Mother of two tells her transplant story

Aug. 9, 2011 – Sanela McKinney was diagnosed with chronic myelogenous leukemia in 2003. She endured years of treatment that ultimately did not stop her disease. In May 2010, she became one of the more than 5,000 patients who have undergone bone marrow or stem cell transplantation at the Siteman Cancer Center and Barnes-Jewish Hospital.

Although McKinney’s donor was not an optimal match, Washington University transplant physician John DiPersio, MD, PhD, was able to manipulate the donated cells through a clinical study to minimize complications. Today, McKinney is cancer-free. In her own words, the wife and mother of two shares her story below.

I came to the United States back in 2000. I was a Bosnian refugee. I got here with a dream for a better future, not even imagining what was waiting for me. As a child, I was never sick, not even with chicken pox. I thought I was the lucky one to have survived the war and genocide.

One day in 2003, I got sick to my stomach. My friend took me to the hospital. They did a lot of testing, but they couldn’t find anything. I was in so much pain. They didn’t know what to do except give me pain medication.

One of the doctors eventually came in and told me they were going to draw some more blood and perform one more test. He never said what kind of test he had in mind. After a couple of hours, he came back to the room, and my whole life fell apart. He told me the worst possible thing. He said, “You have leukemia.” I looked at him and couldn’t believe my ears.

I can’t describe how I felt at that moment. I wanted to jump out of that bed and run away screaming. If my daughter hadn’t been in the room, I don’t know how I would have reacted. I turned my head away from the doctor. Tears started falling down my face. I looked at my daughter, and at the same second, I swore to myself that I was not going to give up. I wiped my cheeks and told her I loved her very much and I wouldn’t allow leukemia to get me down.

At first, I had an oncologist who was giving me oral chemotherapy, but I had a lot of issues taking the high-dose medicine. That’s how Dr. John DiPersio and his crew came into the picture. I meet Dr. DiPersio back in 2004. From the moment I walked in his office, I knew I could rely on his team. I felt peace, love, hope and encouragement. They had a lot of patience with me. I was on so many different oral medicines, and each time I had problem, Dr. DiPersio was ready to try something new. He gave me hope. He never ever let me down. He was always ready to take on a new challenge, and I was so thankful for that.

From the beginning of my journey with Dr. DiPersio, he told me my very last chance would be a transplant. Everything was going well until a couple of years ago, when the treatments stopped working. I was scared because I didn’t have any relatives in the United States who could serve as a transplant donor. But Dr. DiPersio assured me that he would find someone for me. He told me about the unrelated donor program. I was scared for my family, and the decision was very difficult.

My husband was positive from the beginning. He tried to hide it from me that he was scared. He never let me see him cry or worry. One day after my visit with Dr. DiPersio, I was receiving an IV infusion. Across from me was a very beautiful girl. We started talking, and she told me that they were trying to get her white blood cell counts up so they could put her on the list for a transplant. At that second, I knew I was ready. I looked at my husband, and he knew. He stood up and hugged me and told me that he was going to be there for me. We walked out that night from hospital knowing we had to do this.

The next day, I called Dr. DiPersio’s office, and I told them I was ready. They were very happy for me and told me they would be there each step of the way. They started searching for a donor. The search wasn’t long. After a few months, they told me they found a match. It was time for me to get emotionally ready.

The hardest thing for me was to be separated from my family. It was very difficult. I will never forget the day I went to the hospital. We got up early and started getting ready. I was trying not to cry. When we got ready to leave, I kissed my kids and hid my face. As I ran out, I told them I would be back soon and that I loved them very much.

My first week in the hospital was very busy – radiation, chemotherapy, meeting new nurses. Everything was moving so fast. Everyone was so helpful. They tried to cheer me up. They never opened my door without a smile on their face. From the cleaning lady to the doctors, they were all so very sweet. I met so many wonderful people and even started friendships with a lot of the nurses.

I had a lot of visits from my family. They tried to cheer me up, even when I lost my hair. My youngest was 5 at the time, and she drew pictures. One of them really stands out in my memory. She drew a picture of me standing next to my bed, hooked up for my chemo with a smile on my face. Underneath she wrote, “Mom, you are so pretty.” I never let my kids see me in pain. I always tried to smile when they were around.

The first two weeks in the hospital were really tough and hard on my body. I lost my hair and a lot of weight, and there was a time when I couldn’t get up from the bed. But with the help of my family, friends and the hospital staff, it was easier. When my big day arrived, I was scared. Finally, it was time for my transplant. My husband was next to me and so was my dearest new friend, Theresa, my nurse. The entire process lasted around 45 minutes. My husband was very cheerful. He tried to make laugh and told me jokes. He told me this was like a new beginning of our life.

After a couple more weeks in the hospital, I was finally released. I was there for 31 days. Even though I was there for so long, time flew by so fast. Dr. DiPersio visited me at least three or four times a week. He was always trying to make me feel good and comfortable. I knew he really cared about me and my progress.

After I was released from the hospital, my first day at home was like dream come true. I couldn’t believe how much my kids had grown and how much they missed me. I was very happy. I was trying to do my best, but my body was very weak. It was very tough to get back to normal. My family helped me each step of the way. My mother-in-law played a big role by taking care of my youngest one. And my mom came to visit. I hadn’t seen her for almost eight years. I tried to look tough in front of her so she wouldn’t see me in pain, but it was hard to cover it up – she knew me too well.

With all the complications after my transplant, I spent more time in the hospital than at home. I missed so much of my life in just one year. My little one started kindergarten, and I wasn’t there for her on her first day of school. My oldest started high school, and for the first time, I missed her first day of school, too. But they made me really proud. They are good students. I never have had any issues with them.

And now, a year after my transplant, I am leukemia-free! I’m still trying to get back to normal, which is very hard because I don’t know what normal is anymore. I feel great when I can accomplish something, when my kids tell me I look great or when my husband kisses me and tells me, “We did it, honey.” I still fear that the leukemia will come back. But I have faith in Dr. DiPersio and his staff. I know if I have to go through this again, I will do it with his staff because I trust them with my life.

What can I say about my doctor and his team? How can you say thank you to someone who saved your life? I try to say it every time I see them, but still it’s not enough. They worked together as one soul or person. If it wasn’t for them, who knows what or where I would be today. So thank you to the dear group of people who saved me.

Today what I look forward to most in my life is my family and friends, those people who helped me through my journey. I would also like to go back to school and finish my education so that I can help others. And I want to take a trip to my country with my new husband and kids so they can meet the rest of my family.