Sunday, 15 July 2012

Sunday 15 th July

Well, one of the most magical things about being a parent is seeing your kids develop and gain from experience. I took Callum swimming today and he is really coming on. Only a few weeks ago he would hardly get in the water, preferng to play at being fireman Sam on the edge of the pool with his watering can! However, today he got in the water and I would not let him hold me and he actually moved his arms and legs to get him about the pool! He was chuffed with himself and so happy being in the pool that it makes you feel warmth and a glow, knowing with your encouragement they are getting better and a little step nearer to being able to swim! However, this glow was overshadowed as to take Callum swimming meant I left Harry. We had talked about it and he was quite happy to go out on his bike with daddy, as his immunity is far too low still to go in a pool. He knows and accepts this, but upon me leaving him he was beside himself with the loss of attachment to me. He was totally bereaved and this left me with a huge sense of sadness as I feel I have lost my Harry as I knew him last year and to get that back is going to be like climbing Kilimanjaro! Harry was always the one out of the 2 boys who was sociable and easy to leave at nursery, however recent hospital admissions and in particular this last 6 week stay has meant he has not been without someone he knows very well, usually me or Paul. This has led him to lose confidence in situations whereby he will enter something new and I am very worried about him starting school. This is whereby services should have been supplied weeks and months ago, a service that I could leave Harry and go and do shopping, so he gets used to being left, unlike the only service we have been offered whereby a play worker comes in and plays with Harry, but I have to remain in the house. This has been of help, as Harry does play with the worker, but he knows I am only a shout away! oncology falls between services as said before. I have a meeting this Friday with some services, to discuss what is available. As said I believe a hotchpotch of hours with several different workers, which is not going to help really. Continuity is the key, consistent ground rules, the basics really. I have parked many issues of late re services, but as the meeting looms and Harry's start date for school looms too, as does his further treatment, then the little gap we have at present I know is just that! A gap, before Harry is probably knocked down again by the side effects of radiotherapy, mainly fatigue and sickness, which also compounds the fact that he will want me, which is expected, every poorly child wants mummy and daddy near. However, does not help me to build him up being left with others in preparation for school. As we are a family that thrives on trying to create normality then I guess once Harry's treatment has finished we hope next March then we can really work on getting the old confident Harry back. I guess until then I have to accept that this gruelling treatment program does not let up and I know Harry is doing his best to cope too. He was so sweet when Callum came back from swimming as he was asking him all about it, what he did etc. for a little boy who had to give up his swimming lessons he is in no way jealous, though he did get upset on holiday that he could not go in the 2 leisure pools that were there. Though only momentarily. The on site fun fair was a massive hit! When asked what he liked about his holiday, the fun fair features at the top! We got £20 worth of tokens and they had a few rides every day, on the last day he was even given an extended dodgem ride with his dad! Hook a duck was the best, the tat we have now, just increased! Ha, ha! Back though briefly to the subject of developing ones child, Harry does love to scan shopping in when at the supermarket and help to pay! He's not supposed to go into supermarkets at present for fear of coming into contact with a poorly person, but as Tesco express in Scarborough appeared quiet, we let him come in. We went to the scanning machine, to find someone had scanned in milk, which we did not want, with no assistants available I spent ages clearing this, but managed to do so, so Harry could scan the shopping, but in my bid to find the barcode on my small box of ten glass bottles of beer, yep one dropped out and smashed on the floor! That was the end of using the scanning machine! Oh and the moral of the story is that I should have purchased 4 cans of Stella Artois instead, then there would have been no glass from a cheaper brand to break! Filey was good and the weather improved towards the end of the week. The boys did fight, normal sibling behaviour. At many times though Harry's demands were very tiring. Again, he was the centre of attention for 6 weeks. However, I am sure being together was a massive form of therapy, even though Paul and I wanted to shout 'get me out of here!' many a time and dreamed of the holidays we used to have whereby relaxation was the main agenda not being a peace keeper and children's entertainer! However, seeing Harry and Callum squeal with delight on Thursday as they ran in and out of the waves will be a lasting memory, as will Janey's visit with Esther and Issachar (the dog). The mission was to build a bigger sand castle than the older boys on the patch next to us! Mission accomplished with moat. Issachar helped dig the moat too! Harry even told the boys that he thought our sandcastle was bigger! So when in great company and feeling secure it did feel like the old Harry was back in town! I know his cheeky smile and fun loving nature is there, it just really proves how nurturing and being firm and boundaries are key! on Friday we arranged for a community nurse to take Harry's bloods at our caravan. We had pushed it to a week between the last time his bloods were taken. We thought if he has a nose bleed, usually a sure sign that his platelets are low then we would just take him to Scarborough hospital. So Friday, the nurse came, she was lovely and when asked to do a crossmatch blood sample in case a red blood cell transfusion was needed, she didn't hesitate to comply, unlike the hassle we had with the Leeds community nurses! The nurse took Harry's bloods to be analysed leaving us to go out. We got a call at 1.30 pm to say he needed a platelet transfusion. The hospital needed to order the platelets and an estimated time was 4.30, but they would call when they arrived. We went to Sowerby Hall and had a walk around the gardens. They had a tiny 'zoo'. Mainly birds, but they had monkeys! The boys have never seen monkeys in real life and as I love monkeys, it was fantastic to see the boys so excited to see them too! The monkeys really performed for them! can't wait to take them to a proper zoo! So 4.20 pm the hospital called and said that Harry's platelets had arrived, Paul dropped me and Callum back at the caravan site and Paul went with Harry. He was back for around 7.30. It's strange how it seems normal that Harry needs access to a hospital near any holiday destination and that having a transfusion is just normal too! Our NEW normal! Whilst Harry was at hospital Callum and I went wandering round the site and walked down to the beach. Callum was in ace spirits, so we had fun whilst Harry was away. So our holiday came to an end on Saturday. We are very grateful to Candlelighters for letting us have the caravan for a week. We are also grateful that Harry only had the one trip to Scarborough hospital. We really were not sure if we would get away or if we did how much time we would have for well holidaying, however it was good that Harry was as well as could be expected! The potions of medicines 4 x day continued and took up a large chunk of space in the caravan! Another good thing is that Harry has put on half a kilo in weight and affirms our decision to knock off any day time feed and encourage as much eating normally as possible! To boost his calorie intake his request for strawberries and cream for breakfast, lunch and tea was granted! It is very difficult trying to get a child in Harry's situation to comply with a normal diet, we do try, but the alternative of connecting him to feeds during the day as well as night is very laborious and takes out the ability for fun to be had! Extra feeds also increase the risk of sickness, particularly during the day, when Harry is more likely to run about and not let the food settle. Sickness goes and in hand with the increased chance of his NG tube coming out and that means a visit to hospital. So considering these consequences, we go with strawberries and cream! So home and washing, the house has looked like Widow Twankey's laundrette! I have to admit I never cleared the washing before we went away as The Ball took over! However, a nice sunny day has dried a couple of loads and ironing has been the feature of this eveing! So 2 weeks before Harry's radiotherapy, let the fun continue!

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