Happy New year to all my friends and family

As the end of 2010 draws to an end, I know there are many families who are out there that are hoping that 2011 is going to be a bigger and better year for them, filled with lots of love and happiness, and I would like to wish you all the best for the coming year.
It is hard to believe that this time last year we were waiting for people to come round and celebrate the new year without a care in the world and this year, we are just hoping that Harrys temperature doesn’t go up and we end up at PMH with the worry of an infection.
The year has been a very big learning curve for all of us. I thought breaking my jaw was bad, but then having your 9 year old son diagnosed with Osteosarcoma, months of chemo and an operation to remove his shoulder joint was something that I had never thought would happen. I remember saying to dad ‘ I just want someone to say “Sorry this isn’t your life we got the tapes mixed up” but no such luck.
Harry has been a tremendously brave boy and has grown a lot as a person in the last 6 months as a result of what has happened. He wants to never talk about the treatment when it is all over, but I am sure that there will be more emotional roller coaster rides in the future, but he will deal with it and continue to grow.
I have been meaning to write this for ages, but always forget. When we were first told about Harry we were given a book about childhood cancer. I was reading it the one day and came across a chapter on what to say and what not to say, and thought it was quite appropriate.
What to say when a friends child has been diagnosed with cancer :
I am so sorry.
I didn’t call you earlier because I didn’t know what to say.
Things that really don’t help :
God only gives people what they can handle. – I remember thinking at first it was because Harry is strong, but after a while you do begin to doubt who is up there watching over us as why do so many children have to go through this.
You are so brave or so strong – well we are not, you just have to get on with it and cope the best you can.
I know how you feel – well unless you have a child with cancer, then I doubt it.
Also don’t say ‘let us know if there is anything we can do to help.’ It is far better to make a suggestion. Trying to organise the change in your life is hard enough, without then having to go to people and ask for favours.
The one thing I have hated is friends that have ignored me. I do understand that you don’t always know what to say and before I was in this position I would have fallen into that category, but you feel alienated enough without people crossing the street or just not talking.

Anyway a week today and we will be in York and getting for the sky dive. So if it is not the last thing you do in 2010, then make it the first thing you do in 2011 and donate to the sky dive. 30 people jumping out of a plane from 14,000 ft and paying $429 each to raise money for the children in Perth who are living with cancer. So please make it worth our while and donate, every little helps and a lot is always a great gesture as well.
Heres to a better 2011. My new years resolutions are :
1. To make it through the sky dive.
2. To be a better judge of character. I want to be the one who says I never trusted him/her/them rather than the one who says ‘I thought they were ok’ when they turn out to be complete moles.
3. To lose all the weight I have put on whilst sitting around PMH waiting for a better meal to come along but eating them all just incase.

They so say people come into your life for a reason, a season or a lifetime. Well to those who are in this for the long haul, I love you, and for those of you who have turned out to be seasons, thank god that the season has changed!!

To all my family and friends who have supported me throughout the last 6 or so months, I love you all and am very grateful for everything you have done.

Christmas has been and gone!

The family with Dad

The family with Darren

Wow, what a great present!

Ben, Harry, James and Ellie


The gingebread house.

Home late on Wednesday night and then running around on Thursday getting the last minute bits and pieces done. Dragged Aunty Sue to about 4 shops and I should have just bought what I was looking for in the first shop. Friday we spent the day tidying as we had a few friends round for Christmas drinks and finally got to bed at 1.30 in the morning.

Christmas morning, Harry first came in at 5.30 and I said back to bed, which he did but I thought at this point it was 6.30. So when ellie woke shortly after I then realised it was only 6.30 at this point. We didn't make the beach this time, but went to the civic centre and met up with all the family and had a lovely breakfast. Harry and Ellie opened a few presents in the morning and then opened the main ones when we got back from breakfast. We had a short swim stop in the middle, and then finished off opening the presents.

Nanny Jen, Kong Kong, Nanny Pat and Sarah popped over about 5 and then the kids had more presents to open. Harry finally got his surprise present and was over the moon, as you can see from the pics. Ellie also got baby alive which she was really chuffed with.

Boxing day was spent having a quiet drink, and a case of ruskis later (and the rest) we got to bed about 3am. Kids had another late night and a swim at 11pm, and am sure we will pay for it tomorrow!

Hope you all had a lovely christmas!

