Things Are NOT Okay

Three doctors, each with good intentions, led us to believe that everything would be all right for our son Ben. In the fall of 2008, Ben presented with two documented seizures. We first saw a doctor from our pediatrician’s office. He told us not to worry since the basic neurological physical exam showed nothing, but recommended that we see a pediatric neurologist. He gave us a list of recommended doctors, and upon leaving the examining room the doctor then said, “Don’t worry. It’s not a brain tumor.”

We arranged a meeting with one of the pediatric neurologists who had been practicing for a long time and had worked in one of the well–respected children’s hospitals before going into private practice. She was attentive and kind and spent a couple hours with us as we went over Ben’s medical history. She examined Ben and found nothing unusual, in fact per her notes, “his neurological examination is better than normal.” She said that she would order an EEG and a brain MRI because he had two witnessed seizures. She asked us to look into family history to see if there was anyone with a history of seizures in either one of our families. Upon leaving she said not to worry that it was probably something that he would out grow.

After looking into family history, I found out that my older brother had had a couple of seizures when he was about twelve. He was put on phenobarbital. He eventually outgrew the seizures. Armed with this information I felt certain that Ben’s issues were hereditary. It was right before Christmas 2008, so I delayed on getting the EEG and brain MRI until January of that new year. The results of the EEG were unremarkable. The following week was the MRI. The day after the MRI, the receptionist at the neurologist’s office called. She requested that we come in the next day and asked that Ben not come to the appointment.

“I am sorry to tell you, but Ben has a brain tumor.” What? I couldn’t even concentrate on what the doctor was saying. Ben’s tumor was located in the right temporal lobe and extensively involved the right amygdala and right hippocampus.

I remember feeling completely overwhelmed with the process of choosing the individual who would ultimately perform brain surgery on our son. My husband and I interviewed three surgeons within a few weeks. On March 20 of 2009 Ben underwent surgery. The neurosurgeon was able to remove about 75 percent of the tumor. Two days after surgery Ben was released from the hospital. I remember that surreal feeling. My son had just had brain surgery and now we were going home with a list of medications and a schedule for administering the medications. I felt inept, unprepared, and yet relieved that my son had made it through; he could talk, he could move all his limbs and everything appeared to be normal. The only distinguishing feature that anything had happened was the six–inch scare on the side of his head.

The pathology report said it was a DNET tumor (Dysembryoplastic Neuroepithelial Tumor), one that should not re–grow or cause any further problems. I remember the audible sigh of relief that came out of my mouth. I remember the neurosurgeon’s words: “Ben will grow up to be a fi ne young man, and you will dance with him at his wedding.” I wanted to be happy, like I had won the lottery, but I had this feeling that there must be something more to this, it couldn’t be this easy.

In his second year at preschool Ben’s behavior problems became more obvious. When Ben became overwhelmed he would just sit down and not budge. Even when the director of the preschool asked us if there were any problems that were the result of his anti–seizure medication or his surgery, we said “no” because we were told “all should be good.” But all along there was that nagging feeling that not all was good in Ben’s world.

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