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 17 July 2011

Terror Toddler in Florida

Well, we made it away from RMH but I wouldn't say we are having a "good time". We have spent the day at each others throats, and that includes Millie. It has to be the combination of many things but it is probably a miracle that we are all still in the same room and no one got injured. I finally had to get everyone up this morning at 9am otherwise we wouldn't have done anything and we have to get our day back to more normal times for next week. Millie woke up grumpy, my husband woke up grumpy (something to do with the air conditioning unit keeping him awake all night) and within 20 minutes I was fed up with them both and decidedly grumpy myself. We had very little idea where we were going for breakfast despite being given a recommendation (no food outlet onsite). We finally found the place which is about 4 miles away and was only average in food and serving etc. We won't be going back. Millie got really hungry and started having a loud strop, which I understand, but was just extra hard to handle today. Once she had food she calmed down, a bit.

After breakfast we decided to go on the train/trolley tour around the town. There are 2 tour companies - one had a red 'train' whilst the other does a green 'trolley'.You basically sit on it and go round the town and get off and on as many times as you want at any of over 20 stops. We went on the red train because that what Millie decided and, today, there was no reasoning with her. We would probably have done the green one, if we'd had the choice, as it seems to have more buses and therefore you only have to wait a few minutes for the next train. We managed a few stops, including the old jail which had a very good tour guide, before we needed to eat again and then get on the "last" train round to get us back to our car. It is an hour and half tour if you stay on. We had managed the first 20 - 30 minutes so had to sit on the uncomfortable bench seats for an hour. Millie actually fell asleep next to me so I hauled her onto me and she slept for about 45 mins.

After we eventually got back to the car and purchased a few more souvenirs we walked along the road towards the 'fort' and along the front. There are lots of things to see and do in St Augustine. The town claims to be the oldest european settlement in northern america, about 500 years old. It was settled by the spanish and attacked by pirates because the spanish were taking boat loads of treasure back home. It was also burned to the ground by Sir Francis Drake in 1586! So there is a lot of spanish influence (e.g. fake houses standing where the originals were but are no longer because they fell into disrepair and were knocked down), lots of pirates and 'old' american history. We found a nice seafood place to eat that had shrimp on the kids menu. Millie had shrimp and fries and ate all her 6 shrimp followed by some bread. I had crab cakes this time which were ok. The best bit was the drinks - 'frozen' non alcoholic cocktails. I had a pineapple and coconut one - yummy!

I think we all felt a bit better after eating. Today had been very stressful. We didn't know where we were going, where to eat etc etc. Being in a strange place is hard in normal circumstances. But on top of everything Millie has decided that she needs to exert her own preferences. I have lost count of the number of times I have had to tell her not to do something. I have been developing my own 'discipline' method that has been working with her. If she doesn't listen to me and stop doing something then I tell her I will count to 5 and then she has to do whatever or I will do something. For example, she regularly gets distracted climbing the stairs at RMH and I have to encourage her to keep moving. I give her the choice of walking up herself or me picking her up. Because she is so determined to do everything herself my normal threat is to do something for her. Up till now it has worked 95% of the time (it is a matter of coming up with the right consequences!) but today I must have used it over 20 times and had to follow through 2 or 3 times. She is obviously pushing her limits as all normal toddlers do. I know it is a development phase and I know it won't last long and I know she has to do it. And a part of me is pleased that she is doing it. However, a large part of me is wishing she wouldn't so it for another 4 weeks. She has also discovered the art of screaming and crying loudly in an attempt to get her way. It hasn't worked yet and gets ignored which is funny when she works out it isn't working but still a badly times annoyance. She has also started to be more physical, so hitting, kicking, pushing away, throwing things etc. Again - normal but please, not now Millie.

The next couple of weeks are going to be hard. Having a terror toddler on our hands is going to make it very hard. We are nearing the end, although we still have 2 weeks and 2 days to go. I have seen others reach this stage and start getting really stressed and fed up. I think it is because we are so close and yet a very long way still to go. Also, we are beginning to think about what happens next and we currently have no answers, and may not for a long time. That is definately beginning to take its toll. Not quite sure how we will survive yet. Will work on it though.

In the meantime we ARE going to the beach tomorrow very early, breakfast will be next door as soon a s they open at 7.30am. Yeah! Right! We also have to check out of the room. Then I want to do a boat cruise, we have to do the pirate museum and we have tickets to another museum  that we were going to use today but didn't. Then there are the different shops that we would like to window shop in, preferably without Millie but that won't happen. Ho hum!

Nearly there. One step at a time.

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