Home for Christmas - fingers crossed!

Well we made it home and will hopefully stay here till 4th January. We had an empty ward up until yesterday and then today Room 7 ended up full, and unfortunately with people who weren't scheduled to be in there.

This chemo did not include cisplatin and Harry has done really well, and hardly been sick. We only have this round one more time and think we could probably have less sickness drugs than normal.

The ward was pretty busy and there were a few stressed nurses and pharmacists around, but then hopefully they will all get a break over the christmas period and be able to recharge their batteries.

Anyway pleased to be home, but thinking of all our friends who might be at the resort for Christmas. Hope you get home and if not then really it is only a day and santa can come a few days later!!

Merry Christmas and Happy New Year to you all!

Half way through Round 13!

Happy Birthday to Darren for today.

Half way through chemo, and Harry is doing well. The family finally arrived from the UK after a few delays due to the snow, but they are lucky to be here as so many people seem to be stranded. The weather in Perth has picked up a bit as well and we are looking at a 38 degree day for Christmas, which is what Perth is all about!

Harry has a mouth full of ulcers at the moment, but is still managing to eat and drink, and is not taking any pain killers which is hopefully a good sign. He is doing his mouth care three / four times a day to keep the ulcers clean and hopefully this will prevent them spreading any further.

The water bottles have been delivered for the sky dive, and we have been selling them whilst in the ward. The bottle openers are also going well and just to make it the three, I have ordered t-shirts for the dive. They will hopefully be ready on Thursday and we will be able to start wearing them and advertising the dive.

Donations are coming in thick and fast at the moment, which is great. We have been sponsored by Sandrinos Cafe and Pizzeria, Cold Rock Ice Creamery, and Green Canteen.
Also supporting the sky dive are the WAGS, and they have made significant contributions to our fundraising efforts.

I just hope that the snow doesn't prevent Laura, Katie, or Thomas getting out here and making the jump!!

Well hopefully we will go home after this chemo and we won't have to return until the New Year. If all is ok then Harry will start chemo again on the 4th, just in time to get out and go to York for the jump. I did ask dr Maryanne what would happen if his blood counts weren't good on the 4th, and she suggested we would have to come back on the Friday. Sorry, that ain't happening, we have a dive to do and Harry wants to be there, so come hell or high water we will make it happen!

The children have been getting lots of presents over the last few weeks, and Harry has been given a very special present from a very generous man. Harry has been desperately trying to guess what it is, but he is going to keep it until christmas day, and I am sure he will be blown away when he sees it.

Anyway must go and get some sleep as it is already past my bedtime, and won't be long before the reception staff are here and laughing loudly outside the room!

I hope you all have a great christmas and a Happy New Year.

Ciao for now, Vic x

6 Chemos left.... yes only 6!

Last day of term and only 6 chemo's to go. We went into hospital a bit late on Monday but again still started chemo at 6pm. No sickness this time, which was great and a good week was had.
Back in Room 7, but I managed to score a bed for 2 nights which was great. Nicola was in and so was Lochie which was nice. Camp quality came to visit on Tuesday, and bought the kids lots of presents, then we went up to megazone and met the Eagles. Not huge footie fans, but the team were all really nice and Harry is now on the Eagles website.
Tuesday evening our favourite lollipops came in accompanied by the friendly firemen. They sat and played our new game of 'snorta' which was great fun and Harry recognised one of the guys from the firemen calendar! Mr February was there. The nurses were finding all sorts of reasons to come into the room. The kids certainly wouldn't have needed to press their buzzers that night.
Wednesday morning they had another party on the ward and Santa came in and visited everyone which was great. They also had a great face painter in there, and Donna and I managed to get a face paint as well.
Ellie popped in to see us on Wednesday. Donna W went to get Hungry Jacks for all the kids, which was great to see, lots of eating and all feeling well.
Thursday morning we had blood levels done at 8. Echo at 10, santa visiting pre-primary at 11.30 and harry had to be at the movies by 12.30 to see Narnia. So a busy day by all accounts, and guess what the blood machine has broken. Ward rounds are done, and still no results. Echo done and no results. Car packed.... no results. 11am bloods are finally received somewhere and results are done in 20 minutes. Then we have to unhook Harry, and so we have missed Santa. I think this is what they call 'sods law'. Every other week we have results by ward round and are ready to go by 10!
I dropped Harry at the movies and then got to pre-primary. Missed the party and santa, but Ellie was in good spirits and was happy enough to stay at school with her friends till the end of the day.
Went to Point Walter in the afternoon and with it being the end of term, there were lots of people there. Great to see everyone and managed to sell a few more keyrings.
We now have 3 days at home and then we are back in for one more chemo before Christmas.

