Alexa’s Story – told by her mother, Linda.
You are probably reading this because someone in your family has been affected by Retinoblastoma. If it’s your child, and recently diagnosed, you are perhaps reading these stories in search of positive outcomes, and hope. I did. Maybe I can give you hope based on our own experience.
Alexa lost her right eye to retinoblastoma a few days after she was diagnosed. The tumour filled 90% of her eye. Her left eye was thankfully clear. It was assumed she had sporadic Rb, but after genetic testing, we discovered she has the rare mosaic form. About 50% of her cells have a mutation. I was floored all over again. How could my daughter carry this risk? How could we live with this fear?
We have two daughters, Yana and Alexa. They are just sixteen months apart in age and share an exceptionally strong bond. They are my world and I realise these days of rearing my children will be the best days of my life.
You are probably all too aware of the endless medical procedures and the hardships that go with Rb. So what can I share from our experience that might help you on your way through this difficult time? Does it get easier? Sort of. The worry never goes away. It becomes part of your existence, part of you. Learning to control it is the key. I haven’t mastered that yet, but I’m a lot further along the line than I was a year ago.
As a Mum, my role is to protect my children, and I couldn’t protect Alexa from what happened. So I decided right at the start of this traumatic time, that I would try to learn from other parents and adults who had Rb as a child, how I could best help Alexa deal with this condition. Not only Alexa, but my other daughter, Yana too. This is also a traumatic experience for siblings, let us not forget them. The fear they may have when growing up, the fear they may have when having their own kids.
I was not aware of the Facebook support when Alexa was diagnosed, so I tried to find people on the internet who had been through this. I landed on my feet with some ladies who had experience with Rb and gave me some super tips. I also found this wonderful website, and my friend Abby White, who has helped me so much, and who continues to help so many families across the world.
Some tips passed on to me, and some other experiences I find useful:
• Let your child choose a nickname for the prosthesis. I think this was the best tip. I can ask my daughter questions about her eye in public, without drawing unwanted attention to it. Alexa christened her prosthesis Mini. Is Mini sore? Is Mini twisted? Do you want to come with me and sort out Mini? Some people say your ‘special eye’, but I found this drew attention to the fact that it was different to her other eye and sometimes she didn’t want this attention.
• Try to get the best fitting prosthesis. Why? So it look ‘normal’. This is not always easy. In Ireland we had problems, but now an ocularist comes over from England once a month. If you are lucky to have a choice of ocularists, try to find one your child loves going to, who knows how to interact with a child, make them laugh, put them at ease and thus make it less of an ordeal. That will make the process much easier.
• In the first few months after your child gets the first prosthesis, remind yourself this will get easier. Keep repeating ‘this too shall pass’, because it gets easier, I promise. I clearly remember how scared I was (not to mention Alexa) when she had the prosthesis taken in and out. This was my adorable, beautiful child sitting in front of me, terrified. I was terrified too, for her. We took it slowly, tried to give her as much time as she needed when putting it in. We taught her to breathe deeply, look me in the eyes, and count to ten.
We were told that if she opened her mouth, the prosthesis could slip in easier (it does, and also means she is concentrating on something else). The first time I put her Mini in myself was a few months after enucleation. We all clapped, cheered, jumped around, laughed and celebrated with her. Then I cried. The relief of knowing I could look after her again myself was overwhelming. It just takes time and patience, and plenty of encouragement.
I used to ask Alexa to help me and teach me how to do it. Her confidence was boosted to think I was relying on her instead of the other way around. My same little girl, aged four, can now remove her Mini and put it back in all on her own. It’s not easy, but she is determined to do it. And yes, I cried again when she managed. This time with pride and happiness.
• When Alexa got her most recent prosthesis, it was very good. But I still wasn’t happy. It was only that night I realised no matter how good the prosthesis, I would still find something wrong with it. Why? because I wanted perfection. I wanted her own eye back, but healthy. This won’t ever happen, but even though her very good prosthesis wasn’t perfect. she is perfect. And that’s what I see now. So try to get the best there is, but don’t be too hard on yourself if it’s not exactly what you wanted. We have our children.
• Try not to google unreliable resources. Stick with a site such as this one, where it is factual and tightly controlled.
• Let your child be a child. Try not to wrap them in cotton wool. Let them do all the things a child needs to do. My daughter went back to gymnastics ten days post enucleation. She plays hockey, tennis, does trampolining, swims, climbs, surfs. Let them run free. Let them try things. Let them live.
• Do not forget siblings. They too are subjected to a lot through this time. They may be worried as they see their parents upset. They may be scared. They may feel left out.
• Post Traumatic Stress Disorder can hit hard after diagnosis. I don’t think anyone can understand what it is like to be told your child has cancer, unless it has happened to them. There is no point in trying to describe it. If you are a parent to a child of Rb, you will understand it. PTSD does ease with time, but it hits me hard at the most unexpected times. My empathy towards anybody suffering, be it a sick family member, a Mum watching her child emigrate or the likes, hits me in the gut, harder than before. The pain is still there from when we were told about Alexa. The fear is still there, but I try to stay in the moment. We are here. My children are healthy.
• Be as honest as you can with your child. It may be difficult, but it will pay off in the long run.
• Your children will watch your reaction to things. Lead by example, so they can follow.
Live in the moment – enjoy the moment – stay in the moment. Remember, today is the tomorrow you worried about yesterday.