The Emily Whitehead Foundation

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Kari, Emily and Tom at the NYC Gala, 2015


A GIFT OF INSPIRATION

The Emily Whitehead Foundation (EWF) is a nonprofit company organized by Tom and Kari Whitehead on behalf of the treatment that their daughter, Emily, received in 2012.  Emily is the first pediatric patient to receive CAR T-cell therapy.  The foundation’s purpose is to raise money and awareness for childhood cancers and cancer research.  I was first diagnosed with children’s Acute Lymphoblastic Leukemia in 2010.  Facing more relapses and less options, I began to research T-cell therapy.  Emily has been my hero for nearly three years – since I first watched her T-cell story in the YouTube video, Fire with Fire, by Ross Kauffman.  Her story has kept me inspired and has given me the courage to keep fighting for T-cell therapy and awareness.  


CHALLENGES

During my struggle to gain access to CAR T-cell therapy at The University of Pennsylvania, I faced several problems that included:

  • Disqualification from the study
  • Discouragement and loss of hope
  • Loss of travel funds

FIRST CONNECTION

I first reached out to Tom in July 2016, in an effort to obtain guidance from an expert in patient care and advocacy with T-cell therapy.  Although I qualified for the CAR T-cell trial in April 2016, I experienced a relapse in the central nervous system (CNS) which immediately disqualified me from the study.  After six years of battling ALL coupled with another relapse, I began to lose hope.  I chose to reach out to the EWF, because I knew Tom and Kari Whitehead would have a great deal of knowledge and experience in T-cell therapy and patient advocacy.


SUPPORT PROVIDED 

  • Reliable source of contact
  • Patient advocacy
  • Prayer
  • Assistance with travel arrangements

SHARING AND CARING

In early August, I explained to Tom that I no longer qualified for the trial, and that I was tired of fighting.  I stopped all treatments and a Stanford pallative care team had given me three to five weeks to live.  Tom told me not to give up and said that things would fall into place.  He assured me that he and the EWF would continue to help get me out to Philadelphia for treatment. His words eased my fears and frustration.  He helped me regain focus and get back on track in my efforts.  The EWF community added me to prayer lists, while Tom made dozens of phone calls in an attempt to get me out to Philadelphia.  Tom advocated on my behalf, stood up for my rights, and encouraged me to reach out to others who once faced similar situations.

After a trip back to Stanford per Tom’s recommendation, doctors confirmed a miracle – my blood looked normal and my spinal resutls showed no leukemia cells in the CNS.  At this point I had not received chemotherapy or blood transfusions for several weeks, so it is very unusual that my labs would look so good.  This meant that I qualified for the T-cell therapy trial.  Tom immediately put me in contact with someone who quickly arranged flights for me and a friend.


OUTCOME

  • Received T-cells
  • Cancer free
  • Future advocate

WITH GRATTITUDE

I am most grateful to the Whiteheads for coming into my life during my time of need.  The EWF community restored the hope I once lost and they showed me what it was like to believe all over again.  The Whiteheads were instrumental in getting me out to Philadelphia for the CAR T-cell treatment.  The EWF’s  community had a major impact throughout my CAR T-cell journey at The University of Pennsylvania.  If not for them, I would not have received my treatment.


ABOUT THE EWF 

The EWF has created a vast community – connecting patients, parents, fighters, survivors, and supporters who help patients and families involved with T-cell therapy.  The foundation has a team of individuals who have come together to help inspire and create a brighter future for children, patients, and families.

SUPPORT FOR OTHERS

The EWF offers an array of services that can benefit patients and families who need help with:

  • T-cell therapy information
  • Sharing experiences
  • Encouragement
  • Community support
  • Awareness
  • Patient advocacy
  • Resources
  • Cancer research

HOW TO HELP

The Emily Whitehead Foundation is dedicated to raising awareness and funds for T-cell related therapy.  You can help by participating in a fundraising event or by donating.  For more information, you can visit the EWF’s website:

The Emily Whitehead Foundation 

OTHER RESOURCES

See T-cells in action!

Fire With Fire Video with Dr. Carl June

Follow Nicole and other patients journeys:

Fighting Fire with Fire – Nicole’s Journey U Penn


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T-Cell Therapy Patient Story: Nicole Gularte | Emily Whitehead Foundation

 

T-Cell Therapy Patient Story: Nicole Gularte

Written by Emily Whitehead Foundation co-founder and Emily’s dad, Tom Whitehead.

