Nearly a week of the school holidays has gone!

It has been a few days since I have been able to get online and update the blog as I really needed to get my head round the fact that the results weren't as good as we were hoping.
Since this journey started we have always been under the impression that the chemo after the surgery was at best 7 months and at worst 10 months, so as you may have read the other day when I realised it was actually best case 4 months and worst case 7 months I was over the moon. Then we got the results and realised that the treatment for 4 months is only a 50% chance - or 1 in 2 which sounds better, and there is still a chance of 7 months of chemo, which was a bit disheartening. It is not really the length of chemo at this stage but just the fact that the tumour wasn't completely dead that threw us.
The whole tumour has been removed with good margins and hopefully Harry is currently cancer free, but the next chemo is to prevent anything occuring in the future.
We have discussed the options with Dr Angela, who is our temporary oncologist whilst Dr Maryanne is overseas, and we can either stay on the study or come off it. If we stay on the study then basically the computer will decide what the next few months have in store for us, and if we decided to come off the study then the oncologists would put us on the 4 months treatment plan. My honest feeling is that i don't want to be the one to pick. If something happened in the future and we have made the choice then will we be able to deal with that feeling of 'what if?' If we stay on the study and something happens, then at least we can go and smash the computer to bits, which although it won't acheive anything will make us feel better for a few minutes.
I had a chat with Harry on the way in to PMH to get his stitches removed and explained about the options and whether he felt he wanted to stay on the study or not. I also explained that if he stayed on the study and got the long arm, there are different chemo's included. At this point we don't know if these treatments will help but if the study is not done then we will never know if this a better way to treat the kids or not. We have also worked out that if we do the 4 month chemo there are 12 treatments and if we end up on the longer 7 month treatment there are only an additional 3 chemos, making a total of 15. Harry has decided that he wants to stay on the study. His reason being that it might not help him but could help someone in the future. How does a 9 year old become so grown up???? Whilst we were in the hospital he said that he wanted to tell the oncologist his decision. I did say we should all discuss it as a family and he said 'Why?, I am having the chemo and I am the one with cancer, this is my decision!' So he told Dr Angela and Dr Michaela was there as well, and she said 'it is a shame we can't clone you Harry!' His strength and determination is certainly what is going to get him through.
So we have another week at home and then chemo starts on October 11th. This is the same chemo for both arms and hopefully it will be in the not too distant future that we know what the rest of the chemo has in store for us.
I have already lost one of my earlier bets that Harry would have a green cast as he has a glow in the dark one, although it is a sort of green. I am now betting that we will end up on the longer treatment and if I lose this bet, I can't say I will be too sorry.
Harry has also decided that if possible and we end up on the long treatment then he might look to change his broviac to a port which will enable him to swim, but will also mean another operation. I suppose we should wait and see what is happening before we think about this. A wise woman told me the other day I was getting ahead of myself, when I was planning that we had 4 months of treatment and I said 'no I am not', well gorgeous Karen you were right!! So I hope you drank lots of wine whilst in Bali and pretended some was for me!!
On the way into the hospital when we were discussing the short and the long arm of the study. Ellie turned to us, and said 'you didn't tell me harry was getting a new arm, when is he having that?' Luckily harry can laugh about it, and we did all have a bit of a giggle.
Harry has also now borrowed a go faster wheelchair from a friend and is loving whizzing round the house, so thanks for that Eileen and Craig.
Nanny Shirley has now left and Cousin Tom arrived tonight. The kids were very excited to see him and it will be nice to have the week with him before we go into hospital. Harry is now he proud owner of a japanese world war II sword which Tom found in Mongolia.
Anyway goodnight to all, and will keep you posted when we now what is happening.
Happy Birthday to Donna Loudon - one of the lovely mum's who we have met on this journey! Hope you had a great day and a good night.
Love to all, Vic xx