Better get some sleep for now. Chat soon.

Happy Birthday Harry

After being in hospital for those extra couple of days last week plus all our additional visits for x-rays and physio, the weekend flew by and we are back in for our 3 week stint!

Nanny Pat has arrived and it has been lovely to see her. On Monday we went to Mandurah and went on the canal cruise and saw the lights on the houses. The kids enjoyed it and we met others from PMH which was nice. It was a late night, considering it was a school night but the kids fell asleep in the car on the way home and went straight to bed when we got in.
Tuesday was an early start as Harry had PEAC in the morning and then we were back to PMH for chemo. We are normally here for 9 and chemo starts about 7pm after hydration, however today we arrived at 12 and chemo started at 6, so won't rush in future!
Harry wasn't too happy about being in hospital, but was looking forward to seeing his class the next morning. So the dreaded chemo started and only half an hour in and Harry was sick. I couldn't work out what was wrong but have never seen his pump with only one bag on it and mentioned this a couple of times to the nurses but was told that it was right. He went to sleep quite early and slept ok but woke up and was sick again.
He was that unwell that he didn't even want to open a present or card. I still thought that something was wrong and by now it is nearly 9am and by the looks of things there is no way Harry is going to be up to seeing his class. I then spoke to one of the nurses and they looked back over what Harry normally had and there was a sickness drug missing. So they attached it and gave him the drug and he slept for an hour and woke up like a different child, and just in time for the class to arrive.
The visit went really well. The kids briefly walked through the main entrance of the hospital, then the garden outside the ward and then the ward and then we went up to Megazone where they went to the Telethon Theatre. Here they met a physio, the Occupational therapist and Harrys hospital school teacher. Harry had done a slideshow with photos, which he presented and then after everyone had spoken they did a quiz to check who had been listening.
They had their lunch, birthday cake and then went for a bit of a play in megazone before returning to school. I would like to thank :
Firstly, Nanny and Kong Kong for paying for the kids to come up on the excursion.
Secondly, the staff of PMH who were involved in showing the kids a bit about what goes on in a hospital but in a fun and informative way.
Thirdly, Megazone for closing the area off for the kids so they could have a play.
Fourthly, the children of Harrys class who were here. They were a credit to Attadale Primary School and were well mannered and very well behaved.

Harrys friend from the ward Nicola also came in and met his friends which was nice and made him some cakes for hir birthday.

In the afternoon we chilled out a bit and played with a couple of Harrys presents. Harry then had the nurses sing him a Happy Birthday and they gave him a couple of presents which was very sweet.

All in all Harry had an ok day, considering he was in hospital and having chemo. Thanks for all his birthday wishes.

Another birthday done, just Darrens to go and then Christmas and then we can sit back and relax!

Happy Birthday!

Happy Birthday Harry! Have a great day even though you are in the hospital.
Love ya lots, and remember this can only make you stronger!
Mum, Dad, Ellie, Nanny Pat, Kong Kong, Nanny Jen, Aunty Sarah, Aunty John and Uncle Marj xx

We are out!!

We made it out and well under the 48 hours. Harry's temp hit 38.4 on the night we were admitted and they started antibiotics, but after that it stayed well under the 38. We were given the all clear to go on Friday at lunch time, as long as we were ok with the fact that if anything came back from his cultures at 48 hours we would have to return.

Harry was looking too well, so was pretty sure that we would be fine and as we haven't heard from the hospital I am presuming that everything is ok.

They did a blood test on Friday and it was showing all blood levels were particularly low. I was a bit concerned as his platelets hadn't changed in 2 days and we only have 4 more till chemo starts again, and at this point the platelets were too low to start. As Harry was looking relatively well - all things considered - the nurses decided to re-do his bloods. Good job they did, as platelets have risen nicely as well as his neutrofills, so we could actually start his chemo today if we had to. It seems the blood machine might need recalibrating!

