3 years since we heard the dreaded words

Wow, I can't actually believe where the time has gone, and am so pleased and grateful that every day we are getting further away from the awful day that changed our lives forever.

So much has happened that I don't even know where to start. Most of you know all the news from facebook, but as the blog is something that I will keep forever I thought I would write an entry, so I can remember further down the track.

Harry is doing well, and is currently in Year 7 at CBC Fremantle. He is enjoying school and the new challenges that senior school brings. We had a parent teacher meeting last term and I showed Harrys xrays to his sports teacher as it is very difficult to explain what has been done, and most people have no idea as to the extent of the surgery. The one teacher didn't even know there was anything wrong with his arm, and the other one explained that he did know as Harry had told him. Harry said he couldn't do something because of his shoulder, and the teacher asked what was wrong with his shoulder, to which Harry apparently replied 'I don't have one!' I suppose that certainly would leave you in doubt as to what the problem was. He has been playing tennis for Melville in the winter penance, and is enjoying this. It is great to see him playing sport and getting on with life.

Ellie is now in Year 3, and the split year 3 / year 4 class at school. She enjoys school and is thankfully quite smart, and likes to learn, so we just have to hope she keeps up her enthusiasm. She is still doing WA stage school, and also started gymnastics last year and is doing competitions and badge tests throughout the year. She is definitely not going to be a wallflower, and I am hoping she is going through the teen age stage early. You know the answering back, and being defiant stage everyone talks about.

We also have a new edition to the family, and her name is Hollie. Yes, surprise surprise, here i was planning my 40th party, when along came a little surprise. She was born on New Years Eve, (by choice) and was 7lb 5ozs, and 52cm's long. I have to say she is an absolutely joy. She is calm, chilled, and sleeps well. Finally I got it right! Nothing like me, and actually nothing like Harry or Ellie, which is probably a good thing as I wouldn't have survived if she didn't sleep!! She is adored by all, and her first sentence will probably be, 'stop kissing me', as she is kissed from morning to night.

Sadly Sam the dog, got hit by a car last year, and is no longer with us. It was extremely sad, but luckily the children didn't see it happen. We have no plans to get another dog at this stage, so I suppose it will be a case of watch this space.

In the last few months, we have been on a couple of camps with camp quality. We were lucky enough to get to go to Rottnest for the weekend, and both Harry and Ellie went on an overnight camp. Ellie went to Woodman point and being a younger age group they just had the one night there. Harry went to Erin Halliday and they stayed there for 4 days. They both had an absolutely fabulous time and can't wait to go to the next one. They are such a fabulous organisation and do so much for the children. It is also great to catch up with people you have met on the ward and to see how they are going, and meet new friends. All of the children have their own companions when they go, so as you can imagine there are a lot of people who volunteer and give up their time. One of the volunteers is actually working at Attadale Primary School, as a relief teacher, and he is also a fireman. I am sure he must have some faults. Harrys camp went to the Dockers game, Cirque De Soleil, Adventure World, Bowling, they did crazy art and cartooning. They went to the movies, and they also had a big disco in the city, and there are other things which I am sure I have forgotten. I know some people think this might be over the top, but these children have been through so much that the laughter and fun camp quality give back to them is totally and utterly incredible. It also gives them the opportunity to mix with either children who have been through treatment or their siblings (as they are also invited on camps - as they suffer as well) and not feel like they have to explain anything. Camp quality you are truly amazing!

PMH, Ward 3B and childhood cancer have become such a big part of our lives. We recently said farewell to David McLaughlin, who passed away after a long battle with Leukaemia. His mother Anne, and I used to share a vodka or two when we were on the ward. The funeral was beautiful, and the staff from 3B said a few words. They talked about Davids 3B family and it made you realise that we do become extended family. We spend so much time together when the children go through treatment that it is totally understandable. I suppose the other thing is that unless you have a child diagnosed with cancer, then you really don't have any idea what it is like. This isn't a bad thing, as it would really be nicer not to understand what it is like, it just means that sometimes you talk to other cancer families as they really do understand.

