Callum's first day at school! 8.9.14

September 3rd

It's a good few weeks since I last wrote anything. I don't want this blogg to become a boring run down of our activities and will write as I feel fit to do so.

So why write anything today. This is because I feel we are entering a new phase. One which brings, joy, excitement and sadness. That is Callum going to school. He said goodbye to nursery last Friday, which I found emotional. Esscroft nursery has been apart of our lives for almost 4 years, Harry started Attending in October 2010. I cannot recommend this nursey highly enough, it has provided Callum with the best start possible in life. Esscroft is like a little magical kingdom, with so many varied activities for the children, space, home cooked food and a family atmosphere. The price is highly competitive too! I dropped Callum off for the last time on Friday, armed with sweets for the children to share and gifts for staff to show a token of our appreciation. I found myself welling up as one of the staff members gave me a hug. The nursery have supported Callum and us through one of the toughest life changing events imaginable. Harry loved the nursery too. There is even a plaque dedicated to Harry there. It was made to mark Harry's end of treatment and the start of the rest of his life. The plaque is a piece of stone with a tractor carved into it and the words "it's all good, Harry" unfortunately only weeks following Harry's unveiling ceremony, we heard the words relapsed disease and suddenly Harry's life had a sentence on it. As you can see, one chapter closes with Callum leaving Esscroft and another is about to open, when he starts school on Monday 8th.

Summer is drawing to a close too, though officially not until September 21 st when Autumn begins. We had a fab start to summer, with hot weather and holidays, but August has been mixed. Partly due to Paul and I working, but also intermittent weather has put a downer on plans at times. I have to admit that when the sun shines it lifts our mood, but when it feels like winter in Summer as it has done at times, I feel sad. Getting out and about and keeping busy and creating new memories keeps us from dwelling on our loss of Harry. I love getting out and about. We have taken Callum out cycling again. We enjoyed the Spofforth-Wetherby cycle path on the old railway line. The park at Spofforth is well worth a visit too. We have also been out on the chevin a few times and visited Harry's tree. I have taken Callum to Burnsall with friends a couple of times too and we've had the best old fashioned fun, paddling in the river, having water fights and picnics! We have also visited the amazing Nuzzlets farm again, the one we are still selling Harry's book to raise funds for. It provides that personal experience, for children to get up close to the animals, which most farms don't provide, perhaps a quick pet with a guinea pig, but at Nuzzlets children get close to goats, sheep (there is one named after our Harry!) turkey's, various types of chickens, rabbits of varying sizes and some with the most velvety coats, guinea pigs and rescued kittens. There are donkeys and horses too. For disabled children, whereby access to farms can be difficult, fighting through the crowds next to the pens can be cumbersome, Nuzzlet's provides such a therapeutic, calm atmosphere, whereby each child gets to spend quality time with the animals. As said before, Nuzzlet's not only has children visit the farm, but Mary who runs it, will take the animals to special schools and Martin House Hospice, widening the audience and access to these lovely animals. 

So far, you must think this current blogg is an advertisement of Esscroft nursery and Nuzzlet's farm! 

Back to Callum starting school. 

We have just had our last long weekend away in a while as school will put a dampner on trips away, but that is growing up! When I say we, Callum and I went away as daddy had to work. We were spoilt in July with paul having weekends off due to being on a 4 week bike course, which incidentally he passed. We are now back to Paul's new shift pattern, which means he works 3 weekends then gets 2 off. Not a family friendly shift pattern, but for now it's as it is. Callum and I stopped at my friend Kate's house on the way to my sisters's whom lives near London. Kate has a daughter of similar age to Callum. They are like 2 peas in a pod! We had tea at the local pub, whereby Eva and Callum enjoyed the play area and with them entertained, we mummies just had to partake in a glass or 2 of vino. Just before we left the DJ was setting up for the evenings entertainment. Callum requested the DJ played Bruce Springstein - Born in the USA, which was one of Harry's favourites. Callum crazily played his air guitar and I joined him with a little jig! (Oh and maybe some air guitar too, but shhhhhh!). 

Before we left on Sunday to head to my sister's, Eva introduced Callum to the disney movie 'Frozen' that seems to have captured the hearts of all little people and many not so little for months. Callum until Sunday had refused to watch the movie, insisting it was for girls. Well, the movie well and truly wove it's magic into Callum as he is now obsessed and slightly starry eyed and in luuuurrrve with the main character Queen Elsa! He now has tattoes (fake ones of course) of the characters on his arms, legs and tummy and is desparate for his own copy too! 

We arrived at my sisters for a late lunch. Cousin Olivia is 2 years and 4 months and is really stringing her words together. She was excited to see Callum and is at that cute stage. We went to a farm on the Monday, typically sunny the day before and I add the day after for our long drive home, but yes you guessed it, drizzly and cold on the Monday! 