Harrys class are due to come up to the hospital next Wednesday. Dad has hired a bus and they are coming up for a few hours. They will be having a look round the ward, and then going up to Megazone and having a play, their lunch and then returning to school. They used to do 'learning journeys' at the hospital but had to stop it due to the costs involved.
It will be nice for Harry as it is his birthday and he must be pretty upset about having to have chemo on his birthday, but at least seeing the class should be good. I hope the kids get something out of the trip, and a big thanks to all the parents who are letting their kids go.

Christmas decorations are up! The tree is outside this year and it makes far more space in the house. Just hope it doesn't blow over and end up in the pool!

Nanny Pat and Aunty Phil hopefully arrives tomorrow night and I am can't wait to see her. Let's just hope the snow doesn't stop them leaving.

Monday will be Harrys last day of school for the term and then Monday night we are going to see the lights on the canal in Mandurah with camp quality. Kids are very excited so hope it is good.

Off to bed now as better get some sleep before our next stint at the resort.

Ciao for now.

First temperature and we are back in!!

Playing DS together when they are meant to be at school





Bottle opener keyrings for sale $5 each



Harry and Nicola

Well we made it this far but the good run has come to an end and we have been re-admitted for a temperature. We did our best but just couldn't beat it. Harry was a bit upset as we are in next week for 3 weeks of chemo (with weekends home hopefully!) but if you could see him now. We are in room 7, and there is Lochie and Nicola, plus another little boy who is very quiet compared to these three!!

So Harry is on antibiotics for 2 days until his blood cultures come back and if his temp doesn't go over 38 then we should be ok to go!! Fingers crossed we can get home for the weekend.

Harry is doing his best to sell the bottle openers to everyone who walks on the ward and is doing a great job so far.

I think I am now going to be in trouble, as the school teacher is trying to get them into school and I am sitting here on my laptop, and Harry and Nicola are playing Mario Kart against each other. Oh well she has given up and gone back to school now and left the kids here.

Touch and go for a bit!

Love a santa photo!


Fun in the pool!

What can I say, but have had a few hair raising moments over the past week. Harry has been in the pool and is loving the freedom to have a shower without a worry of getting the broviac wet.
We had some friends round on thursday, some who have now left for Brisbane and all the kids had a great time in the pool. Think it was a bit much for Harry however as when he got out of the pool he slipped. Jumping catfish, I nearly had a heart attack. He cut his elbow and knee and also felt like he had bent his ankle back and not the one on the good leg. He was absolutely terrified as he thought he had snapped something. Managed to get him to sleep and calm him down, and in the morning he went off to school. I rang the plastic surgeon as our orthapedic surgeon is away for a couple of months, and he said if Harry was in pain after the weekend to bring him in. Harry hasn't been using his ankle so I decided to take him in to see if he had done anything or was it more that he was nervous at the thought of another operation if he had done something? Anyway I am happy to say that all is ok. When he had the x-ray I asked if I could have a look as couldn't stand the suspense of waiting for one of the doctors to have a look and not that I am a doctor, but all looked to be where it was before, so felt a sigh of relief!
Saturday night Harry came in and asked me to take his temperature. It was 38 degrees and this means that if it doesn't go down in the hour then you have to take them into hospital. So we had dinner and I packed Harrys bag, and luckily after checking half an hour later it was down to 37! Phew that was a narrow escape!! I have to say we have been incredibly lucky so far as we haven't been admitted other than for chemo. I realise that this luck can't go on forever, but for now we have to just enjoy our time out.
Nanny pat arrives on Sunday and we are looking forward to seeing her, but before that we have to get the christmas decorations up and start to get in the festive spirit!
Enjoy your week.
PS If you are still awake and I haven't put you to sleep, please write a comment, somtimes I feel like I am talking to myself, well most of the time actually!

Go Harry!

Well done Harry for getting into PEAC! So pleased you got your mothers brains!!!!! Missed half the year at school and still you are a star!

All is good at home with the kids, although Ellie is a bit of an emotional wreck right now. Poor thing doesn't know if she is arthur or martha and cries for nothing. I know it is all because of the complete upheaval in her life, but it is hard when she turns round and says 'you do know I am doing this for attention, don't you?' So she is either smarter than your average bear and is playing us or she has been listening to everyone saying that she will be looking for attention!

Tomorrow we have our weekly bloodtest and then hopefully Harry will have the all clear to get in the pool.

