Nearly 1 year on

Next week on the 8 th April will be the date that signifies the first anniversary of Harry's death. At 7.40 pm harry took his last breath. Having re read some of the entries I have written over the last year  i can say that I have come along way in 12 months. Some days the pain is so intense and our miss of harry is as roar as it was the day he died, but I suppose it would be true to say the length of time these phases last has decreased. The waves not quite as ferrocious as they were. The loss becomes something different at times, the loss of dreams. The loss of our family of 4. The loss of what was supposed to be. The loss of seeing harry grow up and be a year older. The loss of managing sibling rivalry, the loss of the sound of laughter between 2 boys that loved each other so much. The loss of hearing how Harry would be doing at parents evening. The knowledge that he will be forever 6. We watch his friends grow and we will never see Harry grow. Harry's favourite theme will always be pirates. He will always love lego, listening to One Direction and pretending to play air guitar. Time will stand still in terms of Harry's favourite things, whilst his peers will have constantly changing fads and obsessions. 

Our ball to be held on April 25 th has a pirate theme to honour Harry's love of all things piratey! The ball will mark the first anniversary of Harry's death. We have a massive treasure chest that has been filled 2 inch deep with 200 bags of chocolate gold coins, to be a centre piece on our sweetie table! That's a lot of loot for our guests to get their hands on. We still have tickets if anyone wants to cone, but need the money in for the 10 th April. I hasten to add it is NOT fancy dress!

We have thought lots about whether we have another child, to make us a family of 4 again. There is no definitive answer, but the thought of going back to having babies is not something I feel ready for or even want in the future. The truth is that since Harry was born 7 years ago I have never had much me time. Callum was born when Harry was age 2, which proved very challenging at times, managing a toddler and a baby. Callum was always so determined, not a content baby and not one that slept well. Very early mornings was the order of the day for several years. Just as life seemed to be settling down post our house move and the boys became able to play more contentedly together and I could sit and have a cuppa, cancer rolled up and swept us off our feet. Cancer turned our world upside down. Suddenly it felt like we had a new born again as the effects of treatment meant we constantly had sleepless nights attending to Harry. Often vomit bowl at the ready. Post treatment and when Harry had relapsed, cancer itself caused many side effects, such as pain and managing this was a full time job some days. The emotional rollercoaster of dealing with this for 2.5 years meant we were fatigued beyond imaginable by most. Thus, going into motherhood again as I begin to reclaim my life a bit just for me, seems extremely scary. Paul's shifts mean I spend a lot of time as a single parent. This is ok now as Callum and I can have such fun and adventures. Having a baby in tow would make planning outings more difficult and challenging. Callum could feel left out, or he could feel like the grown up brother. He has said that he wants a brother, but aged between 3-7 and he should be called Harry! If we were to have another baby then it should be a boy not a sister! We could adopt, but I don't think we feel in a position to take on the challenges of someone else's child, probably being age 3 plus. Our finances were always geared up to having lower child care fees as the boys grew, to set against the fact our mortgage grew with the house move. A baby would mean we had no spare money again.

However, a baby could bring new hope, new meaning to our family. Callum would have a sibling and though the age gap would be great compared to what we set out to achieve, when Callum is older he could very much appreciate having a sibling. In some ways I feel robbed of enjoying Callum as a toddler, due to having spent so much time with Harry in hospital or managing his needs at home. My patients was curbed by the fatigue I felt from managing Harry. However, I have a very special relationship with Callum now and he will openly say he has the best mummy and daddy a boy could wish for!

Currently we are enjoying adventures away in our caravan. We have a holiday in Turkey to look forward to. A holiday we felt unable to book last year or able to enjoy. Callum is having swimming lessons and can now swim 20 meters without arm bands. He knows that we are going to Turkey, where there will be slides into the hotel pool. He is very excited about going as we are too. I have been buying summer clothes, having not had a holiday abroad in years. Apart from our day trip to Lapland, we last went abroad to Nice when Harry was age 1. This is therefore an adventure for us and a first to be going all inclusive! 

Our major series mud run raised over £1100 with gift aid for Candlelighters and Martin House. Thank you to all those that sponsored us. Our ball is on the horizon and we hope to raise lots more for Candlelighters and Nuzzlets farm. There is the possibility of another fundraising venture on the horizon too, which would be under the umbrella of Harry's legacy, this will take a few months to secure, but watch this space. 

Harry may have lived till he was only 6, but his memory will live on. 

