Home tomorrow

Well this is the 12th treatment over and done, and 11 more to go. We found out on Tuesday that we are on the 4 month treatment and not the 7 month treatment and believe it or not I was a bit disappointed! Yes Karen, I know you told me so! I could explain why, but as I have now got over it and am quite happy to be on the 4 month treatment then it really doesn't matter.
I have also been told some great news, but the problem is I am not allowed to tell anyone, and for those of you that know me, know it will be very difficult. (ok so I have told one person - and I had to ring them in the UK as everyone here is asleep!) So I will try and keep my excitement contained and when I am allowed to tell you I will.
Ellie has gone off to Nanny Jens for a sleep over tonight and seemed to be very happy so hopefully she has slept well and Nanny will let her stay again one night.
The chemo has been pretty tough this time. Even though Harry has had it before it has been a few weeks and this one is particularly tough. He has been very sleepy and felt really sick. They have given him lots of anti sickness drugs and this has helped, but he still doesn't feel great.
Today the music therapist and the OT took harry and a couple of the other kids outside and did some music therapy with them. They then also wrote on a large piece of paper all the things they hate about being in hospital and having chemo. They put injections, missing friends, treatment, etc and the one I thought most interesting FOOD! Seriously they need to do something about the food here as it is down on the kids list of dislikes along with injections and chemo!! Says it all really. Anyway they then filled up a load of water balloons and threw them at the piece of paper which was great fun for them, and a way to release some tension. So thanks to Beth and the girls for organising this.
So the plan is that now we are (fingers crossed) going home tomorrow and then we will have a couple of weeks at home. Then back for 3 weeks. This means in on a Monday and out hopefully Thursday. Then we have another couple of weeks off, and then we have another 3 weeks, a week off, 3 weeks, a week off and then 2 weeks. Then we are done!! I know that there is always room for delays, if Harry gets sick in between but as I keep telling the doctors we don't have time for temperatures! They were talking today about giving him an injection in his leg, which basically promotes the growth of his white blood cells if he needs it, however as he hasn't had any temperatures at this point then he doesn't need to have it! The doctors were fine with this and also said that we had just saved the hospital $2000. I did said that I would split it with them, but they didn't seem to be up for it.
The other thing is that 2 lovely people have suggested that they do a sky dive for PMH in January and raise some money for the ward. I have to say that the gesture made me cry, as people never seem to amaze me. Unfortunately some people amaze me because they are so stupid, nasty and selfish but you 2 know who you are and after a lot of rubbish going on you have restored my faith in the human race. Thanks so much, I love you both lots. So now I think we need to all get together and make it a big event. Once I have finalised the details I will let you know, but we will need a few people to volunteer and sky dive and then we need everyone to support the event and donate! I am so excited that I can't even sleep and it is months away!
So if you want to get involved and be a jumper or a donater, then let us know. More details will follow shortly.

Holidays are over!!

Harry and Godfather Tom



Ellie and Cousin Tom



Vic and Cousin Tom



Ellie wearing the pants on her head that Nanny Pat sent to mummy!!

The school holidays are over, and we are back in PMH for more chemo. At this point we still don't know if we are on the 4 month chemo or the 7 month chemo, but either way I really don't want to be here right now. I am exhausted, and really feel like someone has run me over with a steam train a few times and could go to bed and sleep for a week.
We had some sad news last week, as Grandad Geoff passed away. Kong Kong has flown back to be with his Mum and attend the funeral which will be on October 18th. Geoff was our step grandad, but he has been a big part of our lives and will be missed. Nanny Pat is talking of visiting later this year, which will be great and as long as she doesn't get that hearing sorted she will probably think life is rosy with everyone and won't hear all the shouting.
Harry is completely fed up of being in the wheel chair but hopefully we will be able to get the cast off in 2 weeks and he will be able to do some walking.
His blood counts have just come back and his levels are all good and chemo will go ahead today, as I knew it would.
It has been nice to have Tom here, and hopefully over the next week he will be able to keep the house tidy whilst we are in hospital.
Any visitors appreciated and will see you all soon. xx

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

Not the result we were looking for

Dr Angela from Ward 3B rang me with Harrys pathology results today, and although the tumour has responded to the chemo the result was not what we had hoped for. A good response means that we needed a 90% necrosis (death of the cancer) but we only got 60%. This means that in terms of what happens next we will continue on the study but not the good response arm but the poor response arm.
What can I say............well right now there is nothing as no-one is listening.

