Monday, April 26, 2010

V.H.L. love mom

We arrived at Wills Eye late afternoon. The doctors were all booked up. They told us to wait, until they were finished, since this was an emergency. The doctor asked me so many questions, I felt as if I did something wrong. Did I do drugs, did my ex do drugs, was she around animals, when did I notice a change in her eye, I was so stressed out. I did dabble with drugs years ago, and my ex also did, and was still getting high. I wanted to blame him for her tumor. I told the doctor the truth about everything. You could imagine the guilt I was feeling. After looking in her eye several times, and let me tell you, she was a perfect patient. She never complained once, all those bright lights in her eyes, stretching her eyes open, laying still, I think they fell in love with her right from the start. They finally concluded that it might be Von Hipple Lindau Syndrome. Von Hippel–Lindau disease (VHL) is a rare, autosomal dominant genetic condition[1]:555 in which hemangioblastomas are found in the cerebellum, spinal cord, kidney and retina. These are associated with several pathologies including renal angioma, renal cell carcinoma and phaeochromocytoma. VHL results from a mutation in the von Hippel–Lindau tumor suppressor gene on chromosome 3p25.3.[2]

Sunday, April 25, 2010

V.H.L. love mom

Isn't she beautiful! You would never guess that she had 23 surgeries. It all started when she was four years old. She was such a character. She would always pose for me, even when I didn't have a camera, and I would pretend she was at a photo shoot. She loved to sing and dance for me, and I would make a big fuss over her. She loved to play office, with my brief case and papers. Her brothers idolized her. They were very protective of her.

One day I noticed that her right eye was slightly off, like a lazy eye. I asked other family members if they noticed any thing different, but no one did. I decided to take her to an eye doctor. This doctor was recommended to me, and he was very busy. We must of sat in that office for 2 hours, before we were seen. After looking in her eye, he turned to me and said, you need to get her to Wills Eye immediately, I think she has a cancerous tumor in her eye. And that was it. I drove home with her, trying to stay calm, and not look upset. I went into the house, and told my ex husband, we need to go to Wills Eye now, the doctor said she has cancer.