Sadly today we said farewell to Harvey the Cure-ageous Lion. He was son to Gabe and Cassie, and brother to Oliver and Genevieve. The funeral was beautiful, whilst at the same time understandably very emotional. Cassie also writes a blog and the title after Harvey passed was 'it wasn't meant to be like this,' which basically sums it all up. I remember saying to my Dad when Harry had been diagnosed, that I just wanted someone to ring me up and say 'sorry this isn't your journey, we got the tapes mixed up, and Harry doesn't really have cancer!' Sadly this phone call never came.

We shouldn't be going to childrens funerals, and children shouldn't be diagnosed with cancer. It does make you wonder who is watching over us, as why do they let this happen? I just can't imagine the feeling of losing your child, and can only imagine that I would spend the rest of my life in denial. People say to you when your child is diagnosed with cancer, 'you are so brave', 'I would have just gone to pieces' or 'I couldn't have coped', well you have to, your child needs you and sadly you have to put on a brave face. I can only hope that when a child passes the family finds even more strength to help them get through this loss.

Recently so many of our brave 3B children have relapsed. To be told your child has cancer is bad enough, but to be told it has come back again is unthinkable. Sadly though, this is the reality of the cancer journey. I know that as parents of 3B we call it scanxiety. Every few months you have more scans and the worry and nerves start, until you finally get to the results. I remember being asked 'are you worried?' and I said 'no as Harry will be fine, and if he isn't you will find me on the floor with a bottle of vodka!' How ever hard you try not to worry and you say you are fine, you will always find yourself short tempered, snapping without reason, or generally just shitty with the world, and then you realise it is scan time!

On a more positive note, Harry was interviewed on today / tonight about the bone bank (now called Plus Life), and hopefully they will show the interview soon. He came out with some classic comments during the interview. They asked lots of questions about the treatment, the surgery, etc etc. After the interview, they got him to walk out of the house and do some jumping on the trampoline to show him doing day to day activities. Then they asked him to re-do it, and as he was walking back into the house he turned to the camera man and said 'do you mind not filming my house number, as I don't want any old randoms turning up?' He obviously thinks that once he has been on the tv people will be trying to find out where we live!! It makes me smile as there has been so much publicity about the hospital in the last few weeks, and talk of it being third world, well lets hope they play all the interview, as Harry didn't see it that way at all. He didn't enjoy being in hospital but he made the most out of a bad situation. He said he made a lot of friends there and we had fun! Got to love a childs perspective, having said that we always tried to have a laugh and keep the mood as light as possible. Bingo on a Friday, when we were in Room 7. As soon as one child won bingo, we would run and photocopy the sheet and say everyone in the room won! Don't tell anyone thought as they might want their prizes back!!!

To all those still travelling this journey, stay strong, and keep smiling. Thanks for all the love and support along the way xx

A year has passed

So as usual I left you all hanging there for a while after the swimming carnival and our year post chemo results, so thought I better update you.
The swimming carnival was great. I was so proud of harry for taking part and to top it all off he got a third and a fourth. Which considering he hasn't done any swim training for 2 years isn't bad, and the other small fact that he can only use one arm was pretty outstanding.

I was involved in helping with the places of the children, and one of the kids who came 5th was having a real strop and decided he wanted to go home and didn't want to swim anymore. Honestly after watching my son swim with one arm and just be so happy to be involved, I could have easily drowned this child. I suppose the problem is that we have now been faced with a life that has become the norm for us but for so many others it is not.

Quite a few parents didn't even realise that harry couldn't use his arm, and it was so nice to hear everyone cheering him on, and yes I did cry.
So now I just have to try and encourage him to do some swimming - even if it is just for fitness.

Harry has also done his end of year tests. This involved a kidney test, heart test, hearing test, bone scan and CT of his chest. Whilst it is always a nerve racking time, I know that he will be ok, and if he isn't you will find me on the floor with a bottle of vodka.

