The COVID-19 pandemic was a difficult time for everyone, but when the LoMonaco family received a devastating diagnosis, life changed overnight. Sue LoMonaco shared her story about caring for her husband, who was diagnosed with acute myeloid leukemia (AML) during the COVID-19 pandemic.

This month, HealthTree Foundation is sharing your stories of caregiving to celebrate caregivers for Caregiver Awareness Month in November. 

A difficult diagnosis during a difficult time

Sue’s husband was diagnosed with AML in 2020 in the middle of the COVID-19 pandemic. He had originally gone to the emergency room with pneumonia, but was not responding to treatment. Because of pandemic restrictions in the hospital, Sue was not able to be with him when he received his diagnosis: his pneumonia was actually AML. 

“I could not go in, so I learned about his diagnosis from him on the phone as I was driving back to the hospital,” said Sue. “He was told that if he didn’t take treatment, he would be dead in two months, and treatment might help him survive two years. Talk about life-altering for both of us. It was extremely scary.” 

That day, Sue went home and tried to learn everything she could about AML and her husband’s treatment options. She had been thrown into the world of being a caretaker, and she was determined to help her husband live his best life while he was undergoing treatment.

Finding a new normal after an AML diagnosis

For the first year after his diagnosis, Sue’s husband was in the hospital more than he was at home. Adjusting to the new normal was a process. The treatments he received affected his immune system, which made every day activities more dangerous, especially during a pandemic. 

“You learn quickly that plans can change in a heartbeat, and you must roll with what you are dealt,” Sue shared, emphasizing how important it is to stay flexible with your plans. “We were always very careful, but he held the fact that he wanted to live and that is what we did. He enjoyed plays, wine dinners, visiting new cities, and spending time with family and friends. It was always great to see him smiling and enjoying himself.” 

After a year, Sue’s husband went into remission. “We did many things just to help him feel normal,” Sue said. They traveled, including trips to Clarksville, AZ to ride a train and taking a bucket list dream trip on an Alaskan cruise. They also revisited her husband’s time owning a pizza parlor in Chicago by inviting his nieces, nephews, and great nieces and nephews to learn how to make pizza at their home. 

Sue’s advice for caregivers 

“If there is one thing I could say to another caretaker, it would be to spend every day making your person feel special and cared for, but let them live,” Sue said. “They know they have the disease, but don’t let the disease have them. Let them live.” 

Sue’s words remind us of the courage, love, and hope caregivers bring every day for people with blood cancer. 

Connect with other caregivers with HealthTree

An AML diagnosis can feel overwhelming and frightening for everyone. You may need help gathering information and navigating an AML diagnosis. HealthTree can help. Join HealthTree to gain access to HealthTree Connect, where you can talk to other AML caregivers today.

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