Emily "Emma" Whitehead :: My Journey Fighting Leukemia » My journey fighting childhood cancer.

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Tune in tonight (Friday, February 27th) on HBO at 10:00pm to see the VICE Special Report: Killing Cancer. The report shows how researchers are using viruses – such as the common cold virus, measles and H.I.V. – to treat various types of cancers. Part of the report will focus on the T-cell therapy and Emily’s treatment. Another T-cell patient, 11-year old Tori who was treated in the same clinical trial as Emily, will also be featured.

In addition, the Emily Whitehead Foundation has teamed up with HBO VICE and CrowdRise to raise money for cancer research! Please consider MAKING A DONATION HERE.

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We are thrilled to announce that we have created a non-profit organization – the Emily Whitehead Foundation! The official press release is below or visit the official foundation page!
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FOR IMMEDIATE RELEASE:

The Emily Whitehead Foundation Launches to Support Pediatric Cancer Research

The Emily Whitehead Foundation is a non-profit organization committed to raising funds to invest in the most promising pediatric cancer research. The foundation also hopes to provide support to pediatric cancer patients and will promote awareness of the disease through education and sharing inspiring stories.

Philipsburg, PA (January 27, 2015) – Nearly three years after being the first child in the world to receive an experimental T-cell therapy at Children’s Hospital of Philadelphia (CHOP) to save her from a life-threatening cancer, nine-year-old Emily Whitehead and her parents launch the Emily Whitehead Foundation.

The non-profit foundation aims to direct funding to medical researchers to develop better treatment options and ultimately a cure for pediatric cancer. The foundation will promote pediatric cancer awareness and hopes to provide support for families facing the disease.

Tom Whitehead, father of Emily, and President / Co-Founder of the foundation, said, “We want Emily to be able to tell her grandkids that she was the beginning of the end of cancer. Emily does not want to lose any more friends to cancer. We believe in a cure and if we work together we can put an end to this terrible disease.”

Emily was diagnosed with acute lymphoblastic leukemia (ALL) at age five in May 2010 and relapsed twice. After the second relapse, the Whiteheads were told they were out of options to treat her cancer. Not willing to give up, the Whiteheads pursued a radical new treatment called T-cell therapy at Children’s Hospital of Philadelphia (CHOP).

Emily was the first child enrolled in the phase I clinical trial (known as CART-19 or CTL019) in April 2012. Her T-cells (a type of white blood cell) were collected from her body, and then, in a process using a disabled form of the human immunodeficiency virus (HIV), the T-cells were genetically reprogrammed to recognize and attack cancer cells. When the modified T-cells were put back into Emily she became very sick and spent several weeks in the intensive care unit on a ventilator. At one point her doctor said she had only a 1 in 1000 chance of surviving the night. Not only did Emily survive that night, but a few weeks later her family was given the miracle they had prayed for: the T-cell therapy worked. Doctors couldn’t detect a single cancer cell in her body. Today, Emily is nearing three years cancer free.

Emily’s story gained worldwide attention and the trial has continued to achieve unprecedented results and provide hope to many other families facing the disease. Emily and her parents, Tom and Kari, now travel to speak at events and conferences to raise awareness and share their inspirational journey.

To learn more about the foundation, donate, and find out about upcoming events and ways to get involved, visit the website: www.emilywhiteheadfoundation.org.

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  • Victoria Miles - God Bless you Emily, My grandson had the same treatment and is doing great, Thank God.ReplyCancel

We have had a lot of positive things happening lately which gives us the chance to continue spreading awareness about Emily’s miracle and the amazing success her therapy continues to have. She has been feeling great and she is thriving in 4th grade, learning to play the piano, and finally ready to try organized sports. We continue to get amazing offers for film and TV projects and we tell everybody as long as Emily feels good and that they make it fun for her then we will participate. The message is what is important and we want to make sure in the future all parents who battle pediatric cancer have the outcome that we have had. We know that there are many other trials waiting to start that need funded. Emily has even said when asked in interviews that she doesn’t want to lose any more friends.

emily-jn-15-2PINIMAGETwo weeks ago, Emily had an appointment at CHOP for bloodwork. While we were there we did filming and interviews with Shane Smith of HBO’s documentary show Vice. The T-cell therapy will be featured on an episode in late February. Shane mentioned that the T-cell therapy has reported a 90% success rate. Meaning that 90% of kids who get T-cells are able to achieve remission. I said that is phenomenal but it isn’t high enough. That means 10 families out of 100 will go home without their kids and we know many of these families. We know if there was more funding that Dr Grupp and all of the other oncologists would not have to be devastated when they have to tell another family that with all of their efforts, for some reason their child would not survive. I am amazed at how all of the staff dealing with pediatric cancer can deal with the stress. We are trying to do everything we can to get more donations and funding.

The Ken Burns film called the Cancer: The Emperor of All Maladies will air on PBS on March 30, 31 and April 1. It will be 2 hours per night and Emily’s story will be toward the end of the series. A one hour premier has been made and it will be shown on February 12th at the Penn State Hershey Medical Center. We will attend and then participate along with director Barak Goodman in a discussion with the audience after. It is open to the public.

emily-jan-15-1PINIMAGEWe have more exciting things to announce in the future but the most important thing is that Emily’s bloodwork came back with zero B-cells. The T-cells are still working and her bloodwork looks perfect. I wish I could say we will worry less now but the truth is we are now and will always just be happy for every day we get to spend as a family.

We Believe!
~Tom

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  • Denise Kramer - My mother has leukemia, she is very old but I will watch this for my future and the future of my loved ones. Emily you are my hero, such a sweet lovely girl….stay strongReplyCancel

  • pat smith - My 4yr old granddaughter was recently diagnosed with ALL.Like Emily she was considered standard Tx,with a 90% cure rate until her genetic report came back with the leukemia cells being hypodyploid with less than 29 chromosones This happens to less than 1% of childhood leukemia pts.It happens to mostly adolescents.She was then placed on high risk and removed from clinical trial.She is now coming to an end of her induction phase and will be hoping and praying for remission.The tx plan is not definite yet but we r looking at a bone marrow transplant.If that does not work then she may be able to quailify for the t-cell tx.Her name is Alexis Rucker from Shenandoah ,Va.Please keep her in ur prayers!!ReplyCancel

  •  Jiang Dong - Pray for Amily,be healthy forever.ReplyCancel

  • Judy Williamson - I BELIEVE in Morrisdale. I pray for your entire family each morning to St. JudeReplyCancel