28 jumpers are confirmed and deposits paid for the jump, but still places for a few more. Going to York on the Friday night to camp, jump first thing Saturday and celebrate that we are still alive for the rest of the weekend! Sounds good to me.

Looking forward to the end of this year and hoping that 2011 will be a far better one. So much has gone wrong lately, and there really must be some good luck coming our way soon.

Amongst a million other things, Darren was helping a friend at the weekend and ended up at Fremantle hospital having a piece of a drill removed from his eye!! The saying it never rains but it pours springs to mind a lot right now. Someone is trying to test us and right now I feel like shouting 'go on give it your best shot! Throw as much as you can at us, because my shoulders are getting broader each day!'

Hope you all have a great week, and will see you soon!

PS The bottle openers will be on their way shortly and will be ready to purchase from early next week! Great stocking fillers at $5 each and funds raised go to Ward 3b.

Round 10 done!

The Mini Moke has now been redone!

I should feel sort of excited as we are now over half way through our treatment, but feel a bit shattered after 3 weeks of treatment, and I haven't even had any chemo so can only imagine how Harry is feeling.
The week started off with a 7am arrival at PMH as Harry had to have a kidney test, and as he was booked in for surgery in the afternoon we had to have the test done early. The kidney test was done and then in the afternoon he had the broviac removed and the port put in. Considering the last operation he had, this one was going to be a walk in the park, but understandably he still got a bit upset when the time came. The operation took an hour and then he slept most of the night. He was in a bit of pain, and had a couple of painkillers but by Tuesday he was fine.
Chemo started in the afternoon on Tuesday, using the port for the first time. Unfortunately as these are 2 chemo's that can't be mixed, they had to keep the canular in his arm and put chemo through this as well as the port. It was all a bit difficult as the left arm has only just come out of the sling and now the right arm is strapped to a board, so as you can imagine it was another few days of being on call.
An MRI and CT had been booked, rebooked and then rebooked with all the changes of operations etc and again we had to change the wednesday booking to Thursday for a CT and then Friday for an MRI. I wasn't overly pleased as we have spent 3 weeks in hospital and now have to come back on Friday to do an MRI.
Thursday morning started off well. Harry went off to school quite enthusiastically and made Penguin Waffles. Thank goodness he goes to 'real' school occasionally as he really hasn't done much in the hospital. The kids either feel sick or they do cooking or art?!? At 10.30 they have a break and then Harry returned to school after 11. Next thing the nurses are running around as Harrys line which is connected to the chemo has come free, and chemo is running over him. The blue coats and purple gloves appear and spill kits are opened up. Luckily there was no lasting damage, but Harry was a bit upset, more so from the shock of what happened. Clothes had to be sent home and washed 3 times, and Harry had to be reshowered to make sure the chemo didn't attack his skin.
On Thursday afternoon there was a presentation of money from the Police who rode their motorbikes from Perth to Canberra to raise money towards the Mont Blanc Project, upstairs in megazone. They wanted some kids to go up there, and after first being told he could go, Harry was told he couldn't because he was still having chemo. So we are sitting in the room and waiting and then we are told that the Ward Manager has said Harry can go as she is going to be upstairs as well and off we go with Nurse Rachel and another purple spill kit bag. Luckily nothing happened and there was a bit of channel 10 filming and some yummy food. Just after the cheque was given we had to leave as the chemo machine started beeping.
Then we go off for the line flush and get ready for our CT scan and then we are free to go till the morning.
So we get home for the night, and I am tired and grumpy. Got a good nights sleep and then back to the hospital in the morning. A plastics appt. had been made for 10 and then we had the MRI at 1. We saw Dr Savundra, who is a really nice guy. He is still saying that Harry needs to be cautious as there isn't a lot of healing going on in the leg but the arm is healing well. So the wheelchair is going to be our friend for another few weeks yet. Going in the pool should be good for physio, and by next wednesday that is where we will be. Afterwards we tried to get in early for the MRI, but no luck and we saw Jules and Will who were also at PMH and had a coffee and a chat. Then we went down to the ward and caught up with Maddie and Nicola, and waited till 1pm and off we went for the MRI.
We go upstairs and have to fill the form in and the man doing the scan asked if Harry had any clips in his arm. On Harrys x-rays there are little lines and I thought they were blood vessels, but after asking last week found out they were clips which were used to clip the blood vessels. So we tell the man and say 'you better check the x-rays' and then he comes back and says 'well we can't do an MRI as there is far too much metal in his arm!' Seriously, well you can imagine my reaction. We have just spent 3 hours in the hospital when we didn't even need to be here!!! Aaaaarrrrrrgggggggghhhhhhhhhhhhhhh!
So back home, to pick Ellie up from school and then down to Point Walter for the usual Friday afternoon session. Harry is doing well considering the Chemo he has just had, and just feeling a bit out of sorts. Hopefully we will be able to keep the sickness at bay and hope that the next 2 weeks will be temperature free so we can stay at home before another 3 weeks at hospital.
Have a good weekend and see some of you soon.

