9 Questions with The Emily Whitehead Foundation

Emily Whitehead Foundation Interview

As part of our campaign to #SeeEmilysJourney we spoke with The Emily Whitehead Foundation to ask 9 questions to celebrate the 9 year anniversary of Emily’s remission. Emily was diagnosed with acute lymphoblastic leukaemia in 2010 when she was just 5 years old. In 2012, Emily was enrolled in a CAR-T trial for children, this was a new cell therapy cancer treatment that had only just been approved for clinical trial in children and Emily was treated ad the very first pediatric patient.

1- What is the mission of the Emily Whitehead Foundation?

We initially launched the Emily Whitehead Foundation in 2015 to increase awareness of CAR-T cell therapy to treat pediatric leukemia. We knew there were other families out there with a child fighting cancer who were hearing the same words we did: “I’m sorry, but we are out of options to treat your child.” 

We had shared Emily’s story for a few years before beginning our own foundation. We worked with other foundations to share Emily’s story so they could raise funds for their own missions. All of these foundations were amazing to work with and their missions were important, but we wanted Emily’s story to have a greater impact on improving pediatric cancer treatments and to make sure funds raised from using her story were directly supporting pediatric CAR-T cell therapy research. We still partner with other foundations who support pediatric cancer research.

Another goal, both as a family and our foundation team, was to advocate for the treatment to be approved by the US FDA. We knew how important this would be to increasing availability of the treatment to others.

Today, our mission is to advocate for alternative treatment options that are less toxic and more targeted for pediatric cancer patients, by raising funds to support further research and development of these advanced therapies, and to continue being a resource for patients and families seeking hope and information.

Emily and family, cancer free 9 years after CAR-T cell therapy

2- CAR-T Trial for Children – How did you find out about the therapy?

We found out about the therapy by going for a second opinion about Emily’s treatment after she relapsed. We were happy with the hospital who first treated Emily, but after she relapsed, we felt we needed to research and educate ourselves on other options that might be available and hear what other doctors would recommend. 

At first, there didn’t seem to be any other options. Our choice was to take Emily home on hospice or try to give her another round of harsh chemo that would have made her terribly ill (and likely would not have worked). We called Children’s Hospital of Philadelphia (CHOP) one more time, just to see if there was anything else we could try. Incredibly, just a few days before our phone call, CAR-T cell therapy had been approved for use in children through a clinical trial. We immediately knew that this was what Emily needed. It was a different kind of treatment that would not be as harsh as chemotherapy.

3 – How much did you know about the cell journey as Emily was going through her therapy process? Were you aware of the complexities involved in the treatment journey?

We did not know much initially. Emily’s doctors made sure that we understood that the therapy had not yet been tried on any other child, so going into it all we knew is that it had been tried on three older men and the therapy had been successful in 2 out of 3 of them. Although the doctors were hopeful, they said they didn’t know how much it would reduce Emily’s leukemia, if at all. 

We allowed a camera crew into Emily’s room as they infused the CAR-T cells into her. In that moment we weren’t thinking about the possible impact the therapy would have if it worked, we were only focused on Emily and hoping that the therapy would do something to help. Although we knew her doctors were hopeful about this treatment, we didn’t yet understand just how incredible this treatment could be if it worked.

We were told that Emily may develop flu-like symptoms, but we didn’t expect her to get as sick as she did. We didn’t realize until a few days after she was in the PICU in a coma, that the CAR-T cells were attacking the cancer cells and it overwhelmed her body. Thanks to a fantastic medical team, they were able to pull her through that time. Although we knew the CAR-T cells did something, it was hard to believe when we learned she was cancer free. We still didn’t know if she should go to a bone marrow transplant. After what she had been through, we decided not to put her through a transplant at that time. We just kept putting it off and waiting to see if the CAR-T cells would last or continue working. Nine years later, they are still circulating in her body!

4 – What advice would you give to other families going through an advanced therapy journey?

We tell everyone to research and learn about the options available and trust your instincts because no one knows your child like you do. Most families want to know what the journey was like or what to expect.  Most of them know Emily’s story, but there have now been hundreds of children treated. We try to connect them with other families because every child’s journey is unique.

