Second week at home - October 27th!

As you can see the chemo and operation haven't stopped Harry enjoying himself, and I am
really pleased he didn't fall off. We wrapped the cast in a bin liner and it didn't get wet at all. He held on to Mals life jacket with the good arm, well apart from when he was waving to us, but I have to say it was worth it to see the smile on his face.

This is our second week at home and so far so good. We had bloods done today and his platelets and white blood cells are fine, but he is neutropenic at the moment, so let's hope we get through the next few days with no issues and then next week we are back into hospital for chemo. We raced in to the hospital this morning and back out as quick as we could as Harry wanted to go to school. Then this evening when I was trying to wash him and Ellie was in the bath I realised that they didn't hep-flush his line so could mean we still have to go back before Tuesday. If so, will go after school tomorrow as Harry will not be happy if he has to miss school.

Ellie is well and has recovered from all the excitement of her birthday, and now this weekend is her dance concert. She is very excited about it, and the little dance outfits are very cute.

I have spent the last 10 days trying to catch up on things at home from being in the hospital and also from not having much 'child' free time as we had the school holidays when we were home after the operation. It takes a couple of days to feel normal after coming home from the hospital, so have no idea how Harry feels with the chemo he has to deal with. I just have to cope with hospital food and lots of weeing through the night.

We are still waiting to hear if Harry can change his broviac to a port. I saw our oncologist today and she said the surgeon is thinking about it. Hopefully she will hurry up and say 'yes' as the weather is getting warmer and I am sure this will only make Harry grumpier if he can't swim.

I have just been watching videos of people sky diving in York and in a way wish we were doing it tomorrow, then I wouldn't have any time to think about it. It actually looks like great fun, so let's hope I am still thinking that when the time comes.
Thanks to everyone who has donated to the fundraising page. It is great to be doing something to help the ward after all they have done for Harry. We have all different people jumping and today I was chatting to the lady who did harrys finger prick test. I mentioned the sky dive and she started asking a couple of questions. I then asked if she fancied it, and she said 'well I was going to do it for my 58th birthday last year but decided to wait for my 60th, but this is a good reason to jump, so why not!' So of course with registration form in my bag, I handed her one and hopefully that will be another one to add to the jump. The young girl in the post office was also saying the other day that she would love to jump, but didn't know where she would find the money. Then yesterday I saw her and she said if she can't find the money her Dad has said he will pay for her, so could be another one!! It should be a good weekend, so if you are hanging around the weekend of January 8th, pack up your camping gear and come to York and watch a group of mad people jump out of a plane for the children of WA who are living with cancer.

http://www.everydayhero.com.au/i_am_jumping_for_ward_3b

If you see me or anyone that is jumping regularly then you can just give us the cash and we will give you a receipt for tax purposes. If not, then go to the link above, hit donate now and you can make a donation on your credit card within about 3 minutes!!

Well I had better go and get some sleep, as I am doing a phoenix card open house tomorrow and the house is in complete disarray!!

Night to everyone. Take care, and have a great weekend. xx

Check this out if you are considering jumping! http://www.youtube.com/watch?v=0O8NiNj15Mk&feature=related

