Living With Acute Myeloid Leukemia: A Mother’s Journey Through Memory, Illness, and Hope

When you are close to death—at least in my limited experience—your memories return in vivid flashes. They arrive uninvited: childhood afternoons making mud pies, college nights laughing at clumsy falls, the quiet moments that shape a life. I often wonder if these memories appear because I have a terminal diagnosis, or because my mind knows I have little time left to create new ones.

My daughter was born on May 25, 2024, ten minutes after I arrived at Columbia-Presbyterian Hospital in New York. My husband, George, and I held her in awe. A few hours later, doctors noticed that my white-blood-cell count had skyrocketed to 131,000—far beyond the normal range of four to eleven thousand. Pregnancy complications were the hopeful explanation. Leukemia was the terrifying alternative.

I didn’t believe it. I had just swum a mile the day before—nine months pregnant. I regularly ran long distances, swam across the Hudson River for charity, and filled my life with family dinners, museums, work, and adventure. I did not feel sick. But tests confirmed the diagnosis: acute myeloid leukemia with a rare mutation called Inversion 3, typically seen in older patients.

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Fighting Leukemia While Motherhood Begins

I spent five weeks in the hospital, trying to make sense of a future that had suddenly narrowed. Humor became a coping mechanism. I joked that the doctors had Munchausen syndrome by proxy or that, once my hair fell out, I looked like a battered Voldemort. The nurses were my lifeline—bringing warm blankets, ignoring contraband tea kettles, and sharing stories about their own lives. Their compassion carried me.

After initial chemotherapy lowered my blast-cell count, I transferred to Memorial Sloan Kettering for a bone-marrow transplant. My sister was a perfect donor match. For hours, she endured the extraction process so that her cells could save me. When they were infused, they smelled strangely like canned tomato soup; I sneezed twelve times and vomited. Then we waited. Would her cells cure me? Would I inherit her allergies or quirks?

George stayed by my side every moment—managing doctors, insurance, and my frustrations. He slept on hospital floors and carried meals back and forth between home and the ward. I feel cheated knowing I may not have a lifetime left with him, with our children, or with the ordinary joys we built together.

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Relapse, Trials, and the Fight for Time

Although I entered remission, the cancer returned. Leukemia with my mutation “likes to come back,” my doctor warned. I joined a clinical trial for CAR-T therapy using my sister’s engineered T-cells. The treatment nearly destroyed my lungs and liver but brought me into remission again—briefly.

A second transplant followed, this time from an unrelated donor in the Pacific Northwest. I imagined thanking him someday, but remission slipped away yet again. More hospitalizations, more weight loss, and eventually, learning to walk again.

Recently, my doctor told me he might be able to keep me alive for a year. My first thought was not fear—it was heartbreak. My children are small; they may not remember me. My daughter barely knows me outside of hospital rooms and FaceTime calls. My son may grow up with memories borrowed from photographs rather than experience.

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The Political Weight Behind Cancer Care

While I fought for my life, my cousin Robert F. Kennedy Jr. rose to national prominence, spreading vaccine skepticism and assuming leadership at the Department of Health and Human Services. His policies cut billions from research, halted clinical trials, and jeopardized access to the very treatments keeping me alive. Drugs like cytarabine—derived from ocean sponges and developed with public funding—might not exist if the system he is reshaping had existed decades ago.

For me, these cuts are not abstract political disagreements. They are survival.

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Holding On to What Matters

My original plan was to write a book about the oceans. Now, I focus on writing memories into my brain: my son trying to say Anna Karenina, his habit of hugging me and saying, “I hear you, buddy,” or my daughter stomping around in rain boots with no pants, whispering “Baby, baby” into a toy phone.

I try to live in the present. Some days it feels impossible. Still, the memories arrive—of my life, my children, my younger selves. I cling to them even knowing that when I die, they go with me.

Until then, I keep remembering.

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