Wednesday, 12 November 2014

Remembering .........

I have just tried to post this update to Facebook, but it won't let me! It says the content contravenes facebook policies! So here it is, where I can freely post it!

3 years ago today Harry had not one, but 2 ultrasounds on his abdomen at LGI.  2 weeks prior my pleas for an ultrasound had been ignored during a stay at Airedale hospital. He only had an x-ray, which just highlighted constipation!
On this fateful saturday evening I was told on my own (Paul was at home with Callum), in the parents room on ward 51 that Harry had a large tumour sat on his adrenal gland, possible into his kidney too. The tumour stretched right across his abdomen. I heard the words Neuroblastoma cancer for the first time. A lot of the conversation is a blur, but I distinctly remember being told that the treatment plan would involve us having to take time off work and it would last for months (not wrong there!). Wow I thought, money, Callum, our family.....
So we were catapulted into the world of oncology. 
Within 1 week Harry had, had several anaesthetics, scans and one big biopsy, which involved a 9 inch incision. He also started chemotherapy;  had his first blood transfusion; his first NG tube; his first port was inserted during his biopsy, which has been accessed via needles,  so many, many, many times for treatment, blood tests and for the many blood and platelet transfusions that kept him going. 
Our world was turned upside down....
So 2 years ago we were praying that the treatment would be a success and the nightmare would be over, alas not so.
1 year ago, we prayed that Harry would make one more Christmas and have quality of life to enjoy it. Our wish was granted!
This year, we are nursing fractured hearts. Working our way through the mist of grief. Grief is a form of disability, but it is masked, not easily visible to most and unrecognised. A broken heart is what we have. Like having a disability we have good and bad days, we smile,; we laugh; we cry. Each and every day we think of Harry and have numerous private gulping moments. As time passes we get better at putting a mask on. 
The lesson is to learn to fight, carry on and not let cancer consume or define us. 
Life is for living, none of us knows when our journey will end. 

So to mark the first anniversary of Harry's passing, we will be having Harry's ball at The Craiglands Hotel on 25 th April 2015, in aid of Nuzzlet's farm and Candlelighters. The theme will be pirates, a theme very close to Harry's heart. Tickets have now been printed and are available.  Inbox me for more information or how to pay. Cheques should be made payable to Harry's Ball.! 
Live, love, laugh,
because Harry did! X

The picture below of Harry was taken in September 2012, post radiotherapy. He was slipping through our fingers right before our eyes, constantly vomiting from the effects of the radiotherapy on his abdomen. I pleaded yet again for him to be admitted. Eventually at the end of August he was readmitted and commenced on TPN (total parental feed via his port). Fortunately he began to regain strength, but not before one of his lines in his port became infected! The trials and tribulations to just try and seek survival. The amount of machines and fluids that Harry is attached to speaks volumes! The path of childhood cancer is a long and winding one and effects not only the patient and their family, but a community too. 


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