This is the thirty-first of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
There are no photos of Donna today, as there is no Donna today. Donna died on October 19, 2009. She was four years, two months, four weeks, and one day old.
The Bubble we had enjoyed permanently popped one afternoon when Donna woke from her nap. When she reached to take my hand, I noticed her left arm was trembling, shaking gently. A couple of days later her head started tilting to the left. A couple days after that her balance changed. Then her walking.
The signs were unmistakable. The terror and doom consumed more and more of my thoughts. The reality of what was happening to Donna was indisputable. She would die and it would be soon. Days? Weeks? No one knew.
Donna continued in pre-school during this time. I fretted so as I dropped her off in the morning. I asked her if she would feel more comfortable if I stayed with her, that I could help her if she needed it. “No, Mama. If I need help, I will ask a teacher.” Grit and grace in equal, lovely portions. I would wait anxiously for her at the end of the morning when the parents gathered to pick up their kids. Each day, her teacher reported Donna did beautifully, that she had not needed any help. She played outside, and climbed the stairs to the library, and showed no signs of distress. That was Donna. Strong as an ox, yet delicate as a flower. That was her beauty, her shine.
On a Thursday night, stalling as she did so well (“My Little Stallina” is what her Daddy called her), Donna gave her Dad and I a concert. She stood on a step stool and sang “I’m a Little Teapot,” “Twinkle, Twinkle Little Star,” and “Row Row Row Your Boat.” She sang each song three times. She was beautiful. And so happy.
The next morning Donna woke and was different: moody, clingy, listless. The next day, after a trip to the zoo and a nap, Donna woke with a headache. The hospice nurse came immediately and started morphine with good effect. Donna asked for macaroni and cheese, “the good kind, Mama,” and I ran to Noodles and Co. for her. God bless the stranger who sat next to me as I waited for the order. Donna ate well and promptly threw it all up, but felt great. She had a bath and played, played, played. She was loud and I worried her singing would wake up Mary Tyler Son in the room next door, but I didn’t care.
We had another trip to the zoo that week, Donna bundled and her cheeks covered in her Auntie’s deep pink lipstick. She rode the carousel and was happy. On the night before my birthday, Donna baked me a cake. She used the heart shaped pans. It was delicious. A couple days after that, Donna spoke her last words. “Mama, Mama, Mama,” she called out to me. Her tone was anguished. I held that girl tight and close for the last time.
Dear friends made a pumpkin memorial to Donna on our front lawn during her vigil. There were dozens and dozens of pumpkins with written messages of love and support for us and jack-o-lanterns that lit the night with their warm, comforting glow. Each night someone appeared to light them and after Donna died they took them away for us.
After a few more days of deep sleep, Donna died. She had been receiving morphine to manage her pain and she appeared comfortable. No grimacing, no furrowed brows. On the fourth night of Donna’s deep sleep, her Dad and I fell asleep at midnight. At 2 a.m., when the medication alarm went off, Mary Tyler Dad woke and Donna was gone. He gently touched me, my eyes opened to Donna next to me, and it was over.
In the end, Donna knew she would die. Unlike me, she had the courage to bring it up so we could acknowledge it. At the suggestion of a neuropsychologist at Children’s Memorial, we bought a book called, Lifetimes: A Beautiful Way to Explain Life and Death to Children by Bryan Mellonie and Robert R. Ingpen. God bless these two men. If I had to look at one more suggested book about burying a cat or a fly-a-way balloon to use as a tool with Donna about her death, I would have hurt someone.
We put the book into circulation, and Donna was fascinated with it. We all were. The illustrations are gorgeous and do not attempt to make death pretty with balloons and rainbows. Death is not pretty. It is real and can be beautiful, but it is not pretty. As with everything, Donna took the book in and understood it more deeply than we could have imagined.
One day, on the drive to her school, Donna asked me from the backseat who we knew that was dead. She told me she would miss me when she died and she worried she would be sad and lonely. Then she told me that bones didn’t walk. Bones had become a symbol of death for her because of dinosaurs. She was fascinated with them. She knew that my Mom, her Baba, was now bones. I agreed with her and told her that bones needed muscles and skin to walk. She calmly told me that bones did not talk either. I told her that I didn’t think bones needed words. I told her that many folks believed you come together with the people you love after you die. I told her I hoped I would be with Baba after I died. Driving, tears streaming down my face, I could not tell my daughter that I hoped I would see her again after she died. I couldn’t do it. Fail.
Five days later, at bedtime reading books, out of the blue Donna said to me, “Why am I worried I’m dying?” She said it twice in a row. “Why am I worried I’m dying?” We talked about her question and quietly, I agreed with her. I told Donna I thought she would die soon, too. Her tone of voice, both of our voices, were calmer than one would think in that kind of conversation. We talked about how sad her dying made us. We talked about heaven and that many, many people believed it was a place of reunion and peace. A few moments later, I asked Donna why she thought she was dying, did she feel differently?, or did she hear someone say those words to her? Donna told me she was hearing things her body was telling her. I was comforted by how relaxed she was in our conversation. She was not overly afraid, but honest and curious and open. I turned out the lights and we snuggled. Donna asked me what my favorite part of the day had been. “Our talk just now,” I said. “Me, too,” she said.
Fifteen days later, Donna died.
Row, row, row your boats, dear readers, gently down those streams, because merrily, merrily, merrily, folks, our lives are but a dream.