So I last wrote on sat 20 th July! We had a really good weekend. Harry was well and enjoyed his party at wacky warehouse. We managed to have a BBQ with friends Graeme and Tina from Scotland and it didn't rain! We even visited the beer garden at The FLeece for a cheeky couple of beers.
On Sunday my parents took the boys to church, so Tina, Graeme, Paul and myself could go for an adult walk up thd chevin to visit Harry's tree and enjoy lunch at the cheerful chilli tea rooms. We had a lovely day.
Harry's patch was changed Sunday afternoon and by Sunday tea time I could see how the medication changes Harry 's personality. He becomes irritable, demanding and tired. He remained like this Monday morning. I decided on my own accord to remove the lower dose of patch from harry, reducing the dose from 62mg to 50 mg. my friend Kate visited and having seen him all fun and laughter Sunday morning, could see the stark contrast this medication has on Harry. Monday lunchtime Harry was sick, a side effect as we know from the fentanyl. However, afterwards he was fine, eager to go to school, so off he went with my mum for the afternoon! He had a great afternoon and this is where he settles down again, for a couple of days!
So Harry's great till we change the patch again on Wednesday and Thursday is again not a good day. Harry is sick several times, very unwell and thankfully went back to bed for a few hours.
I discuss Harry's fluctuations with our McMillan nurse in relation to the change over of his fentanyl patch and ask if we can reduce his fentanyl patch again, seeing as he seems in no pain at present.
It was agreed that I could reduce the patch to 37 mg when the next change was due and to increase his anti sickness medication.
Harry is again on fabulous form and we have a great day at Diggerland on Saturday. We went with our friends The Barracloughs. The weather stayed fine and we got on all of the rides. Love that place and again no queue was more than a few minutes! Callum really loved his solo driving experiences, such a racing driver in the making! Jensen Button watch out! There was a car crushing display too, which the boys - including Paul were eager to watch.
By closing time we were all diggered out! I had changed Harry's patch to the lower dose in the afternoon and taken all Harry 's medications with me including the extra anti sickness medication. Harry actually remained in good spirits once home and we all enjoyed fish and chips.
We had everything crossed that Harry would be well on Sunday and he was! He had a big lunch at my parents and enjoyed riding his bike. No sickness and no irritability! Yay! Harry is back! Hope we can can keep this up! Though Harry does have Shingles! The out of hours doctor examined a rash Harry has on his back and tummy, so he has some discomfort with this, but the cocktail of drugs he is already on is preventing him experiencing pain from it, thankfully! Though, as shingles is a derivative of chicken pox it has meant our planned respite stay at Martin House Hospice has been cancelled, for fear that Harry could pass the virus on to those who have not had chicken pox, so that's a shame.
Today we have taken both boys up to the tarn at yeadon, for the first time in a long while. It's the first time that Callum has taken his bike with stabilisers. It was great seeing both boys cycle off. I can't think of a more idyllic past time as a child, getting outside on bikes. Harry is a very competent rider for a 5 year old and Callum has mastered his breaks now too! Just want these good times to never end. It was so worth Harry having this radiotherapy as he is doing amazingly!
Our holiday to Bournemouth is looking tangible now! Yippee! I'm planning on a day trip to the Isle of Wight to see the needles, fill tacky glass shapes with the natural coloured sand and let my boys experience a day out that I had as a child. Think I am the more giddy one!