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.