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.

Tuesday 21 June 2011

Week Two - Day three of proton.

It is getting later and later as I start to write these emails but our days are starting later and Millie is going to bed later to fit in with proton.  However, this is probably too late as I could so with some more sleep (on the dodgy bed). It will also make it difficult at the weekend because we are not able to get up early enough to go anywhere in the cooler hours. It heats up so much here that, unlike at home when it starts to cool again in the late afternoon, it just gets hotter till the sun goes down. And even then it takes all night to cool down. Everyone is hoping for cooler weather soon. The forecast is reckoning there is a chance of thunderstorms from Thursday onwards and the temperature will drop. The official recorded temp today was 99 degrees F - hot! It really is too hot to be outside, we are grateful for air conditioning in all the buildings and the car. Just getting to the car is hard work, then when you open the door you get a blast of very hot air. I send my husband out first to turn the air conditioning (and engine) on first before I get Millie in. As she sits in the back the cold air doesn't get to her so well so we do have to be careful she doesn't overheat. She has occasionally fallen asleep in the car. At home we would leave her there for 20 minutes to get some sleep. Here you have to leave the car engine running to keep the car cool enough after parking in the limited shade. So much for being green. It really is quite difficult here. But more on that at another time!


Right, week two, day 3 of proton. Millie woke up after 9am this morning. We are definately getting later. I managed to get the meds into her without any problems. She decided last night that she wants the "not nice" one (Clobazam) in a spoon rather than the syringe. That's ok, other than the fact I still have to measure it out and then have to put it into a spoon. It is only 1ml but it is really thick and our syringes keep sticking in this heat or something and I keep squirting the stuff out by accident and it can go a long way! I can understand why she prefers a spoon cos I keep squirting it into her mouth! The spoon is working, for now, so it will continue to be used. Could just do with a better/quicker way of accurately measuring out 1ml, twice a day. We have almost run out of syringes so I asked Amy (our nurse at proton) where I can get some more. She is going to order a box and it will be delivered directly to the house!

Anyway, once the meds were it, I managed a quick shower whilst Millie was distracted with rolling coins on the floor. We gently went downstairs, took it in turns to grab a quick sneaky couple of bites to eat, and then headed out to proton. Millie wasn't keen again. Possibly because we had decided to do the drive ourselves and we were a bit nervous about that and about starting a week of proton. Fortunately, when we got there the 'artist in residence' was just setting up so Millie was able to do some painting and drawing. Unfortunately, Chrys, only does a few hours a week but it might be a distraction sometimes. We had to read Winnie the Pooh books again and just as it was getting quite difficult to keep Millie happy we were told we could go round to recovery. Kendra suggested that in future we go into the recovery room when we arrive so that Millie can play with their toys and begin to feel more comfortable. I'm not sure they really want us there for the full hour but we will probably move after about half an hour in the waiting room. Hopefully the change of scene (and toys) will keep her amused and relaxed. We found Jacobs favourite toy and put it on her bed so she could play with it whilst the obs were done. She was fine with them but still put up a fight when Kendra wanted to attach the saline drip to a wiggly. The anaethetists then turned up in force (about 3 each time). I think they want to make the patient feel more at ease when in the gantry by all getting to know her and walking in with us. I asked if there was any music playing so one of the anaethetists went to check for me. We walked in, I danced, Millie fell asleep without a struggle. I've still not had the chance to look around the room though, I seem to always have my back to it!

We were called back after about an hour and 15 minutes. She had already slept for 20 minutes and she slept for another 40. When she woke she complained about the toe monitor on but once that had been taken off and I had put her sock on she was fine. Our daughter has the strangest concerns - she sleeps with her socks on because she doesn't like to have bare feet. I have no idea where this came from but it is a small issue that I'm sure she will grow out of - eventually. She had some blueberries to eat and 2 yogurts (normal coloured ones). We saw Dr Danny who asked whether Millie had had any headaches, and how she was after Friday's proton. He mentioned that hair loss would start to happen in a week or so. He also saw Shevan and pointed out that his skin was starting to peel and then signed the notes to get him some cream. We aren't sure yet when peeling will start - it sounds horrific. Losing hair is quite localised and happens where the beams pass through. It can take months before any hair will start to grow again and it may never do so.

We left and came home. I remembered that there was supposed to be a hairdresser coming in today. However, nobody had signed up before 3pm so she wasn't coming in. I had been told half 3 and it was only 10 past. My hair desperately needed some attention so the manager on duty rang her and she came out just for the two of us. However, once here a queue started forming and she had to turn people away because she had made other plans. We are going to make sure that there is a big notice up before she comes in next month. And the list is available to sign the day before. But, yes, I did have my hair cut and it is quite a bit shorter than it was. It should be much easier to manage. People have commented on how nice it looks and I told them about the hairdresser that comes to RMH and nobody knew. So we definately have to make sure that families are told. Oh, and she doesn't charge by the way! She has recommended using Moroccan Oil whilst out here, to protect the hair from the heat. It would also be good for Millie who still won't let me bath her let alone wash her hair! Millie's scalp is looking quite dry and itchy at the moment - a good wash would do it some good. But if not then I will try the Moroccan Oil, assuming she is allowed it during proton treatment.

After the haircut we had to go over to the Aetna building (the one that is within walking distance but we have to drive to) for Millie's first occupational therapy session. My husband lost the car keys under a book on the bed (!) so we were 10 minutes late. But we still got the half hour. To start with Millie got to sit on a big swing with the therapist. Not quite sure what that was about but Millie seemed to enjoy it. Maybe it was a 'bonding' thing or a relaxation thing. I think Millie just wanted to play! Eventually Millie got to do a puzzle, some bead threading and some drawing. Haven't quite worked out how this is all going to help but she was better at the beads this time round. I suspect the therapist was working out what Millie can do, which is a shame because that was what the evaluation was about and we are probably going to see a number of different therapists. Oh well, Millie enjoyed it and I'm sure it will help somehow.

Pizza for tea and tonight it was too hot to play outside afterwards. So we played inside. I had troubles getting her up stairs but she eventually passed out!

Day four tomorrow. Same time as today. Not sure we will be able to skype home again but we are thinking of trying to ring on the local cell and using the international dialling code that makes it cheaper. We will have to do it from the waiting room at proton.

Only 30 days left!

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