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Diagnosed with acute lymphoblastic leukemia in 2002 after months of unexplained pain, our interviewee entered treatment at a time when cancer information was scarce and the internet offered little guidance. With no educational resources to help her understand the disease, she relied entirely on her doctors—facing chemotherapy, radiation, and their harsh side effects without knowing why they were happening or what to expect.
Supported by her father, her faith, and small daily routines, she pushed through the physical and emotional toll. Her journey highlights a powerful truth: lack of cancer literacy can deepen fear as much as the illness itself.
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Read her full story here.
I was diagnosed with AML three years ago and underwent 7+3 induction chemotherapy. Because of a specific mutation that increased my relapse risk, my care team recommended an allogeneic stem cell transplant. Between my brother and my 13-year-old daughter, Chloe, my oncologist selected my daughter as the best haploidentical match. Johns Hopkins Hospital pioneered the haploidentical SCT protocol, and I’m grateful to have benefited from their expertise.
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The hardest part of the journey was on Days +1 and +2, when I experienced intense flu-like symptoms driven by cytokine release. I was also afraid of developing severe acute GVHD, but fortunately, it never occurred, largely thanks to JHH’s use of post-transplant Cytoxan, which selectively targets fast-dividing T cells while preserving the slower-dividing ones.
I have two suggestions for anyone facing this process. First, exercise whenever you can. I dragged my lethargic body around the hospital for 3000 steps even on the day of transplant. That is a sure way of not losing too much body mass. Two, become an expert in your disease by poring over literature. I spot an overlooked mutation in a stack of pathology report, alerted my team, prompting a swift change in my treatment regimen.
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Above all, be your own advocate, and stay hopeful.
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