Home after the surgery

We made it. Ellie had her assembly today and we were aiming to be home for this and were allowed to go home on Wednesday, so we made it. So we are now drain free, and painkiller free and Harry is slowly getting used to the wheelchair. He did ask yesterday if we had any extra paint so we can touch the walls up after he is out of the chair!

Ellie had her assembly today and we were very proud of her. She did a great job and was very clear when she spoke. Both pre-primary classes did a great job.

We headed off to Garden City this morning and it was good to be out. With Harry in the wheel chair and the leg in a plaster and arm in a sling, you can imagine we had some funny looks. You would think that with the bald head, people would think before speaking. We went and had some lunch and one of the cleaners asked Harry what he had done? He didn't say much and just carried on. Whilst we were eating he mentioned about the lady asking and I said that if people ask you what is wrong and you don't want to talk about it, say 'I have cancer' and they will shut up.

Then we head off and Harry wants an ice-cream. Another lady asks what Harry has done? I said he had cancer, but this didn't stop her. She said she was sorry, then asked what type of cancer, if he was having treatment and where. So at this stage Harry is just smiling at me. The lady then says 'Cancer....... a disease that kills!' Well at this point I just had to say 'have a nice day and walk off! Harry turns to me and said 'Mum I thought you said if you told people I had cancer they would shut up' and he starts to laugh. Well Harry some people are even more stupid than I thought. If nothing else I have to thank the lady as it gave us a big laugh.

Paula, Tyler and Braden came over and Jo and Matt and Tim, also popped over after school which was nice.

Then my hairdresser, Gio, popped over with Matilda. We had just been talking about how small Perth is, when it turns out that Gio knows the wife of the nurse, Ben, who looked after us in ICU (she cuts her hair). Harry doesn't remember him as he was asleep for most of his shift, but he was the one who woke him up. I still can't believe it.

Last day of term tomorrow and then we have two weeks of school holidays. Have a great holiday.

Take care, and be good. xx

Day 11 after surgery

Chloe, Fletcher, Denyse and Harry

Chloe, Fletcher and Harry


How bored is Harry making mountains out of the wee bottles!

Stocking up for the night!
6pm on Tuesday afternoon and we are waiting for Dr Savundra to turn up and say we can go home tomorrow. The nurses are all convinced that it is time we went as Harry zooms up the corridor and is trying to knee cap everyone.
We had a long day yesterday as Harry is getting fed up of being in here and is sick of people telling him what to do. We had a chat with Rebecca on Skype and saw Sofya who is gorgeous - just like her Mum. Also got an 'e' mail off cousin Tom and he is thinking about coming to Perth on October 1st which means he will be here for his birthday.
Cousin Billy has also been in with Salty the dog. Think he is just trying to find a single Nurse and I have seen one who seems quite keen.... so watch this space.
Had a good night last night and Harry is no longer taking any painkillers. The nurse was trying to wake him up last night to give him his pandadol, and for those who have tried to wake Harry up whilst asleep, we know this is no easy task, and this morning I heard her telling the morning staff that maybe we should stop the tablets during the night. They then asked him if he wanted to keep taking the painkillers or if he wanted to have them when needed and he said he would have them when needed. So far he hasn't had any today.
Caught up with Donna off 3B and had a coffee. Then Gillian bought me in a coffee from outside which was lovely. We then saw Billy and Salty, had a bit of a walk round the hospital. Antibiotics every now and then a broviac dressing change and then we had more visitors. Denyse, Fletcher and Chloe came in which really brightened Harry up. We took them down to 3B to show them where we normally live and also saw Ann and David whilst down there.
I also saw one of the oncologists whilst I was down there and we are going to catch up with her once they have the pathology results back. I thought that we had another 7 months of chemo after this surgery as a minimum but today i am feeling over the moon as we could be finished by the end of February. I know that is another 5 months of chemo but I am so excited I could do a dance of joy. We need 95% and more of the cancer in the tumour to have been killed by the chemo which we did before surgery and if this is the case we would be classed as a good responder. If not we would be classed as a bad responder. Depending on whether Harry has responded well or not we will get randomised onto one of 2 options. Both have the option of being finished by the end of February. The good also has a Peg or pleg thingy which is something that you do weekly and goes on for 2 years - I think, and the bad has chemo which is similar to what we had before with an added chemo and goes for nearly 40 weeks. Having said all that we could pull out of the study, but for now we just have to keep the positive thoughts coming and pray that we get a good response to the chemo that has already been done.
Well still waiting for the plastics man and he is 25 minutes late!! Hope he is turning up or he might miss us as we will be gone tomorrow.
Harry is now in the hall and asking the plastics registrar when the surgeon is turning up as we have places to be tomorrow. Gotto love that boy!

