Little Feet - Long Walk

Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.

Sunday 3 July 2011

Breakfast, boys and bathtime

We had breakfast in the house this morning for the first time in what feels like a very long time. It's about 2 weeks because we weren't here last weekend. That feels like a lifetime ago. This morning I had completely forgotten where to get the breakfast stuff from and was flummoxed by a new toaster! Millie has her rice crispies and some of my hard-gained toast. Millie realised at some point that Ollie was in the playroom and that was it, she wanted to go and play with Ollie. She really is quite taken with him, and he seems happy to play with her. They hug each other and really do play with each other - it is so sweet! It is interesting that Ollie is the same age as our eldest and I think Millie is used to relating to someone of that age. Ollie does have a sister but she is a year older than him so I am very impressed with how he interacts with Millie and comes down to her level. Millie gets quite excited when he is around and then pretty upset when he goes! She, Ollie, Shevan and Jacob are the only children here for any length of time and they have all got used to each other. And the parents all have a lot in common of course. When Millie wanted to go and play with Ollie this morning we were still eating breakfast so we told Millie she had to wait. Ollie's mum offered to look after Millie for us and Millie actually went with her to the play room. It's a huge step for her and was really nice for us. We only got 5 minutes before my elastic pulled me towards her but it's a start - for all of us.

Ollie and his mum went to the beach for the day. We will have to check it out before we leave but I really need to work out the best way to protect Millie from the sun and how to protect the wigglies from the sand and sea. Millie will be in the sand and enjoying herself so I need to figure something out. We wandered over to the other side of the river (the Riverside area) to check out the Jacksonville Farmers Market. Not a farmer in sight! It is all live music and art and craft stalls. A little different to our definition but a nice way to spend a couple of hours. The market takes place under the interstate bridge and the locals keep telling us it is a nice shady place to be. Well, yes it is shady but it is also damn noisy. Mind you, it is noisy over here full stop. Even in this room with 2 sleeping bodies there is the noise of the air conditioning, the fridge in the bathroom, the trains outside, the occasional helicopter and motorbikes going over the interstate bridge nearby etc etc. I don't think I have heard silence since we arrived. With the live band this morning as well as the crowds and road noise we had to shout to hear each other when stood next to each other. Millie did alright, she walked round with me most of the time. She impressed me for lunch. There was a big range of food stalls selling lots of different stuff. I went for coconut shrimp with a marmalade dip and fries. Millie had 2 of my shrimp! I offered them to her and she took it, tried it and then munched it. And they aren't small things here. In the UK they would be considered large shrimp, here they are medium sized and fresh from the nearby coast! It is the beginning of the shrimp season so I will be making the most of that for the next few weeks.

We walked back along the river to where we had parked the car, a pleasant enough amble despite the heat. I was looking in the newspaper today and checked the weather forecast for here and London. I noticed that our low here is the same as the high there! The temperatures have dropped a bit here and they are only 32C during the day at the moment! After the market we went and checked out another shopping area on that side of the river. It is called The Landing and is right on the river edge. It was ok. No special shops or anything but pleasant enough to pass another couple of hours.

It was tea time when we got back to RMH. Millie didn't eat anything, might have been the heat might have been the choc chip cookies she'd had an hour earlier! I bet you can guess what she wanted to do instead - yep, play with Ollie! Outside this time! She did quite a bit of running around chasing Ollie and playing with the balls. I was watching her and have been thinking over the last couple of days that she is looking more stable than she was 2 weeks ago. She seems to be falling over less and is getting up more speed when 'running'. She still has quite an unsteady gait with arms out to steady her when going above walking speed and is perfecting the art of careering round corners to our horror. But she was having a great time with the boys.

I eventually managed to get her upstairs and was just sorting the stuff out to do bedtime when she came in the bathroom and announced she wanted a bath. I have been mentioning it regularly to her in the hope she would get the hit. However I wasn't expecting it tonight. She also announced that I had to put her wigglies in another bag (a plastic one to keep them dry) and that I had to hold her when she got in and sat down. I didn't think it was going to happen because it took a little while to find a suitable bag and the tape to tack it to her shoulder and to get her undressed etc. But it did and she enjoyed it. I only gave her a quick body wash and then made her hair wet with the flannel. Whilst Daddy was entertaining her with her new bath toys I brushed her hair. There were a couple of tangles that had to be cut out! There was also a fair amount of hair that came away from all over the scalp - this is probably because I don't get to brush it often. I also managed to have a very gently go at her flaky scalp which is looking very flaky. I kept expecting the hair around her scar to fall out in clumps but it didn't. This is apparently what happens, normally over night and then you find the hair on the pillow. It hasn't happened yet for Millie but now that I have removed the tangles and old loose hair I'm expecting it all to fall out!

We may have to encourage more baths. She was more relaxed when I put her into bed and her legs didn't twitch. But that could also come from chasing the boys and balls!

Hopefully we'll make it to the zoo tomorrow. If not we will go back over to Riverside and find the large park with swings and ducks!

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