Wednesday, 19 June 2013

19 th June 2013

Harry made it to the carnival! He had the best seat in the house, in the front of a bike. See picture below! When it hailed he had shelter and stayed dry unlike the rest of us! The Whartons won the overall best float, which was brilliant. So glad we could be a part of the carnival and the big win!
Sadly Harry has deteriorated since Saturday and we had to give him quite a few breakthrough doses of morphine over the weekend. Harry ended up being so agitated Sunday it was awful to witness. The morphing made him itch madly and contributed to his irritability and it was evident we were not on top of his pain. We felt unable to manage him at home so we chose to get him into Martin House Hospice.
This was the best decision ever, he is being frequently assessed and monitored.
The grounds are fantastic and he managed to play for hours on Monday with his friends and brother who visited. Callum if course missed me as I had stayed over with Harry and we are back to managing and juggling the needs of both our boys.
Callum could stay here, but whilst Harry is so up and down we have decided that its best Callum doesn't stay. He's been in nursery and last night Granny and Grandad had Callum to stay, so both Paul and I could stay at Martin House. Particularly as it was Paul's birthday!
Harry has had to have his pain relief increased again last night. His medications are being tweaked to try and get on too of the pain and reduce the side effects. We are not there yet, so he will remain here a bit longer.
The trade off of trying to manage his pain, is that he is a bit confused, grumpy and spaced out.
In truth we think the disease is spreading rapidly and I fear I have lost Harry as we truly knew him as the drugs take over.
We have agreed to get his legs x - rayed to try and get a better idea of how the disease is taking shape and if radiotherapy may be an option for pain management.
His bloods were taken last week and his platelets remained at 55. They have never reached the magic 75 to be able to consider any more chemotherapy for Harry. A decision that was thankfully taken out of our hands.
Getting Harry comfortable is a priority at present.
We have now reached the significantly hard part of this leg of the journey and it is truly heartbreaking.
The balance of drugs to relieve pain and the trade offs these present.
I will leave you with some lovely pictures to cheer you up after you have read this!

No comments:

Post a Comment