Spotlight a Survivor: Acute Lymphoblastic Leukemia (ALL): Kayla's Story

“My biggest moment of breakdown was when my dad picked me up from the hospital. I’d been holding it together so long that, when I got in the car, I just lost it. My dad said, ‘you saved up all your tears for me…thank you!’”

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Kayla Rose 

Uxbridge, Massachusetts 
Acute Lymphoblastic Leukemia 
Transplanted in 2021 
 

Many thanks to Dana-Farber Cancer Institute and the American Society for Transplantation and Cellular Therapy for helping us share Kayla’s story.

Kayla Rose, transplant survivor and yoga-lover, is an optimist by nature and optometrist by training. In 2019, she graduated from her dream school, “I only applied to one optometry school. It looked like Hogwarts to me, and I said, ‘This is the one!’”

Young enough to appreciate Harry Potter and accomplished enough to join a highly respected optometry practice post-graduation, for Kayla, serious illness was nowhere on her radar. But in 2020, shortly after Thanksgiving, Kayla learned that the extreme fatigue she’d attributed to pandemic upheaval and job turbulence, was actually Acute Lymphoblastic Leukemia (ALL) with the Philadelphia Chromosome gene mutation. 

At the time of her diagnosis, Kayla, who lives in Uxbridge Massachusetts, was just 27 years old and in a happy relationship with her girlfriend, Kim. Ideally, their time together would be full of adventure and the excitement of a deepening partnership. Instead, on the first weekend of December 2020, Kayla would enter Dana- Faber to begin treatment.

But before she was admitted, Kayla’s family rallied to show their support. “My mom,” Kayla says, “being the saint she is, threw me an early Christmas. Her love language is gift giving! I was opening gifts for 90 minutes. I needed an intermission!”

Just when she thought the extravaganza was over, Kayla recalls, “Kim said, ‘Wait there’s one more present you have to open.’” Inside a small jeweler’s box was an engagement ring. Kim told Kayla, “I want you to look at this ring every day to remind you what you’re fighting for.” And, Kayla says, “I did, I looked at that ring every day and thought, ‘Wow, she’s so pretty…I’m going home to her.”   

And though she did indeed make it home to Kim, the journey that lay ahead -- including initial treatment, a successful allogeneic transplant, and two years of recuperation – were transformative in ways Kayla never anticipated. “I have a strong caretaker personality,” she says, “so for me, being care-taken was very emotional.” Learning to accept the caring of others was easiest, Kayla says, when people “treated me normal, just like a bald version of myself.” 

Kayla and Dad image_123650291-444px.jpgEven as she aimed for “normal” Kayla was overwhelmed at moments by the enormity of what she went through. She recalls, “My biggest moment of breakdown was when my dad picked me up from the hospital. I’d been holding it together so long that, when I got in the car, I just lost it. My dad said, ‘you saved up all your tears for me…thank you!’”

To help process the emotional aspects of treatment, Kayla found therapy to be helpful. “One of the great resources at Dana-Farber is free therapy,” she says. “I saw my therapist, Kristy, consistently. For instance, I was forced into menopause at 28 years old! I needed to talk about that with someone. My friends aren’t going through it to commiserate with, my friends are in their prime!” 

While Kayla cherishes her return to health, she acknowledges the hardships. “Mentally, emotionally, you grieve what things used to look like...” she says. “I’ve always been relatively healthy and athletic and now, my strength and flexibility are not fully back, it’s a slower process even in my yoga practice.” 

One person uniquely able to understand this slow return is Mia, a friend Kayla made while in-patient. Ten years older and the mother of a young daughter, Mia was just one week ahead of Kayla on the transplant timeline. Kayla remembers seeing Mia on the ward and joking, “Mom! I wanna be friends with her.” Happily, the feeling was mutual and sustained. “Both of us hit a two-year slump,” Kayla says. “With your family you tend to sugarcoat things. The caretaker in me tried to care take my family even inside the journey. Having Mia to be completely honest with, and say whatever was on my mind, was really special.” Kayla and Kim Wedding image_123650291-392px.jpg

In the same way that Mia helped pull Kayla through, Kayla has befriended a woman younger than herself, Janelle, just 24, whom she first noticed in her yoga class. “Having just been in the cancer world, I noticed her port and knew she was going through treatment,” Kayla recalls. “For a couple of classes I didn’t introduce myself, I didn’t want to intrude on her time of self-soothing. But I finally said hello and told her my history.”

They struck up a friendship, “She can see in me that life can get back to some kind of normal, after everything you go through.” They also get one another’s occasionally macabre humor, “Only cancer patients can understand cancer humor! We say things to each other like ‘Let's celebrate, whoo hoo, it didn’t spread to the liver!’” 

These days, there’s much to celebrate. On August 19th, 2022, Kayla and Kim married in South Carolina, overlooking the ocean. They honeymooned in Bermuda, have been to Disney World and Universal studios with family, traveled to Ireland, London, and Paris, Las Vegas (twice), and seen the Grand Canyon and Zion National Park. “Hopefully,” Kayla says, “this is just the beginning of our many adventures together!” 

 

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The Adult Stem Cell Transplantation Program at Dana-Farber Brigham Cancer Center is one of the largest and most experienced stem cell transplant programs in the world. We have performed more than 11,600 transplants for the treatment of blood cancers and related disorders since our program began in 1972. We perform rigorous outcomes analysis to support our research and treatment advances. Our center-specific outcomes have been recognized as among the best in the world. dana-farber.org/sct   

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The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.  

 

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