My Lost Survivor

I can’t remember the exact words as I brought my 7–year–8–month–old daughter Ann to the university medical center late spring for a review of her brain surgery from March 1990, but the words were something like it was a remarkable 98% resection, then the team went on to say 75% was considered successful and they were surprised since the surgery was not done at a major medical facility. I explained to the team we had three neurosurgeons in our town from major facilities out of state who were very well regarded so I opted to stay in town for her surgery, but valued the university medical center’s recommendation for radiation treatment. The next decision I had to make was where. I not only had to consider my daughter, but my toddler that I had to drag everywhere through all this as I had no family nearby to help me. I opted for a 75–mile drive.

The radiation protocol was for eight weeks of hyperfractionated radiation. I would leave the house with the both kids by 7:30 a.m. and stay until 3:30 p.m. because there were two treatments a day around six hours apart. I had thoughts that I would be able to take the kids to the zoo or children’s museum in between treatments, but Ann was much too sick for that. We spent most of our day at the playroom in the cancer patient house next to the radiation facility. We eventually got a room at the cancer home.

Even before the radiation therapy, Ann became sick and would wake up every morning vomiting very much like she would before the tumor resection. This vomiting went on for almost two years after her surgery and radiation. We were bounced around between doctors and specialist then finally a pediatric neurologist was concerned about how thin and frail she was and prescribed a medication that goes by the generic name Cyproheptadine hoping it would help her appetite. Within a couple of days, much to my surprise, the medicine stopped the morning vomiting and she began to eat and regain some strength as she approached the age of ten.

Now that Ann was no longer showing the outward physical signs of being ill, her school didn’t think it was necessary to make accommodations for Special Education, or follow the recommendations made by a neuropsychologist’s report. I was told her educational performance was average for her age and grade level. The school did discover she could not hear in her left ear and sent home a note that demanded I seek medical attention. I explained to them her doctors were well aware of her perforation in her ear and decided they wanted more time to pass from the brain surgery before performing ear surgery.

There was one bright spot during her elementary school years. She had a teacher who went out of his way to make sure Ann was responding to what was being taught. Aware of her hearing deficit in her left ear and some of her cognitive deficits, he sat her in the classroom where she could hear at her best and placed her next to classmates who would not distract her. When she would forget to bring her homework home, he would stop by the house with it rather than write a disciplinary action against her. She responded so well to this teacher, she was one of a couple of students in her class that was sent to the countywide science competition. She thrived that year, but never again was she to have a professional teacher that made sure she got it!

When Ann was 11, the ear doctor decided it was time for her left ear perforation to be repaired and that would restore her hearing in that ear. She had the surgery, but the hearing was never restored.

Ann’s ability to learn was becoming more difficult. I pulled her out of traditional public school to home school her through public charter school. I wish I had another option as she didn’t always appreciate my...