We now go to scans every 6 months and blood tests in between, which is great as it means less time in hospital, and let's just hope that the chemo and surgery has done enough to stop the dreadful disease ever returning.

One of the pictures that I have uploaded is actually a poem that Harry wrote during his first term in year 6 this year. Not sure if you will be able to read it as it is quite small, but it is worth a read.

Another mother of a child who was diagnosed a year ago, put this on facebook and I think it really sums up how your world changes when your child is diagnosed with cancer. ( I have changed it to fit harry and his story)

A year ago today my childs life was forever changed...a year ago today a doctor came to us with news that our then 9 yr old son had osteosarcome...a year ago today my sons normal became anything but that...a year ago today we began a journey that will last a life-time....a year ago today the worries I had before didnt hold a candle to the worries I would face as a parent of a child with cancer...a year ago today my son started to fight for her life...a year ago today i began to watch them pump toxic chemicals into my sons body ...a year ago today i started learning my new vocabulary of words I didn't even know existed...I never thought I would be dealing with a sick child and watch him suffer but find it in himself to smile through the pain...I saw my son become the strongest person I know...a year ago today is now our forever.

I am definitely going to print off the blog after this post.It is funny reading back over the blog as I write it like it was 'us' going through the treatment and not just harry, but I suppose that is because I have been there every step of the way.
It has been a year since we finished chemo and began living our life back at home and away from PMH. I sometimes can't quite believe what the hell just happened, and if I sat and digested it all I am pretty sure I would fall in a big heap on the floor and it might take me a long time to get back up. This however I WILL NOT DO!

Harry has got to live with the effects of his cancer for the rest of his life and unfortunately he has grown up way to fast after being faced with a situation that a child should never have to go through.

I hate the 'C' word and wish that it had never become part of our lives, but I suppose for now we just have to get on with it and hope that the little bastard never comes back.

I will continue to update the blog at intervals but if you want to send us an email at any point feel free. vic@suremigration.com

This is your last chance to be mentioned in the blog, so if you have been a part of our life over the last couple of years then please feel free to leave a message.

For now its goodnight from us xx

Tough one!

I know there are people out there who are worse off than us, but this is still going to be a tough one for me. Ever since Harry was little he loved the water. Looking back through my pictures he was always in a bucket, bath, and I even have pictures of them in the wheelie bin! Swimming and playing water polo were what he loved.
I remember when the surgeon told us about the operation I said 'well that solves that argument!' To which he asked 'what argument?' and I said 'will he swim for England or Australia?'
The fact that he is going to swim even though he can only use one arm is pretty special, but just another reminder of the crap that cancer puts our children through.
I haven't been able to stop crying since I woke up, so I just hope by the time the swimming carnival is here I will have no more tears left.
OK, so I have done my boxing and hopefully now I am too knackered too cry! Must go and get ready as I am the place scribe!
To my darling Harry, your strength, and courage is outstanding. Your compassion for others after being through so much yourself is truly awe inspiring. I know I am biased because I am your mother, but I am so proud of you, as is everyone around you. To make us smile, and sometimes cry is what makes you you! As they said in assembly yesterday. Harry please don't change! xxxx
Go get 'em Diamond!

3 months into 2012!

