Only a few more days

Weekends are difficult without the routine of proton. Yesterday we didn't do much - just hung around the house taking it easy and thinking about what we need to do before we go home, all the practicalities. We did pop out briefly to see if we could find any manatees in a spot that was recommended but we didn't have any luck. It was very very hot though so we didn't linger for too long.

Today we went out for breakfast and didn't get back till tea time! We didn't do anything particularly exciting. We breakfasted at the Waffle House, for the last time, not just because we are leaving in a few days but because the last 2 visits haven't been as good as the first visit. The hot tea wasn't as good, the waffles weren't as good, the service wasn't as good. We keep going back to places and discovering they weren't as good the first time - maybe we should learn something!

After breakfast we decided to do a quick trip to one of the malls and check out some bits and pieces that we had been thinking of picking up. I guess you could call it souvenir shopping or you could call it treats to make us feel better! The other day we splashed out on an iPad - something we wouldn't dream of owning at home and there is no way we could justify the price normally. But here, well ..., I'm not sure reality exists at the moment. It feels like a very alien life. It wasn't quite a spontaneous purchase. I did have a play on Kim's iPad at proton (she uses them to occupy and distract the kids) and was amazed at how easily Millie figured out how to use it to do some colouring or a jigsaw. So I decided it would be a good 'toy' to take to hospitals with us over the next couple of years. I can also use it as an educational tool for both kids. And, whilst watching Millie play I decided that it could be used to give her practice at finger and hand control. I have already downloaded loads of apps on to it and Millie has been enjoying them and asking for some of them. My husband downloaded a talking giraffe onto his phone before we came over here and that has been a consistent and regular distraction.

The other thing the iPad could be good for is encouraging Millie to keep checking what is on her right hand side. The occupational therapist was watching Millie draw last week and asked if she always draws off to the left of the page. I think she does a lot of the time. This is apparently due to "visual neglect" of the right which is due to the tumour. We knew she had problems processing information on that side but didn't really think about how that would effect her on a daily basis. The therapist reckons that, when looking at a piece of paper directly in front of her, she can't 'see' the right hand side of it. However, she can be trained to turn her head to see it. There is a similar thing going on with the whole of the right hand side of her body, in that she sort of forgets to use it. BUt with training and lots of prodding she will relearn how to use it. Apparently, here, visual neglect automatically qualifies you for occupational therapy. We'll have to see what we get when we get back home. I'm already prepared to battle for a continuation of her intensive therapy.

We are so close, with just 2 more treatments to go. Millie is doing okay. She seems to be a bit more tired than before but that could just be the fact that we are all run ragged and nothing to do with the treatment, at the moment. She slept in the car, with engine and air conditioning on, for about an hour today. One minute she was climbing into the car seat by herself and the next she was asleep which is a shame as we were only going about 5 minutes down the road american style, i.e. by car. We changed plans and let her sleep. Her left ear is looking very raw and sore on the top. She keeps scratching it and making it bleed. She also says that it hurts. I gave her some pain relief this morning in the hope that it would cheer her up, not sure it made any difference. I think I will see if they have any better cream for it tomorrow. The rest of her head is doing ok. It is very dry and I put the medicated cream on about 3 to 4 times a day. When I get the chance I wash her head and apply some of my magic cream. I have to wash her head because the medicated stuff forms some sort of barrier which stops the Lush cream sinking in. Millie has started washing her on head - not sure how good an idea it is, it tends to involve copious amounts of water!

We get the 'talk' tomorrow from Dr Danny. The talk about what happens next. Not sure either of us is prepared for it. Not sure what we are expecting to be told. Not sure how worried to be. We were hoping that he could arrange for her line to be removed before we go home but it doesn't look like that is going to happen. I have asked everyone concerned with Millie's care and have been told it isn't possible in the short time we have. Bum! I even emailed Dr Danny at the end of last week in the hope he could pull some strings. He was away at the end of last week but he still had a look and emailed me back on the Saturday. It was a very nice email but it still said no! He did explain why it wasn't possible - basically a short staffed surgical team and very little time between her last treatment and us leaving. I can't decide whether I am surprised to have got an email from him on Saturday. It is the sort of guy he is. We are so grateful that he has been looking after Millie.

Well, despite being very keen to come home we still have loads to do before we can. One of them being to prepare the presentation for the proton lunch on Wednesday. Guess that is what we will be doing tomorrow! We also need to start thinking about being home and what we are going to do for the first few days and on through the summer holidays. Not sure I can think past tomorrow at the moment and we have a busy week - Hailey's last day tomorrow, our last day on Tuesday, proton lunch on Wednesday, pack on Thursday, leave on Friday, collapse on Saturday (with a 5 year old we haven't seen for 8 weeks)!
We'll be home soon! Yeah!!!