I'm sitting At the end of Jaydens hospital bed after reading about another child lost to ATRT and the words that our surgeon once said to me in the beginning of this whole mess keep ringing in my head. At this point he had not removed the cancer but gave me a very basic rundown on what cancer it could be. He told me cancers are loosely grouped into three types. The good cancer, that winds up being benign and they remove it and we can go home a couple of weeks later. The not so good cancer, but can be treated cancer. and finally the AGressive cancers that you get 6 to 8 years. As if talking about a prison term.
Now I sit here watching my son and think of that time frame. We had a win today and found out the infection is not on his heart valves. But how many more wins will we have?
He's so perfect and innocent. How many wins will we get?
When we went to the recovery today to pick him up it was so awful. His face was all puffy from the fluids, I could hardly recognize him and he was crying out in pain with a hoarse voice from the tube that had been down his throat helping him to breath and the new gastric tube in his opposite nostril. His chest was bruised from the removal of his broviac and he now has a line in his right hand thats upsetting him something terrible. He was scared, upset and I felt so bad for letting them do this to him. Nobody understands the torture of handing your child over for procedure after procedure. Watching them so frightened and theres nothing you can do. Wishing so bad you had some sort of control but you have none. seeing them look at you, pleading for it all to stop but you can't stop it. I feel like such a shit mum cause I can't make it better for him.
I give him so much love when he gets back, loads of cuddles and reassuring him I love him but I feel like a fraud. Why can't I stop this, why can't I fix it.
When Luke realized I wasn't coming home tonight he got upset. He said "jayden always gets you the most, it's not fair", and he's right, it's not fair. I wish I could make it fair.