Well as you can see I didn't end up getting the blog printed and have decided that I should update you all now as Harry is currently going through his scans which mark a year post treatment.
It has been a busy start to the year. Nanny pat was here until early March. We went to Bunbury, Jurien bay - swam with the sealions - and I also got Nan to have a ride on the back of the jetski! She can't say she leads a boring life at the age of 83!
Unfortunately Grandad Jim passed away at the end of February and Mum went back to the UK for the funeral and to catch up with the family. Hopefully now he will be reunited with Nanny Dos and they will be looking down upon us and watching over us.
Darren is back in the UK at the moment, and is also spending a week in Malta. It was Nanny Shirleys 70th birthday which is why he went back and is catching up with friends and family whilst over there.
Life is as busy as ever. I have started doing some regular excercise as am just getting bigger and bigger. The excercise is making me feel lots better and definitely giving me more energy.
Work is busy but if you know anyone who wants to migrate to Australia, please feel free to give them my details. vic@suremigration.com
Harry and Ellie are both really enjoying school. Harry has two fantastic teachers and he is really excelling himself. Ellie has a lovely teacher but unfortunately she is leaving tomorrow so hope that the new teacher who starts next week is as good.
The 3rd skydive is booked for the end of October this year, so if anyone is interested then feel free to get in touch. Minimum fundraising requirement is $1000 per person which shouldn't be hard as you have got over 6 months to arrange it.
So now we are at the year check ups. It really is a strange feeling, whilst it seems to be a milestone like your first birthday or first anniversay, the sad thing is that in three months time we will be having more checks. We will never be free from this bastard disease, it will always be a black cloud which hangs over us and we just have to hope that it doesn't drop down and affect us anymore than it already has. I know that Harry will be ok. He is looking great, and is pretty healthy, but forgive me for being a little negative when I say that it scares the shit out of me, because he looked all of those things when he was diagnosed.
Harry and his friends have all started to get mobile phones and Harry has now become obsessed with getting an iphone. Seriously, these children just expect everything, and I spent the weekend telling him this and that there was more to life etc. Then I sat here last night and thought, if I could change the path we have just been down and never be affected by the cancer stick I would give him as many iphones as he wanted.
Whilst 3B is a place that you never want to go to, the determination, courage and strength which these children have is amazing. Going back to the ward today feels like going home in a way, and when you think of it over 10% of harrys life has been connected with that ward!
Anyway as many as you have seen on facebook this is a week that has to be organised precisely and strategically.
Worked yesterday in rockingham, left the house at 7.45 and got home at 8.15 after picking the kids up from mom and dad's and having dinner.
Today I went to boxing, then up to the hospital to take over from kong kong and his duties. Finished up there at 1.30, back home to get some food and then picked the kids up from school. Caught up with a mum from school, dance for ellie, then dinner and now the kids are in bed.
Tomorrow we are back up to PMH for 9am. Mum should be coming up about 1, as I have to be back to see Ellie do her edudance. Then I have an appointment with Ellie at 3.30. Tennis with harry at 5.30 and then dinner, bed.
Thursday - assembly as harry is getting an honour certificate. Down to rockingham for work, back to town for a CPD and then the evening ritual.
friday - boxing and then swimming carnival. Friday afternoon - crashing and getting my breath back!
Must run as I really should be working and getting to bed before 1am!
Anyway fingers crossed for good results, and hope to be celebrating next week with a few cocktails at the Adventurers cocktail party!
Thanks to everyone for your support as always xxxxxxxxxxxxxx

The last day of 2011!

I can't believe where this year has gone. So much has gone on since I last wrote the blog, that I should fill you in on a few things.

Firstly Harry passed his swimming. I was so pleased for him as this was a real boost for him. He managed to keep up with the kids in his class and seemed to enjoy the 2 weeks. Ellie also passed which was really good, as would have been a bit of a nightmare if one had passed and the other hadn't.

Nanny Pat came out in early December and is here till March. It is lovely to have her here, although think when she comes to our house she thinks we are all mad! She had a sleepover and reckoned it was the best night sleep she had had since she got here, but I think it was because she didn't want to come out of her room incase one of the kids had woken up.

Then we had Harrys birthday and took the jet ski down the river and a group of his friends. The weather turned out to be perfect and the water was really calm which was good. There were a few groups of people down there - obviously come in from in land and one of the ladies swore at the kids for throwing seaweed. They were throwing it at each other and not at anyone else, and when she was told by one of the 11 year olds, to mind her language she decided to swear again. I would have gone over and said something but then realised we were going to be hitting a pinata which was in the shape of a wheelchair. So without knowing the history they might have thought we were all a bit sick so decided just to say nothing! Harry had a good day and we ended up there till late.

