20.1.2014

Harry deteriorated rapidly yesterday, to the extent he became paralysed from the waist down, by the evening. 

 We have been at Lgi all day having him assessed.  He has had an MRI scan this afternoon, which has identified that there is a large tumour on Harry's spine. This tumour is pressing on Harry's nerves causing him to be paralysed from the waist down. The scan was just of his upper body, it also showed cancer in the surrounding bones. 

We are on ward 31 at Lgi. Seems strange being back in, having avoided a stay here since feb 2013. Harry has just had a catheter inserted as he can't wee. 

We are having a meeting with the radiographer tomorrow, with the possibility of Harry having a shot of radiotherapy in the morning. 

This could ease the pressure on Harry's spine, but if it works, it'll only hold the disease for a limited period. 

The radiotherapy will most likely make Harry sick and so we will transfer to Martin house tomorrow, to help with managing Harry's sickness and ease his pain.

This is all so very surreal. Harry was swimming on Saturday, then he went to a birthday party. He has had intermittent pains of late, but this change has been so sudden and has shocked us.

It always seems that when we begin to look up and see a window for a future, even one that stretches a few weeks, then our world gets shattered again.

Paul is officially back at work tomorrow, though on annual leave, as we were supposed to be enjoying a family holiday in center parcs. Harry is truly devastated not to be in center parcs and has been chanting all day that he wants to be there. We were all so excited about going and counting down the sleeps. 

There will never be a right time for Harry to deteriorate, but next weekend would have better! Grrrrrrr!

This cruel disease takes no prisoners and  doesn't affect anyone in particular, but for us families affected and surrounding friends, it is devastating.

We were told in March 2013 that the disease could grow further in Harry's spine and cause paralysis, we just hoped Harry would have passed away before he had to experience this. Harry is still with us in mind and spirit and so this is so very hard to witness, the fact that Harry's body won't work for him. We were just looking into getting him a bike with gears too, to help him ride with more ease. He loves cycling so much.

We need to give radiotherapy a try, but I fear so very much the side effects and wonder about the real benefit, knowing that the disease seems quite prevalent in his little, frail, body.

Tomorrow is another day, a day for more discussions and the main thing is to keep Harry comfortable. 

Being back in Lgi in this way resonates so many memories of initial diagnosis. This unplanned visit is so hard. Harry is fighting, shouting his protests at being here. Martin house is no center parcs, but it will make a big difference to us all. They have more staff there and I know we can get Harry at his optimum by just being in an environment that is less medical. I hope Mary's farm are visiting as he loves the animals she brings and this makes him smile.