Weaning off steroids, beginning vision therapy

Sun 04/20/08
Today was Susan’s latest try at reducing her daily dose of prednisone from 10 mg to 7.5 mg. We visited with her neuro-oncologist at UCLA yesterday who agrees we can try to taper her off the steroid again. Dr. Nghiemphu prepared us for Susan to experience a slump at first, but to try to hang in there until her system stabilizes. Once she’s at 7.5 mg for two weeks, we can introduce 5 mg every other day.

Another reflection on this weekend’s conference at UCLA – no matter what, having a brain tumor is hard. Of course, someone in the end stages of a terminal disease is faced with the fact and the process of dying. It’s a heavy thing. Yet one woman there had a benign (non-cancerous) tumor, underwent successful surgery to remove it and is in good health a year later. But being diagnosed and treated for a brain tumor rattled her deeply. She said she can’t get over it. Some members of her family have grown frustrated because she’s still so affected; but she can’t help it. Then one man who was there is a ten-year glioblastoma survivor, an amazing thing since so few GBM patients survive after just five years. He said his ten-year GBM anniversary came and went unnoticed by his family and friends. No one called. No one mentioned it. His adult kids and grandkids moved on with their lives since his illness emerged and subsided after treatment. He said even he can go for periods of time without thinking about it, but it never quite goes away. The threat of the disease is always there. Each coming MRI brings on the question of a relapse. No matter what – an end-stage vigil, a near-miss escapee, a long-term survivor – having a brain tumor is hard.

Tue 04/22/08
Susan started vision therapy today with Chris at Dr. Ikeda’s office. She’ll have 16 weekly sessions focused on multi-sensory tasks that involve speaking and listening as well as the visual. Her homework requires her to scan, read, and remember and is a bit of a challenge. We hope the therapy will revive the stroke-affected areas of her brain.