Ellies 6th Birthday

Today my little girl turned 6 and at 5.50 this morning I was woken by Harry who was asking if we could wake Ellie up. Unfortunately as she was lying next to me I wasn't able to keep her asleep so we had a very early start. Anyway she was very pleased with her presents and enjoyed her day.
We started off with school assembly as Harry was getting his school certificate and also got an award for doing the maths test last term. He did so well, as he got a credit and also got the 'prudence award' for the number of answers right consecutively. He did the test whilst in hospital and after 48 hours of chemo. He was with the school teacher and he came out pretty quickly and said 'I can't do anymore I don't feel well!'. Being the caring and nuturing mother that I am, I replied with 'are you sure?, you have only done half the test! Oh well at least you will get a certificate of participation!' So I had to laugh today when I saw the results and that he had got 15 answers right out of 30. They were the first 15 and the only ones he answered, so not only does he look like me, but he must have my brains as well!! I then popped to his class where he took the xrays of his arm and leg and explained what had happened to him for his news. The class were all lovely and listened really well and asked lots of questions, and it is just so nice to see him back there and mixing with his friends. He has been at school all week, but tomorrow we have a couple of hospital appointments so he might not get much time there. He was very sick tonight for the first time since he has had this chemo, but other than that he is doing ok and went to bed early so fingers crossed he will be good in the morning.
I then went to preprimary with Ellie and we had morning tea and some cupcakes. Ellie had some lovely presents. Godmother Jane (Harriet and Peter) popped over with a few goodies wrapped up which Ellie loved. Lorraine, Steve and Elliott, bought her some lovely earrings, and Nic, De, Deb, and Abs bought her a lovely night lamp and some books which she adores. Ella Harwood made Ellie a lovely card and bought her a birthday fairy, so thanks ella. Nanny Jen and Kong Kong bought her the new ipod touch with a camera, so have been loading it with apps and music this evening so she is ready to roll tomorrow.
I am feeling very gutted as the love of my life - my canon camera - is not working properly. I just don't know how I am going to get through the weekend without it. Of all the times it is Ellies birthday, so better get on to it and get it fixed. Wonder if it got dropped after the big session on Saturday, but then that is a question I doubt anyone would know the answer to, as who would remember!!??
It is so nice to be at home and just feel like life is slightly normal - well as normal as it can be in these circumstances. We hopefully have another week at home and then only 15 weeks till chemo will be finished as long as we have no delays - which we won't! I am slowly realising the things that are important in life and people never cease to amaze me. Being thrown into this situation, of which you have to just get have to get on with it, makes you see things from a very different point of view. I am still the same person I was on June 13th, 2010 when I was happily living in my world of denial and thinking that Harry would be in hospital for a night or two at most. No I don't walk round in tears, and yes I am still organising things but if I just curled up in a heap then what good would I be to my boy. He has enough to deal with and to try and make sense of right now, without having to worry about me as well. Although having said this I will spend the next 11 out of 16 weeks in hospital with Harry, so despite trying to live as normal a life as possible, life is far from normal.
And far from normal is exactly why we are going to jump out of a plane on January
8th in support of Ward 3b - the oncology ward at PMH. I can't believe that we will have about 20 people (maybe more) to jump out of the plane and raise money. Nanny Pat is also hoping to be out here and watch us all jump, but unfortunately said that she probably won't jump this time!! To all the special people who are going to jump, we thank you for your support and to all the special people who are going to be there with the champagne at the bottom we thank you too!! The website is up and running for donations, so if you want to donate feel free it can be done online and won't take long.

http://www.everydayhero.com.au/i_am_jumping_for_ward_3b

I have to share a secret with you... I don't know how the hell I am going to do this and have to keep telling myself that if Harry can go through 8 months of chemo and 18 hours of surgery I CAN jump. When the first donation came through - and thank you Jenni, Jo and Sandi, I was nearly sick as this is real and there is no turning back and I CAN and I WILL JUMP!! Why sell chocolates when you can jump out of a perfectly good plane!

To all the good guys - I love ya - to everyone else 'Go Jump' and not from my plane!!

The Jump Is On

To all the family in the UK, I hope that everything went well today. We were thinking of you all and of course Geoff, and are grateful for the fact that he was a huge part of our lives. He will be missed but not forgotten. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

So its game on, and we are going to jump from 14,000 feet on January 8th 2011, to raise money for Ward 3B.



I have set up a fundraising page on everyday hero, where people anywhere in the world can go online and donate, so make it worth our while to jump.

See you on the way down. xx

Another big weekend!

One of many reasons not to drink again!

We got home on Friday afternoon as planned and spent our last few hours with Cousin Tom. He is actually leaving Saturday morning at 6 am and not 10.30 pm as we thought. We went down to Point Walter in the afternoon and had a few beers / ruskis and some hot chips and chilled with the usual gang which was great.
So Tom went and stayed with John and Marj as Uncle John has also gone back to the UK for Geoffs funeral on Monday, and as they were going to have to get up at 3 am, it saved him having to wake us all up. It has been lovely having him here and I will miss him when he is gone.
Saturday morning we got up and got ready for the Bosom Buddies lunch 2010. I was picked up at 11.30 and I was going to be sensible and not drink too much!! OK, well I tried. I was ok at the lunch and then we left and went to Raffles and it all went out the window. A huge load of vodka and red bulls later and I think I got in about 11.30pm. So 12 hours of drinking! No wonder I feel like death today. Anyway I have had a couple of weeks with a few too many drinks and I am going to put it down to the stress of my life at the moment, and will try not to drink that much again until my birthday. Wow that will be an acheivement as my birthday is a whole 3 weeks away!! Anyway the lunch was a great success, I managed to buy a painting that I have no idea where I will put but really liked and I caught up with a whole lot of people I haven't seen for ages. Denise Salleo, Sonya Ryan as well as a lot of Mum's who I just haven't had time to see over the last few months. Well done to Heidi, Gillian, Tanya and Jo, you guys did an awesome job.
I have recruited a few more people to jump on the 8th January, so if it wasn't the booze talking then we are up to over 20 jumpers!! I will speak to the company over the next few days and will let those interested know more definite details.
Harry is doing well after this round of chemo. He is feeling really tired but has managed not to be sick which is great. As you all know Harry - him going to bed and sleeping for 13hours, you just know he isn't himself. We just have to remember that every day is a step closer to the finish of our chemo.
Have a great week and let's hope we stay at home. It is Ellies 6th Birthday on Thursday and her party on Saturday, so we need to be here for that.
Hope everything goes well tomorrow, we will be thinking of you all in the UK. Geoff, you will be missed but not forgotten. Love you xx

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