Marla's Letter

I found your email address! So I am sending you a letter. Please feel free to post it on your website. I would like to commend you on the great info you have on the website! I had no idea that RB could have occur in adults. My name is Marla and I live in Alberta, Canada. I am soon to be 27 years old and have had a prosthesis in my right eye socket for almost 26 years. I was diagnosed with RB at 14 months, but my mother knew that there was something wrong with my eye at 6 months. It took her 8 months of doctors appointments to finally get a diagnosis. By that time the tumour was ready to burst and the only treatment possible enucleation (sp?). I have always felt that my parents were the ones who really experienced the cancer. I don't remember what it was like to have cancer. My parents had to hear the diagnosis and face the possibility that I may have died. They took me to the hospital appointments, follow up check ups, and made the decisions about my prosthesis. I feel all parents whose children are diagnosed with RB (or any childhood illness) face incredible emotional and physical stress. I have been very lucky to have honest and supportive parents. Mom and Dad encouraged me to try anything that I wanted to do. My favourite toy as a child was my View Master. I didn't know it was meant to be 3D pictures until I was 21! I joined a baseball team when I was 8. I couldn't hit the ball that well, but I found baseball a little boring anyway. In highschool I was on the swim team for four years and performed in theatre productions. My new highschool friends did not know I had an artificial eye until my second year of highschool! I moved to Alberta from Ontario over a year ago. When I lived in Ontario, where my family still lives, I found out about Dr. Brenda Gallie at the Hospital for Sick Children in Toronto. She has done great research on the RB gene. Maybe you have seen a documentary on gene research which covers her work with a family on the east coast of Canada. I am sorry that I do not know the exact name of this documentary, but it has been aired twice in Canada on the CBC network I think. There is a Retinoblastoma Family Association based out of Toronto. A family treated by Dr. Gallie started this Association as a support network for other families. A newsletter is published about twice a year and I think they still meet once a year for an update on the research happening in Toronto and to hear a speaker. Dr. Gallie had me go for bone and Cat Scans when I was 14 in order to look for signs of Ostiosarcoma. I was violently ill from the chemicals involved in these scans. It turned out that the next year the hospital decided that these scans were not effective enough (once a year scans) to catch early occurances of Ostiosarcoma, so I have never had these scans again. My sister and her husband recently had a baby (he is 8 months old now). Prior to becoming pregnant they went for genetic counselling at a hospital in Toronto. I am not certain of the entire procedure involved, but my treatment records were reviewed. My sister's baby is very healthy and so far there is no sign of RB. My RB was unilateral, so this is a good indication that my RB was a 'freak' tumour and is not genetic. I am somewhat self conscious of my prosthesis when I first meet people. I do not know if I will ever overcome this. Many people tell me that they have never noticed my artificial eye and would never have thought there was anything wrong with my eye. Other people ask me about my eye the first time I meet them. I think it may depend on how my eye lid and surface of the prosthesis looks that day; If I am tired, if the climate is especially dry etc. I do have a lot of discharge from it, but I rinse it a lot with saline. My ocularists have been helpful, but there is only so much they can do. I am a very healthy, happy, and active adult. I am forever thankful that my mother was determined to find out what was wrong with my eye. I have often thought that even though I only have one eye, I have many other gifts that make up for this. I would be happy to correspond with anyone via email. Please feel free to send a message to mrosebus@netcom.ca Thanks again for the great website, Mike! Marla *.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.* Marla Rosebush, B.A., Dip.A.T. Remember: What goes around comes around... *.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*

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