Retinoblastoma (treatment, surgery, waiting)

[Sabinerose]

My baby niece (just under 2 years old) just got diagnosed with this. She has had surgery to remove the cancer (and one of her eyes). We are waiting to hear about the lab results and if she will need further treatment. I am wondering what else to expect? She will have to get a prosthetic eye at some point, but not sure how old she needs to be for that to happen. I do not believe she has had vision in that eye for many months so adjusting to balance and such won't be too much of an issue.

Does anyone know a child who is grown that has been through this? We are all wondering what the future will bring and how things like schooling, driving, etc. will go...

[jasper12]

It is very interesting, the research shows that children with retinablastoma are usually gifted, and extraordinary smart. Most end up totally blind, as the cancer spreads to the other eye via the optic chasm, and both eyes end up ennucleated.

I suggest your family contact the state parent infant program, and also school district, child find is an excellent resource to connect her parents with support and information.

Sorry if I sound very clinical, I hope your niece will not need her other eye removed. She will be getting a prosthesis when she is older, I suggest your family look at the website, baby glasses, and get some cute sunglasses for her, to keep her eyes protected. Those glasses work the best in my experience.

[Jrsygrl51]

I am so sorry about your niece. The first person I thought of when I read this was Jeff Healey. If you are not familiar with who he was, google him. I will pray for your niece.