Wednesday, 10 April 2013

wednesday 10th April.

Harry's platelets remain at the score of 54, so creeping up very slowly, but still too low to be eligible for any further treatments. So no decision making yet, though still fairly sure the palliative route is what we feel is best. Harry has put on weight, which is brilliant. Since no further treatment is viable, then we can reduce his medications, as his immune system isn't going to immediately plunge with more chemo, so this is good too. Harry's consultant was really pleased with how fantastic he is at the moment, yes he has the occasional twinge in his legs, but nothing calpol can't fix at the mo! So currently we can make the most of life with Harry. It is very hard though at times, because our minds cannot get away from the fact that Harry is slowly dying, but we are doing our best to take each day as it comes and make them count. Yesterday, Harry visited daddy's work and sat in a police helicopter, he was grinning from ear to ear as you can see from the pictures in the previous blogg entry. He also got to sit on a police motorbike, see the horses and an unmarked car, most boys dream of this!
We have been really busy over the last week, Harry and Callum have been to Hesketh Farm, where they saw 2 lambs being born, we also met up with friends at the Ice Cream parlour. Harry's been swimming, which is an immense thing still as Harry remains without his NG tube. We have been to Whitby, which certainly had the chill factor on the beach, but the boys were togged up in snow suits, again you can see them in the sand in the previous blogg! Harry has also helped drive a steam train at Embsy, curtesy of a friend of Paul's whose son is a volunteer there.  Friends stayed over at the weekend too. This was good as well as hard, as when friends have known us years and Harry since he was born, we can see their disbelief and pain that Harry will only be with us a short time. 
Harry currently adores his remote controlled aeroplane given to him by his friend Seth, he loves flying it! Definately his father's son, which I think makes it all the more difficult for Paul to come to terms with the eventual loss of Harry. To see him so well, its hard to believe the cancer is there, but it is.
Tomorrow we are taking the boys to Martin House Hospice for the day, for them to see what goes on there and become familiar with the environment. I have told Harry that it is a place whereby he can have transfusions if ever needed again, or treatment for pain if his legs hurt aain, as an alternative to hospital and emphasized all the fun things they have going on. Fingers crossed he'll love it. The music therapist is in tomorrow and they have a great set of drums I know Harry is looking forward to banging!
We have our trip to legoland planned for next week. The boys are super excited. We pray that Harry can remain well for the next few weeks, even months, so we can continue our adventures with him. However, to get Harry into school, continue with routine and life as it should be, is also a must. Harry loves his friends and doing the things all 5 year olds boys do. May the sunshine continue!

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