Day Fifteen - Doesn't time fly?

It's late again but this time I have been sorting stuff out. I have just emailed Katie, our social worker here, to ask if she can help us get to Kennedy Space Center! It is the last ever shuttle launch on 8th July which I would dearly love to go to but we would never make it with Millie and all the tickets have sold out. You can view it from various other places but you have to be there at least 6 hours before the launch which is just not practical with a small child. The next best thing would be to view the shuttle on its launch pad which is possible from a month before launch. But I have no idea how to go about arranging a visit, or booking a suitable hotel, etc etc etc. So I have asked Katie if she has any information that would help. However, whilst looking at the dates I realised that we would only have this weekend and next weekend. And next weekend is the July 4th bank holiday. We will see!

Millie did her proton with out too much trouble. We are sussing the small routines that make life more manageable for all of us, including Millie. If she knows what is coming she accepts it better. Today she wanted to play with puzzles so we got some from the boxes in the recovery room, including one that is similar to the dress-up bears one she has at home. She let Kendra do the obs but kicked up a fuss when Kendra wanted to give her wiggly a drink. It wasn't quite as big a fuss as normal but she still resisted! However, she settled down really quickly and when I asked her if she wanted a cuddle so we could find some music for her to go to sleep to she said "Yeah, OK."! And that was it. I picked her up, we went into the red "space rocket" room where the music was being played loudly. I held her till she coughed then laid her down, kissed her and left. We are literally in the room for about 3 minutes. It was a bit more relaxed today so I got a bit of a chance to look around. When she had her CT simulation they made a mask for her. I wasn't quite sure what I was expecting it to look like but I saw it today. I had been warned that it is set on a stand next to the board/bed that she will lie on. But I hadn't spotted it before. It is a mesh mask that had all her features in it - nose, mouth, eyes. It was also quite long behind her head, this is presumably to pin them down. Apparently you get given the mask when you leave, and you can even decorate it. I'm not sure I would want to keep it. I was talking to Jake who stays awake during treatment and it felt right for him to keep it as it has been a large part of his life. And he can take it home to show friends and family and tell them about what he has been through. I'm not sure the same is true for Millie. We'll see how I feel when we get there. We still have 29 treatments to go.

Millie woke up pretty quickly. And after I had taken the monitor lead off her toe and put her sock back on she was wanting up and smiling. She had a yogurt followed by some tuna mayo. She was talkative and giggly. She walked out of the room, saying bye bye to Kendra, within 15 minutes of waking up. We were back at RMH by twenty to two, a good hour and half earlier than yesterday. I am not quite sure where the time came from but it was a pleasant surprise. She also didn't feel the need to eat so we were back and playing and wandering what to do with our afternoon. The smoke outside was really bad today so we wanted to find somewhere to go that was away from the smoke and heat. So, somewhere air conditioned basically - a shop! We had the choice of doing some food shopping at a Publix or going and checking out a mall. I had recently worked out what malls were nearby so we chose the nearest and headed there.

The car park was huge and had very few cars in it. I would hate to be there when it was busy. The mall we chose was large, although it was split into different sections and was only single story so it didn't feel massive. But it did stretch a fair way. Although I'm sure there are bigger 'malls' in the UK these days. We don't have any near us and we don't shop for fun so we wouldn't know. Millie and I checked out the train in the middle of the mall - yes, a train - one for kids to ride on, while my husband checked out the shops, in particular any that sold sunglasses. He left his at home and is squinting in the sunshine here. We then had a look in a kids clothes shop and picked up a few nice bits for Millie to supplement her wardrobe of red stuff. Red is her favourite colour, so she keeps telling me. Shame it doesn't go with the pastel colours she inherited from her sister! We also got a couple of pretty t-shirts for her big sister. Then Millie and I went on the train, at the cost of 2 dollars, before heading back to RMH.

It was Art with a Heart again tonight. The chance for Millie to do some more painting. Tonight she painted with Daddy, giving me a bit of a break. She painted an apple tree, a dolphin and a purple people eater!!! I got the chance to talk to some of the other mums which was nice. The rest is now routine!

More proton tomorrow. This time we need to be there at half 11 which is half an hour later than today and yesterday. Might make it easier to ring home. Shame we can't skype. We did ask Amy yesterday if we would be moving earlier at any point and she checked the list and said not for a few weeks. So looks like we will have to keep to this "late morning, late night" routine. It works for now. Might be scuppered by therapy but we will have to see. One step at a time!