Friday, 26 October 2012

26th October

Well this week has been a totally different week to last week, thank goodness. Life settles down and Harry goes from strength to strength. Last Friday he had platelets in the evening, he was borderline needing them, but glad he did as he was tumbling all over, when we visited Catherine, Paul, Daniel and baby Thomas on the Saturday. Harry was trying to negotiate Daniel's scooter, but kept falling over. Thankful he'd had a platelets transfusion, so he would at least clot if he grazed himself! Also I think he would have ended up black and blue with bruises from all the leaping around Callum, Daniel and Harry did, lovely to see!
So on Sunday my parents had the boys, so Paul and I could have a very adult trip to York. A trip we had planned last November, but due to Harry's cancer, alas not  taken till now. We have had the odd meal out whilst Harry has been at LGI, but it was so good to go out and know that Harry was in good spirits and able to have a great day out with his brother and Granny and Grandad. They went to Temple Newsom for the afternoon and as my mum said it was like old times, but each boy a year older! Paul and I really did enjoy our day out and much needed time together. The sun shone and we were able to bask in the sun by the river enjoying tapas and a cheeky glass of wine!
So as the week has progressed Harry has been in school 10.45am till 3.15pm mon - thurs. Today has been a training day, so Harry styed at home. He enjoys school, though he says they don't play like at nursery! He was also a bit dubious about going 4 days in a row! Wait till it is 5 and full days!
Harry is still on his rhetonic Acid tablets, they finish on Sunday and these give him some joint pain and dry skin. But nothing compared to immunotherapy. He still awakens on a night, though at least getting better. Wednesday night he awoke alot around Midnight and he complained of pain in his throat. I feared he was brewing something. He is still on the borderline of being neutropenic, so very susceptible to picking up something and having a temperatre, which then means a 5 day hospital stay at least. However, after a dose of pain relief, Harry slept the rest of the night and woke up on good form! I very much breathed a sigh of relief.
This week we have tasted normality and we love it, we can chill out a bit and take deep relalxing breaths. Though, having had Harry's bloods tested today, his platelets are borderline needing a transfusion, so before we go away on Sunday, he is having a platelet transfusion. His HB was borderline too, 8.5, he gets a transfusion at 8. His bloods will probably be retested on Sunday. It will probably be a good thing if he did have a red blood (HB) transfusion so he is topped up for our short trip away to Lincolnshire. He should then be on top form. If he his red blood (HB) is dropping then this can make Harry feel tired and cranky. We are sooooo looking forward to a few days away with Susan and Stephen, who have a B and B, that I truly hope Harry is on top form. He still talks about his day at  Silverstone and if we can have a great week, prior to his next hospital admission on Nov 5th, yes Callum's birthday, then good times will see us all through another horrific week.
So, we realise that normality is sweet and had forgotten what routine was like! However, as said, we are also aware that Harry can dip at any point and end up back in hospital. We just pray for a lovely family break away, we really need it.
Just to add though, that we also really value our time with Harry. Having heard that a little boy Jaiden has just died from nueroblastoma cancer, having never escaped hospital after high dose chemotherapy due to complications, we know Harry is doing remarkable well. I met Jaiden's mum a couple of times, the last just after he had commenced high dose chemo and he had, had his stem cell transplant. We were in the room next door to them. Our thoughts and prayers go out to Jaiden's family as this horrific disease causes so much pain, not only to the children who endure the cancer and treatment, but to all those around them who are deeply affected and have to deal with the loss.

No comments:

Post a Comment