Tuesday, 27 August 2013

27 th August

Since my last blogg Harry has had no sickness! He has had days when he's slept till lunchtime, a side effect of the fentanyl patch, but on the plus side pain has been minimal! We have managed to get out and about and had a great day at cannon hall farm meeting friends from university (from 1997!) up with their children on August  18 th. Harry was on fine form and able to climb on the climbing frames, run about and play with his friends. We changed his fentanyl patch whilst at the farm, to try and time the side effects kicking in whilst he was asleep. However, Harry woke up quite grumpy on the Monday and was erratic in mood. This is a side effect of the fentanyl patch, but to make him pain free it is a trade off! We have a great afternoon on Tuesday and head to Golden Acre park, where we are on a geocashe hunt with some of his friends. Having slept till lunchtime Harry had immense energy and was in a fabulous mood. We collected Callum early from nursery to join in too! Callum is acutely aware that Harry is on his summer holidays from school and said a couple of weeks ago that he should have a holiday from nursery too, apparrently even his nursery teacher said so! Callum's nursery runs 51 weeks a year and I need to keep him in, it's great back up for managing Harry's bad days and Callum loved going really, he just thinks he's missing out on having fun!  
Wednesday was an exciting and good day. It was the day Harry got his first pet - a hamster! He's  an early birthday present. i took both boys to choose him. Callum had agreed that Harry could ultimately  decide which hamster to buy, but he loved joining in with the experience! So we have Joey! Harry loves him very much! Grandma and Grandad came to stay for 2 nights on wednesday too.  Grandad to help daddy lay some  paths in the garden and put our broken patio back in situ. Harry had an arts and crafts day.  A worker from Martin house visited too, to play with Harry for a couple of hours. She always brings crafts for Harry to do. He decorated some mugs, painted and made some models! 
I had my hair cut whilst Harry was being entertained and whilst Callum was at nursery too, I also had a potter around town! 
Thursday was a bad day, again the day after a new fentanyl patch was given. Harry was in an erratic mood again, lasting all day! Callum was at home too and Harry wasn't very nice to Callum, hitting and shouting at him much of the day. This behaviour we know is the impact of Harry's medication and not our Harry. Harry is very hard to distract and manage on these days. It is emotionally exhausting and heartbreaking, particularly when harry asks me when his port is going to be removed and I tell him that it can't because he still has cancer cells present. I was thus dreading Sunday 25 th aug, whereby Harry had, had another new patch administered on the Saturday, but he had a fabulous day! We went to church, whereby he saw his friends and ran around afterwards! We enjoyed the sunshine in the afternoon and went to Harewood house with Granny, Grandad and Grandma too. Daddy and Grandad were having another day laying paths! 
The boys loved running around the grounds, seeing the birds, in particular the penguins and then playing on the climbing frames before it was ice cream time! We came home and had a BBQ! The sun was still shining, unusual for a bank holiday weekend!
The sun still shone on Monday too! Paul finished the paths by lunchtime with his dad and it was hotting up so a good time to finish too! The boys loved having their patio back and were playing in their sandpit and bouncing on their little trampoline! It was too hot to sit in the garden, by the afternoon, so we headed to Burnsall and paddled in the river there. Fishing nets in hand, we manage to catch one tiny fish, but this created enough excitement and made up for the fact Harry fell in the river getting almost completely soaked! Having changed he played top trumps with his dad, whilst I paddled with Callum some more, then I watched the boys play football, well until Callum   ran away with the ball and refused to give it back! We then decided it was tea time! Having looked at the menu in the Red Lion pub, I see a notice for pizzas in the nearby manor house! We head there and sit outside by the river, whilst the boys play and we await our pizzas! Beautiful stone baked pizzas at good prices too! They serve them Saturday and Sunday tea times and bank holidays too. We will be back! A great finish to the bank holiday weekend and a very far cry from the one we had last year. Harry was so very poorly last year after his radiotherapy. We felt so hopelessly alone and overwhelmed the bank holiday last year, it was horrendous.  Harry was vomiting frequently, his NG tube frequently came out too, we had frequent trips to LGI to have it refitted. Nothing seemed to help Harry medicine wise until he was readmitted at the beginning of September for nearly 3 weeks. Intravenous medication was the only answer. We really thought Harry was going to die.
Though the future is not bright for Harry now, we feel blessed to have these good days with him, whereby we can all smile and have fun and continue to build our memory box! I have my fourth photobook of the year to prepare this week, so many happy photos that we will treasure forever! 

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