Wednesday, 25 September 2013

Wednesday 25 th sept

Our world is such a strange one these days. We have parallels with our peers and at times complete opposites. 
I make a point of not talking about how Harry is or us most of the time as what is the point, it is not good playground banter. It is hard for people to comprehend anyway what life is like at times when seeing Harry run around. 
However, our days do not start early in the morning like most of yours. I wish they did, but they don't. Callum wakes early and will often have breakfast and watch the i player on the IPad. We try and make the least amount of noise so not to wake Harry. On a nursery day I will get Callum up and off for about 9 am, I am trying to get him in earlier as in the holidays he was getting in later and later, not wanting to miss out when Harry was off school! 
However, on a non nursery day we can often still be in our pyjamas at 10, not wanting to go upstairs and get dressed and wake Harry! Sometimes, we feel the fog on our lives in the morning, as neither of us sleep well these days and trying to get motivated to start the day can be like treading through treacle! I would say we are frustrated and angry at our lives at times. Anger isn't something I like to harness or let take hold of me for long, but it is there. It's hard to accept that I will only return to work when Harry has died and only then will our lives have more routine like it used to. I also know once Harry has died how I will wish ever so hard to just spend one more minute with him to see his smile and hear his laugh, jokes and good humour. 
So we press on and have projects in the house to keep us occupied.  We are still making progress with our house and have finally lawned the raised area in our back garden with paths complete! Sheds are going where they should be and not stacked up at the bottom of the garden. The garden is coming to life again and yes I know it's Autumn, but a good time for planting !
These projects keep us ticking, keep us focused and keep us from thinking about cancer! 
Harry had a bad day last Thursday. He slept till lunchtime, which is not unusual after a patch change, he awoke in a huge grump, not unusual either, but the level of pain he was in, was more than he has been in for weeks. I had to give him extra break through medication, the first time since August. Harry's tummy hurt, his legs, his spine! As you can imagine my fears escalated as to the future and tears trickled down my cheeks as I drew the syringe of medicine from the bottle to help ease his pain. 
The medicine made him sleepy and he laid in front of the sofa watching TV and fell asleep. 
My sadness turned to Callum too as since Paul was out taking his car to the garage he missed out on socialising with his friends as I could not leave Harry. 
However at 2.15pm Harry suddenly proclaimed that he wanted to go to school! Music to my ears! We arrive for the last lesson!
Harry was shattered on his return home and went to sleep again! I was unsure how he'd be on Friday, but he awoke raring to go. So much that by the time I had dropped off Callum at nursery and had gone for a run, Paul had returned home having dropped Harry off at school. Fabulous!
So we had a good weekend! The weather had brightened and we took advantage of the sun on Sunday and headed to Whitby. We caught the steamtrain  from Pickering to Whitby, met friends up, enjoyed lunch and then headed to the beach! The sea was actually warm having been heated up all summer, though we did just paddle! The boys love the beach and so do I! A great day had and a much needed boost after the dip we had on Thursday! 
Harry still has intermittent pain, nothing to stop him doing anything, more of a niggle and annoyance. I am so very acutely aware though that, that is how this all started and we are very nearly at the 2 year anniversary of all this. The 10 th October 2011, the day Harry first awoke with intermittent leg pain, pain that baffled the medics until diagnosed on 12 th November. 
 Due to the pain present I fear returning to changing patches every 72 hours and I think will remain at 48 hour changes as he does have a really good day the day after patch change and we have to make the most of these!
Harry made beavers tonight and for the first time in his uniform. You can see him in his uniform at the top of this page! 
Harry keep smiling my beautiful boy! 

1 comment:

  1. I came across your blog by accident today after reading your comment on a fb post. I dont know if leaving a comment is the right thing to do but my son also had Neuroblastoma and I felt I had to. I am writing this in the hope that your consultants are like ours and offered you everything available to Harry but we have come across other NB families and know this is not always the case. Your son looks so happy in the photo's, my heart breaks for you and your family and I will keep Harry in my prayers.

    I too kept a blog: should you want to know more about Ryan.