Oh my ... my heart goes out to you ... I'm sorry I can't help with your question ... but just wanted to send a hug to you both ... I hope someone can help you... my thought are with you ... here's hoping your lil one comes through and just wish this cancer would leave our babies alone ...
Life seems so unfair when an innocent three year old is struck by something like this. Sadly, I have no medical knowledge as I have breast cancer. I have searched this site for retinoblastoma and could not find any other cases. Have you tried talking to the nurses on this site? They might be able to help you more. You can phone them on 0808 800 4040. They are available Mon - Fri 9.00am - 5.00pm. This number is Freephone from any UK landline.
You can also post a question to them on this site, but it usually takes longer to get a reply doing this. What is the next stage for your son?
I shall have another search on other reputable sites and see if I can find anything. If I do, I shall get back to you.
In the meanwhile, I hope that his treatment is not too traumatic for him and that it is effective.
A cancer diagnosis is hard enough to take as an adult, but it seems so cruel when the recipient is such a young child.
Please keep in touch and let us know how his cancer journey is going. We are always here for you whenever you want to talk.
Thankyou so much for you love and concern, whilst you too are poorly. I hope you are doing well and a Cancer free day will greet you very soon. My mum was very lucky as in January she too was diagnosed with breast cancer. She was so lucky as it got picked up on her last yearly check due to being 72. They then go to every5 years. After surgery and medicine she has had the all clear.. so so lucky. It's been a terrible 2018 so far with my Mum and now my little boy. He is totally unaware about what is going on and still running riot. We will find out more come Monday as we're off to Birmingham for more test.
I hope you keep well and things get better for you very soon. Stay strong. ️
I wish you, your son and your family the best. Please keep coming back to the forum; as you can see, there's many others who can find supportive stuff to say.
Hello Ed. I am somebody else who has not been personally involved with a child diagnosed with retinablastoma; I am so sorry this has happned to your child. You probably already know this but YouTube contains several stories from parents in the same situation in yourself; just thought I would mention it in case you had not as it might be helpful to make contact with the families involved. Annie