This next couple of weeks will be hard to get through as the 1 st year of living without Harry draws to a close and the 2nd year begins. My memory gets in a tangle these days as I still think it was last year that we had great adventures with Harry, but the reality is that it was 2 years ago. The passage of time can be complex. Some days our adventures seem like yesterday and others they feel an eternity away. 

This time last year was truly, truly awful. Those days I think about, what Harry endured, I think about, but most of all I think about Harry's smile, his courage and his determination to the bitter end. 

Fly high Harry, we will always love you. Forever in our hearts and memories. You are still shaping the future as we raise money because of you, to help create a better path through the minefield that childhood cancer is, from diagnosis to beyond the ashes. 

March 2015

This Sunday is Mothering Sunday, my first without Harry. I am trying not to think about what the day means. If you remember from my last blogg, I am in fact doing a 5 km mud run that includes an assault course. The assault course involves crawling under barbed wire in the mud, going through mud ditches and freezing cold rivers! In January it seemed a good idea, I thought the weather would be spring like, but currently it is still very mixed and wintery!

Having entered this challenge at least I have been focused on this and not Mother's Day. I couldn't face going to church and collecting flowers from one son, not 2. The focus being on mother's and their children. I must be greatful that I still have Callum, my mummy status well and truly still alive. 

Here is a link to our charity page, we are completing the challenge in aid of Martin House Hospice and Candlelighters.

http://uk.virginmoneygiving.com/team/wharfedalewarriors10

Candlelighters have opened up a new building called 'The Square', it will be a new support centre. It is a 4 story building just outside LGI, very handy for the oncology wards. It has been refurbished throughout, restoring features to their former glory. I visited 'The Square' a couple of weeks ago and met a couple of oncology mums whom have children post treatment. The centre is lovely. There is a reception area with lots of seating and tea and coffee readily available, as were cakes! The team are expanding at Candlelighters and the charity is getting bigger, being able to provide much needed support. I have been involved in research with regards what support is needed to support oncology families and friends and at long last the tide is turning. Candlelighters have a 10 year lease on the building and money ring fenced for support workers. Other support workers will be commissioned as the areas of need are identified from families visiting the centre. There is also a therapy room providing massages and reflexology to those families affected by oncology. The future looks very exciting. A group of bereaved mums all with children whom died from Neuroblastoma will be meeting up next week. I know some of the mums, but not well and facebook provides the main link as we live different sides of leeds. 'the Square' will provide a tranquil  environment for us to meet up and share our experiences and support each other. Bereavement I am realising is with us for life. There is no real recovery, but an ability to learn to cope better. There will always be those down days, those sudden flashbacks, but we are learning to live again. We have bought a touring caravan to try and just do that. Regroup as a 3 and eventually have holidays with others.

Harry's first anniversary is on the horizon. My eyes well up thinking of that last day, how I told harry to fly away, to a place where he would have no pain. His skin was breaking down all around his bottom, with several grade 5 pressure sores. No mother should have to smell her son's rotting flesh, or dress the wounds. That last day was so surreal. I knew he was close to dying. I remember getting my hair done that day, as I knew we would be attending his funeral in the next couple of weeks and didn't know if I would have the strength to sit through a hair dressers appointment once he had died! Strange really. However, I was with Harry at the very end, holding his hand and telling him that it was ok for him to go from this world. 

We have so many happy memories to hold on to and share. I was watching videos with Callum the other day. He can't remember a lot of things we did, he can't remember harry being in hospital, but he will always love his brother, that I do know. 

Christmas photos

 

Post Christmas visit to Harry's tree

January 2015

So we got through Christmas. We headed to Whitby from the Sunday before Christmas until Boxing Day. We had booked it a while back, when we realised we just couldn't face spending Christmas at home without Harry. It was a coping strategy and one which worked. We all love the seaside and especially the East Coast. We do actually have quite a few memories of times with Harry in whitby, from taking him as a baby, to when he was 3 and we holidayed at Sandsend, to taking him during treatment. The first day out we had post the beginning of treatment was in January 2012, we were so shuffed that Harry had eaten his fish and chips, though the moment lasted seconds before Harry threw it all back up including his NG tube! Perhaps it was an initiation test into the world of cancer and our first lesson in learning how to carry on, enjoy the day and get used to deviated trips to 

LGI!