The Adventurers had their christmas do at the Telethon Insititute and about 100 people got together to celebrate the effort of the past year. We were all awarded photo blocks from our events and I also got Adventurer of the year, which was a real honour. Of course we had a few drinks after to celebrate and when I got in I told Harry I had been awarded 'Australian of the year'. Although technically not quite right, it just showed how special I thought it was!

On the 21st December Harry also had his 9 month scan report, and again got the all clear. We met one of the doctors who read the report, and told us that the bone scan showed us the fracture was healing fine. Fracture, fracture, what fracture?? Well apparently when Harry came off the jet ski back in late October, he fractured his collar bone and scapula! I couldn't believe it. So although I was over the moon that he got the all clear, I think I was in shock about the fracture! Proves how tough he is though. We now go back in 3 months again which is about March time, which I am sure will be here before we know it.

Harry also got to be in the christmas pagaent which was lovely to see, but a lot of waiting around for the kids and I think next year he would rather just watch it.

It seems like only yesterday when I was writing the blog for the last day of 2010, and the funny thing is that I think a lot of my resolutions are going to be the same....surprise surprise.

Ha ha and here they are :
Heres to a better 2011. My new years resolutions are :
1. To make it through the sky dive. - I have actually made it through three and this year we are going to be doing it solo!
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. - I think I have got a bit better but definetely still room for improvement.
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.
Well I did ok, but then as usual the end of the year lots of excuses for drinking and I went off the rails. So as of Monday it is back on the diet rollercoaster! This time I can't fail as I have a big year organised and lots of goals to meet

Resolutions for 2012 :
1. Be at the weight I have set by mid April.
2. Work on my migration business and make some money.
3. Enjoy life and make this a year to remember, Life is a gift!

I have decided to print the blog now, but will continue to update everyone on harrys progress over the next few years.

Wishing you all a very happy, and healthy new year, and hope that all your dreams come true in 2012! I have a feeling this is going to be a great year...........

Telethon WeekendWhat a brilliant weekend this turned out to be. Thanks to Ali G Harry got to go to the opening show and then we also had tickets for the final show. We spent Friday evening watching the show at home, and having a laugh with everyone on facebook, commenting on what was happening. Next year we will all have to get together and watch it! We saw Harry, Ali, Lauren and Blair on the television a lot as they were only a few rows from the front. Harry loved it and has told me that next year he is going, but will stay there till 2am! Seriously think that he has missed most of his childhood and thinks he is an adult.
Sunday afternoon we all headed off to the phone room with our cheque from Telethon. Slightly broken due to someone cheque riding the night before, but a bit of masking tape and no-one would know. We got our few minutes of fame and met a few of the stars. The kids had a dance with one of the home and away stars and we also met singer / songwriter Amanda Canzrulo. After this we headed off back to the Convention centre and managed to sneak the four of us in to watch the final show. The Adventurers raised over $1,011,000 last year which was amazing and a great effort by all.



Ellies BirthdayCan't believe Ellie is turning 7 on October 21st.
Friday night we went to Sandrino's for dinner and Ellies friend Molly came with us. Dinner was lovely and the girls had a great time. Then Mollie stayed for a sleepover and they were both very well behaved.
After a bit of a disagreement with the council about putting up a bouncy castle at point walter, everything was on track to have the party at the park! Apart from the weather. 7.30am Saturday morning and I look out the window and all I can see are black clouds. Then I hear thunder!! So the next thing is for the tidying up to start as we had to have the party at home.
What a day! Thanks to Harry and his friends who organised a few games for the children and to Matt from Buddys Bouncy castles who provided a trampoline and a good time was had by all.




