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

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

As I was going through our photos from 2014 trying to pick a few of my favorites I realized how many fun and amazing things we were able to do with Emily this year! It was definitely our busiest year! Here are some highlights:

Below Left: In January we had a chance to speak at the inspirational dinner for the Leukemia and Lymphoma Society (LLS) Team in Training at the Disney World Marathon. We had a fantastic time and it was wonderful to meet so many people involved with LLS. We support LLS whenever we can because they helped fund the T-cell therapy research. We always enjoy speaking at their events and meeting so many inspiring people! Below Right: The 3rd weekend in February is our FAVORITE WEEKEND of the year! The Penn State Dance MaraTHON. It’s always amazing and Emily says it’s better than Christmas.

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Below: In March Emily was asked to attend the MardiPaws Parade in Louisiana. We were hosted by two wonderful families – The Carey’s and the Gutnisky’s – who went out of their way to make sure our time there was special and fun! We still talk about how much fun we had. Emily and new friend Mollie still keep in touch. Emily’s highlights of the trip were snuggling dogs in the parade, kissing a giraffe, and making pizzas. Kari’s highlight was meeting Ian Somerhalder:-)

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In April, we made a trip to Philadelphia for Emily’s 2-year follow-up appointment along with a camera crew that followed us during Emily’s visit. The filming is part of a documentary coming out in March/April 2015 on PBS called The Story of Cancer. We will post more about this as it gets closer.

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Also in April, we traveled to Pittsburgh where Emily was a junior bridesmaid in Aunt Brenda’s wedding!

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On another trip to Philadelphia we caught up with Austin and his family. Austin is still in remission 1 1/2 years after he had the T-cell therapy. We also had chance to attend an event to honor Dr. Bruce Levine who engineers the T-cells in his lab.

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In May, Emily celebrated her 9th birthday!

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As part of her birthday week, she got to visit the Penn Vet Working Dog Center and feed hippos at the Philadelphia Zoo.

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Also in May, we celebrated that Emily was 2-years cancer free!

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We also found out that Emily and Lucy’s photo is in a microbiology book:-)

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Below Left: Also in May, we attended a fundraising event for Solving Kids Cancer – a non-profit organization that raises funds for pediatric cancer research. Some well known designers from the fashion industry attended the event including Donna Karan and Bonnie Young (shown below with Emily). We went to Bonnie Young’s studio so Emily could try on dresses for the event and she wore one of Bonnie’s dresses that evening! Below Right: We met up with several friends who now live in NYC who were part of the Dance MaraTHON when they attended Penn State.

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At another Leukemia and Lymphoma Society event, we met Jessica Melore and Erin Hammett Ruddy – two women who also have amazing cancer survival stories. Their stories are very, very inspiring.

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Early in the summer, Emily was photographed by Brent Stirton – a photographer for National Geographic (although these photos are not for National Geographic). His photography is stunning and it was really fun to watch him work with Emily. She loved this photo shoot because she got to ride a horse – something she has always wanted to do but never had a chance to do until then! Brent also photographed her on her 4-wheeler at our camp.

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In June, we attended the Leukemia and Lymphoma Society Summer Solstice event in Hershey, PA. Emily auctioned off her artwork for $4,500 as part of the fundraiser!

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Another adventure was going to Nemacolin Woodlands Resort. We went there as part of the filming for a segment for the Stand Up to Cancer Telethon. Emily went zip lining and talked Tom and I into going too! Emily L-O-V-E-D it and wasn’t scared AT ALL.

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The cameraman also had to go zip lining to try to catch it on film.

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Nemacolin went out of their way to make the weekend special for Emily and she was able to go behind the scenes and feed lions, tiger, bears, and baby goats. She was in heaven (she loves all animals and plan to be a veterinarian).

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While at Nemacolin we ran into Neil Walker who invited her to the Stand-Up-to-Cancer Pirate game.

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We did take some time to just relax and went on our yearly beach vacation!

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Just some normal everyday photos of Emily with Lucy, dancing in the rain, and getting her immunoglobulin infusion.

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End of summer party with Emily’s Aunts and cousins and her first day of 4th grade photo.

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Perhaps the most exciting trip was going to Hollywood, CA to attend the Stand-Up-to-Cancer Telethon! Emily walked the Red Carpet.

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We had a chance to meet cancer survivor Ethan Zahn.

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It was really fun getting attending the telethon. Emily is pictured on the left with cancer survivor Suleika Jaouad and the photo on the right is with Katie Couric!

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While we were there we met up with a lot of friends including Nurse Karlie. Karlie was one of the first nurses we met at Hershey Medical Center when Emily was first diagnosed. Karlie has since moved to L.A. and is a pediatric nurse at the Children’s Hospital there.

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A few other highlights were getting to see Emily painted in the Penn State Mural in person and we (Tom and Kari) went to Las Vegas to share Emily’s story at a conference.

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Our last event for the year was the Ride to Conquer Cancer – Emily raised over $50,000 thanks to some very generous donors!

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And finally, our yearly family photo!

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We managed to pack a lot of adventures into 2014! We are so very grateful that Emily has remained healthy and that we were able to share these experiences with her. We hope 2015 brings even more fun adventure! In January, we will be announcing a project we’ve been working on and will share more information about The Story of Cancer documentary (we hear there might be a premiere in State College in February – we will keep you posted!).

Have a Happy, Healthy New Year!!

We Believe,
Tom, Kari & Emily

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