Round 9 of Chemo Finished

Another week of chemo finished and we are back at home, minus his leg cast and his sling. Yippee! Now I just have to encourage him to get out of the chair and walk! Harry did really well this week. He started his chemo (methotrexate) on Tuesday and his levels were low enough on Friday so that we were able to leave. The chemo is given in a very high dose over 4 hours and the next couple of days is hydration to try and flush the chemo out so that is doesn't destroy certain organs in the body. As usual we had a visit from the doctors as Harry had a positive fluid balance and was a couple of kilo's heavier. Having done this a couple of times now, I said 'don't worry, just about bed time he will start to wee and it will happen all night long!' and I was right. Every hour on the hour and by the morning we were no longer in positive balance. Needless to say I didn't get a lot of sleep!
Harry had an echo test, which is done on a regular basis to check the heart is not being affected by the chemo. He also had a hearing test. Last time we had this done after his operation, the high levels had been slightly affected but Harry did have a cold at this point, so we weren't sure if this was the reason. Anyway they repeated the test and unfortunately his hearing has been slightly affected, but not in the normal speech range. The chemo we have next week is the one that affects the hearing and luckily we only have one more of these, and they might even look to alter the dose before we start.
Next week has a whole heap of tests starting Monday morning with a kidney test. Then in the afternoon he will be having the operation to remove his broviac and insert the port. He is pleased as it means he will be able to swim in a week or so, but wonder if he will get nervous again before the event. Then on Tuesday we start chemo, Wednesday we have a MRT and a CT scan, and Friday we have another meeting with the plastics team.
Professor Wood came in on Friday and saw Harry. He removed the sling and asked them to remove the cast. It was quite funny as he got Harrys arm and pulled it this way and that, and Harry didn't say a word. If Lisa, the physio, had done it, she would probably have got a smack! Anyway Prof Wood came out unharmed, so all ended well. He is allowed to walk on it using the crutch within the boundaries of his comfort. The foot is very stiff after being in a cast for 9 weeks, but hopefully in a couple of weeks it will feel better. When he goes to school we will probably put the arm in a sling, just as it is still pretty delicate and the last thing you want is something to happen now. Mums neighbout Lynn has also lent Harry an air cast which is something he can use and take off as he fancies, and means he doesn't have to sleep with anything on the leg. We just have to encourage him to walk, as it is very awkward using the crutch and after being in the wheelchair for so long he gets tired very quickly. The good news is that they did an x-ray again, and at the top part of the donor bone this looks to be healing which is good news.
We had a double room this week and Harry shared for one night with Nicola who we met on the ward. It is so much better for the kids to share with someone rather than being stuck in a room on their own.
Looking forward to this time next week as it will mean that we have a couple of weeks at home. Enjoy the rest of your weekend and see you soon.

PS Just watching Telethon and then off to bed.

Oh dear - I hope this isn't me!!

I had to share this with you all, as I received this card off my lovely niece Katie!!

So excited see you at 14,000ft!

Vic xx

Home for the weekend - November 5th - 8th

This photo was from the school disco a week ago. Sue B found it highly amusing that on the back of the wheelchair it said PMH and next to it was my ruskis!! So as promised here is the photo Sue!

Well we made it home! Harrys levels were done to .09. This is the methotrexate level in his body. The chemo goes in for four hours at a huge dose and then they spend the next few days trying to flush it out of the system so it doesn't affect the various organs. The level has to be below .1, so really we just made it. This could be because of the fact they did the level very early as they were also testing him for glucose.

