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  5. Retinoblastoma - if you don't know what it is please read

Retinoblastoma - if you don't know what it is please read Rss

Recently we noticed that some photos we had taken of our DD looked unusual. 1 of her eyes had the normal red reflect but the other eye was reflecting white. I remembered reading an article several years ago that said that this can be a symptom of retinoblastoma - a cancer at the back of the eye.

I immediately phoned our pediatrician who got us an urgent appointment with the local opthamologist. Unfortunately he was not specialised in young children so we had to travel to the Sunshine Coast to see a paediatric specialist. Whilst it was all very traumatic (we had to wrap her in a blanket and have 5 people hold her down) the result for us was good. No cancer thank goodness. The specialist told us that all parents should take photos of their children once a month using the flash and go straight to the Dr if they notice anything unusual in their eyes.

Just thought I would share our experience and I hope others can learn from it.

Happy snapping,
Karen

wow i would have never ever though anything of it, especially that it can be linked to cancer. Had a look at recent photos, they are all good. Thanks for putting this on as you would prob never pick that up.

Hi Karen i had a similar scare with my boy. At his 6 week check up, a doctor tried to find his red reflex for about 20 mins. Using different torches and making the room very dark. I ended up having to go see a ophthalmologist too. Very scary and i was so frightened for him. All was clear, no cancer and a healthy red reflex!!
WOW that must of been a scary time for u and ur family. I am always taking photos of dd but now i will be looking at her eyes in the photos more carefully. Thankyou so much for this info!!!
It was a scary period and I feel blessed that all was well. The important thing to remember is that you have to use the flash when you are taking the photo.

Denae,
Did your son have to have the drops to dilate his pupils? My DD had to have it twice. It's horrible.

WOW thanks so much for posting, I will definately be taking photos of my 3 boys tomorrow just to check!!


Denae,
Did your son have to have the drops to dilate his pupils? My DD had to have it twice. It's horrible


Yes!! He screamed and then having both of us hold him down. He was only 3 months old!!!!
Bump.
Would like as many as possible to read.

bump

hey there guys my daughter was diagnosed coming up 6 months ago with retinoblastoma. we have currently finished 4 rounds of 6 chemo and she last week finally had her prosthetic fitted and it looks fab!! trust me she is 3 next month and has handled the whole ordeal brilliantly. nothing has phased her nor has it held her back. unfortunately we were not aware of the white eye in pictures and never noticed until we looked back at photos once she was diagnosed. however, our first sign of something wrong was actualy a lazy eye. then whlst we were wating for opthamologist appointment as GP never found anything sus in her eye at check, we noticed a misty reflection come up over her pupil and this was always there, so this is when her cancer became physcially visible to us. i pushed for her appointment to be brought foward thinking i was going for a cataract that had developed (lovely interenet is a lie! lol) her cancer is an abnormality in chromosome 13, and unfortunatly for us her retinoblastoma has come back as hereditary but our new baby is free as Kenzie has a new germline mutation which means she is the first carrier, therefore it is hereditary from her on in. it is a rare cancer, and as much as the start of the journey was hard, it has gotten easier, and we actually look foward to going away for her chemo to meet up with the many fantastic families we have met over the last few months. the support is unbelievable!! and also, kids I have a whole new respect for them. Have met so many families whos kids really do have it hard. and all those kids are battling it out, deteremined to win, and don't really complain. never underestimate a childs ability to cope, never underestimate just how much they take in, and never underestimate the strength they have to carry on with life. they all crave the same thing 'normality.' Kids have this knack of not being able to dwell on the past, but to only focus on the now and near future. not to say they forget the horrid things, but they dont dwell on them they know it will end. something us adults fail to remember. and also if ever there was a good cancer to have, this is it, how many other cancers can u say have a success rate of over 95%?? we are on the home stretch of Kenzies battle! so anyone keen to email or no anyone who is going thru this let them know im keen to email and swap stories its kelly_neil@xtra.co.nz cheers Love Kel

Mckenzie Cate 28/7/04 & Lexi Breanne 10/5/07

bumpity bump after personal experience i deem this an important thread.

Mckenzie Cate 28/7/04 & Lexi Breanne 10/5/07

Thanks for posting this invaluable info, I'll be regularly flash photographing my wee boy. And Kel, great to hear that your little Kenzie is such a trouper, all the best xo
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