lymphoma, myelodysplastic syndromes (MDS) / acute myeloid leukemia (AML)
It was 2009. Obama had just been sworn in as president, captain Sully successfully landed United Airlines flight 1549 on the Hudson River during an aircraft malfunction, and all souls on board survived.
I just found out I was pregnant with my second child. A pregnancy I carefully planned around my mom’s nursing school graduation. You see when I had my first child, I thought all I needed was my husband and that book, What to Expect When Expecting. I quickly changed my tune when my son arrived and begged my mom to come over immediately and hopefully not leave until he turned 18. Life was going really well. Until my mom got this cold that wouldn’t go away.
We figured she caught something at the infectious disease hospital where she was doing her clinicals. Her doctor took some blood and admitted her to the hospital. She told me to stay away, she didn’t want me to catch what she had with my pregnancy. I nervously sat on the sidelines until the phone call came. She said, “They said I have lymphoma.” “What in the world is that?” “It’s cancer.”
The room spun, my hands went numb, and I don’t even remember ending the call and stepping into the elevator at Methodist Hospital. But suddenly I was in the elevator, and my dad arrived at the same time. I waited for him to tell me she was going to be okay, but he never did. I often think about that elevator ride, and I know that’s the exact moment when I truly became an adult. No safety net. I was in a free fall.
As it turned out, her lymphoma was stage 4, and we fought like hell to get her to the other side. She shrank into a tiny, frail woman, and the baby inside me kept growing and giving her something to live for. “I’m going to hold him,” she told all her doctors. And she did. She held him first.
She went into remission, and I felt the pressure of borrowed time. I found The Leukemia & Lymphoma Society (LLS) and poured my fear into raising dollars, dollars that could reach the hands of scientists who could give her a chance if it came back.
I made sure we celebrated every event, ate the cake, and rang every bell we could find. I took her all over the world; we visited 28 countries. We were getting ready to pass the 10-year mark of her being cured when she really wasn’t feeling well. I said, “Let’s just go to the hospital, you’ve met your deductible. They can zip you through the machines and run all the tests. We can be on our way again.”
After a CT scan, the ER doctor came in and said her lymphoma was back, and it had come back with a vengeance.
This is part of the story where LLS comes in again. In the 10 years, we had been living a beautiful life while doctors and researchers were hard at work. This time they had a new treatment that happens to be funded by LLS.
I remember my mom looking at me and telling me that we lived such a full and beautiful life together. I cried, agreed, and said, “Let’s try and live more together.” I wasn’t ready for the sun to set on us. We fought again and came out on the other side. We took a few more trips around the world and walked the path less traveled. We showed strangers the kindness in our hearts, and they shared their beautiful souls with us.
Trying to fight cancer feels like trying to outrun a bear. Every time you look behind you, there are intense brown eyes waiting to make you its prey. Two and a half years after my mom’s bone marrow transplant, the bear caught us. The bone marrow biopsy said myelodysplastic syndrome (MDS). I was not even aware that was an option. But I looked it up on the LLS website, and sure enough, it is. What I learned was MDS turns into acute myeloid leukemia (AML), and I learned from you all how crushing AML is through the BEAT AML Campaign. Over the past 13 years of my involvement, I have had the opportunity to listen to the brightest doctors in the world speak to us about research and all things oncology. One thing echoed in my head ― stop, get the genetic report.
I asked the oncologist if she ordered the genetic report as the pathologist suggested in the BMB report. She confirmed she did. I kept checking with my mom to see if the report had come into the portal. I wanted to know which chromosome broke bad. “No, I haven’t seen a thing,” she said.
The weeks passed. Nothing. “Nope, still isn’t in my portal.”
I kept hearing her tell people she had leukemia, and I would say, “YOU DO NOT! You have pre-leukemia, it is MDS.” “Oh yeah, that’s right,” she said.
What in the world is wrong with this woman? Does she want to have Leukemia?
I told her I was joining her for her next oncology appointment. They started her on a drug called Vidaza. The oncologist said, “Yes, the report is here.” Apparently one of her #7 chromosomes disappeared, and three got extra material on it. I got a copy of the report; it was still hot from the printer. I held it and started to read.
My mom said, “So, is it making you nervous yet?” “Well, a little.” “Yeah, that is why I didn’t say anything to you, I didn’t want to ruin your Christmas.” My hands lowered slowly to my lap, and I looked at her.
Oh God, what else is in this report? My eyes read faster. The pages were now cool in my hands, and there it was in bold letters.
Final comprehensive diagnosis ― AML with MECOM rearrangement.
Terror flooded me. The report said words like “prognosis poor.” It confirmed that the drugs that saved her are now likely going to kill her. I stood up and went back to the oncologist’s nurse and said I needed to see her again. I asked her if my mom had AML, and she said no. I asked her to please tell me why this paper said she did based on the genetic mutations. She explained that based on the newest version of the WHO publication, she would have AML.
I said, “So, you are telling me based on the latest breaking medical information, my mom would have AML, but because the ink has not dried, we are calling it MDS.”
She didn’t really have an answer for me. I pressed further and asked, ”You are 100% certain that the Vidaza is the best course of treatment for her?” She paused and said the genetic mutations were very concerning. She told me she would liaise with her transplant doctor and call me that evening. He told her that they needed to give the Vidaza with Venclexta®, which as it turns out was funded by LLS.
To my beautiful friends at LLS, I will never be able to thank you for what you have given me, a place to turn my fear into a passion. You educated me on things like that genetic report, you advocate, double check, and you funded the next drug my mother needed.
I fear we are in the final chapter of this story. I would love to be wrong. Your work and dedication in the years before cancer became us allowed us to have the gift of life. Thank you for dedicating your lives to helping those of us who need it.
Story was written by daughter.