Emily Whitehead is a bright, typical 8-year-old girl who loves summer, swimming and playing with her iPad, her year-old cousin, Marlowe, and her dog, Lucy but not necessarily in that order.
To talk to her, it is hard to believe that just more than one year ago, doctors at the Children’s Hospital of Philadelphia (CHOP) assessed her chances of survival to be one in 1,000.
Emily is in remission from Pre-B Acute Lymphoblastic Leukemia (ALL). She has achieved celebrity status, as the first pediatric ALL patient to receive a clinical trial treatment at CHOP in April of 2012.
During her breakthrough treatment at CHOP, Emily was featured in a documentary short, “Fire with Fire,” directed by Academy Award winner, Ross Kauffman. Since her recovery, Emily has been featured on ABC News, CBS News, Fox News, Anderson Cooper 360 and all the local news sites, plus featured in the New York Times, Hollywood Life, Parents Magazine and countless Internet and medical news media worldwide.
Faith and Last-ditch Efforts
Emily was diagnosed with ALL at age 5. She went through the proven standard of 26 weeks of chemo-therapy at Penn State Hershey Children’s Hospital and went into remission. However, the cancer returned in October of 2011, and Emily began a second round of Chemo. She was scheduled for a bone marrow transplant in February of 2012, but tests showed the cancer was back.
Emily’s father, Tom Whitehead, said things just seemed to happen at the right times, and he and his wife, Kari were able to make the right choices, even though they did not always agree with the doctors. He said when Emily relapsed the third time, they decided to look at other options.
They took Emily to Philadelphia and met with Dr. Susan Rheingold, an oncologist with the Pediatric Leukemia and Lymphoma Program at CHOP. Tom said they decided against the option Dr. Rheingold suggested at that time and went back to Hershey. If they had gone with that suggestion, he said, Emily would not have survived.
However, Dr. Rheingold continued to work on Emily’s case and consulted with Emily’s doctors at Hershey, where they decided to change the type of chemotherapy treatment Emily was receiving. He said if that had not happened, the originally planned treatment would have killed all Emily’s T-Cells, and she would not have been eligible for the CTL019 trial.
Tom said he has been through crises with his job as a lineman for Penelec, where power outages had to be fixed, no matter where or how long it took. But it didn’t compare to the 60-hour marathon when his family traveled from Hershey to Philadelphia, back to Hershey and back to Philadelphia again, when Emily was seriously ill and facing the utter limits of traditional treatment.
The Whiteheads were thankful to be accepted for the experimental CTL019 treatment. Stephan Grupp, MD, PhD is the oncologist leading the CTL019 study at CHOP. The treatment involves harvesting the patient’s own T-cells from their blood, which are then reengineered with harmless, “gutted” HIV virus and other genetic components, which program the T-cells to attack the body’s B-cells. The B-cells in the blood are prone to the Leukemia cancer.
Emily received her treatment in three doses. Even though the cells were re-introduced via intravenous infusion, Emily said it “tasted awful!” Kari explained that the preservatives used in the infusion seeps out of the body, leaving a nasty aftertaste, and a body odor that smelled like creamed corn. Emily’s best defense for the taste was lots of green popsicles.
Once the modified T-cells are reintroduced into the body, they reproduce and hone in on the body’s B-cells. This battle of the cells, the Whiteheads were told, could cause flu-like symptoms, typical of the adults who had received the treatment.
However, Emily’s body reacted severely, causing life-threatening symptoms. Tom said the team of doctors and support staff at CHOP worked literally around the clock to discover what was causing the symptoms and how to treat it. In the absolute last hour, when Emily was on a ventilator, with high fever, blood pressure out of control, and swollen with fluid beyond recognition, they finally determined the cause of Emily’s severe reaction. The condition created by the warring cells called cytokine release syndrome was causing super-elevated levels of a particular protein.
Tom said the doctors came to them with what they discovered, and a proposed treatment, tocilizumab, a medicine used to treat Rheumatoid Arthritis patients.
Tom said the doctors didn’t think Emily could survive the night. They didn’t know if it was too late to try the treatment. But, Tom said, he and Kari knew that people all around the country were praying for Emily, and somehow they “believed.” He said he told the doctors “We’ll still be here tomorrow.” Emily was given the medicine, and miraculously, within 12 hours, she was making medical history – again. Tom said the staff at CHOP had never seen a patient that sick turn around so quickly.
Tom added that the discovery of the Toci treatment for the life-threatening protein condition is as big a deal in the medical field as the T-cell treatment. He said there have already been 25 people saved with what the medical team learned from Emily’s experience. The medicine works for other medical cases, not just for cancer patients, he said.
