Before I start I will warn you, that this may not make sence.
As most of you know Steven has been ill in hospital, some know the extend of illness, some dont. We were at the hospital today and after talking to the doctor, he pulled my ex wife to one side and had a talk to us. He tiold us we have got to stop hiding our emotions and dont been afraid to tell people how you feel and the full extend of stevens illness.
Steven has Stage 4 Seminoma Testicular cancer. Stage 4 means that it has spread to other other organs, at present it has effected Stevens Lungs, Kidneys and brain. He had brain surgery 6 weeks ago to remove cancerous tumors from the brain, at the time we were told it would give him at least another year or 2 onto his life, unfortunetly the tumors have returned again causing him to have seizures, which are a lot worse than when he first had them before the surgery, each one lasting approx 30 mins, and has left him paralised in his right arm and today he started to lose mobility in his legs. Although Steven is Down Syndrome as well, we have noticed lately he is more aware of what is happenning to him. Today he turned round to us both and said he was tired from all thats happenning and that he cant take much more.
Since been diagnosed with his cancer, life has been an emotional rollercoaster, at times you scream loud for someone to stop it and let you off, but your cries fall on deaf ears. You always expect your children to outlive you. If Steven had been knocked down and killed in a road accident, yes it would have been hard but maybe easier to accept. But to sit and watch him getting weaker, knowing there is nothing more you can do to help him is hard to describe.
We have another meeting with the specilaist on the 8th Jan, between then and now the Ex wife and myself have got to have some soul searching, as theres is going to be some major decisions to be made on that day. We have already agreed we dont want to put him through Major Brain surgery again only to be told 6 weeks later it has returned. We both feel guilty about putting him through it before. Nobody knows how long he has left, it could be a day, a week, a month a year. I have 2 feelings on this a selfish one where i want him to survive for longer, and a res[ponsible one where i dont want him to suffer any longer and leave us with a little bit of dignity that he has left
