A Torn Heart

Camp Sunshine offers programs for children with cancer and their families. We have attended numerous toddler programs as well as support groups for parents during the past two years.

Every two weeks Camp Sunshine offers a music class for toddlers. We attend about every other time, due to our work schedules. I wish we could go every time, as Catherine really loves to participate in everything. She sings, dances, wiggles, and plays with the instruments. We have also come to know and treasure the children and their families who attend.

Recently Robby asked me to delete old pictures off the computer to make room for more. As I went through the photos, I saw pictures of two year's worth of music classes. It was such a journey of memories ... a painful journey.

I remember clearly the very first music class we attended in December of 2007. We were 8 months pregnant with Sabrina. Catherine had been diagnosed with a brain tumor just two weeks earlier. I was convinced that God was about to give me Sabrina because He was about to take Catherine. We were trying to force happiness and joy out of what we thought was the last few months of Catherine's life.

The first family we met at Camp Sunshine was the L's. We had an instant connection with them because they were 8 months pregnant with F when their two year old daughter, S, was diagnosed with a brain tumor. When we met them, S had had surgery and chemo and was in remission. They felt victorious and were full of hope. Meeting them made me think that little kids can survive cancer. That maybe there was a chance Catherine wasn't going to die.

Sadly, S relapsed on Easter morning of 2008. Her brain tumor returned and tormented her little body for almost a year. Her parents were fabulous advocates for her and fought her cancer every step of the way. Through more surgeries, more chemo, radiation. Tragically, S succumbed to her brain tumor in February 2009. She was four years old. She loved coloring, stickers, and Dora. I still cry when I hold my four year old and think of S. The thought of death taking Catherine from me, robbing me of the pleasure of holding Catherine in my lap, saddens me. I no longer fear her death, but it still saddens me.

In reviewing the pictures from the music classes Catherine has attended over the last two years, I got the chance to remember S. Not like she was during the last few months of her life, when the tumor was wreaking havoc on her body. But as she was when she still able to sing and dance. When she had a great time strumming the teacher's guitar. Waving the scarves around to the beat of the music. As time passes, S is becoming a memory. My mind forgets S's smiling, happy face.

In looking through those pictures, the tragedy of childhood cancer struck me. Years ago my grandfather died of a brain tumor. He was in his 80's. He had been married (then widowed, then remarried). He had children, grandchildren, and great-grandchildren. He had been to school, had a career. He had traveled. He had been active in numerous organizations, including serving as a volunteer firefighter for years. As sad as it was to see my grandfather died, it cannot compare to the death of a four year old. He was at the end of his life.

S was at the beginning of her life. Cancer robbed her of kindergarten. Riding a bicycle. Learning to read books by herself. Playing soccer on Saturday mornings. Field trips on the big yellow school bus. Fighting with her Mommy while shopping for clothes. Ice cream dates with her Daddy.

Because Catherine is doing so well and has been in remission for 14 months, I am starting to relax and believe that Catherine will be fine. That she will attend kindergarten ... middle school ... high school ... maybe even college. My fears for her death are subsiding as every month (post treatment, tumor gone) passes.

Periodically my mind wanders to Catherine's death, but those thoughts are only fleeting. I can return to my reality: to Catherine's giggling, wiggling ways. To her tickling her sister. To her asking me to read her Cinderella, again. To her wanting to wear the Tinkerbell socks. That is my reality.

Yet for so many parents I have come to know, their reality is completely different. They remember their children through pictures and videos, to keep the memories alive. They have empty laps. They have bedrooms which are no longer used. Toys and books sitting on a shelf. Younger siblings who may have little or no memory of their older siblings.

Last week Catherine and I went to music class at Camp Sunshine again. One of our dear friends, A, was there. She is 6 and her brain tumor has relapsed twice. She is on her third round of chemo. She has undergone surgery, a stem cell transplant, and proton radiation. Two months ago she caught a virus which took a serious toll on her body. She lost almost a third of her weight and was hospitalized to keep her hydrated and force nutrition into her body through IV's. I had not seen A since she caught this virus. I was stunned to see the physical deterioration A had endured. Just two months ago, she was dancing and laughing with the other kids. This time she could barely stand up. She could not vocalize. I am not certain how much of the music she could hear. She was pale and lethargic.

I pray earnestly that A will rebound. Her family are strong believers and rely heavily on their faith through this uncertain journey they are traveling.

But I am left with such a torn heart, torn between joy and sadness. Between gratitude and anger. I am so filled with thankfulness and happiness for Catherine. Yet I am so sad and angry for S and the other children who have "gained their angel wings." For A and the other children who are struggling just to live.

I have an innate need for the world to be fair. God has done His best over the last few years to teach me that the world is not fair. It isn't fair that Catherine was sick. That any of these kids were sick. That some get better, and some don't. It tears my heart apart to think of little kids being sick.

Even when Catherine just gets nausea and is leaning on the toilet, screaming and vomiting, my heart hurts. I try to hold her steady so she doesn't fall over. I wipe her face in between her retching, give her sips of water. It is so horrible to see your child sick. For some reason, I usually say "You're breaking my heart, Catherine." But, she is four and takes statements so literally. Whenever I tell her she is breaking my heart, she says, "It's OK Mommy, we'll get it fixed."

Yet for many parents, their hearts can't be fixed. They will always be broken. The death of a child will create a hole in their hearts forever.

On the flip side, the triumph of a child over cancer will create a grateful heart forever. I literally get giddy sometimes when Catherine bubbles over with energy. When she smiles. When she crawls onto my lap and wraps her arms around my neck. When she tells me to lie down in the grass with her to watch the clouds. When she tries to teach her sister the alphabet. These precious moments of innocent toddlerhood.