Harry had a good night Thursday. We had a nurse that I have seen before but has never looked after us. Her name was Pam and she sounds just like Pam Perry. Harry was asleep when she arrived and woke a couple of times to go for a wee, and the nurse came in. She could have only said a few words, and Harry said 'she sounds like Pam Perry,' and then went back to sleep!

We went to the see plastics, and the room was full of a million people waiting for their appointments. After Harry just having chemo there was no way I was going to sit around in a room full of potential germs, so asked how long the wait would be, as Harry had just finished chemo and didn't want him to catch anything? and we jumped the entire queue and went straight to the front! There has to be some perks of having to go through this awful treatment. We saw Dr Savundra who explained that the screws which are holding the tib and fib together at the ankle area need to have some bone healing because if the screws break from the pressure it will mean anothe operation. Harry had the option to have his cast off but he would literally then only be able to transfer from the bed / seat chair and back again, or keep it on and use the crutch occasionally. He hardly uses the crutch as it is such hard work, but have to keep pushing him as the longer he doesn't use it the worse it will eventually be. We were then sent for another xray and this time there was some sign of healing but not enough for Harry to be able to walk!

We were home by lunchtime and harry and I stayed at home and chilled for a couple of hours before Ellie came out of school. After school we then headed down to the river for a few ruskis and some hot chips. Then we took the kids to McDonalds for tea, and afterwards I ended up going to 'Double Lucky' in leederville with the girls.

I got some lovely new pyjamas which was very sweet of the girls. For those of you who know me, you will often find me in my pyjamas at any time over the weekend. Why get dressed if you are not going anywhere I say. Anyway to say PMH is like a second home would be an understatement, and on Friday morning this was made more apparent when I went to the Kite Cafe on the 4th floor - we stay on the third floor - in my pyjamas! Harry wanted sushi, but I told him there wouldn't be any and 7.45 and I wasn't even dressed! The nurse then came in and we asked her and she thought there would be! So being the good mother that I am, and doing as I am told I went up the cafe in my pj's on the hunt for sushi. As I thought the sushi delivery hadn't arrived and instead we ended up with egg and bacon. Anyway at least next week i will have some nice new pyjamas to go up there in!!

Thanks to everyone who made us dinners this week, and of course to Paula Beck for organising it. Everything has been eaten and nothing wasted. It was so good just not to have to think about food, and know that Ellie was eating good food and not living off polony sandwiches.

Anyway we are back in on Tuesday and will be there till Friday again hopefully, so if anyone wants to pop up then please do.

Ciao for now, Vic x

PS Forgot to mention in my previous that Uncle Johnny also popped into the hospital as well as Aunty Marj who had been in bearing gifts! Don't want him to feel left out at all. I know how disappointed he is that he won't be here for the sky dive, but we will be very grateful for their donation to the cause.

Nearly finished round 8!

Thursday evening, we have had our second methotrexate level done and fingers crossed we should be out of here tomorrow! I wrote some info on Tuesday but I was so tired, I couldn't even think straight. Melbourne Cup was definitely different to last year. We were on the Ward, but luckily got a few bets in on Monday at the Tab and Harry had the winner and I got second and third. Darren also got the trifecta, so all in all we did ok.

Lisa, Harry and Jack came in and bought McDonalds for the kids, and Lisa and I had a very yummy prawn salad with sparkling water for lunch. Little harry had his appointment upstairs and they left Jack with us which kept Harry entertained. Aunty Marj popped in as well, so we had a full house.

Then in the afternoon Darren popped in and I had a walk over to the PMH Foundation and got a receipt book for the donations for the sky dive. Saw Pam Perry who kindly made me a coffee, and I helped her put all the tax receipts into envelopes in return.

Wednesday we were waiting for the surgeon to come in who did Harrys broviac. We would like to change the broviac over to a port and usually they would put it on a different side, but as he still has his arm in a sling they can't do this and therefore she wanted to see Harry. About 6pm and we went down to the Ronald McDonald room for a cup of tea and to fry Harry an egg or two, and it turns out the surgeon had popped in and left before we could say 'we are here!' The latest now is that she is going to book a date?? I thought she wanted to see him, but anyway I suppose we will have to just wait and see what happens. Apparently if it is going to be done then it will be after the ninth chemo but before the tenth chemo. I know it is another operation but it will mean that he can swim and at least shower properly. If it was winter, then we wouldn't even consider it but with the weather warming up then it would be so much better if he was able to swim.