There was an indoor play area and Callum went confidently off playing on his own, with Olivia joining him later. He wanted her to go where he did, but she was just too little for some of the older bits. It was funny hearing Callum describe Olivia as 'a handful' and that she should go back and see her mummy, whilst he played on the older bits. Callum loved the JCB ride along tractors and dumper trucks and could have spent all day riding them on the 'road' marked out. Olivia, though prefering the swings, sand pit and little carousel ride! Both loved feeding the animals. 

So we returned home on Tuesday, I'm back to work Wednesday and daddy is in charge! Childcare is shared this week, giving Callum a break from nursery, some days out and time with Granny and Grandad on Friday, then Grandma and Grandad on Saturday! 

This week I have seen lots of pictures of children in their school uniform on Facebook, some new starters and some returning and entering their new year. I am sure I will add a picture of Callum  in his uniform next week, but what has suddenly hit me hard, is the fact that Callum's picture next Monday will be incomplete. Harry will not be in it, standing beside him in his uniform too. Harry and Callum talked lots of being at school together. Heartbreaking for us knowing that it was unlikely to be and now a reality. I miss that boy so very, very much and with events such as Callum starting school, that MISS is currently ten fold. Harry would have been in year 2 and still in the same playground as Callum. I am pleased that through Harry, Callum is familiar with the school environment and he will have many familiar faces to watch out for. In fact in his year there are quite a few siblings from Harry's year and so I know the mum's already, which is a relief as they know all about Harry. 

I find it hard meeting new people, especially those who don't know about Harry. Somehow, at present he crops up in conversation frequently. Such as when talking about buying uniform, well no I haven't bought any uniform as we have plenty of Harry's which fits Callum and he is so pleased to be wearing it. I have even left Harry's name labels in the clothes! We know a few people with babies and when talking with friends, I talk about what Harry and Callum were like as babies. 

I won't deny that I had Harry. The day he was born, our lives became brighter. It is Harry's birthday on Friday 12 th September. He would have been 7. This adds to our huge MISS at present. 

I am glad that I have the routine of work, 3 days a week and I know Paul is glad he is back at work. It gives us a focus and something for us to get our teeth into. Without work I think I would be in a heap somewhere. Callum also keeps us going. His huge smile, sense of humour and the compassion he has, which is well beyond his 4 years, melts our hearts!  

Next week is a big week. I will have tears in my eyes on Monday, not so much at Callum's new chapter in life, I think that it is exciting for him and he is so ready for the new challenges that school will present, but tears for our loss of Harry. Probably more tears on Friday, which incidentally I have booked off work as paul has, whereby we will also celebrate Harry's birth, as he truly was and is a bright star! 

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! 

Southwold!

Whitby!

Book of Harry, pictures of Harry at school and comments from year 1!

18 th June

I thought I'd write an update. I'm not sure what to do with this blogg, but will definitely keep it open and update now and again. It's obviously not about Harry's progress anymore, but about the journey of a grieving family. 

It's 14 weeks since Harry died. Some days it seems a long time ago and other's only yesterday. Grief comes in waves and can catch us off guard at times. Music on the radio, seeing pictures of Harry, particularly the screen savers we still have. Callum talk's about Harry and sometimes this can be unexpected, such as his questions about heaven and wondering if their are toilets in heaven. I explained that when you die you don't need the toilet. Callum thought that this was fab, as it meant more time for playing. He also asked if their were schools In Heaven and he decided that there were.

Callum loves wearing Harry's clothes. Though I am acutely aware that Callum is taller than Harry was at the same age and so Callum won't have many more months of wearing Harry's clothes. That will feel sad, when all Callum's clothes are new and not hand me downs from his much loved brother. 

Callum loves playing with Harry's beloved Lego and is pleased about his new playroom In Harry's room. Since Harry had a bed, which was from the NHS and much of his furniture was moved out to create space to move and handle Harry into bed safely, once he became paralyzed from the waist down, that now all the equipment is gone, it leaves a large bare space.

I never wanted Harry's room to be a shrine to him though, so I am glad that it is bare and Callum can use it as a playroom. I am also pleased that Harry's clothes are not left In Draws and Callum can make use of them. Though I have boxed some particular favourites that just don't feel right to see Callum wear. 

I feel we are doing really well for the point that we are at. We are thinking of the future and beginning to make plans for our new life. We are being kind to ourselves and very much enjoyed some couple time in Whitby recently. Granny and Grandad had Callum to stay for 2 nights, which he very much enjoyed. It was our 11 th wedding anniversary. Having spent our 10 th at diggerland last year, trying to create great memories with Harry, particularly as he had just commenced morphine to combat leg pain and our 9 th was spent in lgi, with Harry very poorly due to the side effects of high dose chemo and our 8 th was spent unpacking boxes as we had just moved house, though I do remember we managed a meal out! As you can see, we were overdue a relaxing anniversary break! We chose Whitby as we both love it, no big journey, wasting time in the car, so more time to play. I had forgotten how many memories we had of Harry in Whitby and In Between the fun and smiles, there were tears of sadness.