We all had our own thoughts about Harry over Christmas. Callum could remember building sand castles on the beach with Harry and talked about him too, which was lovely to hear, but painful too, as it enhanced our miss of him. I felt close to Harry in Whitby and I am sure he was swirling above us smiling. I had thought we would have some sought of ceremony to acknowledge Harry, but this wasn't needed as we acknowledged him constantly. The weather was kind to us and Callum just loved going on the beach everyday. Getting out for a Christmas Day walk at Sandsend was refreshing and lovely too. The change of scenery was definitely good for us. 

On our return Paul then commenced a set of 6 shifts. I saw other members of the family with Callum, then headed to Derby for New Year's Eve. Since paul was working nights I took the opportunity to visit Kate and her little girl Eva. Callum gets on well with Eva, being of similar age and he really enjoyed having company. My aim was to return home New Year's Day, until I slipped backwards on the ice and fell back on my head. This was a frightening experience and all I could think of was that I was going to have a brain haemorrhage or in time I will develop a brain tumour! Well, when the inevitable has happened ie childhood cancer, the unlikely does happen. I was also acutely aware that though I miss Harry and want to see him again, actually I feel he is in a good place now and my journey on earth needs to continue as Callum needs me more! I was checked out at A and E, seen pretty quickly due to the nature of the injury and returned to Kate's for another night. So new year started with a bang! 

January is a strange month, one where dark mornings and nights continue, the hype of Christmas over and spring seems long awaited.

For us though, January symbolises something new, the month Harry's cancer grew silently, paralysed him from the waist down and really was the beginning of the end. Tonight, one year ago, I thought we had months still ahead of us as a family of 4, but 72 hours later Harry was in trouble, he'd lost the feeling in his legs. 

Grief has it's twists and turns, just as I feel upbeat, I am suddenly struck down by pangs of heart ache. We take baby steps and try and get through each day. I know the next few months are not going to be easy as we relive Harry's last few weeks with us. I miss Harry more than ever at the moment, the true realisation that he has gone forever, yes he lives on in our hearts, but never being able to cuddle or kiss him again is truly sad. I also remember the battle to keep on top of Harry's pain those very last weeks and how Harry couldn't tolerate being cuddled. He always reminded us so very frequently how much he loved us. 

Callum is an inspiration and he makes me smile. He is learning to live with his grief too and can become angry and upset at times, right out of the blue. He so very much treasures Becky and Bumbi - Harry's toy dogs, in fact they are going to get married and we have to make them outfits! 

I am also beginning to realise how much Harry meant to his friends. They still very much miss him. For some of Harry's friends who had know him since birth, he was a constant. These children have had to face loss and bereavement at such a young age, one where emotions are mixed and misunderstood. They have also had to learn that humans can die at any age and this fact has for some unsettled them and meant they have become aware of their own mortality at an age where playing should be the main agenda. 

I have also become aware how much harry's death has impacted on our friends too. I realise that there is a sadness amongst many of us. I don't know what to do about this or how to move on at times. The journey of grief is a steep learning curve. We are still climbing that massive mountain to recovery. At present it feels like we are stumbling, slipping and sliding in the mud, at times we manage to get a grip and take giant leaps forwards and other days, the rain sets in and the mud thickens and we slide down a few feet. I realise it is still early days and we need to be kind to ourselves. 

I have therefore entered myself along with 10 other mum's into the major series challenge on March 15 th. It is a 5 km assault course run by the army! March 15 th is Mother's Day and what better way to ensure I don't end up in an emotional heap missing Harry, but to honour his memory, by completing this challenge in aid of Candlelighters and Martin House! I may end up in a physically exhausted muddy heap by the end, but I am told it is exhilarating! Watch this space to find out more! We are also getting organised for Harry's ball on Aoril 25 th. Tickets are £40 each and the event is being held at The Craiglands Hotel. We are collecting money in thick and fast, so get your names down if you want to attend. 

Professional. Photos

December 2014

I can't believe that we have somehow managed to keep tumbling forwards to December. Such a strange month with parallels of sadness and happiness in different amounts each and every day. Sadness for not having Harry, missing his beautiful smile and the sound of his laughter. Sadness for only having memories to look back on, savour and cherish. Sadness that another year looms, a year where we get further away from the time we held Harry's hand, felt his warm body, nursed him and let him ago into a world where he could be pain free. A year where I have known other little ones die and know their families embark in that journey of grief too. A year where I know children are still battling for 'normality' post treatment, a year where I have witnessed children relapse and also be diagnosed with new cancers. 

