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.

Monday 18 July 2011

A Bit Better Today

Today was a bit better. we got up and packed whilst Millie slept this morning. We then managed to get her up and drove to the cafe next door to have breakfast. Back to the room, changed into beach gear, threw everything in the car and checkout .... then we went to the beach!!!!


The beach is massive. It stretches a long the coast for as far as the eye can see - in both directions. Some people drive onto the beach which was a bit weird for us. But the important thing is that Millie had a really fun time digging holes, making sandcastles, jumping waves and collecting shells. We managed to wrap her wigglies up in a purple plastic surgical glove and tape the glove across her chest. We spent about an hour and a half there. It was hard work getting everyone changed out of beach gear, apart from the reluctant toddler causing problems we all had to share the gents loos next to the hotel pool. We had no access to our room because we had checked out.

We tried to go back to the cafe next door for lunch but it and the car park were full. So we drove and drove and drove looking for somewhere that looked decent to eat in. Hard work from a moving car. Millie ha a cry about leaving the house and then fell asleep. She must have had a good hour of sleep whilst we looked around for food. Eventually we drove in to the centre of St Augustine and ended up having hot dogs! We then pottered about the shopping streets for a bit before going on a cruise down the intracoastal waterway. The cruise was just over an hour and a nice way to relax. Millie kept active throughout the cruise! There weren't very many people so it didn't bother anyone, especially as they were all outside and we stayed inside. The windows were open, we could see very well and it was in the shade. Why be outside? We saw some dolphins!!!! They didn't come very close but we saw some - finally!

After the boat ride we went back to the place we had eaten in last night. Unfortunately, the food wasn't quite as good as last night so I asked if there was a different chef. No. But the waiter apologized and took my comments back to whoever is in charge and came back with a piece of key lime pie in a box to take away! I've just eaten it - it was very nice! We came back to RMH after eating and arrived here at about 9pm. I managed to get Millie bathed (another glove) to remove the sand and snuggled up in bed within the hour. Gotta be a record for us. She is currently wearing her Po hat because she was cold when she came out of the bath. She does get cold quite easily so I have started keeping a warmer hat to hand. She hasn't moved since she fell asleep 2 hours ago! I have managed to cream one side of her head but I can't get to the other side until she rolls over! She has lost even more hair. The patch on the top of her head is slower creeping down the right hand side as well. The poor thing has very little hair now. But she still has her smile and she charms anyone she meets.

We start our new schedule tomorrow. We have to be up an hour earlier than we are used to. This week is going to be tough. But only 2 more full weeks to go plus 2 days. Only 2 more weekends to get through. And a list, as long as my arm, of things we still want to buy!

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