Leukemia caregiver: Why I personally support MD Anderson’s research
By the autumn of 2017, I’d been working as a grant program manager in the Department of Translational Molecular Pathology on the research administration side of things here at MD Anderson for about a year. I had already seen some of the incredible things our institution could do. So, I knew that our clinical trials saved and extended people’s lives.
I just never imagined that my mother’s life would be one of them.
My mom passed away in 2022, about eight months after her acute myeloid leukemia (AML) came back out of remission. But thanks to a targeted therapy clinical trial at MD Anderson, she got to enjoy life — and we got to enjoy her — for five and half years longer than any of us expected after her original diagnosis.
My mom’s acute myeloid leukemia diagnosis
My mom started feeling sick a few days before Hurricane Harvey hit in 2017.
I took her to an urgent care clinic near our homes in Kingwood, a suburb about 30 miles northeast of Houston. The doctors there diagnosed her with pneumonia. They prescribed medicine and bedrest, so we went back to our respective houses to wait out the storm.
Fortunately, neither of our homes flooded. But even after the high water receded, my mom was still not doing well. We made an appointment with her regular doctor. He thought she had pneumonia, too, but drew some blood just to be sure.
By the time we got home that afternoon, my mom’s doctor was frantically trying to reach us. Her white blood cell count was 200 times higher than it was supposed to be. It was possible the results were just a fluke, her doctor said, but if the test was accurate, her condition was very, very serious. She needed to get to an emergency room right away and have her blood retested immediately.
Doctors at a nearby hospital drew my mom's blood again and diagnosed her with leukemia. They weren’t sure exactly what type it was, though, so they transferred her to MD Anderson. I wouldn’t have wanted her to go anywhere else.
My mom’s acute myeloid leukemia treatment
At MD Anderson, we learned that my mom had acute myeloid leukemia, a particularly aggressive form of cancer. Her doctors were able to stabilize her quickly and enrolled her in a targeted therapy clinical trial to take advantage of a particular genetic mutation (IDH2) that she had. The cancer responded really well.
Still, the first six months of her treatment were rough. Two days out of every week, my mom had to go to the hospital to have her blood drawn. The results would determine what type of blood product replacements she needed. Then, she’d have multiple transfusions, often on top of her leukemia treatments. Frequently, she’d be at the hospital all day. At one point, she couldn’t walk due to her body’s reaction to the cancer and its treatment.
But my mom was so strong and determined to beat cancer. She hung in there and kept on going. To this day, I am in awe of her strength. Eventually, she regained all of her abilities. And by January 2018, she was in remission. She stayed in remission for four years.
MD Anderson offers unparalleled care and support
For me, the hardest part of my mom’s cancer diagnosis was having to make difficult decisions at the end of her life. As her primary caregiver, it was my job to decide when to keep my mom on life support — and later, when to take her off of it. But the level of care she received at MD Anderson was unparalleled.
Dr. Courtney DiNardo was the leukemia specialist and leader of the first clinical trial, who took over my mom’s care at MD Anderson after her original doctor moved out of state. We loved her just as much as we loved him. And my mom frequently referred to her first doctor as “my angel.”
Dr. DiNardo’s nurses, Jennifer Smolcich and Sharon Mattox, were amazing, too, and quickly became like family to my mom. They took great care to listen to everything she said. My mom even had favorite phlebotomists and administrative staff, such as patient access specialist Cedrick Fountain.
Dr. David Santos was the amazing surgeon who removed my mom’s gallbladder. We’d been reluctant to take that step because her blood counts were so low. We worried she’d either bleed out on the operating table or get an infection that would kill her. As it turned out, we didn’t really have a choice. The organ was already infected — and rotting inside of her. So, our options were to either leave it alone and let it keep poisoning her, or take it out and risk a slightly earlier death. It was a very dicey situation, but Dr. Santos did everything right. My mom survived the operation.
Dr. John Crommett, my mom’s critical care doctor, was only in my life for about a week. But he made the biggest impression. I spoke with him every day that last week of my mother’s life. I honestly don’t know what I would’ve done without him. Just by being a good listener, he made a horrible situation a million times better.
Why I personally support MD Anderson research
The clinical trial my mom joined kept her alive for five and a half years. That allowed her to meet and make memories with three of her youngest grandchildren: two of them were mine. I learned I was pregnant with my first child just three days before her initial diagnosis in 2017.
That’s one reason I was inspired to honor my mother’s memory by having gifts support Dr. DiNardo’s leukemia research. So far, I’ve only raised $200. But as someone who works in research, I know how important every dollar is. And I’m determined to raise more.
I also give blood at MD Anderson as often as I can. The number of blood products my mom received during her treatment was truly astounding. I know I can never hope to replace everything she used, but I’ll do my best to replenish MD Anderson’s supplies. And I’ll encourage others to give at MD Anderson Blood Bank as well.
There’s always hope
When my mother’s leukemia relapsed last year, we knew her options were limited. Her first MD Anderson doctor had been pretty upfront about that. He said that if my mom ever stopped responding to the targeted therapy, there might not be a good second option.
Today, I believe he was both right and wrong. New research is always underway, and other treatments and clinical trials become available that improve our standard of care. My mother joined two more clinical trials before she died. Even though those didn’t work out for her, without the promise of clinical trials , she wouldn’t have had any hope at all.