Angioimmunoblastic T-cell Lymphoma: Amy's Story

From the very beginning, Amy's experience of being a young mother was shadowed by illness

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Amy Steeves 

Apex, North Carolina 
Angioimmunoblastic T-cell Lymphoma 
Transplant in 2018 and 2019 
Many thanks to Duke University and the American Society for Transplantation and Cellular Therapy for helping us share Amy’s story.  

From the very beginning, Amy Steeve’s experience of being a young mother was shadowed by illness. During her first pregnancy, she developed a full body rash. “Everyone kept saying it’s a pregnancy rash, it will get better,” Amy recalls. “But after I delivered, my symptoms grew worse. I had fevers, I was tired all the time. For a year and a half, I was misdiagnosed.” Until one day, in the North Carolina hills, on what should have been a fun family hike with husband Cody and ten-month-old baby Hudson, Amy had difficulty breathing. Cody rushed her to a local ER where her oxygen level was a perilous 80 percent. 

Amy, a pharmacist, received the news with relative sanguine, “I told them I’d go home and see my doctor. But they said, ‘No! You need an ambulance!’” Amy was transferred to an ICU in a nearby hospital, where doctors determined that fluid filling her lungs was leaking from severely swollen lymph nodes. When a biopsy revealed an extremely rare form of lymphoma known as AITL, Angioimmunoblastic T-cell Lymphoma, Amy started care at Duke Cancer Center. 

Recounting this harrowing story, Amy pauses note, “Fun fact! My lymphoma usually only occurs in men over 75!” Even when finding flashes of humor in her crisis, Amy was terrified. The first phase of treatment would require her to be separated from Hudson for weeks or months. Luckily, Amy’s parents lived close by. While Cody and Amy’s dad took turns at her bedside, her mom cared for Hudson, “My mom just took Hudson over!”  

During the three years of remission Amy enjoyed after her first protocol, she and Cody joyfully welcomed their second son, Sawyer. Shortly after Sawyer’s birth, “I noticed a rashy spot on my arm, but I wasn’t worried. I called dermatology, they sent me back to oncology.” Amy recalls, “My plan was to get my scan and go home with some ointment to clear up my rash. Instead, the scan showed the lymphoma was back…  I had to stop breast feeding to do more chemo.”    

This was especially devastating news because Amy’s treatment options were limited; Amy needed a stem cell transplant but none of her three siblings was a fully matched donor, and an anonymous donor could not be located on the registry of unrelated donors. 

In May of 2018, as a stop gap measure, Amy had an autologous transplant, “We knew it was going to be a band aid.” Again, her lymphoma returned. Amy remembers going to a follow-up appointment at Duke prepared to hear the very worst. Instead, “My doctor said, ‘We ran you again, you have a perfect match overseas, and he’s on board!’”  

Amy was overwhelmed by the kindness of a total stranger, an ocean away, prepared to offer her “a third chance at life.” Amy recalls, “It’s not often you get to cry happy tears in the Duke Cancer Center. This was one of those days!” 

Amy proceeded to transplant in March of 2019, buoyed by support from family, friends and a caring network of fellow families at her sons’ preschool, who filled a box with 90 personal cards of love and support for Amy - one for each day she’d be away from home. “I took that box to transplant and I opened one every day,” Amy remembers. “It became a whole thing on the unit… the nurses would rush in to see the day’s card! I called it my Box of Sunshine.”  

Over the course of her treatment and recovery, Amy made some radical changes. First, she gave up her career as a pharmacist for the joy-filled job of preschool teacher. In 2022, she also founded her own non-profit, Amy’s Rays of Sunshine, (AROS) “I wished everyone could have a ‘Box of Sunshine’” Amy says. And so, with her usual pluck, Amy simply Googled “how to make a non-profit,” and kicked off her way of “paying it forward.” In 2023, AROS delivered over 100 boxes of personal notes of support and love to transplant patients around the country. 

But perhaps the biggest gift of Amy’s ‘third chance at life’ has been coming to know her anonymous hero. “After waiting two years,” Amy remembers, “I woke up one morning and there was his information: Sebastian, a 23-year-old college student from Germany. I instantly sent him a picture of my family captioned: This is the family you saved. He emailed me back right away, ‘I called every month to see if they’d tell me how you were doing.’” 

Last July, Amy’s family traveled to Europe to meet Sebastian. Amy recalls the emotion of the moment, “It felt like a blind date but also like meeting a long-lost friend. At the train station, our boys stood at the top of this big staircase, searching for him. ‘I see him, I see him,’ they called.” After all this time, there he was; they all hugged and then, “We went to get waffle fries!” They spent two weeks traveling together through Belgium and Germany, where they met Sebastian’s parents in his hometown of Koblenz. When Amy had a moment alone with Sebastian’s mom she told her, “You have created an amazing human being.”  

A leading center of clinical care, medical education, and biomedical research, Duke Cancer Institute is consistently ranked among the nation’s premier healthcare institutions. Patients directly benefit from Duke’s leadership in cancer research, thanks to a “bench to bedside” approach that focuses on making promising new therapies quickly available to those who need them most. Duke continues to earn national and global recognition for its innovations in blood and marrow transplantation.  

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.