Thursday, 26 July 2012

Saturday 21st July - Deja vu

Well we are back on ward 32 at LGI bed 3, where harry spent 6 weeks in isolation, so Deja Vu! However, Harry is just in for the day as he needs a red blood and platelet transfusions! The first warm, sunny day and we are back in hospital. I believe the weather should last a few days, fingers crossed as Harry missed the last heat wave in May as he was in hospital. He said this morning, why could it not have been sunny yesterday, instead of raining all day, good question! So a bit depressed really at the prospect of spending all day back at LGI. Harry made a Lego creator range plane and followed the instructions and completed it all by himself. So as others play outside, Harry's skills at making things has vastly improved over the many number of hospitalised days we gave had now! The activity was supposed to have lasted longer than an hour though, but gave Harry plenty of time to parade through ward 32 and 31 and show his model plane off! At least the previos thursday we had enjoyed a family day out. We went to Scarborough for the day to meet friends from Scotland as they were holidaying there for the week. It was sunny and my 2 and their 2 girls played very well on the beach. Harry tired though after a few hours and whilst the others were having immense fun, Harry sat on my lap, tired. We were glad we had the pram as we had to wheel him back to the car! Though a good afternoon it was. In fact we all went on a 15 minute ride on a pirate ship, out around the south bay of Scarborogh. It got a little bumpy as the wind whipped the waves up a little, but added to the fun! Harry, stayed awake on the way home and this led him, along with all the fresh air to have the first good nights sleep in a long time! These days he wakes 2-3 times a night, due to dreams we think mostly. He gets anxious too at times, or he just needs help to have a wee, as he is connected to his feed machine all night! We do find this broken sleep as if you had a baby in the house exhausting and can minimise the level of patience we have at times. Well moving on, I have many things that agitate me at the moment! Namely the myth of David Cameron's 'big society'! This is whereby communities support each other and voluntary services are key in meeting people's needs and thus reducing the need for paid services via health or social care, thus reducing the huge deficit a little further. Great to supplement formal services, but when in our case it seems the whole care package is to be made up of voluntary services, then not so good in practice. This is because voluntary services, due to the nature of it relies on the good will of those, well volunteering. Therefore if they are off sick, or on annual leave or do not feel like turning up that day, well that's it, there is no obligation to put in back up support to fulfill the lost service and there is no money either. The service relies on there being a pool of volunteers to provide the service too. We had the meeting on Friday, whereby 8 people joined to discuss what could be provided to support Harry and us on our continued journey to rid Harry of Neuroblastoma cancer forever! Well having spent half the meeting updating everyone of where we are up to and everyone realising the truly complex nature of Harry's treatment and our situation we got onto the subject of how we can be supported. The nature of Harry's treatment protocol is that things move so quickly and so the issues one week, quickly change to new issues. The issues discussed with the community nurse on 12 th June focused on trying to get services in place for Harry's discharge home, whilst his immunity was low and so unable to attend nursery. However due to the time it takes to organise any big meeting, the issues have changed, as by the time any services get actioned, Harry will be attending school, or if unable to do so at least in the school system! With this new chapter in Harry's life it also means he cannot have Jackie the play worker come in term time. her remit, once a child starts school is only to give p,ay therapy in the child's holidays, even if due to Harry's medical situation h can't attend school much! So we find we will lose 2 play workers, but gain another service from health, but due to the fact Harry isn't terminal, well he is at the bottom of the pecking order, he could get a worker coming into our hone weekly for 4 hours, but this in reality is likely to happen only sporadically due to those being terminally ill having the greater need for the service and therefore taking up the pool of workers available for Harry. I am not convinced by this service though as Harry could get 1 out of 8 different workers seeing him and with starting school, this is another new face to get to know. Also being any worker out of 8 people, how can a relationship develop. We did get told of another voluntary service, which Harry again meets the criteria and having gone over the small print, they could in fact look after Callum too, to provide respite care to us, so whoop, whoop, however there are no volunteers in our area. As said as it is a voluntary service and not a statutory one, there is no obligation to spot contract a worker to meet our need, until a volunteer can be found. Within the meeting I try and grasp how the last 6 month phase of treatment will pan out. We don't know at this point if Harry will have a third randomised drug. If he does then hospital stays during this 6 months will be increased. If not them it could still be that he has overnight stays for a few days every 4 weeks. In all honesty nobody knows how Harry will react to these drugs and so we cannot predict if he will be hospitalised much or not. Therefore with regards me trying to get back to work, well I think at the moment it is clearly unrealistic. I am trying to come to terms with this. If I don't work then Harry can go to school as much or as little as he can cope with. It's me wanting and needing to return to work, that adds to our conundrums. Though I have found a childminder who could provide after school care for Harry, as after school club will be too hectic for him. On the subject of school, I have found it hard at times hearing and reading people's comments about their kids finishing nursery or pre school in readiness for big school. This is a reminder that Harry hasn't attended nursery really for months to be able to finish it. As for starting school, well we have a date