Over the Years

My daughter was diagnosed with an Ependymoma brain tumor in 1986 at the age of 19 months. Our journey began when we realized that we had become concerned about her falling. For example, we were staying at a lodge with a large stone fi replace and both my husband and myself were careful to cover the area with pillows from the couch. Then there were the sporadic “jokes” from strangers who would say, “what has she been drinking?” as she walked past with a slight stagger in her gait. We took her to the pediatrician who listened to my concerns and then watched her walk in a narrow hallway. Surprisingly, she didn’t seem to stagger and she walked very “toddler–like” down the hall. We learned later that this tighter area would help compensate for my daughter’s lack of balance. We were told that she simply needed to develop her gross motor skill more and that she would outgrow it and I was simply an over–concerned first time mom. Unfortunately, the pediatrician failed to recall that my daughter had been walking since she was 11 ½ months old and the current lack of coordination and balance was actually a regression in her motor skills. This negative change in her abilities should have been seen as a red flag.

I still couldn’t shake the nagging feeling that something was wrong. Since our doctor had been unresponsive to my concerns, I made an appointment with another doctor. I told my husband that if the new doctor is just as unconcerned about our daughter’s gross motor skills, then I would let it go. The new doctor refrained from making judgments about my parenting skills and concerns. She listened carefully as I described the situation. She examined my daughter and watched her walk in the large hospital hallway. Her next step, one that our regular doctor failed to do, was to measure her head circumference. The measurement exceeded the 100–percentile mark. They were immediately concerned and ordered a CT scan right away. The diagnosis was a brain tumor and due to the size and location, they didn’t expect her to live. We called family and said our beautiful little girl was very sick and was going to die.

As a parent, we often know our children well. This can be both a help and a hindrance. Since the changes in our daughters walking skills declined gradually over several months, it was difficult for us to see just how far she had declined. We have a video of our daughter taken just a few weeks before her diagnosis. I have only watched it a couple of times because it is difficult to see. It is painfully obvious that there is something terribly wrong. It does make me question our parenting and ability to know what is best for our child’s well being. Add to that a doctor that made you feel very inadequate as a parent, it was hard to have the confidence to question the doctor. But, that small quiet voice kept getting louder, demanding to be heard.

My daughter will be 29 years old this August. One thing I remember very clearly during that first year is that I just wanted to know that somewhere there was another child who survived to live a happy, healthy life. At that time, it was difficult to find. During those first few months after our diagnosis, we met three other families who had daughters with brain tumors, Nina, Larissa and Wendy. My daughter is the only one still alive. We thank God for the gift of life He gave to our daughter but are full of sorrow for the families that suffered such a difficult loss. There were many miracles and many challenges along the way regarding her recovery. I believe our story can give hope to families as they struggle with this terrible diagnosis.

One of our first miracles was the fact that the neurosurgeons were able to remove all visible evidence of the tumor. This is rarely the case since removing the tumor can also damage healthy areas of...