Verity , February 2002

Once you get home, what then. How does life change when you have a child who has had Rb, has an artificial eye and has to go for EUA's every n months (where n can be only a few months or half a year).

The basic message is, what is right and normal for you is right and normal for you. However, this is what it was (and is) like for us, our two other children and Verity. Take from it what you can, but remember all children are different and what works for one child may not work for another.

Verity's spare eye, front and back

The biggest change in Verity is that she has only got one eye. In the socket she has an implant (of what we have no idea, we never asked!). Without her eye in the socket looks a bit like the inside of the mouth and it doesn't hurt when prodded (judging by the way Verity treats it if she doesn't have her eye in!) The artificial eye is basically a piece of plastic that looks like an eye that is placed in the eye socket to look good, give shape and support to the eye and (with the liquid the eye secretes) to act as a barrier to infection.

There are two sorts of eye, shell eyes and molded eyes (or moldy eyes, as Verity calls them). The eye you can see on the left is a shell eye. This is an eye of a standard shape, that then has bits shaved off to help it fit. Molded eyes are based on an impression of the eye and so fit the socket better. There is a difference of opinion about when to fit molded eyes. The process of taking a mold is time consuming and can I understand feel a bit unpleasant. Many artificial eye specialists will not fit them until the child is 5 ish. Verity is super good for Sally, our artificial eye specialist, and so Verity had molded eyes when she was about 2 and a half. Sally said that Verity was one of the youngest people she had fitted molded eyes for. See what your own specialist says.

This is one of the questions that we  asked most often, especially early on. One reason why we asked it so often was that we seemed to get a different reply each time we asked it.

As far as we can gather, there is no right amount of time for an eye to be left in before cleaning. People's eyes are different, people's circumstances are different. Earrings effect people's ears in different ways. Artificial eyes effect eyes in different ways.

We were first told  to clean Verity's eyes fortnightly (after the initial weeks of the conformer of course, when you keep it in and wash it with cooled boiled water and use sterile swabs. By the way we made the mistake of buying swabs for a while. Your health visitor or doctor should be able to prescribe them to you for free). 

So we cleaned Verity's eye fortnightly  and each change was a real battle. It needed two of us to do it, one to hold Verity (usually wrapped in a towel to keep her hands out of the way) and the other to actually manipulate the eye. It was horrible for all three of us.

After seeking advice from the Rb Society Play Therapist, we then switched to cleaning Verity's eye once every few days. The idea behind this was to get Verity used to the process. This worked and Verity lost most if not all fear of having her eye taken out. As she grew, it became easier to take her eye out (one of the signs of a new eye being needed to be fitted) and we still remember that interesting fortnight when Verity started to take out and throw her eye away during tantrums. (She stopped this mainly because we made no comment about it. As a tactic within the tantrum, it didn't work so she stopped it. Our course in Positive Parenting was worthwhile!)

Verity is now very good with her eye. We usually wash it when it looks gunky, if she has rotated it round (she spins it with her finger) or at worst once a fortnight.

From talking to other people, we have been very lucky with Verity.

Rory and Naomi, Feb 2002

We have two other children, Rory and Naomi. When Verity was diagnosed, Rory was 4 and Naomi was 6. We told them, as clearly as we could that Verity had something in her eye called a tumor, that to remove it the eye would have to be removed and that if nothing was done Verity would die.

Their reactions were very striking. Naomi was enraged. She started kicking and screaming, how could we allow such a horrible thing to happen to Verity. After sitting down with Naomi and talking about how unfair it was, but we had to make the best of it, she was fine. Rory was just fascinated as to what would be done with the enucleated eye. (Apparently tissue from the tumor is stored in wax for future genetic testing).

They were both checked at Verity's first EUA after enucleation. This gave them a chance to see where it all happened and what Wednesday clinics were all about. This was important for them I think. They found the separation when we were in London for Verity's enucleation very hard to bare. They missed us and we couldn't say when we would be back.  They also miss us for EUA's, even though they know we will see them in the evening

We treat Verity as a normal member of the family. This helps them to treat her as just a sister. We dread issues like mobile phone use, where we may have to single Verity out (due to the possible increased risk of secondary tumors).