Day 9 after surgery

Ended up getting home for another night of sleep which was great, and then spent the morning cleaning the fish tank and a bit of pottering around. Harry doesn't like it when I go, but I think it is more the fact that I am the one person who is here quite constantly and when I go it reminds him even more that he can't go home.
Yesterday was quite quiet. Nanny Jen came in for the afternoon and then in the afternoon Darren, Shirley and Ellie came in with dinner. Ms Jardine also came to visit Harry which was lovely. We have been playing this game called free rice, which asks you educational questions and a company donates rice to a third world country when you answer questions right. So between us we have learnt a bit about the capital cities.
I have to say I am really looking forward to going home now. It is nice to sleep in your own bed after this stinky armchair, and drink tea and coffee out of a mug instead of paper cups. Hopefully we will only have a few more nights here before we get home for a couple of weeks.
Cousin Billy came in and bought his puppy in. No the dog didn't come in the hospital, he left her in the car and they took harry downstairs in the wheelchair.
Harry is lying next to me and he looks very peaceful, well he did until he started saying 'no no no take it, close it'. We had a wonder down to 3B today but didn't see anyone we knew, which is a good thing for everyone who is at home. Harry is still doing very well. Sleeping better, and on less and less painkillers.
I have to say that I keep looking at all things that people are doing which we take for granted and wondering if Harry will be able to do them. As today was so warm there were people riding bikes everywhere and I keep wondering if he will be able to do that. If people swimming comes on the television, I have to turn if off as I start crying without even realising it. I know he will be able to swim but not like before. The emotions that go on are incredible and as a wise friend said the other day 'did no-one tell you there would be days like this!' I feel stronger when I am with Harry but maybe that is because I can let my emotions out more when he is not around, as he doesn't want to see us crying.
Cancer seems to be everywhere and I just wish someone would hurry up and find a cure for this dreaded disease. I am just watching a programme on channel 10 where the mum has been diagnosed with a brain tumour and has only got a short time to live. Ironically the mum is being played by a girl I went to school with in the UK, Lucy Davis.
Still waiting for pathology and tomorrow we should meet up with the oncologist who will tell us what the next stage of this treatment has in store for us. If we go ahead as we have been and stay on the 11th October, then it means we will be home for christmas and the new year all being well. If we end up doing the short version of treatment then we will be finished by the end of May, which at this point in time, seems like a life time away.
Hope to see you all soon, and if you are around in the school holidays then any visitors or distractions would be welcome.
Until tomorrow....
There is a red kite fundraiser on October 21st to see Eat Pray Love, so if anyone is interested please let me know, as we will have to book tickets shortly. $30 per head.