Monday, 21 July 2014

21st July 2014

Life keeps moving and we do with it, but it is very hard at times. Following our holiday to Southwold as Callum would say we had a holiday after a holiday! We went for a long weekend with friends to centre parcs. We chose to go to Sherwood Forest this time, where we have never been and where we thought there wouldn't be reminders of our past centre parcs holidays round every corner. We had a fab weekend and Callum had friends to play with too. We went with the same friends whom were with us when we managed to get Harry to the Whinfell one for 1 night back in January, when he was paralyzed from the waist down. I am pleased when he was paralyzed that we went to the Whinfell one as the swimming pool was easily accessed by Harry in a wheelchair. We would have struggled to have got him in, in the Sherwood one.  Despite going to a different centre parcs, the thoughts and feelings follow us and at times I felt my eyes sting with tears knowing we are trying to plough on as a 3, but knowing we should have been a 4. 
As said life keeps moving and I am now back at work. Paul has had a restructure at work and has moved location of work as a result. He is also working with different people, some of whom are aware of Harry passing, some aren't and have asked Paul how Harry is and others have no idea of the trials and tribulations that we have faced over the last 2 years, so this mix of knowledge brings its own hurdles to jump. Paul has also commenced a 4 week motorbike course, that if he passes will add an exciting string to his bow and career! 

Therefore, there is much change in our lives and I am very mindful of this in terms of our ability to keep coping and keeping our heads above water. It feels good to be back at work and into a routine. I am in a new team too, so I have a lot to learn and just getting linked into the main systems on the computer seems a feat in itself. I have been out and shadowed a newly qualified worker completing assessments in the local community hospital. I felt it all rush back and I know I have the ability to get the information needed and verbally complete the assessment, but for me it's relearning how to navigate the computer system that is going to be the biggest hurdle, not the people! Due to all the cuts in budgets the administrative staff have been vastly cut, leaving a skeleton staff remaining. Therefore everything is so cumbersome and frustrating to get simple things like ID badges organised. Finding the correct department to go through and then once found, the forms are endless, all because there is the need for a paper trail now, to evidence what everybody is doing and then the evidence proves what is needed resource wise! The times have gone for the ability to just ring someone and get anything actioned. Paperwork has always been there, but I'm not so sure it's actually benefiting the service user group and enhancing the quality of life they have. 

Callum is doing well. I feel the routine we have is good for him and indicates to him that life is moving forward. He starts school on September 8 th. He is growing fast and is turning into a lovely boy. I had a good talk to him a few weeks ago though,  when he was wanting everything under the sun. We had just had a lovely day out in Leeds. We had caught the bus in as Callum had never been on a bus, called in at LGI to drop off some art and craft bits for clinic to use, spent ages in the Lego shop, where Callum bought 3 little Lego figures and a small tub of pick and mix Lego and  finished off with a Mcdonalds' Happy Meal, before heading to granny and grandad's where he had tea. Callum went to bed reeling off his wish list of more lego that he wanted. I felt very sad and at that moment longed for Harry, as he was so very gracious about everything we did, always thanking us for whatever he had or had done. I therefore told Callum how he needed to be pleased with what he had, not always wanting the next big thing. We had quite a chat about it as it seemed quite a constant issue and I told him how Harry was always so pleased with what he had. 
The talk clearly sunk in, as a few days later we were going through Callum's duplo, ready to box in the roof, but he started playing with it and remarked that he could play with it instead of buying new things. He has been very thankful for the things we have done recently. He seems to have changed and calmed down, becoming happier I think and more content. I know we did a huge amount last year, more than most 3-4 year olds do and Callum and Harry had a lot things bought too. It's about reigning it in now and creating a new normal. When I look back to last year I don't know how we managed to pack so much in, day after day at times doing things. I guess when emotion and drive is there to create the happiest memories possible, it goes to show what can be achieved. We made each day count. 

