Today marks the start of World Retinoblastoma Awareness Week. We (the Rb families) are inundating twitter and Facebook with constant naggings and reminders to spread the word.
Retinoblastoma can kill, simple as that. Its cancer, simple as that. A certain percentage are 'likely' to develop it if they have inherited the 'rogue' gene or had it mutated at conception but in a large number it just happens.
I always assumed cancer happens to someone else, and the only real childhood cancer I'd ever heard of was Leukaemia. Now I have been thrust into this strange club of horrifying cancers eating away at precious children, so don't ever ever assume it will happen to someone else.
So raising awareness of any cancer, not just retinoblastoma is important. But Rb is close to my heart now, if I can prevent a child from losing first their life, second their eye and third their sight then I will do all I can to do this.
We share posters like this :
Now don't get me wrong, having one of those signs does NOT necessarily mean cancer. My next youngest son has a squint and he has been checked, and its just a squint that will be corrected before he starts school, BUT sometimes it does mean cancer.
It is not just the parents who need educating in recognising the signs. The number of GP's or medical people who dismiss them, either because they have not heard of Retinoblastoma, (and this has happened) or because they assume its just something that will be sorted say with glasses or patches need educating too.
In too many instances, children have lost their eyes or sight and had they been referred sooner than the 'wait and see' method then their outcome may have been different. I was extremely lucky, Harry was referred and diagnosed and treatment started within 3 weeks, and he was then only 13wks old. I dread to think if my GP had shoo'ed me away saying it was nothing where Harry would be at now.
There is thankfully only a small number of children diagnosed each year within the UK, but one is too many. If we multiply this by the worldwide number its quite frightening. At the minute I can't see this type of cancer being preventable, especially as it sometimes 'just happens' but we can make sure that early detection is put in place so that we can drastically reduce the number of children who lose their lives, eyes or sight and that they can grow up to live as normal a life as they were born to do.
So please don't ignore our messages, you or someone you know may have to face this nightmare so shout it out and share with everyone, Know the Signs, Know the Glow.
Thank you xx