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 Eight (Tuesday 14th June 2011)

This will be a short one because it is late and we are up early tomorrow and cos we didn't do much today. It has got so late tonight because Millie didn't pass out till 10pm tonight and I needed to shower (can't do it in the morning cos she won't let me) plus all the other things that we do in the evening, like have a (non-alcoholic) drink together and catch up with life.

We skyped home and it sounds like our eldest is settling in to life with my parents. I feel jealous and grateful all at the same time. We were talking to Shavan's mother today. She has left her 5 year old daughter at home as well. They are nearly half way through their 28 treatments and hoping to be flying home later on the day they are done. It is Shavan's sister's birthday on the Saturday after they get home. We also found out that Shavan turned 3 last month. He had a tumour behind his right eye that has made him blind in that eye. They couldn't remove it with surgery so proton is being used with chemo to kill the whole tumour. Millie is getting used to the other british children, all of whom were still here at the weekend. The more local families go home for the weekend. When she found out that Shavan is her age and also has a sister the same age as hers she seemed happy to interact with him, in her own shy, up and under, sideways glancing way! Shavan has wigglies which he is quite happy to show and have used etc. Millie initially refused to show her wiggly bag but I did manage to get it out briefly to show Shavan. Shavan also has a feeding tube in his nose. And he is quite at home with that as well.

We had a slow morning, although as we were up late again it went by very quickly. Millie was tired again and grumpy and refusing to share anything that she now considers to be hers. So that is the playrooms and all the toys! She has a strop if she even sees anyone else in the playroom. I'm hoping she will settle soon when she feels a bit more secure and knows more of the faces and realises she can't have it all to herself. We walked her round for about 30 minutes today in the hope she would fall asleep before we skyped home but she didn't. However, after skyping she was miserable, tired and hungry. Which is a really tough combination when it takes time and 2 hands to sort some food out for her. She has taken to having just yogurt for breakfast so she is starving by the time we get to lunch but won't have a snack or anything (well unless it is a little cake with red, white and blue stars and accompanied with a red drink!).

We had more smoke this afternoon. This time from the north of us, coming from massive wildfires in southeast Georgia, probably about 50 miles away. It was so thick it was like fog, the river disappeared in the haze. We decided to risk a trip to Walmart to get Millie a little trike. The smoke stung my eyes but the heat and humidity combined with the smoke just made it very uncomfortable outside. Apparently the temp has been in the high 90's and the humidity in the high 80s. When we came out of Walmart we saw little bits floating about and wandered whether it was ash. When we got back to RMH there was more of it and I have since found out that it was ash. Hence the warnings to stay inside. I think they are expecting smoke for a few more days cos of the wind direction. We don't get to see the news as we don't have a TV in our room and don't have the chance to sit down and watch any of the communal ones. In fact, I have just checked out the BBC news website and realised that life is still going on!

Running out of energy to keep going on this! We are currently due for proton treatment at 11:40am on Thursday. The time could change again, we will be told tomorrow. Looks like they are having a complete shuffle following a number of patients reaching the end of their treatment. I have emailed Amy and let her know that we skype our eldest at 1pm and it would be good to be able to do that still and she said she would see what they could do but no gaurantees. We'll see. Even if we do start at a bad time it might move. We'll think of something. It is really beginning to sink in that this is going to be hard, particularly the no eating bit. I have been talking to other parents about it now that we are getting closer we have become part of the 'group'. Not that is was "clique-y" but we weren't doing it yet and we are still new here. A mother whose daughter is also called Milly but is 5, has recently set up a facebook support group which I have just joined. She started it for exactly the same reasons that I was thinking of doing one. I haven't met her yet, I think they moved to an apartment but I believe they are still doing proton so we will see them soon I'm sure. Just been reading her facebook page - she is a nurse, and Milly has had problems since birth and at 18 months they discovered a tumour wrapped round her optic nerves which can not be removed by surgery.  We really have been lucky - so far.

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