I am aware of a couple of children having ongoing treatment since relapse and yes I question the path of treatment Harry had. Should we have pushed for more treatment? I know that Harry was so very poorly at times during the initial treatment protocol and from the subsequent radiotherapy he had. In my heart of hearts, knowing the beast that Neuroblastoma is, I think we made the most of our time with Harry and have the many, many memories that will stay with us for life. Since there is no protocol post relapse and each and every child is so different in how they present post relapse, both in terms of coping with treatment, blood counts and where the disease is, I cannot compare Harry to others, but I wouldn't be normal if I didn't question at times the choices we made. 
I attended a palliative care conference recently, which was led by Martin House. I attended as the parent perspective. I felt my social care background aided me though in understanding the terminology and backdrop of the care services. It was a good day and I really felt I could contribute along side the doctors and nurses present. Palliative care is definitely a specialist area I will remain interested in. I know one area touched upon during the conference was when is enough, enough in terms of treating a dying child. I am interested in this area, because I am mindful at times as to whose benefit is the child being treated for? Is it for the child's continued quality of life or is it for the parent, whom can't bare to let go of the child? We live in a society whereby infant mortality is very low and so we find it very difficult to accept the death of a child. I sometimes wonder though if the courts should be involved more in making ethical decisions about how much treatment is enough. Of course this would be a costly process, but so are the treatments, machines and equipment used. 
Throughout Harry's cancer journey I was always mindful of him as a little person. We followed the initial protocol and entered Harry into the computer system for the trials on offer, thinking we had to give it our all to get rid of the beast. When he had relapsed disease confirmed, he was so well. I knew he was dying, but whilst his body was well enough to do the activities he had missed out on for the previous 18 months, I felt I needed to let him be, with his blood counts being so low still, I knew any treatment we pushed for would have had the risk of making him very poorly. We chose life, grasped it and packed in the fun. Perhaps Harry would have lived longer if he had, had more treatment, but equally the treatment could have killed him. Treatment in terms of more chemo may have thwarted any quality of life he did enjoy. Who knows! I do know that I always took my lead from Harry and he was very against hospitals, further needles and even losing his hair again. I do think children's wishes need to be heard, I know they don't have the capacity to make the ultimate decisions, but they have a voice too and this should be listened to in terms of their thoughts about continued treatment. I think children themselves know when enough is enough and of course the point this is reached will vary from individual to individual. 
I suppose ultimately I know we did right by Harry, but God  dam it, I wish it didn't heart so much living every day without him on earth with us. We miss you so much Harry, your smile, your humour, your graciousness, your unconditional love, even as we had to consent to all those needles, potions, radiotherapy and tests. You knew we loved you too. 
I was in the bank today and Callum started talking to this older lady the other side of the room to me. He had Harry's beloved Becky the stuffed dog with him and the lady asked him about his dog and if he had, had it a long time. Callum told the lady that it was his brother's and the lady commented that, that was nice that the dog had been passed down to him from his brother. I was listening intently to see what Callum would then say and he told the lady that the dog had belonged to his brother, Harry whom had died age 6! I asked Callum later if he missed Harry and he said that he didn't. He said that we have all the photos to look at of him and how like I told him he could play with his friend Fin when he wanted to! I feel sad that Callum didn't say he missed him, but equally I wouldn't want him grieving every day like we do. When aged 4, life is still all about them and when I think about it, Callum's quality of life over the last 3 months has rocketed for him. He spent hours watching the iPad or DVDs whilst we looked after Harry in his final weeks. We have taken Callum out loads, walking, running, cycling, on holiday, he has just started swimming lessons and he competed in a cycling tournament last Friday evening. Callum is blossoming with his new found freedom to do all the activities he loves, he is able to channel his energy into positive things, relieving him of some of the anger and frustrations he has previously felt. 
We have so much change going on in our lives right now, at a time when stability would have been preferred, but life is just not like that. 
I am such a planner, that will never change! Just to prove this I have already been thinking about how to mark Harry's first anniversary of not being here with us and have decided in conjunction with my friends that we should have another ball! Harry's ball! The date is 25 th April and the location is The Craiglands again in Ilkley. So, save the date and details will follow in the autumn!