My daughter was seven when I was diagnosed. Now she is eight. She is beautiful and my number-one motivation to live and stay strong as long as possible.
When Chris and I first received the terrible news from the surgeon at Sloan-Kettering that my cancer was inoperable (and we knew that meant a median life expectancy of about eight months), we were both too upset to talk to anyone without sobbing. My friend Alexis, who had taken notes during the consultation, found us a place to sit and cry, and helped us make the necessary phone calls to immediate family. We couldn’t imagine what we would say to our daughter, though.
From New York, we called our family therapist. He was great. He suggested that we speak truthfully with our daughter, but for now only discuss the present and the immediate future: Mommy Beth is very sick. She has something called cancer. The doctors are trying to help her.
He pointed out, very helpfully, that a seven-year-old has a limited sense of the future. If we told her I was dying, no matter what we said, she would think it was happening tomorrow or the next day, and be unnecessarily terrified. She wouldn’t have a good sense of what “eight months” even means, let alone a median survival time.
So we told her I was very sick with cancer, and getting help from the doctors. We tried to do what they say you should do when talking with small children about sex: answer all her questions, but only answer the questions she was actually asking. She wanted to know if it hurt, and if I had to get a shot. She wanted to know if we took a taxi in New York — she likes taxis. That was about it.
The school counselor sent home a lovely book from the American Cancer Society, Mom and the Polka Dot Boo Boo: http://acs.bookstore.ipgbook.com/mom-and-the-polka-dot-boo-boo-products-9780944235874.php?page_id=32&pid=ACN. It’s about early-stage breast cancer, not advanced lung cancer (and breast cancer’s excellent five-year-survival rate definitely shows), but we found it useful for explaining what cancer is. It communicated that after treatment, Mom would be well enough to play again – and we thought that I probably would get well enough to play again, even if not permanently.
I brought her along to the Hamilton cancer center one day. I showed her the chairs where I would sit for treatment. I showed her the conference room with the pretty fish tank. Dr. Saraiya was out that day, but she met the research nurse and some of the other nurses. I think she was less frightened and confused knowing where I would be on treatment days and what it looked like.
Since then, our conversations have evolved. She’s getting a little older. Our beloved cat died, which brought death to the forefront of her mind. Ironically, when I learned I was ROS-1 positive and started taking crizotinib, she overheard a lot more scary stuff around the house that confused her. (We were feeling optimistic and talked freely with each other and visitors about how this latest news changed my outlook, but all she knew was that something serious and intense was happening, and life and death were coming up a lot in adult conversations.) I sat down with her for another talk: I told her that people die from cancer. I told her that the doctors thought the medicine I was getting in New Jersey wasn’t helping me enough, and that they wanted me to go to New York for better medicine. I told her I wanted to stay alive and be with her as long as possible.
She wanted to know who would take care of her if I died. I told her Mommy Chris would take care of her. Then she wanted to know who would take care of her if Mommy Chris died. I told her I would. Then she wanted to know who would take care of her if we both died. I told her about the close family friend who has agreed to take Nevaeh if anything happens to both of us. She said she didn’t want me to die, or Mommy Chris, or the dog. I said I didn’t want that either, and that I was going to do everything I could to stay well.
It doesn’t come up as often now. I feel more hopeful these days that I may be here for her for at least a few more years – and healthy enough to make her favorite meals, help with her homework, and play.