Wednesday, 21 May 2014

Calendar tv!

Tune into calendar tv tonight, 6 pm on ITV to see a short piece featuring Harry's book and Nuzzlet's farm!

Above is a link  to buy the book!

Thursday, 15 May 2014

How are we?

The question everyone asks, how are we?

Well, it's a difficult question to answer, because of course we are not fine, how can we be, it's only just over a month since Harry died, though it feels much longer. 

We are doing our best to get on with life and create new routines and not sink into a deep depression. We have a massive piece of our lives missing. Our lives revolved around Harry's illness. Every plan we made depended on how well Harry would be as to whether we would achieve the plan. Towards the end, we made no plans, our lives became so small that only trips out for an hour at a time were possible. Our lives were mapped around Harry's care needs and the various care staff that came into our house each day. Paul went back to work in January and so I was Harry's main carer and I did what I could for Callum too. 

Now Harry is no longer here, I guess the world is our oyster. We went to Northumberland on holiday the last week in April. The weather was mixed and when we were in the caravan, just the 3 of us, Callum's playmate was so obviously missing. It was good to get away and returning home feels a little more manageable being in our home surroundings, but the grief comes in waves.
We have lost our fantasy, our family of 4. We planned our family carefully, not having Harry until we were financially secure enough to do so, then waiting 15 months to conceive him, then deciding to have another child, with the aim to have a 2-3 year age gap, so that the children would grow up close in age and be good playmates. We achieved this aim, but sadly we couldn't keep hold of it. 
Having something you so dearly wanted, then having fought to keep it, but finally having cancer take it,  is so truly devastating.  
We have to grieve the fantasy, the loss of what we set out to achieve and had for a short while. 
We have to develop new routines and ways of doing things. 
We are not ready to go forth and explore the world yet. We are not ready to have that expensive dream of a holiday, because currently our hearts are not healed enough to go forth and leap that far. 
It's a case of baby steps and small goals. 

Some times we are fine, then a trigger point will cause a wave of grief and depending on the social situation, depends on whether we hold our breath until the wave passes or if on our own, we may embrace the wave and have a few tears or a few moments of deep sadness. 
I collected Harry's things from school last Friday. These included his school work that he did. When I looked at them properly at home I felt such huge sadness and loss, that there will be no more work, no more pictures, no more handwriting. Harry's reading progress book had the last book Harry read at school recorded and the title was 'fly high'. Very poignant I thought. The book was about a plane flying high and Harry really liked reading this book. 

Having spent so much time with Harry in the last few weeks of his life, Callum had little attention from us. It has been good to get out and about with Callum. To meet friends up and go for walks on The Chevin. To get Callum out in the great outdoors has been fabulous. It highlights how small and limited our lives had become over recent months or even much of the last 2 1/2 years. We did achieve many adventures last year, but Harry's stamina was always an issue, we couldn't go for long walks on the chevin or long cycle rides. His health was very unpredictable and if he over did it one day, he would tire the next. We made the most of our time with Harry and I think that has brought me peace. We accepted that Neuroblastoma is one big beast in the world of cancer. Harry had already had second line chemotherapy in February 2012, when the initial chemotherapy did not clear his bone marrow. This TVD chemotherapy had harsh side effects, fortunately only 2 rounds were needed to clear Harry's bone marrow and enable him to return to the original protocol pathway. However, when Harry relapsed, we knew that his platelets were very low, around 40 and so he was not in a good place to recieve further chemotherapy. Any further treatment at that time would have caused him huge problems. We already had witnessed the side effects that could occur, for our family unit and for Harry, further treatment just wasn't the right pathway to follow and so we took life by the scruff of its neck and went forth and achieved so many adventures. The help from those on the way that fundraised  for us to keep having trips, was and always will be remembered and treasured! 
As you all know Harry lived just over a year post relapse. 
We were told in June 2012 that he wouldn't make the summer, but he did and he made it through winter and saw the commencement of spring too. 
Life was very unpredictable at times and managing his medication and trying to get that right was a project in itself. I was always keen to decrease Harry's medication when we could and pushed for this to happen, something that was a rare sight. Most cases have only seen increases in medication, not decreases and at times I got concerned that Harry suffered withdrawal side effects, another issue with too little information. This was also because Harry ended up on buprenorphine patches and not fentanyl and these haven't so widely been used in children and certainly not to the strengths Harry reached.  
Towards the end, Harry ended up on such massive doses of drugs, it was a wonder he continued to function to the degree he did. I remember thinking that this  increase this time will surely knock him out, but it didn't, until he commenced on Medazalam to calm him, the Friday before he died. Following the commencement of this drug, we never did have another proper conversation with Harry. I knew that  when he started it, that this was the big boys drug and it would make him drowsy. However, I knew he he had reached the point of being too agitated due to the pain. Knowing him best and inconjunction with his McMillan nurse, whom travelled the 2 1/2 year journey with us, decisions had to be made re keeping Harry comfortable. The hardest decisions ever and decisions no parent should ever have to make.

