Thank you for sharing your experience. We have found that it is really difficult to contact other families that have shared this experience. It seems that the times we often meet and/or hear from other parents are at the hospital when our children are in for EUA's and treatments, so it is usually not a good time to network! The past few months have been really stressful for us as parents, not to mention the impact on our son. The following is a summary of our "story" over that past few months.

Our son, Nicholas, has bilateral retinoblastoma. He was diagnosed at 5 months of age and had his right eye removed at that time. The left eye is currently treated with lazer therapy. We go to the Toronto Hospital for sick children every four months for EUA's. During his last two EUA's, Nicholas has not required any treatment. We hope that this continues to be the case! Recently, we were informed that our physician, Dr. Brenda Gallie, had isolated the genetic error that caused RB in Nicholas. So we are about to embark on the next part of medical intervention> a series of blood tests to determine whether or not one of us carries the DNA mistake (we have no family history). That about sums up our "story".

We live outside of Woodstock, Ont., in a older two-story home. Ed goes to school full time and I supervise residential treatment programs at a children's mental health centre. We have two dogs,a cat and several fish. When we have time, we like to go for walks, swimming and enjoy spending time with friends. I guess that about sums up our INTERESTING life. We look forward to hearing from you

Sincerely,

Oct. 9 1996

Nicholas is now one and a half years of age. The doctors believe that he has 20/20 vision in the remaining eye and are optimistic that he will continue to have good vision out of that eye. At this point Nicholas has had several small tumours in the good eye and they have been treated with the lazer.

I am interested in hearing if you have had the genetic testing done or if you will be persuing that in the future. I would also like to know how your son handles the EUA's now that he is older. Nicholas has just started to demonstrate a fear of doctors, nurses, etc., and I worry about how to handle his anxiety as he becomes increasingly aware of what will happen to him at the hospital. I also wondered if you have some insightful suggestions on how to deal with the well meaning, but nosey stranger. I find that if I tell the truth people are devasted and I end up having to console them or if I provide a little information I end up having to stand and answer questions for half an hour.

On a lighter note I have a funny story to share about my 3 year old niece and her explaination to others about Nicholas's missing eye. Nicholas had to have his implant replaced in July of this year. For a few weeks following the surgery Nicholas went without his prothesis because of swelling. My niece, Karisha, visited during this time. We didn't think about explaining the missing eye (she had already been told that he only had one eye and the other was a pretend eye) and she didn't ask. Later that evening, she was visiting with my Mom. Karisha told her that she had been visiting with Nicholas and he had been a bad boy. Mom asked why Nicholas was bad and Karisha replied that monsters only take the eyes of bad children and the monsters had taken Nicholas's eye. Needless to say, we had to explain what had really happened to the eye( to Karisha). When I finished Karisha looked at me and said very seriously "Please don't take me to Nicholas's doctor" and then walked away. I guess there is going to be lots more explainations as time goes on!

FYI - Last year the Toronto HSC held a symposium on RB. They plan to make it an annual event. The symposium updates patients/parents, doctors, medical professsionals, etc. on the latest research, medical interventions and treatments, etc. If you wish to recieve any info about this event I would be glad to forward the info when it is recieved.