My baby has retinoblastoma

[scaredmuffins]

My baby boy, 3, autistic, has a retinoblastoma. Emergency surgery on Friday to investigate. They haven't confirmed it yet, they will on Friday. But I know, he has every single symptom and the tell tale signs that can't really be much else.

I just wanted to tell someone as I don't want to stress my mum or my friends out, my partner is great but he wants to keep positive.

I feel so guilty, I've always had a feeling something awful would happen to him because I wished him dead when I was pregnant with him and in the mist of PND at the beginning.

He's the best kid I've ever met. How will I get through this? Thanks for listening all

Oh OP. About to go to sleep and just saw this thread and couldn't not reply. I had retinoblastoma at the age of 2, in 1979. My right eye was removed but fortunately it was single eye only. I promise you that I grew up otherwise happy and well. I have a happy marriage, a successful professional job, I drive, travel, etc, and do almost everything anyone else will do.

I have two happy, healthy boys who were both intensively screened from the age of six weeks to 3 1/2 years old through the program at the Royal London, and as someone has said up thread, the team there are wonderful. Also the people from the Childhood Eye Cancer Trust are very supportive.

I promise this is nothing to do with anything you did or didn't do. It's a genetic mutation and therefore just sheer awful bad luck.

Please PM me if you would like to. Xx

Hello again,. If you're being seen in York I'm guessing you are local to there - have a google of Candlelighters, they are the local children's cancer charity and are amazing at supporting both children and their loved ones going through this nightmare.
Will be thinking of you and your little one tomorrow, feel free to PM if you want.

Good luck today OP. Thinking of you and your family.

Hi all, thank you all for lovely messages. He's just gone under, so now we wait for answers.

Yesterday I chatted with friends and family and it really help put things in perspective. I am less panicky, but nervous for travelling down south for treatment.

Thanks again for your positive stories 🩷

A big hand hold from me OP.

I have accompanied one of my Dc to many GAs, and never got over the moment you leave them unconscious on the trolley. That’s one hard part ticked off. Well done.

Fingers crossed for you from now on.

@scaredmuffins how did it go on Friday?