Day Eighteen - First full week of proton completed

It has been an odd day. It started off ok with us getting up at 9am and going though the normal routine but it seemed to be quite hard work for some reason. By the time we were in the recovery room waiting for Millie's turn I was having a hard time holding back tears. Millie had been feeling hungry all morning and I felt bad that I couldn't help. She was grumpy because she hadn't eaten. And the prospect of doing this for another 5 weeks was getting to me. If her time could be moved forward by an hour it would be slightly easier. But they can't. It is to do with the size of beam that she needs. When Ollie leaves in a few weeks we might be moved earlier but it depends on who else needs treatment. My mood wasn't improved by not having had breakfast myself and by Millie not settling to sleep till half 10. It is known that the daily anaesthetic has an effect on thier sleep patterns. I think it is starting to take effect. She was looking exhausted at 7pm but by the time I had got her through her bed time routine she had revived a bit and spent 2 hours sat in her bed playing with her cuddlies. She was perfectly happy but I couldn't leave the room, or go to sleep, until she had passed out herself.

She should have been exhausted after yesterday's events. We started the day at 9am doing occupational therapy for half an hour. That was immediately followed by half an hour of physical therapy. I think the therapist was called Liz and she worked Millie very hard. Lots of up and down slopes, picking things off the floor, stretching up, crounching down, walking on squashy mats ... It was endless. I was shattered just being an inactive participant. Liz is a bit of a whirlwind, I'm not sure how she gets through a day at that speed but it worked for Mille who didn't get the chance to ge bored or even think about the fact that she might not be happy with changing activity. She was working to the last minute. Liz put her on a bike and taped her feet to the pedals so they didn't slip off. She then had to cycle to the sticker station (they get stickers as rewards all the time here) and then to the exit! Mind you, it worked, she managed to move the pedals round and seemed to be getting the hang of it. We now have some tape to try it at RMH!!!

Millie fell asleep in the car within minutes of leaving therapy so we left her there for the half hour we had before going to proton. We had to park her in the shade at RMH and leave the car running to make sure she didn't overheat and we played tag getting a quick coffee. But it was better than waking her up. When we got to proton she was still sleeping so I went to let Kendra know and see how long we had. Still about 45 minutes so I let her sleep for a bit longer till she naturally stirred. After proton she woke up almost immediately by herself before we got there. Kendra put her sock on and she was fine! We went back to RMH (to find that the internet was down) and later that afternoon we went over to Nemours for Millie's general pediatric check up. We saw Nurse Linda again and then Dr Bradfield and Nurse Paula. Millie has been constipated so we have now something extra to help with that. Whilst there a thunder storm came in and the view from the 8th floor looking over the river was spectacular. It took a lot of effort to get my husband out of there!

So after all that you can probably see why she was exhausted by 7pm! We all were. Which brings me back to this morning and it being a hard day. I am really not sure what made it so hard. Maybe it was the full-on day we had yesterday, maybe it was just the end of the week, maybe it was a lack of food. Maybe it was all of those and more. Interestingly, once she was awake again after her treatment I felt fine, despite still being teary when sitting next her when she was sleeping. However, she had also given me a fright when she was having the anaesthetic. She started crying slightly when her drip line was picked up (I think she knows what is going to happen) and she then had a sudden uncontrollable shake that took our normal anaethetist by surprise. The look on his face said it all and is one I won't forget for a while. He looked surprised and concerned and said quite abruptly "Lie her down now." We were then encouraged to leave quite quickly. I spent the next hour worrying and when we went back into recovery I asked Kendra if I could speak to one of the anaethetists so they could explain what had happened. Apparently, it happens some times when the anaesthetic goes in too quickly. I asked if they could make sure went in slowly from now on because I really can't cope with her doing that again. Kendra said that she came out of it ok and Ollie's mum confirmed that there were no problems. We all look out for each other particularly after we found out that a 14 month old is having problems when she comes off the anaesthetic. Her airway is prone to collapsing (a risk of doing so many anaesthetics) and they have to keep her breathing until she wakes up properly. She has about 8 more treatments to go. It must be terrifying each day.

Anyway, once out of UFPTI we decided we needed to get away for the weekend. I have been looking at watching the launch of the last space shuttle on 8th July but that is never going to happen with Millie. All the tickets have sold out and to watch it from the road or beach you have to be there at least 6 hours before. The launch is at half 11 so we'd have to be there at some unearthly hour and then not be able to move. It is estimated that over a million people will watch the launch! So, we won't be doing that BUT I have read that the shuttle is on its launch pad from a month before the launch date. So, we have currently in a hotel room about 4 miles from Kennedy Space Center! I booked the room at 4pm this afternoon and we left after tea. It took just over 2 hours to get here. Millie stayed awake all the way and was no trouble at all. I expected her to fall asleep and then not sleep tonight. She did however have trouble getting to sleep tonight and I think that is something to do with the anaesthetic. She had very restless legs - I ended up stroking them to relax them, which worked. But she didn't settle till 11pm. The room is ok (2 double beds again) apart from teh number of flying insects I have squashed. It must be over a dozen by now and there are still a couple on the ceiling. Not sure I will get much sleep tonight.

BUT .... No Proton tomorrow! And we are going to see some real rockets! Even Millie is quite keen! And we are away from RMH for the weekend. Back on Sunday afternoon.