On March 8, 2012, our world changed forever.
I was at work when I got the call from my husband that I was to meet him and Kayleen at Children’s Hospital in Minneapolis. He said they found markers for leukemia in her blood work after testing for mononucleosis. Our oncologist was optimistic saying it was still “highly curable.”
What I didn’t know until much later is that acute lymphoblastic leukemia (ALL) has a cure rate of more than 90 percent for children. For children with acute myeloid leukemia, which is what she had, that drops to less than 60 percent - a coin flip. Treatment started the next day and within the week, she had the flu. Soon we were in the pediatric intensive care unit with her intubated and fighting for her life. The immune system is completely wiped out, over and over, in an effort to rid the bone marrow of the cancer. So our baby was fighting cancer and the flu without any immune system left.
Kayleen had four rounds of chemo, in a hospital room for a month at a time. Our older daughter was 12, and needed to be going to school. We wound up as a split family. But in August, Kayleen achieved remission and we went about re-normalizing our family. Kayleen started the third grade, which made her very happy. She loved school and she loved her friends. Giving up those two things were among the hardest parts of the treatment for her.
In mid December, she relapsed. We were looking at stronger chemo, months away from home, and grasping desperately for a cure. A bone marrow transplant was her only hope at that point. However, she never got there. There was no treatment that would rid her body of this monster. I will never forget telling her that we were going home from the hospital, that leukemia would take her life. She was sitting on her bed in the hospital, munching on cotton candy, a favorite treat, that her nurse had brought for her. As the words sunk in, she wept. We all did.
On May 3, 2013 Kayleen died.
I had such hope when Kayleen started chemo. I was sure she would be treated and would go on with her life. I am glad I didn’t know her true odds as we went through treatment. I had refused to read statistics, believing all along that my child was not a number. I had to believe she had a 100% chance of survival. We have lost a beautiful, spunky, wonderful child. We also lost her children, and in fact, we lost the life we thought we would have. Nothing will ever be the same again. And the world lost a very smart and determined girl who could have done great things with her life.