Harrys Make A Wish
Finally after lots of organising Harrys make a wish was presented on the 29th October. Originally he had asked for a trip to japan, but after the disaster over there we were not allowed to go. He then decided to ask for a jet ski. I didn't think they would let him have one, but make a wish said it was ok, they just needed permission from Harrys doctor. I had already spoken to Harrys surgeon before he asked and his reply was 'if he falls off he will hurt himself, but then if he falls down the stairs he will also hurt himself and you can't wrap him in cotton wool!'
The oncologist however said 'no', so make a wish then asked the surgeon and he said 'it was ok!' So Harrys wish was granted.
Thanks to everyone who came down and spent the day with us. The day started off well, but unfortunately a few bumps and Harry and Fletcher ended up in the water. Harrys arm was really sore and after a couple of hours I took him to PMH and got an x-ray done to check nothing was out of place. All I could hear was the oncologists voice saying 'no you can't have a jet ski', my mum saying 'I don't like jet ski's they are dangerous', and my Dad saying 'it looks a bit choppy out there!'
Luckily the x-ray was fine. The radiographer had x-rayed Harry a few times and Harry asked if everything was ok, so she let us look at the x-ray. Harry looked at the x-ray and said 'I am not sure that screw was there before!' I had to point out we were checking nothing was out of place not that another screw had jumped through his skin and into his arm.
Harry had pulled a muscle and due to the limited movement in his arm, the arm is more tender than it would be for most.
So a few weeks passed and on Saturday we took the jet ski back down to the river and had a bit of a blast around in the water. We just had Harry, Ellie, and their friend Lara on the biscuit and they had a great time. The dolphins were also swimming around and whilst we sat and watched them one of them swam under the jet ski!
The only problem now is that I need to learn how to reverse the trailer! So tomorrow morning we are off down to the river to have a go at reversing! Shame it is also going to be 34 degrees!

School Swimming
This is a time that I have beeen dreading since I found out Harry had cancer and that his arm was not going to work as it should. Harrys school did swimming in term two last year and we actually went from his last swimming lesson to PMH and the rest as they say is history. Harry was really emotional all weekend, and I presumed it was because he was worried about the swimming, but when i asked him he didn't know what was wrong.
Finally on Sunday evening Harry admitted he was worried about not being able to do the swimming. I just wanted to fix everything and make it right, but I couldn't. I went to swimming on the Monday to make sure that they understood the situation and all seemed to be ok. I watched as Harry swam with all his friends but only using his right arm, and the tears streamed down my face. It breaks my heart to think that this bloody disease causes so much heart ache and it is so unfair. These poor children are being robbed of their lives, their childhood and also all the effects of the treatment that the children are left to suffer for the rest of their lives.
Harry has managed to keep up with everyone and today he had to do the life saving, which means swimming a certain distance with his clothes on. I really hope that he passes as it will be such a boost for him, but even if he doesn't the fact that he has been involved is brilliant.

Well I hope that I have remembered all the important parts of the past few weeks. I am going to finish off this part of the blog at the end of the year, and get the blog printed to keep a record of this chapter in our lives. I will continue the blog to keep everyone updated afterwards.

LIFE IS A GIFT!!!!!!!!!

I have to share

Today we spent the day at Bayswater Football Club, shaking tins and selling merchandise. We had a good day and the people were very generous. One lovely couple came up and donated $50 as they had read the Parish family story in the STM magazine a couple of weeks ago. The kids had a lovely time and did well as they shook tins for over 6 hours!
Tonight on the news was the story of another family from 3B who have gone home as there is nothing more they can do for Zxavier who is 2 years old. Not only this, but Shelleys husband was killed in a car crash last year and she has 4 children. What is wrong with the world, and how much can a family take.
I sit here with tears streaming and wonder why cancer has been sent here to cause all this devastation and why can't it go away and leave us all alone? These children have done nothing, yet their childhoods are being taken away from them. For those who don't survive the cancer their families are left with their hearts being torn apart. For those who survive the cancer and chemotherapy, life after treatment certainly has its challenges. Cancer is a part of our lives, and will never go away, and life will never be the same again.
Whilst collecting today, I heard one lady as she walked past say 'charity starts at home'. I know we can't all give all the time, and there are lots of charities out there, but when cancer has affected your life it becomes personal. (I also have to say she was the only person as most people were very generous)
My one wish for the day is that she watched the news this evening and regrets making that comment and not even putting 20c in the tin. The only way we are going to find a cure and stop this happening to our children is research and that is not going to come from the government, but people like you and me. So forgive me but I will keep raising funds, and trying to make a difference, and if you don't want to donate just say 'no', but it won't stop me asking.
Our thoughts and prayers go out to Shelley and her family.
Heres to the dream of living in a cancer free world. Night night. xx

