My survivor story began on the day I was diagnosed with leukemia — October 25, 2014.
Before that day, I had a full life — a large family, a wonderful husband, five sons, three daughters-in-law, two dogs, and a challenging career as a nurse executive where I was traveling two to three weeks every month. I was a health nut, running 20 miles weekly, eating healthy, and never smoking.
Everything changed when I went to the ER with a fever and cough and learned that my white count was extremely high (107,000). I looked at my husband and said, “I have leukemia.” The next day, it was confirmed that I had acute myeloid leukemia (AML), an aggressive form of leukemia.
What followed was a whirlwind of chemo, bone marrow biopsies, and the news that I would need a stem cell transplant to survive. I was terrified and incredibly sad. I remember thinking that I would never get to meet my grandchildren.
I was transferred to a blood cancer Center of Excellence, where I would remain for five months. I had nine rounds of chemo and 11 total body radiation treatments while a search for a stem cell donor was underway. My donor was finally found — an amazing young doctor who didn’t even know me but still offered his gift of life.
I was incredibly lucky to have amazing friends and family come together to form my village, Team Ilana. They carried me through this whole process, along with my incredible nurses and doctors. They held my hand when I was terrified, kept my spirits up when I was down, and made me laugh when I didn’t think I could.
My friends started drawing pictures of their faces on paper plates and taping them up in my room. More people joined in, and I became known around the hospital as “The Lady with the Plates.” These same plates decorate my tent at each Light The Night Walk (LTN).
After a successful transplant, I finally went home. I felt like I had a new lease on life. I got to hold my newborn grandson in my arms (I have three now!). I traveled with my husband and friends. I became a volunteer for Blood Cancer United and got my friends to join me. I told my story to many groups, hoping to inspire generous giving. I counseled other AML patients.
Then, graft-versus-host disease (GVHD) hit. I required almost constant immune suppression for eight years. Many complications followed — sepsis (near death twice), bone death requiring seven joint replacements, infections such as salmonella, shingles, fungal lung infection, COVID-19, and a serious and rare lung disease requiring oxygen for 18 months. And many more.
But Team Ilana inspired me to keep going. I refused to give up.
Here is what I have learned during this monumental struggle for life:
• You need a village!
• You have to be your own healthcare advocate!
• You have to pay it forward!
• You have to treasure each day and look for the wonders in life!
• But most of all, you have to fight!!
Ilana
acute myeloid leukemia (AML)
