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.

Thursday 16 June 2011

Day Two (8th June 2011)

Today has been a quite day. We went for a walk this morning, literally round the block. The river runs very nearby although you can't walk along it as it is prime property land. However, there are little 'parks' - a bit of greenery and a couple of benches - dotted along the edge which you can use to peer into the water. Apparently there are manatees and dolphins. Today all we saw was brown soup! Millie fell asleep as we re-entered the building, I think it must have been the fact that she felt cooler again with the air conditioning. We took advantage of her 2 hour nap and finally unpacked everything and put it all away. One of the rules of the house is to make sure that your room is clean (I am thinking this in an american accent!) and it gets checked weekly. Not great for us! But I did manage to get my husband to clear his electronic gadgetry off the window sill  and into one of the few drawers we have.

Lunch was from the communal fridge and ended up being hot dogs in tortillas wraps with 'cheese' and potato salad. We have taken to drinking iced tea which comes in huge plastic bottles and is always available in the communal fridge. We really are being looked after here. The kitchen is huge but then there are 30 family rooms. RMH provides loads of food for everyone. There is a communal fridge which is stocked with all sorts from last nights left overs to jars of jam and mayo to drinks of iced tea or juice. There is also a communal pantry with loads of tins and jars and packets of stuff from soup to biscuits to breakfast cereals. And there is a milk fridge and a communal freezer and a freezer for ice cream! In the kitchen there are various things always out on the counters from bread to fruit but mainly cake and/or biscuits. We all have our own smaller cupboards and fridge space so whatever is not in one of those is for anyone to help themselves. This evenings meal was nachos with mince and a large range of extras - american style. It was prepared by a very large group of people, mainly women, who just turned up at half 4 and started getting it ready then left again. I have no idea who they were but the food was good - even for a non red meat eater!

The afternoon was spent relaxing. Millie played in one of the play rooms and is slowly getting used to being here and having to share with the other kids. She has started watching them rather than hiding from them. My husband and I are slowly getting to know other parents. Many are from the UK (here for proton therapy) but there is also a family from Mexico and many from within Florida. We met a family from Orlando today, just before they went home. They are back in 6 weeks and offered to help in anyway they can. They were here with 2 of there 4 children. Lily, 4, who had just had an operation to correct her crossed eyes. And Mason, 2, who had been suffering with chronic ear infections for about 9 months and had just had an operation to put tubes in. The RMH offers accommodation to any family that has children being treated in about 5 specialist hospitals in Jacksonville. It is an amazing facility.



We skyped our eldest this afternoon at about 1pm, 6pm UK time. So she was back from her after school club and getting ready to eat tea. She was so excited to see us that all she did was lean into the screen and make a lot of noise! It was good to see her looking so excited and normal. My parents told me that one of our neighbours is doing a sponsored bike ride in aid of Millie and they are putting posters up around the village with money collecting tins next to them. I can't believe the support we are getting - Thank you everyone.

Anyway, it will be another busy day tomorrow. We are thinking of being brave and going to Walmart in the morning! And then we have Millie's oncology "meet and greet" at 1:25pm across the road.

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