HEALTH COACH - The face of a medical revolution marks five years without cancer - and its 12th anniversary

HEALTH COACH -

 The face of a medical revolution marks five years without cancer - and its 12th anniversary  
 









 Last week, Emily Whitehead celebrated her 12th birthday by making a cake and decorations with her mother, then making a pick with four of her college BFFs. 

  
 



  


  




 

 Because she grows up, the sixth grade girl also did something her parents usually use: she talked to a reporter about what it is to be a cancer pioneer. 
 "I think it 's great because I can go to a lot of places and meet a lot of people," said the interviewer who worked with scientists, stars and Men of state, including President Barack Obama. 

 At a time when most children have not even bothered about cancer, much less about exploiting the immune system to fight it, Emily knows she is the " Poster for a revolution in oncology. Yet she is also a regular 12 - year - old girl, as excited about her birthday party as the fifth anniversary of her remission of terminal leukemia. The experimental treatment that saved him at the Philadelphia Children's Hospital is currently being studied by the US Food and Drug Administration, ready to become a unique first drug manufactured by the giant Pharmaceutical company Novartis. 
 While Emily was chatting with a reporter, her parents, Kari and Tom, were sitting nearby in the enclosed porch of their comfortable home in Philipsburg, half an hour from State College, Pa. 
 The Whiteheads have traveled a careful line between ensuring a life as normal as possible for their daughter, and remaining visible lawyers for the science that saved her. They have created a foundation on their behalf to support pediatric cancer research and help other desperate families. 




 The challenge, they have discovered, is that advocacy can be as generating as it is to fight the disease directly. 
 "We think we have been given so much and everything has come together. We are so grateful for this," said Kari Whitehead. "We want to give back in one way or another, at the same time it is difficult to balance .We do not want to spend all that time on the foundation when it takes time Emily - when all of this gave us Emily, so we have to keep that in mind. "

 A girl of 10 books 
 Kari, 41, the head of nutrition research at the State University of Pennsylvania, and Tom, 47, an electrician of energy, grew up in the middle of the 1980s. 39 states and met in 1998. They married in 2001 and hosted Emily Four years later. 
 "She weighed 10 pounds and had a head full of hair," his father said laughing. 
 Today, it is hard to believe that the prosperous baby has missed a beat between now and now. In a YouTube video created by Emily last month, her big brown hair falls on her left eye and a pink cheek: "Hey, and me, guys! This is your daughter here. Today, I will show you how to make this incredible fabtastic spastastic Pink Easter slime! "



 But the online news clips and documentaries on cancer - including Ken Burns' famous six-hour PBS series on cancer history - show Emily at her nadir in April 2012, when she had 7 years. She had recurred twice within two years since her diagnosis, despite relentless cycles of toxic chemotherapy. Malignant blood cells developed uncontrollably. She slept in a bed at the Children's Hospital, bald, thin, circles under her eyes, a tube in her nose. 
 That was when experimental therapy was tasted in his vein, a historic moment when his parents had the presence of the mind to videotape. 
 Treatment has never been attempted in a child. In the six adults in whom it was tried, two had dramatic remissions   but their blood cancers were not the same as those of Emily. Built on 20 years of research led by Carl June of the University of Pennsylvania, the therapy involved genetically engineering Emily's T cells, immune system soldiers, to attack his B cells, Immune cells that prove malignant in some blood cancers. 
 Or as Emily explained in a gentle but confident voice: "They pulled out some of my blood cells and put them in a machine that trained them to kill the cancer. Then they put them back in me. That is what saved me. "
 First, it almost killed it, triggering a catastrophic overreaction. His doctors threw the medical version of a Hail Mary pass, giving him a new immunosuppressant drug rheumatoid arthritis which June had heard about. This drug would become an essential part of the immunotherapy protocol, allowing doctors to manage potentially fatal side effects. 
 Emily found consciousness on May 2, her seventh birthday. Eight days later, on May 10, 2012, his oncologist, Stephan Grupp, said it was cancer-free. 



 Balancing advocacy and the family 
 T cells designed are not infallible, and the approach, tested by research centers around the world, has not yet worked well in solid tumor cancers. But the Novartis version saved children and adults who were out of options for combating malignant cell B tumors. Nearly half of the 175 kids treated right here in children have lasting remission. 
 Has Emily ever spoken to her classmates about her ordeal? 
 "Sometimes not much," she said. 
 "She has blocked the painful things in her memory," her father said. "We asked the school not to talk about it, we want it to be normal, people here are good at not raising it." 
 But cancer charities, medical societies, documentary filmmakers and desperate families for their miracles have never stopped calling. 



 In 2014, the couple created the Emily Whitehead Foundation for non-profit. The foundation raised $ 350,000 in just two years, enabling the Grupp team to spawn T cells that target new leukemia markers, extending therapy to more than 40%. ; children. "The funding has been incredibly important," he said. 
 Yet the success of the foundation came at the expense of family time. That is why the Whiteheads are hoping to hire an executive director by the end of the year - and why Kari Whitehead planned a summer vacation from Ocean City with an extended family "and no media. " 
 They also recognize this, although Emily may be thrilled to meet pop star Katy Perry or film actress Bradley Cooper (to name but a few) Recall the children with whom she tied hospitals that did not do it. In addition, as Emily told a reporter  Access Hollywood  sometimes tell him his story "gets rather annoying". 
 "So our case," said his father, "if we go to the event of some one and talk about Emily's treatment, they have to do something Of different from the event that is fun for Emily.We never want it to become depressing, where she thinks, "Oh, we have to pick it up again." 
 Billionaire tech guru Sean Parker understood. He put the Whiteheads in an iconic resort of Southern California before attending the April 2016 Star Gala which launched his breathtaking institute for cancer immunotherapy. (Penn is part of the research collaboration of the Institute of $ 250 million.) 
 The gala is where Emily met his most memorable celebrity. 



 "I think it would be Lady Gaga," she said. "She brought me on stage and sang." 
 "Emily is a very balanced young woman," said Grupp, his oncologist. "If she was spoiled by the attention, I do not see any evidence." 
 But she can also be a typically tasteless teen, rolling her eyes and murmuring that her mother did not close a laptop game properly before throwing a Lady Gaga Croon video. 
 Did she become a rebellious teenager? 
 Emily pauses before answering: "I do not know." 
 Although her cancer treatments did not have any apparent side effects, she needs a two - hour infusion of an anti - immune drug every two weeks . T cells that are now on guard have erased its B - cells as well as sick. 



 "We use a numb cream on my legs," she said. "My father puts the needles and prepares the medicine". 
 Is she afraid that cancer will return? 
 "Not really, because it's gone so long," she said. 
 His parents exchanged a glance. After five years, they do not worry more every day. 
 "Just every night," said Tom Whitehead. 
 



 
 
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  Published:   10 May 2017 - 3:01 AM EDT  
 










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