Nicole Gularte is 33 years old and has relapsed with leukemia 7 times. Over the last couple of years she has been speaking in California about Emily’s treatment in between her own cancer treatments at Stanford. Nicole had her T-cells extracted, modified, and frozen awhile back in case she needed T-cell therapy. I had been messaging Nicole to encourage her to keep fighting.

On August 12th she messaged me that she was worn out, had stopped treatment three weeks earlier, and that her doctors had given her 4 to 5 weeks to live. She told me that this time her relapse was in her spinal fluid, which would disqualify her from the T-cell therapy trial, so she had contacted her doctors to tell them she was stopping all treatment. I asked Nicole what she had done since stopping treatment because I was getting strong feelings that she was going to get her modified T-cells. She told me that since stopping treatment she had been baptized and had attended several events where people prayed for her.

I told her that it was hard for me to explain, but just like when I knew Emily would survive her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting. I explained to her that I have learned to pay attention to the whispers in my life and that if she would keep fighting we would do anything and everything to help her.

“I told her that it was hard for me to explain but, just like when I knew Emily would get through her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting.” – Tom Whitehead

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“I told her that it was hard for me to explain but, just like when I knew Emily would get through her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting.” – Tom Whitehead

Nicole messaged me not long after that and said ‘Thank you for inspiring me, I have now decided to get my blood checked one more time at Stanford’. She went the next day and that evening she and her mom called me crying and told me her blood came back cancer free. She went back to the doctor the next day and had a spinal tap…her spinal fluid came back clear of cancer. This meant that Nicole now qualified for the T-cell therapy clinical trial at Penn in Philadelphia, but she had lost nonrefundable flights because she was too sick to fly.

With help from some very special people, we were able to reach out to American Airlines and they donated a flight to get Nicole and her friend Janelle to Philadelphia so Nicole could get her T-cells. One of the doctor’s called me and said ‘Tom, I heard that you inspired Nicole, and I am amazed that she got results back cancer free.’ He said ‘I don’t know how to medically explain the clear blood test but I want you to know, I BELIEVE.’

Last month, Nicole received her modified T-cells and spiked a high fever due to the cytokine storm that can occur with this type of immunotherapy treatment (just like it did with Emily). She almost needed a ventilator but doctors administered tocilizumab (the same medicine that turned Emily around when she was so sick). It also worked for Nicole and she was feeling much better by the next day.

I received a message from Nicole when I was in Boston attending the International CAR-TCR Summit (a T-cell therapy conference). She told me that before she had the T-cell therapy, she had only been able to see in black and white in her left eye for the last two years due to leukemia cells in her eye…but that now she could see in full color! This was our first sign that the T-cells might be working. Nicole stayed in Philadelphia for several more weeks to recover and flew home to California earlier this week. On Thursday she received the news that her spinal fluid test came back cancer free. Then, on Friday, her doctors said her bone marrow was also free of cancer – the T-cell therapy worked! 

During Nicole’s time in Philadelphia, Kari happened to be speaking at a conference in Philadelphia, so she was able to meet and have lunch with Nicole and her friend Lia, and EWF board member Jessi Ayoub. Nicole, Lia, and Jessi also had a chance to attend Kari’s speech! You can follow Nicole’s journey on Facebook at Fighting Fire with Fire – Nicole’s Journey.

Kari and I receive calls and emails from patients from around the world more than once a week. We are working very hard to continue expanding the Emily Whitehead Foundation while we both work full-time jobs but there just never seems to be enough hours in the day! Talking with patients who need help now to survive always comes first. I hope to get the time to continue to update on other patients we are currently helping. Many patients still find out about these innovative treatments such as T-cell therapy too late.

We will continue to raise awareness for this treatment and help patients as much as we can. When Kari and I speak at events we always tell the story of how all of your prayers and positive thoughts helped our family get through Emily’s treatment. To continue growing our foundation we could use any help you can provide such as holding fundraisers and joining The Villagedonating, sharing your story, or sharing information from our website or these blog posts, so we can continue to reach other patients. Together we can make a difference!

For all the families who fought with us – we think of all of you every day especially those courageous warriors who cancer took from us. You inspire us to never stop trying to make a difference. I will continue to listen to the whispers and act on them in the hope that some day many more families will be changed for the better because their loved one survived just like our Emily.

We plan to continue sharing other patient’s stories here on our blog, including a patient who will receive the T-cell therapy this week!

Listen to the Whispers / We Believe!

~Tom