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

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The One Who Stood By My Side

A visit to F Ground (cancer unit) at Stanford brought back memories of the many, many admissions and treatments that I received over the years. I was so happy to see the nurses and staff. But as soon as I saw Dr. Michaela Liedtke, my AMAZING hematologist, tears started pouring!!! When I first researched t-cell therapy, she was the ONLY doctor who “believed” in CAR T-Cell Therapy. Her personalized care and support have kept me going through these years with multiple relapses.

The last time I saw her, I was on Pallative care with only three to four weeks left to live. Today, we hugged and talked about the future. What a blessing!!!

The Power of Prayer

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Three weeks ago I was told by a pallative care team at Stanford that I would have three to four weeks of life left.  I had a beautiful baptism arranged by my soul sister, Stephanie Busch.  My baptism and celebration day was the most special day of my life.  I am grateful for everyone who helped make that day the best day ever!!!

I have attended church religiously and have had many people reach out to me.  My good friend and nurse, Janell arranged for her priest to have a blessing performed after mass on Sunday – it was very emotional and I cannot be more grateful for the friends who attended and also blessed me!

Last Sunday, The Sisterhood LA Foundation took me to Disneyland.  Before Disneyland, one of the sisters took me to her church and after mass, she asked her priest to bless me.  Words cannot express how beautiful that day was for me.  I am fortunate to have had the presence of such a humble and kind group of women.

This past week I have been with my mother.  I had a stomach flu and was not feeling well.  Was this going to be it for me?  Afterall, it is coming very close to the three to four weeks I have left according to pallative care!  One can only imagine what may be going through my mind or how all my loved ones were feeling.

Yesterday was a big day at Stanford.  We talked with my team of nurses and my doctor while waiting (a bit apprehensive) for test results.  Within moments my mother and I received notice that my labs (blood test results) came back lookng great.  What does this mean?  It means the leukemia has not taken over my body.  Now most know that THIS IS NOT NORMAL for a leukemia patient who has not received treatment or blood transfusion products!!!!  In fact, my test results are completely backwards from what they should look like!  WOW.  Even the nurses and my doctor were in disbelief.  Does this mean that the cancer is gone?  No way.  But it does mean that I have a littler more time… I don’t know how much time, the doctors don’t know how much time, and we won’t know until I become sick again.

Today, some influential people connected to The University of Pennsylvania and from Stand Up To Cancer reached out with some positive news.  I will not go into details yet as I do not want to get anyones hopes up. 

What I want to say is that I am so grateful for everyone who has blessed me with their company over the last few weeks.  You have all help me in so many ways and I am so fortunate to have all of you in my life.  You keep me inspired and determined, to say the least.

Finally, I want to thank all of my friends, family, priests, organizations and all other loved ones for praying for meover the last few weeks.  And I want to THANK GOD for answering those prayers!

I love all of you!  God Bless!!!