Another Weekend Away

We didn't get the chance to skype or talk to our eldest today. We try every day but it is just really difficult with Millie's treatment time. However, we are changing times next week and we will be earlier. I still haven't worked out whether we will be able to skype but it will give us more time in the afternoon. There have been a lot of children finishing their treatment over the last couple of weeks, including Ollie and Brycen today, and not many starting. Next week there are only six children that will need an anaesthetic instead of the 14 who did two weeks ago. We will also be moving to the blue gantry which will be a shame as Millie has got really used to the whole thing. I am worried that she will take a dislike to the change and things will be hard again. She was so good today. She even said, as we were walking to Kendra's room, "Milk medicine go in wiggly and in my tummy". I talked to her the other day about the fact that the medicines that go into the wigglies then go into her which is why she can feel it. I have only just realised that since talking to her about it she has been ok with the anaesthetic. Wow! I hadn't twigged that until just now. She's a bright cookie - taking that onboard and accepting it. All the proton staff are impressed at how well she is doing now and how different it was 3 weeks ago. We are impressed and slightly unbelieving. All we have to do now is crack the drip line phobia. She is absolutely fine with everything except for the drip. She has a real bad wobble when it is attached and we really don't know why. We think that it pulls on her line and that it feels uncomfortable. But I'm not totally convinced. When it is attached the line has to be moved so that she can't see it. She covers it with her top and tries to hide it. She is slightly better if we give her the job of holding it, especially when we go into the gantry. I think we will have to talk to Kim about it.

Back to our times for next week! On Monday we have to be there are 10:15 which is an hour earlier. But Sarah finishes then so on Tuesday we move an hour earlier again. On Wednesday we are back to about 10am because they have a meeting first thing and treatment starts after that. On Thursday we are back to 9am ish but it is Jacob's last day so we then move to 8:15am!!! Our whole day is going to have to shift forward by about 3 hours in the next few days. The whole process normally takes about 4 hours from leaving RMH to getting back. On Friday we will have to get up between half 6 and 7 - a time we have not seen for a few weeks. But we should be done by midday so we will have a good 3 hours extra in the afternoon. Not sure what we are going to do with ourselves. As far as anyone has been able to say we will be keeping that time for the rest of our treatment, although it does depend on new arrivals starting treatment and what position they need to be slotted in. We are going to have to make loads of changes to our routine. We won't be able to go over to Shands hospital and have our daily salad for lunch, although I think we might have to check out their breakfasts! We are going to have to move all of Millie's therapy sessions which are all early in the day. They will have to be done in the afternoon now which means that Millie may still be wobbly from the anaesthetic but at least she won't be hungry! We are goign to have to go to bed earlier - all of us. That routine might be hard work as currently Millie gets to play outside with the other kids after tea. She won't be able to play for as long which would be hard if Ollie was still here but as he isn't it might be easier. Humm - change!

We haven't spent much time at RMH this week. On wednesday night we decided to go out for tea, spurred on by discovering that RMH was having problems with its water supply because a nearby workman had dug through the mains water pipe. The local hospitals were also affected so not a good move. We were told not to use the water for drinking, cooking or brushing teeth as it could be contaminated. It was also recommended not to wash the ill kids with it, although it was fine for the adults. Bottled water has been provided but it's not easy brushing your teeth with a cup of water. Tests were done on the water and this afternoon the all clear was given. We were quite glad not to be around much. As I said, on wednesday we went out and ended up at The Cheesecake Factory which has been highly recommended by many people. It does do 10's of different cheesecakes but it also does some very good main courses and other normal stuff. However, there is nothing normal about the menu - it is huge. They must have over 100 different dishes available. The menu is about 20 pages long! It took ages to choose. I had shrimp and fries and got some pasta for Millie working on the assumption that she would have a couple of my shrimp. The shrimp were massive - I have never seen shrimps that big. They came in a breaded batter of some sort and were so huge I assumed that there were 2 shrimp in each parcel but no ... just a single huge one. And there were about a dozen of them. Millie ate 4 as well as loads of my fries!! But no pasta! We went with Ollie and his mum and sister. It made a difference having company. We will miss them when they go.

Last night was Family Fun Night at the Proton Institute. Chrys, the artist in residence, has been asked to do something and she came up with a fantastic project. She put down 3 very very large sheets of paper next to each other and got the kids to done aprons (with "got proton? on) and plastic shoe covers. They then wheeled huge rollers around the paper. Each roller had been covered with foam shapes and dunked in paint. There were also poles with round flat ends that foam pieces could be stuck to and turned into giant stampers. Millie had a fantastic time (with Daddy!) and lots of photos were taken of her. We have said that we are happy for them to use the photos in any way they need to so that they can get more funding for pediatric support. Photos attached.

Tonight, we are in a Hotel Lodge (whatever that means) in St Augustine which is only an hour down the road but it gets us out of RMH for a couple of days. A change is as good as a break. We are right next to the beach!!! We can't see it from our cheap 2 bed small suite with a built in 'kitchen' but we have been to see it and it is definately there. We have to walk past all the other rooms and the pool and then down a wooden walkway that goes over the dunes and then down some steps and wahey - the beach. And a beach for nesting turtles at this time of the year. We went down to have a look after we had got everything out of the car and before gettign Millie in to bed. It was dark but we could just about see by the light of the few dim lights around. Because it is a turtle nesting beach they are not allowed to put up lots of bright lights at this time of year as it confuses the mother and baby turtles who, if I remember correctly from my turtle conservation days, use the reflection of the moon on the water to get to the sea after hatching. Tomorrow we hope to get up early, find breakfast from somewhere and be down on the beach before it warms up for a bit and then go and check out the rest of St Augustine. We still have to jump the biggest hurdle of protecting Millie's wigglies from sand. We have come armed with plastic bags, surgical gloves, tape and plastic patches. We are not sure which combination will work best for Millie but we will have to make sure she has lots of fun so that we can do it again.

It'll be nice to have a weekend doing something else. Then when we get back to RMH we will only have 12 treatments left - that is 2 weeks and 2 days. But first, the weekend.


PS - For those interested, I have managed to get a donate button working for Millie's Future Fund, see Donations page on the right. It is clunky and uses paypal. It does take cards but I have to pay for the privilege. It also takes you away from the site. I will try to improve things over the next few days when I have some time. In the meantime - Thank you.


PPS - Thanks you to Millie's nursery who held a fund raising event on Thursday. We are very grateful. Millie needs to come back and play!!! I'm sure she will love the place now that she is her old self again. And you won't know what hit you! But I will get some much needed peace. Thank you.