Fighting For A Cure: A Friends Perspective

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Kelly Marie Schwerin has been one of many friends who witnessed the chaos, struggle, and perseverance throughout my six year battle.  When I returned from Philadelphia from my CAR T Cell journey, it was Kellys birthday.  On October 26, 2016 this is what she wrote:

You touched down at the airport last night as the clock ticked my birthday. I can’t help but imagine how YOU are actually the Birthday Girl. I’ll GLADLY share October 5th with you. For on your fight for a cure, THIS is the day you return to your home in California. After multiple medical ‘death sentences’, you have been released from your struggle by diligent, unrelenting, Science. YOU made this happen. YOU fought for your place in this world. You never wavered. You never gave up hope. You DEMANDED your right to access CarT-Cell therapy, and you will now be the case study for the expansion of that study. You didn’t just save your own live. You created an entirely new group of standards for future participants. Yes, you fight for the cure on a large scale. But your individual fight for YOUR CURE has opened the door for countless others. YOU took one HUGE GAMBLE. You turned down a perfect bone marrow transplant match. You did it because you believed in what they were doing in Philadelphia. You took the ULTIMATE leap of faith. And in doing so, you have opened the door to save countless lives beyond your own. So I am BEYOND proud to share this day, my birthday, with you. In fact, I’m lucky in that YOU share it with me. I love you.        

 

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Miracles at Penn Medicine

I completed my CAR T Cell Treatment on October 4th 2016 and five days later I was declared cancer free!  In fact, my tests showed I am in the deepest remission possible.

I was the first adult to turn down a 10/10 bone marrow transplant so I could allow myself to relapse, thus qualifying for the trial. It was a tough battle to get into the trial at Penn due to active CNS involvement for over two years, but I fought hard and in every possible way.  My efforts paid off because I will be giving a speech for The Parker Foundation at UPENN on October 25th, 2016!

I have photos with Carl June, Bruce Levine, and Don Siegle below.  I’m looking forward to speaking at the event!  I will have an update ASAP!

[Photo:  Myself, Dr. Bruce Levine, and , Dr. Don L Siegel. This was my first day of T cell transfusion].

[Photo: myself and Dr. Don Siegel. Photo was taken in their new lab which is also where Joe Biden had his photo taken for the cancer moonshot]

[Photo:  Dr. Carl June, myself, and Dr. Don Siegel.  Map behind us says, “Where in the World Is Carl June”]

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