and 55  to 60 percent of patients that underwent the treatment are now past one year of being cancer free.

HEADED TO D.C.

Sometime in the next several months, the Whiteheads will travel to Washington, D.C., for U.S. Food and Drug Administration hearings to help get Emily’s treatment approved. Novartis, a Swiss multinational pharmaceutical company, is attempting to bring the therapy to public market. The FDA has already accepted the company’s Biologics License Application filing and granted priority review for the therapy in relapsed and refractory pediatric and young adult patients with B-cell acute lymphoblastic leukemia.

“We’re very excited to be a part of this as it is on track to become the fastest FDA-approved pediatric cancer treatment to ever come to market,” Tom Whitehead said. “To think that just a few years ago, we were worried if we were going to have a daughter. Now, she’s become an inspiration for people to fight against their cancer, and she has proved that it can be defeated. And, because of her, others are beating it too.

“During that hearing in Washington, D.C., there is a time slot for public comments and that is when I plan on speaking on Emily’s treatment and the impact it has had on our lives and so many others who came after Emily.”

If the therapy receives FDA approval, Tom Whitehead said it could save the lives of thousands of children across the world. He said the therapy has worked to treat cancers such as the type of leukemia Emily was afflicted with, as well as other blood-related cancers. Ongoing research on the procedure may uncover other cancers it can also overtake.

“There’s still a lot of research to be done,” he said. “The applications of this procedure could be even further reaching, and they may discover that it will be the basis for an overall cure for cancer. We can only hope.”

EMILY WHITEHEAD FOUNDATION

In 2015, the Whiteheads officially established the Emily Whitehead Foundation, a nonprofit organization with a mission of raising awareness for pediatric cancer, as well as for raising funds to help grow the cancer-fighting T-cells.

“It’s a very, very expensive procedure,” Tom said. “Even now, it’s all still new and this kind of work and technology costs a lot of money. We want to help as many people as we can, so of course, that means we need to help raise a lot of money. Every little bit helps.”

The foundation also serves as a home base for the knowledge the Whitehead family has gained along the way. It has also created some important friendships.

“We are an open door kind of foundation,” Tom said. “If someone has questions about T-cells, or the therapy or the recovery, or whatever, we want them to reach out to us. We want to talk about and share our experiences and help people fighting for their lives. That’s what we hope for to help save lives.”

In its first year, the foundation raised more than $100,000, which was donated to grow more T-cells for cancer patients. In 2016, the foundation doubled its efforts and raised more than $200,000.

“We’re hoping to raise even more money this year,” Tom said. “We’d like to get to the point where we not only help with growing cells, but also with expenses families have with treatments, like going to and from appointments, accommodations and things like that. They have enough to worry about and shouldn’t have to be stressed over these kinds of things.”

The foundation generates funding through donations, as well as the annual Tee Off for T-cells Golf Tournament, which will be held at the Philipsburg Elks Lodge and Country Club on Friday, July 14.

A new event has been added to the foundation’s calendar with the inaugural Emily Whitehead Foundation Believe Ball, scheduled for Saturday, Oct. 28, at Valley Forge Casino Resort in King of Prussia. The event will bring together the children, families, physicians, researchers and others working to advance immunotherapy cancer research. Tom said it will be an evening of powerful stories, inspiration and hope.

Recently, the Emily Whitehead Foundation was nominated by a California woman for the Patient Advocacy Award at the Life Sciences PA Annual Dinner. The foundation drew the nomination after the woman became cancer free because of the Whitehead family’s bravery, allowing their only daughter to undergo the experimental procedure.

The foundation didn’t win the award; however, Tom said the organization was proud to be standing on stage alongside some “heavy hitters” in the medical community — Merck and Jefferson Health.

“Although we didn’t win the award, we still were able to get up and spread awareness of our cause to some pretty big people in the medical community,” he said. “Sure our foundation wants to raise money, but it also wants to educate people about pediatric cancer so we can learn more about it, and find other ways to help fight it.”

BUSY SCHEDULE

The Whiteheads continue to keep a busy schedule. Emily continues her studies at the Philipsburg-Osceola Middle School as a sixth-grader, while Tom is busy working as a lineman with PENELEC. Kari Whitehead works in research at Penn State University.

“We’re never sitting still for very long,” Tom said.

Tom and Kari, and sometimes Emily, travel the country speaking at events and advocating research for pediatric cancers. Their travels have taken them from the White House to sporting events all across the United States, and their many photographs with cancer patients and their families are a tribute to the hope the family has spread.

Currently, a documentary film is being made about the Whiteheads’ journey and another silver screen producer has expressed interest in creating a docudrama about their experiences.

“It’s all just so amazing where we are in our lives now,” Tom said. “We’re very fortunate to have Emily. She is going to be 12 years old in a few weeks and her life has been a miracle.”



This story was produced by the staff at the Centre County Gazette. It was re-published with permission. The Centre County Gazette is a weekly publication, available at many locations around Centre County every Thursday morning.



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