Sunday, 11 December 2011


On a computer at last! Harry's stay in hospital was not as bad as I thought it would be. Apart from his NG tube needing to be refitted, as thought on Wed it had come out quite a long way and after a falllout with Callum and a bit of carfuffle on Thurs, his tube came out another couple of inches to the extent he was gagging and then vomiting, so I pulled it out and it was actually hardlly in. As we were at the hospital anyway Thurs they refitted it then. However, although spending time discussing with Harry that he needed it to be refitted, he covered his face and the whole thing was a struggle involving having to restrain Harry. The first 2 attempts had to be aborted as the tube kept coming out of his mouth and not down his throat. He would not swallow his drink whilst the tube was being fitted, which makes the job much more smooth. The third attempt, with 3 staff members and me and 30 mins later, was successful. All that was missing was a stiff G and T for me after, though I think I needed a bottle at least! I think the nurses felt they had more than earned their wage after that effort!
He had the chemo commenced upstairs on ward 79 the day clinic, so as to finish earlier on Sat, so he could go home.
Once on ward 76 where we were before for 2 1/2 weeks, everything was more familiar and there were staff working, that we knew and the fact we were back in hospital was not so bad. Harry complied with having his temperature taken and blood pressure and was able to joke with the staff, which was really nice to see and good for them to see as they remember him being so poorly on arrival in November and he could not move himself up the bed by himself and was moaning and groaning at every move. Now he can run a short distance and has been dancing to Christmas music. He puts CDs on his new DVD player. He so loves that machine!!!
We also bumped into a couple of familiar parents, so we were able to say hello and follow the path their children are taking. The thing about being on the cancer ward, is that whatever race or background you are from, you all have one thing in common and that is that you have a sick child that needs a lot of support and the journey although unique to each child and family does have similarities and you can understand the stresses and strains that present you.
Harry now has a wheelchair from the RedCross, which will help when he tires easily. This will be great for walking any distance and means we can get out more, weather permitting!
So Harry has had his third lot of chemo and has just passed day 20 of his 80 day plan. He goes back into hospital on the 18th Dec so all being well if infection free he can be at home for the week. Yay!
He has his bone marrow retest for half way scheduled for 23rd Dec and will have other scans booked in just after Christmas, so we can see if the chemo is doing what it should be. Harry has certanly got a better quality of life at the moment than what he did have, so that is great. Today - Sunday, we thought Harry would have been poorly as he was, after his 2nd lot of chemo, but he has been in good spirits and not been sick, though he does have different drugs for home this time, so not sure if that has made a difference.
We went to the Victorian Fair this afternoon. It was good to get out as a family and saw some familiar faces.
So today has been a good day. The nurse came at 4.30pm to do Hary's injection, but at least all the previous paperwork is completed so only a short visit. Last week was a bit like when you bring a new born baby home and you can't do anything for profesionals visiting. Plus, Harry was really unwell. We will see how Harry fares this week. Fingers crossed he does good.
Hopefully we can get a bit of routine going and get to grips with our lives as they are at the moment. Certainly today I feel like the fog of previous weeks is lifting and there is some sunshine coming through! Although I know if Harry gets and infection and other people in our family become poorly, the path ahead could become rocky. However, we are thus far and so I'm sure we can deal with anything!

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