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!