I cried a bit. I wrote a bit. I talked a bit. I am feeling a bit better and thank you to everyone who has offered their support. It means a lot to all of us.
Millie is doing well. Her head has got really red and is giving off a lot of heat - just like bad sunburn. It is reddest around her left ear and towards the back of her head. She has also started peeling - like when you get bad sunburn. It is the small flaky type of peeling rather than lumps of skin and it sort of rubs off. She has got quite itchy with it and I am having to keep her finger nails very short. I have discovered that washing her head with a bit of natural sponge helps to remove the dead skin cells and stops the itching for a bit. I can imagine that a cool sponge over a warm itchy head might be quite relieving as well. The medicated cream helps keep the itching away, however I have also discovered that the Dream Cream does as good a job, if not better. So I am now sort of alternating the creams, and washing her head often.
We had a very late treatment time today - 11:30am. I think it is the latest we have been and we aren't the last, there are 3 boys after. This morning, despite a planned late night and no alarm clock going off at 7am, she woke up somewhere round half 7. She played and muttered and lay down and played and muttered till about 9am when I finally decided we had to get up. She seemed grumpy soon after getting up and complained that she was hungry. She knows that she can't eat until we have seen Kendra so she hurried us out of the door! I had to keep delaying her by doing 'one more thing' and getting ready slowly otherwise we would have been there an hour early. As it was we were 15-20 minutes early and she was determined to go straight round to recovery. Not even the possibility of making a butterfly for Kim with Chrys could stop her, she paused briefly but only briefly! Fortunately, they were running early so we didn't have long to wait before it was time to 'get her numbers' and 'hook her up'. She knows what needs to be done before we can go and listen to music and have the milky medicine but she doesn't yet understand that the timing is dependent on other things. So she was trying to get things moving faster at every stage. When the anaethetist came in to check that everything was ok, Millie took her blanket off and said 'Ready to go!' and almost got off my lap to walk to the gantry! I had to delay her by a few minutes because they weren't actually ready! She was just hungry! The poor thing. The last couple of days she has gone to sleep laughing at Steve the porter (very important bed pusher and more). We have also spent about 4 hours in the building each day this week because Millie likes to play afterward and we don't have the energy to drag her away. It means she looks forward to coming back so we don't mind.
We have had the chance to get to know Gina and Kendra a bit more over the last few days. They have both been working there for 2 years and they work really well as a team. They also know what they are doing and are very good at it. I have watched them manage the many different kids and I have seen them manage the many worried and frustrated parents. They have a policy of letting the child sleep for 20 minutes post treatment before calling the parents. Being a parent and waiting for that call is hard and I know I wanted to be with Millie as soon as she was out. But the policy is there for a reason. They need the space to make sure that the child has come off the anaesthetic ok and is sleeping peacefully. There have been problems that have needed intervention and that really is the worst time to have a parent around. And some of the children 'fight' when they come back, even though they are still asleep, and need some gentle restraining. Apparently Millie does sometimes and I wouldn't want to be there watching them restrain her, gently but firmly, so they can monitor her and stop her hurting herself. From experience, I have learnt that Millie recovers quicker if she gets a good sleep afterwards. If she wakes up before her 20 minutes then she is so groggy and grumpy for the rest of the day it is just horrible. In the first few weeks we would be rung after 20 minutes and would go round but I would have to be quiet because Millie would wake when she heard me. These days we don't get rung until she is stirring. She is happy enough, just, that she no longer needs me to be there the instant she wakes. And all of this has been gently managed by Kendra and Gina! A big thank you to you both for making this much easier than it could have been.
Millie is very unaware that we are nearing the end of our time here. I think it is going to be quite a shock to her when we get home. This has been a large part of her short life and she has made many 'friends' amongst the people that we see most days, both in RMH and UFPTI. She has become very forward and inquisitive, if she vaguely recognises someone then she will stay and chat. A long way from how she was when we arrived a few weeks ago. However, her stubborn streak can be a real pain! It can take a long time to get her moving from somewhere once she has decided that is where she wants to be. It has been a struggle all day. She has also developed the habit of almost parroting everything we say. She doesn't quite copy as she is very good at turning the sentence round to mean something slightly different, for instance using 'you' instead of 'I'. AND she has become damn good at asking difficult questions - the subject heading being one (of many) today. She was given a dried starfish at one of the hotels and she was looking at it this afternoon when she suddenly came out with the above question. She basically put together the information she has about stars, including the song Twinkle, Twinkle and came up with 'like a diamond'. However, she knows it is a star and that it is not the same as a diamond so she asked why they are alike. I saw her thinking it through but didn't realise where she was going with it. To be honest, I am pretty impressed with her logic. I have no idea what other children do at this age but I don't believe our eldest would have thought like that, then or now. I did, of course, tell her about sparkly diamonds and stars. So she should now have a better understanding - till the next question! Oh, and I mentioned that the star was really a starfish and normally lives in the sea. Guess what she then wanted to do - yep, put it back in the sea! So then followed a whole other conversation!
I have started tackling the questions about what we do when we get home and have the beginnings of a plan. I have sent some emails to the UK medical team and have had a speedy response. We will be going to the oncology clinic on the first Wednesday we are back so that they can check her out, review her meds and review her rehabilitation. Our oncology consultant is suggesting Millie get an MRI scan 12 weeks after the proton treatment has finished and then every 3 months after that. That one is going to be tough. We have also been told that her line can be removed as it is not needed once this treatment is finished. Yippee! Unfortunately, we have just been told that they can't fit Millie in for the surgery before we leave next week which is just a real bummer. We were really hoping that we could leave here without her line and she could get back to a relatively normal life without the difficulties associated with caring for her line. I'll just have to see how quickly they can do the op at home. I feel a bit better knowing more about what happens next.
We have 8 more days here and 4 more treatments! So close ... oh, to be in my own comfy bed at home.
When you have Little Feet and it's a Long Walk, you take One Step At A Time.
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