Tuesday, 10 July 2012

Tuesday 10th July

I am writing this on my phone as the only Internet connection I have as we made it to Filey on holiday! Whoop, whoop! Well a lot has been going on the last couple of weeks, so little time for blogging! Harry has at least only been to hospital for platelet transfusions abd his assessments in the radiology department, which has led us to see the brand new bexley wing at st James'. Harry has been up abd down, he can be fine and then just lose it over the slightest thing. In the park with his friends it was because I had not brought 3 types of drinks with me! How cruel! I guess in hospital he got used to saying what he wanted to drink and because we wanted him comfortable he had a variety! When limited to 10ml of drink per hour he would divide this up between 3 different drinks! Well now he's in the real world and a long way from that poorly state that he has been in the Diva demands are being kept in check! Callum was soooooo excited about having Harry home, but he too then became sulky at the prospect if sharing mummy abd daddy abd toys! However, all this was expected. It's just not always so easy to manage in reality! Anyhow, Harry is due to commence his radiotherapy on 30 th July. This is 15 sessions, not weekends. The first is a dummy run! He has had a full ore assessment and now has 4 dots tattooed on him to provide a clear boundary for the radiotherapy to be targeted. He should manage to lie still for the short time needed so an anaesthetic is not needed. This will make the trips shorter abd less intrusive into the day. Again, we have learnt about a whole host of side effects. Harry's spine abd kidney will be targeted within the area. This means he is likely to lose an inch in height. His kidney could very well pack in, just as it was saved during his operation to remove his tumour it is at risk of damage again! Sickness and tiredness are immediate likely effects. So just as we are building Harry back up again, he will be hit again by more significant treatment. This is what is so hard to endure for all of us, as bystanders we watch Harry become well abd energetic and have an appetite again to becoming a shadow of his former self for a while to 'make him better'. Obviously it is awful for Harry himself to endure the side effects of each treatment. Onwards though we have to go! Harry missed his induction afternoons at school as he cannot mix with large groups as his immunity is so low. However, he had a special visit after school, he met his teacher mrs Helen abd his friends James and Natalie who started last September held his hands and showed him around the school. This was so sweet to watch! I think it made him feel more confident about starting school. He will see Natalie and James in the playground. Hopefully he'll make new friends soon enough, but I don't know the dates of when his last 6 months of treatment commences as this will be around September too. So, The charity summer ball, this was last Friday and was an amazing success! It all ran as it should do. I had a technical hitch when the person bringing the projector needed for my presentation got stuck in the floods, however Ken Dale from church cane to my rescue and set it up, with sound from the band's system. Thank you Ken! Thank you to everyone who came too. We had 28 prizes for the raffle, which raised £843 on the night. This was fantastic. With donation, profit from the sale of ball tickets and the raffle we have raised in excess of £3000. Not bad for a ball that was created to have fun and raise a little! Oh and fun it was! Everyone seemed to have a good time, the music with Elvis, Soft Touch abd a DJ to finish gave great opportunity for dancing. The dance floor was kept full, always a good sign! Once formalities were over I could relax abd join in the partying too, as could Jenny, Ayshea, Claire, El abd Steph. Once at home I will get some pictures up here! So, yes we are in Filey, in a caravan funded by Candkelighters. We were talking about super heroes today abd Harry said that Candlelighters were super heroes because they gave us this caravan for our holiday and looked after them. It is a superb idea. We would not have booked a holiday for fear of losing the money as we had no idea if Harry would have been out if hospital, also since Harry is still low on his immunity an infection could strike at any time leading to a hospital admission. As said if we couldn't make these dates there is always a reserve if people who can keeping the caravans full! So yes it is raining! We managed to get to the beach yesterday, today we did go to the sealife centre. Harry's best but was the crazy golf with a pirate theme! I hit a hole in one, but nobody was watching so don't believe me! Hopefully we can get to the beach again! The caravan is spacious and we brought the boys Lego and DVDs so entertainment here too! So long for now!

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