Emily’s T-Cell treatment has been successful. She passed her one-year cancer free anniversary in June. The only long-term side-effect of the treatment is that the T-cells destroy all the body’s B-cells, not just the cancerous one, and continue to do so. Emily has to have weekly shots of immunoglobulin to keep her body in defense mode against disease and infection.
Another weighing concern, Kari said, is the chance of relapse. The T-cell trials have an 80 percent success rate so far. There have been 14 pediatric patients in the trial, as well as many adults.
The Whiteheads are keeping in close contact with Avery Walker and her family. Avery is also in the CTL019 trials, and currently at CHOP undergoing her second round of T-Cell treatment. Avery is from central Oregon and has been fighting Leukemia for six years. Kari said she had also just heard of another boy who had relapsed after the T-cell treatment.
One difference in Emily’s case is that she has not undergone a bone marrow transplant. Many of the patients in the trials have already been through that grueling treatment, Tom said. That is an ace Emily still holds if she should ever need it. The Whitehead family believes she never will.
Celebrity with a Cause
Tom and Kari agree that, as long as Emily is feeling good, they will continue to do all they can to “get the word out” about the T-Cell treatment, and provide any support that will help other kids with Leukemia. Tom said Emily was a bit uncomfortable about the interviews and public appearances. However, it helps her to know that it’s all helping save other kids. Emily has many friends who have Leukemia, some of whom lost their battle with the disease.
Tom told of when they were in Philadelphia for one of Emily’s check-ups. There was a girl there screaming after having the infusion port put in. Emily went to her and talked to her about what to expect, saying that it would get easier. He said the girl was worried about losing her hair, and Emily told her that it would happen, but it grows back.
The Whitehead family has participated in three years of Penn State’s ‘Thon, sponsored by the Public Relations Student Society of America. Tom said their ‘Thon group has become like family. They have been a great support and a resource, especially this last year with the public relations expertise.
Emily said her favorite part of Thon was the dancing. But her dad said she had a lot of fun squirting the dancers with squirt guns, too.
In March the Whiteheads attended the New York City Hope Gala 2013, as guest speakers. The event is sponsored by New York and Northern New Jersey Chapters of Penn State Alumni to benefit Thon and The Four Diamond Fund. This year they raised $74,000 – the most in the event’s five-year history.
The family has been to Washington, D.C. twice in the last few months to promote awareness and support of the cancer treatment. In June they were there for Speak Now for Kids Family Advocacy Day to raise awareness with legislators about child health issues. Tom said that since their trip, www.upworthy.com had posted the “Fire with Fire” video. He said before that the video had about 4,000 hits, but since then it has gone viral, with 1.5 million hits.
He said Katie Couric set up an interview with them while they were in Washington, D.C. Afterwards Stand up to Cancer committed $14 million to expand the availability of the T-cell treatment to other hospitals over the next three years, including one in Canada. Stand up to Cancer is a program of the Entertainment Industry Foundation established to fund cancer research, co-founded by Couric.
The Whiteheads will travel to Hollywood to attend Variety’s Power of Youth Awards on July 27. Emily is a special guest of Tyler Posey, star of MTV’s “Teen Wolf,” nominated for his fundraising efforts with the Leukemia and Lymphoma Society (LLS).
Tom said LLS contacted them to attend. They said Posey was inspired by Emily’s story. LLS was a major funding provider, along with private donors, for the research that saved Emily’s life, Tom explained.
So Much to be Thankful For
Tom and Kari said they have had such great help and support from the community. Area churches, organizations and individuals continue to help with all types of support.
Tom said a most touching experience was when the family returned home from Philadelphia last June, when Emily’s doctors released her with glowing reports that she was cancer-free and well on the road to recovery. They reached Philipsburg that night, during a bad thunderstorm. They were met by fire trucks that provided an escort to their house. Tom said through town, the whole way to their house, people lined the streets in the rain, cheering and welcoming them home.
Tom and Kari said they are finding a new normal. They have all had trouble sleeping after their long ordeal. Tom said a counselor advised Emily that when she had a nightmare, to write it down and put it away in a special box. He said the process has helped Emily a lot. He said that she has blocked out a lot of the worst times and only remembers the good stuff.
He and Kari, on the other hand, still worries. Tom said with cancer, they don’t say “cure” easily. After chemotherapy, if a patient is in remission for five years, it is considered cured. For patients with bone marrow transplants, which he noted, are only about 40 percent successful, a patient is considered cured after two years in remission. For a trial treatment such as Emily had, he said they would consider it a cure after 300 patients were successfully treated and in remission.
To keep up with Emily’s continuing story, visit the family on Facebook and on her Web site