Laughter. Sunshine. Presents. And a bounce house.
Except for the pink “Penn” sweatshirt she wore, there was little evidence of the battle Emily Whitehead and her family have been through the past three years.
But the partygoers were celebrating more than just the No. 8 candle on Emily’s Barbie-themed birthday cake.
Emily has met another milestone: Celebrating one year of being cancer-free.
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Diagnosed in May 2010, Emily has had a recurring battle with acute lymphoblastic leukemia, or ALL, the most common form of pediatric cancer.
After almost two years of treatment, chemotherapy failed and she could not remain in remission long enough to receive a bone-marrow transplant. That’s when her parents, Tom and Kari Whitehead, turned to experts at Children’s Hospital of Philadelphia and the University of Pennsylvania for help. Emily was running out of options just as an experimental study opened up.
In April 2012, Emily became the first child to have her own T cells — infection-fighting white blood cells in her immune system — genetically engineered to recognize and attack the cancer cells in her body. Doctors removed her T cells through a process similar to blood donation, programmed them to attack her cancer, then grew them and injected them back into her body.
A few days later, Emily spiked a fever. A week later, she was on a ventilator in the pediatric intensive care unit, unable to breathe on her own.
On April 24, 2012, Emily became gravely ill. The Whiteheads were told their daughter had a 1 in 1,000 chance of surviving the night.
But with the help of doctors working around the clock and the support of friends and family, the Whiteheads beat those odds.
On May 10, 2012, tests showed that the T cells had done their job, and Emily was back in remission.
On June 1, 2012, Emily got to go home.
Almost a year later, the Whiteheads sat on their porch watching their little girl run around in their backyard with all the people who supported her in the battle for her life — family members, a few of Emily’s friends from school and about 30 Penn State students.
“To us, it’s the positive side of cancer,” Tom Whitehead said of the numerous IFC/Panhellenic Dance Marathon volunteers that make up his daughter’s Thon family. “There’s so much negative involved, it can get your morale down. But they’ve kept us from ever being overwhelmed completely.”
The Whiteheads have been holding birthday bashes with the college students for the past few years.
“It kind of started two years ago after we got involved with Thon,” Tom Whitehead said. “When her birthday party came, she just said to us ‘we’re going to have a separate party with our Thon friends, right?’ So Kari and I said, ‘well sure we can.’ ”
This year was extra special for a few of Emily’s friends who graduated from Penn State in May.
“I met Emily in the fall of 2011 and she was a little 6-year-old with little curly-Qs coming out of her head,” said Angela Mancuso, the former family relations chairwoman for Emily’s Thon group, PRSSA. “We went for ice cream at the (Penn State) Creamery, and about two weeks later was when we found out she had relapsed. It was hard news, but we had no idea what was coming after that.”
Mancuso danced in Thon in 2012, when Emily was at the children’s hospital, and was there for the family the night Emily’s situation seemed most bleak.
“I’ll never forget that night,” Mancuso said. “We got the call from Tom and he just told us, ‘You know we don’t know if Emily’s going to have another chance to be with you and tonight might be her last chance and we want her to have her opportunity to say goodbye to you guys,’ ” she said.
With that call, Mancuso and other PRSSA members jumped in a car to make the 4-hour drive to Philadelphia, some of them skipping their final exams.
“We couldn’t think of anything except for getting ourselves in that room with her,” Mancuso said.
Emily made it through the night, but she still had a long road ahead of her.
“A couple weeks later, I was visiting when (Emily) made somewhat of a turnaround but we weren’t sure if she was going to be able to come back to us,” Mancuso said.
“I brought a silly poem book called ‘The Big Fat Cow That Went Kapow’ and I was reading it to her. And in typical Emily fashion, she’s like ‘let me do it’ ‘cuz she can always do it better than me. And she just sat up and started reading that book. I’ll never forget that moment because that was when I knew that she was going to be OK.”
For Mancuso, being part of the support system for the Whiteheads has been a major part of her college experience and helped to shape her future goals.
“Before I met Emily, I wanted to work at PR in an agency like in the city, and now all I ever want to do is help kids like Emily and use her story because ... she will never know the impact she’s made,” Mancuso said.
And at Emily’s birthday party in April, both of Mancuso’s families came together.
“My parents are here today for the first time meeting my second family so it’s amazing,” she said. “ No matter what (the Whiteheads) get put through or celebrate or something that we need to work through together, we’ll always be there, and we’ll always be ‘team believe’ no matter what.”
Tests last week showed that Emily’s cancer is gone and her T cells are still present.
“Her bloodwork came back all normal,” Tom Whitehead said.
And the doctors who treated her are thrilled.
“She’s doing as well as we could have possibly imagined,” Dr. Stephen Grupp said in a recent interview. “It’s astonishing to think back to last year … she was terribly ill … and to see how far she’s come since then.”
After the T-cell research by Grupp and others at CHOP and Penn went public in December and Emily’s story made headlines internationally, the team has been treating other patients based upon how Emily reacted to the T cells.
Last month, a study was publishing in the New England Journal of Medicine. Of the five children and one adult who were treated with the T cells, five went into complete remission. Of the five in remission, all but one of those results were sustained.
“The short-term results look very powerful,” Grupp said. “I would not have known a year ago that this would be the position that we’re in.”
An arthritis medication that Emily was given when she was gravely ill has been particularly beneficial in other cases.
“All these people we’re treating, the adults and the kids, all owe that to Emily because we really learned a huge amount about how these cells might go and we also learned how treat it,” Grupp said. “Not everybody needs it, but when they need it, it’s effective. … That, I think, is so important.”