Emily Whitehead following CAR-T Cell Therapy to treat paediatric leukemia

5 – Could you share a recent patient story that the Foundation has supported? 

Recently, an orthopedic surgeon from India reached out to us. He was treating patients and said no one would help him get to the USA to get into a CAR-T cell therapy trial for his son, Chinmay. We advocated with our contacts to help get their Visa approved to travel to the USA and they landed at Dulles airport on New Year’s Day. They started treatment at the NIH, but are currently in a CD-19 CAR-T clinical trial at Seattle trying to get him into remission.

You can read more about their story, here: https://emilywhiteheadfoundation.org/patient-stories/chinmay-gupta/

6 – Do you feel that patients have enough awareness of advanced therapies and what more could be done to help those in need to find out more?

Awareness has greatly increased in the past few years because others have shared their stories. There is still work to do though. Working with others, such as TrakCel, to share patient stories does a lot to increase awareness. For some families, their doctors have been hesitant to recommend CAR-T cell therapy. In part, because they don’t know enough about it themselves yet and also because the therapy does not work in 100% of patients. Most families want to try CAR-T cell therapy before putting their child through a bone marrow transplant. We get a lot of calls from parents who are trying to decide between the two treatment options. We always tell them to do what feels right for them. Usually, they choose CAR-T cell therapy. No parent wants to see their child suffer through harsh treatments like chemo and radiation. CAR-T cell therapy cancer treatment has given families another option to keep their child alive. Hundreds of children would not be alive today without this treatment.

7 – Tom, can you tell us how you felt testifying for the approval of the therapy at the FDA in July 2017? From your perspective, how has this approval impacted the CAR-T field?

Testifying at the FDA ODAC hearing was one of the most inspiring days of my life. I asked Emily to walk up to the podium with me because if the panel saw her it would be more important than any words I could say. She was too nervous so I said just wave from the back of the room. While I was speaking, she realized the impact that her joining me would have so she walked up behind me on her own and grabbed my arm. I said to the panel, “If you want to see what a cure looks like, she is standing right  beside me”. They voted unanimously just minutes later to recommend FDA approval of Kymriah. The approval has since made it possible for many more children to receive the treatment, as well as made it much more likely for pediatric oncologists at smaller cancer centers to recommend it to their patients.

8 – During the years after, the Emily Whitehead Foundation has been traveling to spread the news and story of Emily’s successful treatment, can you share with us your top three most memorable moments? 

Visiting the White House and meeting then President of the United States, Barack Obama, was a highlight! He wrote her an excuse for school at Emily’s request because she was not allowed to tell them why she would be out for the day until after the press conference. He wrote, “Emily was not in school today because she was with me!”, and then he signed it. We were excited to be invited because after she received the therapy, Tom told her that she would get to meet the president someday when he hears that she was the first child treated. 

Another highlight was meeting Lady Gaga and having her pull Emily up on stage to sing to her. Emily liked meeting both Ken Burns and Steven Spielberg because she wants to be a filmmaker. We had a chance to go behind the scenes of Steven Spielberg’s upcoming movie, West Side Story, as it was being filmed. That was really fun to see how movies are made! We love traveling in general. Emily has had an opportunity to travel to several other countries, including a trip to Oslo, Norway to meet the first child treated with CAR-T cell therapy in Norway.

Emily with Barack Obama, spreading the news of her successful CAR-T cell therapy treatment

9 – We hear that your family recently published a book, and that you are working on a documentary. When and where can we watch it? 

Our book is called Praying For Emily: The Faith, Science, and Miracles that Saved Our Daughter is available in book stores and on Amazon. We also have a website www.prayingforemily.com where you can order a signed copy.

Our feature documentary film titled “Trial By Fire”, by OSCAR winning director, Ross Kauffman, is just being finished. It will be submitted to film festivals later this year with a public release date in the spring or summer of 2022.

To learn more about the Emily Whitehead foundation, their work and read other stories like Emily’s or find CAR-T cell therapy clinical trials, visit their website.

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