for 13 th September, but have no idea if this will happen then, as his latter stage of treatment will commence any time between 28 th aug and 28 th September. When depends when his blood counts are good enough. I have requested to start treatement after his birthday, which is 12th September, I really want to get his party in before treatment commences. So I find myself giving myself a good talking to at times. Starting school is one of those major events in a child and parents life, however, if it doesn't take place on 13 th sept then so be it, but it'll be momentous on whatever other day he starts school. It's just for us the goal posts are forever changing and with that we keep having to re evaluate expectations and plans and with that emotionally come to terms with the changes. I think it is fare to say at times a grieving process happens to come to terms with not getting back to work as soon as I had hoped and with regards the fluid nature of Harry's commencement of school. In the grand scheme of life there will be many firsts and momentous days that will come in due course. For us our firsts and momentous occasions can just be different to the typical parent of a 4 year old. These are having an amazingly brave boy who takes life mostly in his stride and is known for his huge smile and zest for life, I guess Harry has graduated from having cancer to being in remission and to get to being in remission has taken some very gruelling treatment that harry has endured. He has scans without an anaesthetic, which many other kids can't manage as they won't keep still enough. Harry has endured many a needle being penetrated into his port and mostly accepts this, as long as the nurse counts to 3 on insertion. Harry has become an incredibly inquisitive young boy, who knows far more for his years than what he should do, due to his current treatment protocol and being more aware of life and death. Returning to the subject of re evaluating plans, well on Tuesday this week (yep I never finished and published this on Saturday!, whilst in the supermarket thinking the biggest decision was which pasta source to buy, well I get a phone call from Harry's consultant. It seems we should have seen her in clinic, but nobody said, she had not figured that Harry's radiotherapy commences next week. I saw the McMillan nurse last week, plus the radiotherapy consultant has surely kept her up to date? It seems not. Well having asked our Mcmillan nurse last week when randomisation for the trial drug would take p,ace I was told after radiotherapy. However, this is not the case. The consultant basically put it bluntly that we have been able to enjoy some time out of hospital, but they needed to do a bone marrow test tomorrow(Wednesday), followed by a MBIG scan (bone scan) Thursday and Friday. The scan requires radioactive dye from Germany, which Sue had persuasively reserved for Harry. These tests are needed to provide evidence that Harry is in remission to be able to be entered Into the randomisation. Therefore for me it was like a scratched record halting. My precious plans to be interrupted and changed again. I could feel my eyes burning up in the middle of the super market. I had plans to see people, we had a life, some normality. We were enjoying ourselves. But no, that's not allowed as we are always one phone call it seems away from spending time in hospital. Well, I had the choice to not go with the tests this week, but to either have them next week and delay radiotherapy, or have them after radiotherapy, both options would delay his final treatment. I knew in reality I don't want to cause delays. Knowing the dye from Germany is difficult to get hold of, I agree to go ahead with the scans, but really wasn't happy about the bone marrow the next day. This is invasive treatment and requires an anaesthetic. I Knew Harry would be upset about cancelling our outing out with his friends and also I'd committed to looking after my friend's little girl. The thought of dragging harry up the corridor for the procedure as I did last March, was not going to happen. Since I was in the supermarket and not the best place to make decisions I agreed to liaise with the McMillan nurse re plans. Well, I also had to consider child care on the Thursday for Callum. This is another thing that annoyed me, was our consultants flippant attitude about Callum, in the sense that her answer was to bring him to the ward. The boys would have run riot on the little bikes they have, as they Did briefly when reunited on ward 32. Also Harry has his 15 minute Bone scan without an anaesthetic, for one I didn't know if Callum would kick off, thus not enabling me to support Harry, but also if he would be worried for Harry seeing him have his scan. Anyhow, my friend Jenny had Callum all day and he was as good as gold for her. Thank you Jenny! As for the bone marrow, we agreed for this to take place Monday afternoon. Thus, enabling Harry to see his friends on Wednesday. he went to the ice crem parlour, where there s a great play area. Harry and his friends had a fantastic time. It was lovely when home too, to see Harry play with Rosie. Harry's stamina has increased massively since he left hospital on 26 th June. This we know will decrease again following radiotherapy. Harry's appetite has come back a lot too, thus putting on a little weight too. So hospital and tests it is again, and with the tests goes hand in hand the niggling fear that is 'what if Harry is not in remission'. We believe he is and how he presents is not a poorly one with cancer, but until we have those results, well as said the niggling thoughts occur!

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!

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!

Monday, 2 July 2012

2nd July

Harry is being reintroduced to the world! It has its ups and downs as expected and I will write more another day.

I just wanted to post a link as a couple of people have asked about how to make a donation to Candlelighters and CLIC Sargent if not attending the ball.

The link below is the best one to use. My Friend Kate did a sponsored swim the other week for these charities, and she did it for Harry. It took her nearly an hour to swim a mile in Lake Windermere, as the current was very strong. An amazing effort!. The link below is to Virgin money giver, they don't charge a penny for the service and all doantions if a tax payer can be gift aided!

Lets get the total up tp £10000!!!!!!