Apparently we have to have an audiology test before the next cisplatin which is on the 16th November, and they did mention that audiology could fit us in at 3.30 tomorrow!! So I quickly said 'no, sorry I have a date with some ruskis, the river and some good friends'. Luckily we popped upstairs and we managed to change it to next week when we will be here as an inpatient anyway.

I have been working on the nurses over the past few days to see who we can get to jump. I am sure there will be a couple of them but the problem is that they have to know what shift they are working. We have had a few more people sign up, so at the moment the first and third jumps are full, and there are only spots left in the middle jump. This is for no other reason than it is mainly the family and a couple of close friends who are jumping in the morning and then in the afternoon Maddies dad and relatives are jumping with a few students from Curtin Uni.

So as I said in a bored moment months ago, I would like to do something different and raise money for Ward 3B. When we told people about the sky dive I have to say there was comments about 'why not sell chocolates?' Well unfortunately chocolates is not something I would do for a number of reasons. One I am always trying not to eat them, and two I try not to let the kids eat them as they need the extra sugar like a hole in the head. We have however come up with something that is a little less frightening and expensive than a sky dive and something that we all need, well the adults anyway. How many times have you gone to an outdoor picnic or to point walter on a Friday afternoon and bought beers that are not twist tops and no-one has a bottle opener? I know it happens a lot as I have certainly been caught a few times! So we have got key ring bottle openers for sale. Great stocking fillers and a bargain price of $5 each. They are in red, green, blue and silver and I am sure they are going to fly out of the house! Hey, if we can sell 1200 gingerbread men, then we can certainly sell 1000 bottle openers. If anyone wants to take 10 or 20 off my hands and sell them in the office I would be most grateful, and you just need to say the word. All proceeds are going to the PMH foundation in conjunction with the Sky Dive.

The next big thing is will they or won't they take the cast off?? Watch out if they don't as we are going to have one grumpy Harry!! The problem is that his right leg is even aching when he walks with the crutch as he hasn't really used it in 8 weeks, so I am going for taking the cast off and get him using it. Then again who am I other than his mother!!!

For those of you who have seen Harry recently you will have noticed that his hair has started to grow back and he does look lovely and like a little kiwi, but if you read this and see him over the next few weeks, please don't mention the hair. It is coming out again, and he was very upset about it this evening. I know it is only hair and it will grow back, but until you are sitting in this situation then really you don't have a clue what it is like for these kids and what they go through. All they want to do is be normal. Not poked and prodded. People constantly asking them how they feel. They want to go to school, not to the PMH classroom where you might be the only child or if the class is busy there might be a couple of you. They want to be at home and be able to do all the things that kids do and enjoy their childhood.

Whilst on the ward this week, a dear family that we have met since being here have had some devastating news. I know there is nothing that I can say or do to help them, but if there was I would do everything within my power to help them. I haven't said anything to Harry as he is pretty sensitive and he will be very upset, but we just have to keep hoping for a miracle. Life is unfair and it can affect anyone of you, so live your life without regrets and treat others as you would want to be treated yourself. My thoughts are with you all. Stay as strong as you can. xx

Anyway happy birthday to myself, Abi and Andrea (PMH school teacher) for tomorrow and Aunty Marj and Helen for Saturday.

Back at the resort!

Well we got through our 2 weeks at home without a temperature and Harry managed to go to school for the whole time which was great. We still have our leg in the cast and our arm in a sling, but we are back to see the plastics people on Friday and hopefully then we will have some idea of when we might be able to walk again.

I have to admit that I didn't have a very good day yesterday. After being at home for a couple of weeks, the weather getting better and then thinking that we had to come back in here today for 3 weeks of treatment for a start, I just wanted to cry and I did! Apparently the surgeon who put in Harrys broviac is coming to see him tomorrow to see if she is going to change the line over to a port which will mean he can go swimming. It does mean another operation and a general but think he would be far happier if he could go in the water, as would I!!

The sky dive seems to be gathering momentum and more people are signing up and getting sponsorship. We need some corporate sponsors as well, so if anyone reading this knows of a company that might be interested then please let us know.

I did have so much to write this evening, but am now particularly tired and will have to maybe do some more writing tomorrow.

Sleep well!

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

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.