KYLE

Kyle was 27-years-old when her mother suddenly needed a stem cell transplant. It was 2013. She had a rare “unclassified” MPN and she was beginning the dangerous and often swift transition to acute myeloid leukemia (AML). 

As is often the case, there was not a lot of time for her mom or she and her younger sister to prepare. 

“It’s not a thing lay people know about…you don’t know what it is until you do it…and I don’t know how one can be prepared when so sudden,” says Kyle. “The transplant itself is underwhelming,” she adds. Understanding what is to come – after the transplant – is an area she believes could use more patient and caregiver support. 

Today, Kyle is a member of the 2024-2026 MPNRF Patient Impact Council. Her role as caretaker during and after her mother’s transplantation brings a unique voice to the council, as their responsibilities include reviewing research directions and projects. 

“While treatment is ongoing, we just celebrated her 10-year birthday in August,” says Kyle. “Around the 100-day mark, we knew it failed (the transplant). Since then, it has been a roller coaster with different treatments, including a clinical trial that saw some exciting results at the time.” 

Kyle says she and her mom are fortunate to have a great care team at Weill Cornell in New York City. “But it’s still a hospital and you have to be on top of things.” And she and her sister were. One thing she notes is that more education would be helpful for families about what is to come. 

It was in the first handful of years before and during post-transplant, that she sees her advocacy role as being most important. “They would always laugh when I came in with my notebook,” especially during the transplant period, she remembers. “Not being the patient, I could be a little more objective.”  

She adds: “My mom is a strong advocate herself. But a patient is not always able to focus, incredibly overwhelmed and scared. I ask doctors or PAs questions all the time. I write everything down exactly. I can say: ‘She didn’t say (exactly) that.’”  

Kyle looks forward to new drug discoveries that make transplantation needed less often. “Transplantation is incredibly physical on the patient and caregiver,” she says. “I am super hopeful that some drug will offer relief of symptoms and extend life with less fear of long-term side effects.” 

Even more than 10 years later, Kyle gets emotional when talking about the family dealing with her mom’s cancer, including happy tears thinking about how it brought them closer than ever. 

“I would love to try to help caregivers navigate the scary and confusing process of treatment, the hospital system, finding resources, whether they be financial or otherwise, etc.,” says Kyle.  

While she says she isn’t a science minded person (she is in the theater industry), she says she is very interested in the science side of these chronic cancers. She is also interested in the need for mental health support for both MPN patients and caregivers, and she hopes to have a related influence in some way.  

As a member of the Patient Impact Council, she is excited to do what she can, bringing her caregiver experience to bare on patient resources and advocacy. “I want to help give hope to people with rare MPNs by helping to support innovative research.”