Another month has gone by!

As most of you probably know we have had the scans and after a bit of a scare all is good. The day before the scan Harry fell over at school and his knee was hurting. He could hardly walk on it at one point and was back on the crutch. Harry decided that it was to do with going to hospital as every time we have been in there for an appointment he slips or falls just before. When we went for the scans we went to physio and they suggested that if nothing showed up on the bone scan it was down to muscle and nothing we could do.
During harrys bone scan the lady mentioned everything looked ok, and being the nosey person I am, I had a look and said 'if that is normal, then what is that bit?' There was a piece of SOMETHING which was coming down from his growth plate. The reply was 'oh I didn't notice that' and then started to tell me about tumours, and bone infections, which was where this whole nightmare started. I felt so sick, but had to try not to show it as harry was with me.
He thought I was upset because of another child on the ward, so I just let him believe that. After the scan I went to the ward and told them I wanted the results that day and not in a week. Typical 3B, no phone call later on, so I rang and found out that the change in his growth plate was due to altered weight bearing, and there was no sign of recurring disease.
I felt fine until the following day when I got a phone call off the oncologist who said that she couldn't tell me the answers until they had their meeting on Monday as the scans were obviously not normal. Great - so two different answers, but I decided, after finally calming down, that I was going to believe the first doctor, and that my oncologist was on a power struggle and was telling me that she would tell me when she was ready, not when I needed to know!
We went to the appointment on Wednesday and there were no oncologists there so I presumed all was good and saw Dr Connor who confirmed this. The scary thing is that this is going to happen every 3 months and then 4 months and 6 months until we get to the 5 year mark. Don't know if my nerves can handle this.

The skydive took place on the weekend of the 17th September. We were very lucky with the weather on the Saturday as we managed to get 28 of the 34 people to jump, but unfortunately the weather turned and the last 6 people have had to postpone their jumps.
The weekend was very eventful with lots of laughs, tears and new friendships made.
So far we have raised about $55000, which is great but next year when we do it you have to raise the $1000 before you are allowed to jump. That way we will increase the amount we raise.
I ended up jumping twice and the second time I pulled my own parachute, and jumped at sunset which was amazing.
Till the next time.....
xxxxxxxxxxxxxxxxxxxxxx

Better late than never!

Huge apologies for not having updated the blog for a while, but life has been very hectic. What is new I hear you say, well nothing really.
Harry had his appointment on the 19th August, (that was a while ago) and his ankle has healed and he is up and walking. We left the wheelchair at the hospital and got crutches, but even those have now been discarded and harry is walking on his own.
We did the city to surf on the 28th August, and Harry walked about half of it. We had to borrow a wheelchair from the golf club. In my excitedment at PMH I gave the wheelchair back so I could get my $50 which had been promised to harry if we could leave the chair, then driving home thought 'oh no, what about the city to surf!'
City to surf was good fun, well once we got there and had parked. Bit stressful but made it in the end. On the way back, we met Ali G who kindly dropped me to the car and luckily harry knew where it was as I had no idea! So thanks again Ali, or we could have been still walking round trying to find it now.
The Sandrino dinner which was held last week went FANTASTICALLY! We raised $30000 which for a group of 120 people at dinner is amazing. The night was great fun, and the entertainment was brilliant. Auctioneers did a great job, and if you ever get the chance to eat at Sandrino then please do, a wonderful group of people who made the night very special.
The skydive is now less than 2 weeks away, so I am in the process, of working out when everyone is jumping and where they are sleeping, so starting to tear my hair out a little bit.
Tomorrow is our 6 months scans and we don't get the results till next Wednesday, so it is a good job that I have all this sorting to do to take my mind off things.
Saturday we are doing our skippers ticket and then it shouldn't be too long before Harry receives his Jet Ski from Make A Wish. So we see you all at Point Walter for a bit of summer fun.
If anyone would like to donate to the skydive then please click on : https://donations.mainmenu.com.au/donation.asp?0105=5a54&00004cd2=cffef494d1ab39b561c1b27a479191c8
You can donate by credit card, (please put my name in the notes section) and this will all go towards the skydive fundraising total.

