In Her Shoes: Seeing Both Sides of Cowden Syndrome

She sits across the car seat from me and smiles. It is 6:00 am and we are on our way to Arkansas Children's Hospital for an MRI. Hannah's first Cowden Syndrome related "bump" is on her brain. The physicians and I are watching closely for changes that could indicate cancer.

I ask, "Are you nervous?" Hannah says with her 6 year old lisp, "Why would I be nervous, I've had this (meaning the MRI) done three times before?" I smile back at her and confidently say, "you shouldn't sweetie, mom is just making sure."

She is too young to understand the mechanics behind the mass on her brain. Cancer is a foreign word she knows mainly from losing her grandmother to it last year. Much as when I was nine and diagnosed with dysgerminoma, she does not understand cancer could take her life.

I am sitting in my mom's shoes and Hannah in mine.

My mom did not have Cowden Syndrome. She did have a near constant state of cancer scares with me. Cowden Syndrome was not a known part of our lives until 2007. In spite of not having a name for the condition, my mom had the scares and my three cancer realities. The Cowden Syndrome was always there having been created at my conception.

We arrive at the hospital twenty minutes early. Hannah knows the routine. She picks out The Tigger Movie while various medical professionals stop by to ask questions. Hannah will be given anesthesia for her MRI so we see several people. I rack my brain trying to remember everything the surgeon and anesthesiologist may need to know. I am physically trembling but focusing elsewhere. It will not help my little girl for me to fall apart.

All around are triggers of medical horrors I went through as well. The hospital smell, the warm blankets, the white coats. I stifle these feelings and focus on my daughter. She watches the movie and laughs.

This MRI procedure is slightly different. Hannah is given a medication up her nose this time and it makes her sleepy. She is annoyed at her movie being interrupted and says her nose is running. Twenty minutes later she is near asleep.

Hannah is sent to the preparation area. Her dad and I go with her. As she is laid on the table, her nervousness begins to show. I see her bottom lip poke out and a tear emerge. My husband steps to the side and allows me to speak with her. I am wearing my mom's shoes and my own at this point. I tell my young daughter she will be fine, she has done this before, and it will not be done again for a long time. The me in her shoes would have simply cried with her. I remember my mom being both strong and crying when I was nervous over anesthesia. My mom's tears always made me want to stop crying but the nerves remained raw. I did not want her going to sleep seeing me upset.

As she drifts into unconsciousness, I throw all the cards out on the table. I add "mommy has done this many, many times and do you see she is fine?" Hannah nods sleepily and her tears stop. A few minutes later she is asleep for the procedure.

When I was wearing Hannah's shoes, I did not understand the painful wait between procedure and test results. Being in my mom's shoes, I know it intimately. We are fortunate in not having to wait long for results.

As we wait in the physician's office, the neuropsychologist who diagnosed Hannah's executive functioning deficit visits and speaks with us. I think to myself, "just bring the doctor in already." A few minutes after I thought this, one of the main neurosurgeons briefly stops by to say, "It looks good. We don't know what the mass is but if it isn't causing problems or growing I think we should wait on biopsy."

The weight off my shoulders is lifted as I put my head down to shed a tear. I know the feeling my mom must have had when she was told my first dysgerminoma case had not spread. I saw mom cry from happiness when we were told there was no metastasis. I also recognize the cancer came back six years later. Fear is never completely reconciled with Cowden Syndrome and/or cancer.

Although in similar shoes, Hannah is not me just as I am not my mom. There is no certainty she has cancer now or ever will. The only certainty is her fears as she ages and is better able to understand cancer. For now there is no fear for her, and I will let her revel in it.