Now our chapter of our life with Harry is complete. We are now a family of 3 and we need to get used to it. We will never forget Harry, he lives on in our hearts and remains apart of conversation at present. I wonder how I will feel in a year or two, when Harry's friends are older and Harry remains forever 6. I am acutely aware that the pathway of grief is a long and winding one too. As I may feel ok for a while, the passage of time may ease the pain, but at times it may not, as the years become greater for not having Harry with us than it did.  The fear of forgetting what he sounded like, his phrases, the funny things he did. We have photos and DVDs to remind us I know, but even now I sometimes wonder if I dreamt that we had Harry.

Having attended an assembly dedicated to remembering Harry, at The Whartons school yesterday, I realise how much a part of the school community he was. There were many memories shared. Lovely memories about his positive attitude to life, his creativity, being a friend and being a part of his adventures, such as go-karting and diggerland. Although, it was very emotional, it was also lovely to know so many pupils respected him, had time for him and miss him. Even when he was in his wheelchair, some of the pupils shared stories about him decorating it, or showing off how fast he could go in it. Harry was initially frightened that the other children would laugh at him, when he was on his walking frame or in his wheelchair, but I believe his spirit shone through and respect is what he achieved. I hope when children see others in wheelchairs, they remember Harry and know that the chair is not a barrier to knowing the person sat in it. 

Callum is now 4 1/2. I do look back and remember Harry at this age (March 2012). He was just finishing his TVD chemo, then he had his stem cells harvested, then he had a nine hour operation to remove his tumour then on May 16 th 2012 he entered LGI to commence high dose chemo and to have a stem cell rescue, using his own stem cells. This time 2 years ago, we had our final night all under one roof for 6 weeks. We knew what we were consenting Harry to endure could have killed him, it has killed others. We knew if he hadn't had the treatment, the cancer would have grown again and killed him. Having this definite knowledge made signing the consent form the easy part. Watching him suffer the severe side effects wasn't. 
Seeing Callum at this age, I am beginning to realise how much Harry missed out on. We have accepted Callum's place at The Whartons School and have also signed Callum up to some induction sessions at school, sessions Harry was not able to attend. We are preparing Callum to start school in September and we can get excited about it. Callum has already expressed that he doesn't need any new school uniform as he can wear Harry's, which is lovely. I know the excitement around Harry starting school was taken away from us, due to his treatment and the side effects of radiotherapy, which meant he started school late and intermittently, due to further treatment, his stamina being low, the need for frequent transfusions etc, etc. 
What was evident from the memories shared at the school assembly yesterday was how Harry went to school, despite being poorly, enjoyed it and frequently had a smile on his face. I have to say, we pushed him into school at times, knowing he would enjoy it once there, we needed the break from each other and as I know myself, mixing with others can be uplifting and lighten our mood when down. Isolating ourselves can be detrimental. 

I continue to push myself into social situations, knowing the first one since Harry died is always going to be the most awkward. People don't want to NOT acknowledge our loss, but don't know what to say either. We too, are not always sure what to say or how to move on socially, but we are grateful to have you all here, to continue with us on this journey of life. I am truly grateful for Callum too, as my status as a mummy remains. He makes us remain sociable and he keeps us linked into our social circle being friends with the siblings of many of Harry's friends. I remain on unpaid leave for the present time, giving myself space to come to terms with our new life, particularly whilst Callum is at nursey. However, I am hoping to return to work in July. I have learnt so much about life, loss and bereavement, I know I am very much richer for knowing Harry, although my heart hurts and I know the knowledge and life experience I have gained has been so much more than any course could ever provide. The next goal is to keep my registration as a social worker, due for renewal in November. I hope I can achieve this smoothly, but if not, fighting the system I can do! 

Wednesday, 14 May 2014

Our recent visit to Nuzzlet's farm

The link where Harry's book 'runaway joey!' Can be bought, proceeds from this page go towards the costs if running Nuzzlet's farm.