Making a Difference | Emily Whitehead Foundation
They were told to take their daughter home to die six years ago - after the treatments for her leukemia weren't effective.
Today, 13-year-old Emily Whitehead of Philipsburg, near State College, is not only alive, but cancer free! And the people and place that made that difference -- are right here in Pennsylvania.
Back in 2012, Tom and Kari Whitehead went from being told to take their 6-year-old daughter Emily home to die - to she’s cured!
And that emotional "roller coaster ride" for Tom, Kari and Emily happened in a span of 23 days!
When the treatments for Emily's Acute Lymphoblastic Leukemia weren't effective, they were preparing for hospice in March of 2012.
That was when the Philipsburg family sought a second opinion at Children's Hospital of Philadelphia (CHOP) and learned about a new cancer treatment -- a “t-cell therapy” trial that just opened up.
It involved removing her white blood cells and "sending them to a boot camp" so to speak.
Tom says that is where they use the disabled virus HIV to train her immune system to recognize and then kill her cancer.
But, the treatment almost killed Emily, by drastically increasing the amount of a protein in her blood to a life-threatening level.
The doctors found a drug that lowered the levels and it worked on Emily.
"23 days after the first treatment on April 17th, she became cancer-free," said Tom.
And now she’s happy, healthy, and enjoying being a teenager and alive.
"I like playing the ukulele, I like hanging out with my dog Lucy and I like hanging out with my friends and I like art," said Emily.
Emily doesn't remember too much about the treatments because she was so sick at the time.
Tom and Kari, of course, remember every second of their only child fighting for her life.
"I would often sit and wonder when she was really sick, she didn't have any hair, she couldn't even sit up in bed, wonder if I was ever going to see her healthy again? If I would ever see her as a healthy teenager, having fun with her friends.," said Kari. "And now I get to see her and be here for a sleepover I get to hear the laughter coming down the hallway."
The Whiteheads also remember the families who weren't able to take their child home alive.
"When you witness other children that don't make it at the hospital and see their parents and what we went through, we're just trying to make a difference," said Tom.
And the Whiteheads have recruited 15 year leukemia survivor Tom Garrett of Lebanon County to help with fundraising and raising awareness about this new t-cell treatment.
Garrett is on the board of the Emily Whitehead Foundation and has organized a fundraiser November 3rd in Lebanon County.
“Obviously it was bad what happened, but from all that, we'll be able to help more kids and help them get better," said Emily.
"I think we're seeing the beginning of the end of cancer and starting all because of Pennsylvania and because of a certain 6-year old who kept fighting," said Tom.
The fundraiser November 3rd is the 7th Annual Blood Sweat & Tears 5-miler.
It starts at 9 a.m. at the Lawn Fire Company.
The proceeds benefit the Emily Whitehead Foundation and the Leukemia & Lymphoma Society of Central PA.
There’s also a documentary and book coming out about Emily Whitehead and the T-cell Immunotherapy that saved her life.
Recently, Emily got to meet actor Bradley Cooper and Lady Gaga at the beginning stages of their "A Star Is Born" collaboration.
You can see that here: