Jubillee week:

During those sunny days last week, I had the bright idea of using some of our wedding savings to book rik and our girls into a local hotel for the jubilee bank holidays, I thought it would mean less time spent in the car stuck in London traffic and more time together as a family, the girls love coming to see Connor and it brightens his day to see them. I should know by now our luck is crap. Sunday morning came, Ella was excited to see the hotel, it was only a holiday inn bless her but it had a small swimming pool so I knew she was really looking forward to it, and it was only an 8 minutes walk from the hospital - added bonus. By the time rik had driven up here, he was starting to feel ill, like he was coming down with flu at the same time I was told Connor had an influenza virus, so he wasn't allowed any visitors who were the slightest bit sick as he has no immunity to fight any germs, it also meant his sisters shouldn't come up, especially Lola, at her age she could be a carrier for a lot of bugs. It seemed pointless using the hotel,but although they sympathised with our situation they couldn't refund our money. So from Sunday till Tuesday we were round the corner from each other and had to stay apart, the weather was awful but the girls still managed to go to London Zoo, and Hamleys, they were also in the pool for hours everyday, so at least they had a nice few days. It is now Wednesday afternoon, we have had no visitors since Saturday, Con and I are missing rik and the girls like mad, Con has slept 16 hours a night and then for hours during the day so im at a loss as to what to do with myself,im so busy at home so used to having a routine that im struggling with all this time on my hands. I've read 5 books, spent hours googling every Neuroblastoma site i could find and when Con is awake we play Ratchet & Clank on his PS3 until he wants another another sleep. Apart from being so tired I think Connor is coping well with the effects of high dose, his mouth isnt too sore, he isn't using his morphine pump that much, we have weeks left for things to deteriorate but I'm hopeful.