Tuesday, 2 July 2013

Tuesday 2nd July

Well Harry had his shot of radiotherapy last thurs. He was having a bad day and so it confirmed the need to try and pursue some pain relief for him.
Harry awoke early Thursday morning and was shattered thurs afternoon, but he managed to lie still and be very good whilst he had the radiotherapy on his left side of his pelvis and upper left leg. Harry still has cancer hotspots that we know of in his spine and legs that haven't been zapped, so we know radiotherapy is only going to be a temporary help to him, if at all.
On Friday Harry felt the side effects of the radiotherapy and was sick, despite the anti sickness medications, he was in more pain as expected and generally very agitated.
I did feel guilty about putting him through the radiotherapy and I guess also strengthened my view point on not chasing treatments further afield.
On Saturday he awoke a different child and we headed to Scarborough for the armed forces day. Arriving a little late, we still managed to see the red arrows display and the Battle of Britain memorial fly past, which consisted of a spitfire, Lancaster bomber and a hurricane plane. We sat on the beach to watch the planes and the boys enjoyed digging in the sand. Harry was wheeled about in his major McClaren buggy on loan to us, but was in Good spirits.
He had a fabulous day Sunday, actually running about, so we get our hopes up for more good days.
Monday wasn't good day and we then feel very down as a result. Harry felt very sick in the morning and threw up at lunchtime. We had organised to plant a tree on the chevin with some of his friends in the afternoon. The idea being that it will be a special place for people to go and remember Harry!
Harry did brighten for the afternoon, but was agitated at times and in pain.
I felt my heart break at one point when he was trying to keep up with his friends who were running and he was left behind hobbling along. I picked him up and carried him.
Recently I have really begun to actually realise that Harry is dying. He has lost weight, looks pale and can go from hot to cold very quickly (a side effect of the disease). We feel our hearts are breaking, watching our beloved son crumble before our eyes.
Having thought that the disease is consuming Harry I had a welcome surprise when I returned home from shopping at lunchtime - a bright, cheery Harry, so he went to school this afternoon and had a fab time. He was in a great mood and not in pain when he returned home too.
Harry's smile warms everyone's hearts and was a very welcome sight, as was Harry and Callum having such fun together this evening.
I don't know what tomorrow will bring. I hope the radiotherapy has kicked in and can give Harry some relief from pain for a while and we can have more smiles.

I am posting a link to a fundraising page. Ian Kellar the dad of Seth, Harry's best friend is undertaking a Gruelling bike ride. He is going to cycle 1400 km from London - Edinburgh - London in under 5 days! That's almost constant cycling needed to achieve this! He has chosen the charities the Neuroblastoma society and the MPS society.

The Neuroblastoma society does research into Neuroblastoma and Harry really wants more to be found out as to why he got this type of cancer and how to treat it.

The MPS society is in relation to Harry's friend Sam in his class at school. Sam has a very rare genetic condition called Morquio Syndrome. It is a type of Mucopolysaccharidosis, or MPS, a group of metabolic diseases that cause progressive and incurable physical, and often mental disability and in the most serious types of MPS often lead to death in childhood.For Sam - the effects are just physical thankfully.

Please take a look at the page and give if you are able and if not, via reading this we are at least raising awareness of these 2 rare diseases.

Thank you


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