This is such a hard post to write and I'm sorry its took me a while to get the courage to write it !!
Friday was certainly a turning point in our journey but not in the way we were hoping.
The short version is that the team of consultants are out of ideas and therefore all treatment has to stop as nobody knows where to take it !!
They will continue to remove the growths as they grow but nothing else!!
This means that Cameron will now have to learn to live without an eye and he has no choice but to learn how to answer questions on his appearance. Hard for most 9 yr old even harder when the 9 yr old has an autism spectrum disorder.
For us as parents it means that Cancer will follow us wherever we go and theres a great deal of soul searching about decisions we have made along the way.
There is one thing I am sure of though and that is given some time to breathe and think we will get through this as a family !!
In the short term we are hanging onto the fact that he is here with us and that he is at present healthy - we can work on the happy part in time.
So there it is - its not the end but its certainly a shock x x x
Thinking of you all Louise, not the decision we wanted to hear and I hope some new treatments come to light. The main thing is as you say is he is with you and healthy, all you can do is take each day as it comes and pack in as much fun and happiness as you can. hugs xx
ReplyDeleteThanks Bev.
ReplyDeleteWe will get there in time its the double looks and people staring that hurt the most at the moment - they have no idea what he has been through but judge us as parents just from Cams appearance.
Thanks for your kind words x x x