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.

Saturday 23 July 2011

Out and About Again

It's been a long week. And we are back in St Augustine. I have found a slightly nicer hotel although we are still only in one room. But the beds feel better and bigger (so far) and we can just see the sea from the window. In fact, we even have a balcony! It is only big enough to get 2 chairs on but ... it's still a balcony! We have just splashed out on some flip flops so we are ready for the beach tomorrow morning. However, looking at the state of us all I'd be amazed if anyone woke before 9am. Roddy wants to go and 'do' stuff in St Augustine but I think we would all benefit from a gentle day of beach and not a lot else. We'll have to see how we feel in the morning.

This week has been tough. Not sure why. It was almost an anti-climax getting to this afternoon. Probably because I have been so eager to count the days left and getting to the end of this week is an important milestone. We only have 7 treatments left and only one whole week. We are all shattered by the end of the week and although we recoup over the weekend we never feel as good as we did the previous monday. The same seems to apply to Millie's head. It is now looking very red and we have been advised to use the medicated cream. It has been getting redder all week and has been at its reddest in the early evening and overnight. By the morning it has been looking a lot better but not quite as good as the day before. It's the same at weekends, it is very red tonight and I expect it to calm down a bit over the next couple of days but it will soon be this red again after treatment. Hence being so aware that we only have one more full week of treatments to go. Her head looks like it has been seriously sunburnt (I guess it is all radiation) but it doesn't seem to hurt her, it just gets a bit itchy. And hopefully she won't start to peel or blister. Even if she does it should heal fairly quickly after treatment has stopped. I'm just hoping the hair starts to grow back soon as well. My little(!) brother, encouraged by his young lady, sent Millie a summer buff - it is nice and soft and she has worn it for longer than any of her other hats so I think I can say that it went down well. It is also UV protective and wicks moisture away, something I think Millie needs.

Despite it being a long week, Millie has done really well again. She has gone through her proton treatments without a mutter. We have even solved the problem with the drip line. Well, Kim solved it for us. She suggested putting one of the warmed blankets on Millie's tummy so that she had the sensation of heat rather than a cold plastic tube. It also has the advantage of keeping the drip line still and hiding it. She isn't that easily fooled though. As soon as the anaesthetist comes in and says they are ready for her she throws the blanket off, checks her line is not tangled round her legs and then gets ready for me to pick her up. She is also aware of where the line is when I am carrying her to the gantry and knows that they use it to put in her milky medicine. I think she is also aware, in some form, that she goes to sleep on Mummy's shoulder when she gets the milky medicine. She has started resting her head on my shoulder ready to sleep and yesterday I tried to lie her down before she had actually gone to sleep, she had just completely relaxed. Everyone comments on how well she is doing and how different she is now.

And that difference isn't just with the proton treatment itself. She is full of confidence and beans. Yesterday she woke up before I got round to the recovery room. When I got there she was having a cuddle with Kendra and appeared to be very happy. Kendra said she was enjoying it and was happy to cuddle Millie anytime. My heartstrings tugged - part of me glad that she is finding other people to trust (something that is a very normal and vital part of growing up) but another part upset because she is beginning to move away from needing me all the time - she is MY baby. I guess I also need to relearn to trust other people to look after her. We'll get through this first though. One step at a time. She also loves playing with Kim and giving her hugs. Just today, I have had about 3 proton staff offer to take her home with them because she is currently being so 'cute'. Little do they know! And yesterday, our once shy toddler almost threw herself at Miss Paula during her fourth oncology pediatric check up! Paula didn't expect it but was very happy to receive a hug from Millie, before commenting on how she had changed in the last few weeks. And she has changed - she is more herself now than she has been for a year or more. Which is just such a long time in a toddlers life. But what is pleasing to see is that we are seeing more and more of her personality developing despite everything, and it seems to be very like the one she was beginning to exhibit a year ago. She is going to need to go back to childcare come September - she will need it and I will need it!

We are now the senior family at proton. Jacob had his last day yesterday and they fly out tomorrow. Good luck guys. When we get back from St Augustine we will be the most senior family in the house as well. That is an odd thought. It means that everyone that was here when we arrived has now gone, which is very weird and sad in some ways. But it also means that it is our turn next. It also means that we have some responsibilty to keep an eye on the newer families and make sure the tips and knowledge is handed on. Although that might be a bit difficult as 2 of the families do not speak english very well. However, that does not stop Millie who has made friends with the only other young girl going through proton - Anabel. We know nothing about her other than the fact that she has the biggest brown eyes and the most gorgeous long thick brown hair and is very friendly. I dressed Millie in her pink Got Proton t-shirt, with pink leggings, this morning and when we got down to the kitchen we discovered that Anabel was wearing the exact same thing! They looked so good together and Millie was thrilled! Anabel is probably about a year older but is only a little bit taller than Millie. Mind you, we are finding that Millie is very tall out here and I don't know whether she is tall for the UK as well or whether everyone is just a bit shorter out here. She certainly seems to tower over other children that are around her age.

Talking of being our turn to leave soon, we have booked our flights - still a tad risky for 7 treatments left. We are leaving here on the Friday 5th Aug at half 4pm and getting into Heathrow at 10am on Saturday. We still have to do the 4-5 hour taxi ride home but we should be home by tea time on Saturday. We could have left on the Thursday but we would have had to be at the airport for about 5am and would have arrived in the UK at about 10 in the evening. I decided that those times would mess us up more than the jetlag would so we are leaving on Friday instead. I am not sure how we are going to cope with our eldest because we will be so tired and have so much to do to sort ourselves out. And so much catching up to do. We'll work on that. Let's get through the next week and a bit first.

2 comments:

  1. Glad to hear that Millie is so much more 'herself'. Love to you all. x

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  2. Just wanted to echo Dith's comment - it sounds like Millie is being a total star... and I recon her parents are too for hanging on in there! Our prayers are with you as you enter the final full week.

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