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 19 June 2011

Day Twelve - A Weekend

Firstly some thank you's.

Thank you to everyone who has contacted me having read this blog. It is a bit weird knowing that I have an audience but I'm trying not to let that put me off. I would love to reply to all of your comments but I, unfortunately, have little time to do so at the moment. Hence the blog. But please don't let that stop you contacting us. We really do appreciate all of your comments and support.

And talking of support. We have recently heard of the efforts that our village community is putting in to raising funds for Millie. It really is beyond all our expectations. You are all amazing. THANK YOU!!! We will be back in a few weeks to thank you all in person (somehow!). I would also like to thank you for making my parents feel welcome and helping our eldest lead a normal life whilst we are here. That means so much to us.

It's Saturday. No Proton. Breakfast! Brunch provided today - muffins and a large amount of fresh fruit, strawberries, melon, water melon and pineapple. Lovely! Millie dined on strawberries and melon before going to play with Daddy again. I tidied up and then snuck upstairs for some peace and quiet. And to check my emails and see who was about for skyping. Turned out my sister and father-in-law were on! So we decided that we would spent some time skyping anyone we could! No answer from my father-in-law but that was ok because we tried Lizbeth andIt's Saturday. No Proton. Breakfast! Brunch provided today - muffins and a large amount of fresh fruit, strawberries, melon, water melon and pineapple. Lovely! Millie dined on strawberries and melon before going to play with Daddy again. I tidied up and then snuck upstairs for some peace and quiet. And to check my emails and see who was about for skyping. Turned out Lizbeth and Roddy's Dad were on, as well as you! I went back down to let Roddy know and we decided that we would spent some time skyping anyone we could! We started with Tony but there was no answer, so we tried you but there was no answer from you either but we did have a very nice chat with my sister and got to see Millie's cousin.

Millie was hungry again so we took her down and gave her some yogurt and half my blueberry muffin whilst we had coffee and a sit down. However, she was so tired that half way through my coffee she really looked like she was going to fall off her booster seat. I picked her up and gently bounced her on my shoulder round the corridors of RMH. I haven't bounced her for months. It worked a treat when she was very small. It worked a treat today - she was out within a few minutes. So I put her in the pram, finished my coffee and came and skyped home!!!

After talking to my parents for ages we went and found more food! Then we decided to go to the zoo as it was a little cloudier today than it has been for a while. And yesterday's rain seems to have washed the smoke away, for now. We get free passes as residents of RMH and it is only about a 15 minute drive away. However, it was swelteringly hot. We sought out shade and breezy spots wherever possible and really didn't manage to see very much. There is a train which goes round the zoo (it isn't huge but seems to have a nice selection of animals) and stops at the other end. So we did that, sat on a pier in the shade overlooking the river for a bit then decided to get the train back to the beginning. I was a bit concerned about Millie over heating, she was looking very flushed. She really wanted to see the giraffes so we did that. They have 9 giraffes including some young ones. They also have a raised walkway so you get a good view of them from giraffe height. Also, you can feed them (for $2 of course!). When we were there the keeper was calling them by name to try and get one to eat but it was too hot for them and they all stayed in their own shady spot. Millie was still happy but happier still when Duke eventually ambled over for a quick feed. Some people were quick of the mark and went and paid to get the chance to feed him. But Duke only stayed for 2 people before deciding to go and stand back in his shady spot. Not sure if the others got their money back. We'll have to come back when it is cooler and the giraffes are hungry! We then stopped in an air conditioned gift shop to cool Millie down before doing the monkeys. We bought Millie a little battery operated fan which kept her amused for the next hour. The sun had disappeared again when we came out of the shop so it was a little bit cooler and having seen the monkeys it was time to head back to RMH.

Millie wasn't too keen on the tea options tonight (sort of tacos with flour tortillas) but she didn't seem all that keen on food at all, except more yogurt! She was probably too hot. Once she had cooled down though she was so full of beans it was like another child. She is obviously feeling more settled here and is definately recognising the other families. She has a special smile for Jacob! It took us till gone 8pm before we managed to get her up to the room. She was just so hyper. Getting her changed took an age as she decided to play hide and seek (well, she told me where to hide whilst she counted!) and then she decided to inspect her shadow. At one point she was standing staring at her shadow on the wall and was almost shadow boxing. She was fascinated to see how it moved when she did - that's the investigating Millie we know and love and almost lost. More toddler traits, not only is she bossing us about but she is calling us by our names! How many more can we get through in these few weeks! In the end, once she was in bed she passed out within minutes instead of the normal hour long fidget that we have been getting lately. I think I must have her pattern wrong, so in future she will get an extra half hour of play after tea. Well, we will have to see how she is in the morning.

Father's day tomorrow. Ahh! Better write the card from Millie before going to bed.

1 comment:

  1. Epic journey - epic everything! Calling it an epic adventure hardly does credit to the stresses and emotional roller-coaster for you all. So pleased that Millie seems to be taking it all in her stride and how relieving it must be for you that Suzi is in such great hands with her very special grandparents. Do hope it continues to go well Kate. We all think of you a lot and continue to send warm wishes and oodles of love and hope across the ocean.

    Jeannie xxx

    PS Being a bit of a dinosaur with blogs, I can only get my comment to show up by using the blog URL I created in April. This is not what I'd choose to do, as its hardly appropriate and, worse, pathetic in the context of your heroism, but do hope you'll forgive me Kate. I need my very special personal Mac Adviser (AKA Andrew!) to help me out. Big hug. xxx

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