It was the middle of May. My son and his wife had just had their first baby — my first grandchild — on Mother's Day. I hadn’t been feeling well and got dizzy every time I went to stand up. Finally I called my doctor, who recommended going to an immediate care facility to have my ears flushed out. I walked in and told them, “I think I have vertigo.” Well, “self-diagnosing” was a mistake, because all they did was flush my ears.
The next week, on May 30, I got up to take my youngest daughter to school but all of a sudden I didn’t feel as if I could drive. I laid my head down on the counter and passed out. My older daughter called 911, and when the ambulance arrived, they discovered my blood pressure was so low that they needed to take me to the hospital.
It all happened so quickly. The emergency room doctor found out my white blood cell count was really high. Then they retested it to be sure. He came in and said, “If you were my mother, my sister, my daughter, I would be sending you to Roswell right now.”
I was at Roswell from May 30 to July 2. The diagnosis was acute lymphoblastic leukemia (ALL).
One of the first things I asked was, “Is this a death sentence?” And then there was so much information to absorb, I didn’t know how I was going to retain it all. Luckily, I have a big family and they were all around waiting for results and listening. Later that day, when the shock started to wear off, Dr. James Thompson came in to explain what I should expect.
Thinking back to all our emotions those first few days, initially there was a lot of sadness and anxiety. None of us knew anything about ALL. And then there was just a lot of pulling together. In two days my family had "DiLeo Strong" shirts made and were giving them to all the nurses on the floor. I’m so appreciative of my family. Throughout all of this, I was never alone. They took shifts coming to see me, and someone always spent the night. At first I was overwhelmed with sadness. But then I was overwhelmed with happiness, because I had them with me.
The recommended treatment plan was six weeks of chemotherapy. I don’t even remember what kind of chemo it was. I just trusted the team. Getting chemo wasn’t as bad for me as it is for half the people I hear about. Toward the middle of the six weeks, Dr. Eunice Wang explained that if I stopped treatment after my fourth round, they would consider a bone marrow transplant (BMT), which could lower the chance of the cancer coming back, but it was my decision. I was scared. I didn’t know what to do.
In July we sought a second opinion at another National Cancer Institute-designated comprehensive cancer center in a different state. Dr. Wang was very supportive and emphasized the importance of seeking multiple expert opinions. The other cancer center fully agreed with Dr. Wang’s recommendation, so we headed back to Roswell to continue treatment.
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The BMT coordinator, Patty Lipka, explained from beginning to end what the transplant process would be like. Because we could not find a donor who was an identical match, we decided to move forward with a haplo (haploidentical transplant), meaning the blood-forming stem cells I received would be a half match. I have four children — ages 12, 22, 25 and 27 — and the oldest three were all tested and came back better than a half-match. However, my 25-year-old son shares my blood type, so he was the winner!
My BMT was October 30 (my "new birthday," as they call it), and afterward there was no evidence of graft-versus-host disease. I was very lucky. By the grace of God I was just lucky. Every day I got up and walked my mile, even when I didn’t feel like it. The clinical team put some healthy fear in me and got me moving! Plus, I had a grandson I had to get home to. I felt I was losing so much time. He’s now nine months old, but I feel like I lost that early babiness. It was worth it, though, because I get to be here for his whole life now, and I am so looking forward to it.
I’m definitely different now. We all are. I appreciate the smaller things and take everything a little bit at a time. Cancer makes you realize you can only do so much at once, and you should just slow down.
I also cannot say enough about how much my family and friends have done for me. My 12-year-old daughter had a birthday throughout all of this, and other family members stepped in to make things special when I couldn’t. My oldest daughter has been my rock. My husband is so wonderful and has been there through this whole experience. If it wasn't for him I don't think I would have made it through. I have also had multiple friends come in to the Roswell Park Donor Center to donate platelets for me. What makes me even happier is that they are continuing to do this even now that I am not the one who needs platelets. They can’t help me in that way, but they want to help someone else. I know it makes a difference.
I can’t stress how grateful I am for the team at Roswell – the Leukemia and BMT centers are both wonderful. I am down to appointments every other week. My scans are great — even though the DNA in my blood is now my son's, so tests indicate I'm a male! There is no evidence of cancer. And on February 7, it was finally time to ring the bell!
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.