The night before we checked into the hospital for port implant surgery and first round of chemo, our daughter, Mary Tipton, asked if she could sleep in our bed. Of course. Absolutely. Once we were tucked under the covers she turned to me and said, “Mama, I feel like I am too little for this to happen to me.” She was terrified of what she was about to endure.
This was not a moment we were prepared for. I had thought about how to help her when she lost a soccer game or if she felt left out at school or how to comfort her when a boy breaks her heart for the first time. But, this scenario… this is not in the baby books. It is a parent’s worst nightmare come to life.
The months of treatment took a brutal physical toll on MT. She lost her hair and her appetite. The skin on her joints cracked and bled. The horrible side effects that the oncology team discussed with us happened. They were listed, plain as day, on the Treatment Consent Forms. So, at least we had a heads up for the physical damage. We knew it was coming.
But, the list of potential side effects did not include the emotional trauma. No mention of PTSD, anxiety and insomnia on the Cisplatin warning labels. Survivor guilt, depression and crippling fear? Not on the bags of Bleomycin and Etoposide that were pumped into her little 8 year old body.
How do you comfort a child when she loses her hair? How does that feel for her? Why, oh, why do other children make cruel comments to a bald little girl? And how to help her recover from that? Does she worry about dying as much as we worry about losing her? Does she feel panic every time she has an ache or pain? Will she ever sleep well again?
As much as we tried to find the right words and ways to comfort her, we could see Mary Tipton was struggling with her emotions. She was withdrawn and reluctant to be around anyone other than family. I remembered reading about the counseling services provided by CURE and reached out for help. Mary Tipton was, frankly, not excited at the prospect of going to yet another appointment.
Trying to respect her privacy, we did not ask MT too many questions about her counseling visits. But, we could sense the relief in her. She had a safe place to talk about cancer and its aftermath. She could talk to the counselor about how embarrassed she felt when a kid at the swimming pool kept asking her why her head was so white and so bald. And how she cried the day she rode the school bus home with a friend and the bus driver tried to make her sit on the “boy” side of the bus because of her short hair.
The counselor used play-based therapy methods to draw MT’s fears out into the open. Our little girl started smiling more and actually looked forward to her counseling days. She began to enjoy all the things she loved to do before cancer.
It is an incredibly difficult transition from the cocoon of cancer treatment back into “normal” life. There is no normal after childhood cancer, but that is what our daughter yearned for so desperately. Don’t get me wrong, MT knows she has been given the merciful blessing of survival, but it doesn’t come without its own set of challenges.
So many days she cried that she just wanted to be a normal kid. Why did cancer have to change everything? The counseling helped all of us understand how to help Mary Tipton adapt to this new, post-cancer, scanxiety-ridden, amazing gift of life. Counseling helped MT refocus on the positive and learn to carry on when faced with life outside the shelter of the hospital and constant companionship of her (admittedly) overprotective parents. There is joy to be had after cancer and counseling helped us find it.
Mary Tipton has physical scars from surgeries and treatment. The scars have faded a bit with time. The emotional scars, although she will carry them with her always, have begun to heal as well. We are so grateful to CURE for supporting our family throughout Mary Tipton’s diagnosis, treatment and recovery. Counseling support is an invaluable gift for families fighting childhood cancer and I encourage parents to reach out to CURE to find out how to get started!