We started this year with Harry doing really well. I had concerns about the levels of buprenorphine that he was on to manage his pain and the side effects this had on him. I was battling to secure a meeting with our consultant and the consultant from Martin House to review Harry, seeing as no one had reviewed him since he was seen in the fracture clinic in November. We felt in the dark with regards managing his drugs, but felt that Harry could have lasted months. I also secured a meeting with school mid Jan and discussed how extra support could be provided for Harry, as the drugs clouded his memory significantly. New learning was very hard for him. What I had no idea about was whilst we were preparing for our centre parcs break, which happily seemed possible, a tumour was growing rapidly on Harry's spine. Cancer grows silently. On Saturday 18 th January I had 2 giddy boys in the swimming pool. I remember being exasperated with them for playing about in the changing rooms afterwards, because we had a tight schedule to get them both to birthday parties at separate locations. Each enjoyed the parties and then we headed over to Grandma and Grandad's house. We stopped at some friends on the way. Harry was not himself at our friend's house, complaining of pain, so I gave him extra oral pain relief once at Paul's parents house. I remember the pain relief made Harry 'happy' and he wanted to hug the TV as there were animals on it. He had an unsettled night. However he awoke the next day in a good mood, but seemed unsteady on his feet, I thought he was messing around. However, when he was trialling out a larger bike in the afternoon, it was evident he couldn't ride the bike due to poor balance. Only a few hours later, Harry had no feeling from his waist down. I realised this when I sat him on the dining room chair and only by luck I reacted quickly to stop him falling forwards and hitting his head on the table, he had no sitting balance. We made phone calls and decided to take him to LGI on the Monday, yes the day we were due to go to centre parcs. The worst day for cancer to take over our lives again. Harry had a mantra all day in lgi and it was 'I want to go to centre parcs!'

I had been organised the night before and had packed mine and Harry's things together and Paul and Callum's things together. I knew Harry would end up being in hospital overnight. Paul came to lgi on Monday and once a plan had been established for an MRI scan we decided that Paul should head to centre parcs with Callum and meet our friends as planned. Having had an MRI and consequently radiotherapy to shrink the tumour, Harry and I made it to join the others at centre parcs for 1 night. Probably one of the biggest achievements of my life. The show went on. We delivered Harry's wish to be there, not as we planned, but we got there and in the swimming pool, capping Harry's catheter creatively as proper swimming attachments had not arrived  in time. 

The tumour was the beginning of the very end. For a couple of weeks anything seemed possible as Harry very quickly adapted to using his friend's wheelchair, but Harry didn't just have a physical disability, such as a spinal injury, but cancer, incurable cancer. Thus right before our eyes we saw the cancer take hold. Blood and platelet transfusions couldn't hold Harry's blood counts high enough for long and then he got an infection in his line. He had several grade 5 pressure sores, his appetite was zero and his pain was hard to control. The last 2 weeks were unbearable, we wished everyday of those last 2 weeks for Harry's pain to end, the hardest thing a mother could ever concede, but the kindest thing for Harry. 

So as you all know Harry slipped away at about 7.40 pm on the 8 th April with myself and Julie White at his side, whilst daddy cuddled Callum downstairs. 

So fast forward to December. We have put decorations up, cried over seeing decorations that Harry so lovingly decorated over the last 2 years, cried over seeing the decorations we bought in Lapland, the memories of that wonderful day touch our hearts warmly. Cried over the Santa sack that has Harry's  name on it being empty this Christmas. I also have shed tears over deciding which photos to choose from our professional photo shoot which myself, my sister, Olivia and Callum did, because these photos do not have Harry and symbolise another giant leap forward.

Whilst we shed tears, we smile too. Callum brings such a large light into our lives. He is a star in his nativity play and he is a STAR. He has grown up so very much since starting school. He LOVES arts and crafts and can start a project and be as manic about it as Harry was. I never saw that happening! Callum talks lots about Harry. He saw the film 'Father Christmas' today and talked about Harry as he saw Father Christmas travel through the skies on his sleigh. We struggle to comprehend heaven, the after life, what it is, how we look. To Callum he thinks we can go and visit Harry in a rocket or his idea today was to send a telephone up to him via a balloon so we can talk to him. If only! Callum talks fondly of Harry, which I treasure. Callum has just started wearing Harry's last pair of trainers. The trainers were bought in January this year. I remember the day distinctly that we bought them, Harry was in his wheelchair. Harry's trainers were getting on the small side, I was aware of the fact that he couldn't feel his toes and didn't want him getting pressure sores, so we got him new larger trainers, with the hope that the radiotherapy would work and he would soon walk in them. Now Callum is able to take those trainers on new adventures, to run far and wide and carry on the meaning of life!