I rang danny first thing this morning and he gave me the first bit of good news for the day and that is jayden had a good night, nothing like the night before. Luke and I then got ready to head in after Layla went to school and just before we left danny text me the second bit of good news which was the doctors have been to see jayden and have given him the ok to go home! Yah! So i returned my packed bag to my room and headed off with Luke.
Luke has been great through all this really. He never complains about going to hospital and I know it bores him to tears, he just jumps in the car and away we go. Chatting all the way. He's quite the talker these days.
We arrived there in the pouring rain and it took forever to get a park, at least it felt that long. Once we did we raced down to see jayden who's little face lit up when he saw mine and even more when he saw Luke. I'm so proud of how much they love each other, it is so special. Of course they argue as well but they get over it as quick as it started. No sooner did we walk in, Luke was up on the bed and they were watching transformers on lukes iPod together, very nice.
We then had the long wait of getting everything finalized to get out of there. I do find that bit very difficult. They tell you in the morning you can go but theres always a stack of things to be done before you can actually go. And all the while you desperately want to be first on the list for it all to be done and out of there.
He had to have platelets before we could even think about walking as his were only at 20 and Nick wants them at at least 30. So we had to wait for them to arrive, then once they did we had to wait for them to go through which luckily doesn't take as long as a blood transfusion. Next were his meds then daily injection in his leg which he was as expected really upset about. He then had to have the tape changed on his nose tube which I've never mentioned before I don't think but is equally distressing. With that they have to take off the tape under and over the tube which is on his face and it hurts, then put new stuff on. He gagged a lot this time and I was really worried the tube had moved but after testing it afterwards it was ok.
Finally after all that and getting his medications, pump bags, syringes and tape we left. He was excited but didn't want to walk today. He sat in the pram and didn't say anything. It was obvious he is was happy to be going but feeling very very ill. I noticed when I came in this morning that he's looking paler by the day and losing more hair. Another reminder that he is indeed a child suffering from cancer. Made me want to cry. I so want him to be the well little boy I know him to be and I'm so frightened of not seeing that again.
He fell asleep in the car on the way home but as soon as we pulled into the driveway he was home. Not as excited to be home as last time and I wondered if he thought not to be as he only ended up back there again. Bloody hell I really hate taking him there, him being pumped with all that crap and then bringing him home this weak, sick little boy, it is all so damn cruel and so crushing to witness.
He tried so hard to keep up with his brother playing but fell down a lot. His little legs just couldn't do it and his body was feeling just the same. He spent most of the afternoon on dads lap watching a video with luke and when i came home with layla after having to wizz out and pick her up from funtracks he was in my arms.
He never ate at dinner but sat with us anyway. After dinner he had a bath which he loves and stayed in for ages.
Now he's asleep next to me and I'm happy he's home. Im happy I'm cuddling him in our bed and not in a hospital room and i wish i could promise him everything was going to be okay and know that it willbe. I wish i could give him his health and he be able to run with his brother again. I wish i wasn't setting up a pump for his feeds at night but rather he gets up in the morning and i see him eat breakfast for the first time in seven months. I wish so much of his life were different. None of this will EVER make sense to me. Why he got this cancer? Why any child gets cancer? Why there's no known cure? And why him? Anyone that knows him knows how special he is. It just doesn't make any sense.
Watching him struggle to walk today was so very sad and we have noticed he isn't hearing things we are saying. I truly hate this journey. I ask myself all the time, if this is life then how does anyone live this?
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