I think that is our life now, smiles, happiness, but frequent sad moments where tears sting our eyes.

You see the thing with grief, there is no ryhme or reason or rehabilitation program or protocol for treatment, it has no timescales for the healing process and must not be forgotten how emotionally and physically exhausting this thing called grief is. You can not see it, there are no physical wounds or scars, no bandages to make it better, no cream or lotion will heal it. It will always be there in Some shape or form. I gather that it is about learning how to live with grief and getting used to it, that helps. Time can only make that happen. Again there are no timescales for how long it takes to adjust. Then I am sure once adjusted, again, there will be no ryhme or reason sometimes for a temporary 'relapse'.

People say 'how are you?' and most people don't really want to know, that's life. Sometimes, someone will say 'No, HOW are YOU' and those people are the ones who know you are not really fine and want to know the truth. Some days are actually ok and other's are not. To be honest I would say most days are a roller  coaster of emotions, as said, smiles, happiness and tears of sadness all in one day.

Whilst Paul was working nights one weekend, I drove Callum and I down to my sister's, which is just north of London. We had a lovely weekend. Callum got on well with his cousin Olivia aged 2 now. She is just old enough for them to play together and interact together. Callum, despite declaring that he doesn't like girls, was really sweet with Olivia and looked after her In the soft play area we went to. 

This adventure down to my sisters, was a milestone for me, since I had not driven such a distance all on my own since Callum wAs born.  I used to frequently travel distances, even with Harry, but when Callum was born car journey's turned into a nightmare! Also with my parents moving to Otley 4 years ago, there hasn't been the same need to make long journey's solo! I also guess that when Harry was either on treatment or when he'd relapsed, the unpredictability of his health, meant travelling solo for long distances felt like too great a feat for me to undertake. Since Paul works a lot of weekends, I always used to make a lot of plans for weekends and would travel to meet up with people. I have now taken the first step in knowing I can do the things I used to do, Callum was fab in the car, he was happy as long as 'One Direction' was playing, I hope they get off tour soon and make another album, the tunes were on replay in my sleep! I feel the trip was a milestone in my ability to move on and learn how to live again. 

Since Paul has limited ability to get time off over the summer due to a restructure, new teams and management and my commencement of work in July, he has 2 weeks off work at the mo, whoop, whoop! We have just come back from Southwold, Suffolk, aka Sunnysands from Grandpa in My Pocket. We had a fabulous week, Really relaxing. We had the use of a beach hut on the seafront, which was brilliant, we could leave the buckets and spades there, have a cuppa using the calorgas stove or partake in a cheeky alcoholic beverage! It could get a little breezy on the seafront, so the hut provided the perfect shelter with a sea view! Callum loved the beach and we spent many an hour on the sea front! None of us were quite brave enough for swimming, but a paddle we did manage! 

We took our bikes and made Walberswick our regular destination, where Mr Whoops' shop front is from Grandpa in my Pocket. Callum is getting good on his bike and even managed to ride on the road a little, sandwiched between daddy and I. I haven't ridden a bike much in years, so Callum's stopping and starting helped me too! We found a seafood restaurant on the harbour, which we have seen develop over the years, from just a shop to a restaurant, though we haven't visited Southwold since Harry was 18 months old, but this year has seen the addition of outside seating, perfect for a glorious sunny day and perfect for Callum, to fidget to his hearts content! The restaurant does seafood platters and we could take our own wine and bread, perfect - yum! The weather was so lovely the day we went and the rustic setting made us feel like we were in France. 

We did take a day out of roaming the countryside to visit Pleasurewood Hills theme park, near Lowestoft. I used to frequent the theme park at least yearly throughout my teens. It was a massive throw back to 20 years ago, some of the rides have changed, but much was the same and I could tell Callum that he went on a ride that even granny and grandad went on! It was the sedate boat ride, which Callum thought was boring! There was a rollercoaster called 'the rattlesnake', which was very tame, but I could remember queuing 45 mins to get a go all those years ago. I also had a certain recollection that it was called 'the ladybird' when I used to frequent it. I asked one of the workers about the name, but they confessed they were only 21 and so they were only months old, when I had last visited! Good old Wikipedia could confirm that my memory was exactly right and it's original name was 'the ladybird!'

As mentioned above, we last visited Southwold when Harry was 18 months old. I could quite clearly picture him motoring along the promenade on his plastic trike. That was a happy holiday too. When we were out on our bikes, I did feel sad that Harry wasn't able to ever join us on family bike rides, though, I could picture him smiling at how confident Callum is on his old bmx bike now. I remember the day last October, when Callum insisted on having his stabilisers removed and Harry was helping Callum balance on his bike in the cul de sac next to our house. Harry was so proud when Callum managed to ride 20 foot without falling off! Callum was still just 3 then! 

Our hearts ache without Harry, but our lives cannot stand still, we will endeavour to have new adventures, smiles will shine through the tears.