Send lots of positive thoughts for tomorrow and even more for next week. Remember LIFE IS A GIFT!

Time really does fly!

Sorry I haven't updated the blog in a while, but life has been a bit crazy which I know is normal, but just haven't got round to it.
We are in term 3 at school, and unfortunately harry is still in his wheelchair. We are going to see the surgeon on Friday so hopefully he will have good news for us and those bones will have started to heal. Harry has been really good about being in the chair, but will be great for him to be up and walking again. He has been seeing a healer in Rockingham, who he likes seeing and chats to him about things, so hopefully things will have worked there.
We are also going back to have a look at his hearing aids. He doesn't wear them as he says they are uncomfortable, but he is definitely mishearing things. So hopefully they will find an alternative that is more comfortable.
Having been in the chair again for a few weeks, Harry has decided to start watching what he is eating. It is great to see him eating healthily and actually thinking about what he is eating. Hopefully then when he starts walking that extra bit of weight will drop off.
We still haven't finalised the jet ski, but apparently darren and I have to do our skippers ticket before they will put the order in. We are going to do this in September, and hopefully then we will have the jet ski in the next school holidays or when the weather starts to warm up.
Jurien Bay was a nice break in the holidays. It is about a 2 1/2 hour drive from Perth and we stayed in the Ronald McDonald Chalets. Mum and Dad also came up for a few days which helped to entertain the kids. We did a bit of fishing, went to the pinnacles and then we did some four wheel driving. The kids loved this until we got ourselves a bit bogged, but luckily dad is an expert, and we let the tyre pressures down and off we went.
We saw the skydive centre and checked out the accomodation that people will be staying in over the weekend. Can't believe it is only four weeks away. Sandrinos restaurant which is owned by our friends in Fremantle is holding a dinner to raise money for the skydive, so looking forward to that. We have approximately 40 people jumping at the moment, so now we just have to raise some money.
On the family side of things : Cousin Billy is now a Dad and cousin Katie is expecting twins in January! So all should be busy there.
Nanny Pat has now decided to come to Perth for christmas which should be nice. We have booked to go back to Jurien Bay for a week which should be nice and we will take Nan with us. I did tell her tonight that if she upsets me before then she just won't be able to come!! We have also booked a weekend in bunbury so that should keep us busy over the school holidays.
Ellie is doing well at school and is now reading chapter books which she is particularly happy about. We asked her the other day if was the best reader in the class, and she thought about it for a second and said 'no, third best!'
I went to the naturopath the other day to get my metabolism checked and found out that pretty much everything in my body is out of whack. Hormones are all over the place and my thyroid is also underactive. Yippee, so there is a reason why I haven't been able to lose weight. She also explained that my stress levels were so high that if a lion walked through the door I wouldn't even react! So only a few days in and I am already feeling a bit better and calmer.
Darrens back is giving him grief. He did a lot of painting for a friend and this has obviously aggrivated it. He is going to the chiro, and hope that this done something.
Not long now till the rugby starts, so let's hope England does well as they could do with a bit of a boost after all the recent carry on over there.
Will let you know how we get on after the appointment on Friday.
Ciao for now xx

The school holidays are here!

Nearly 2 weeks after the operation and things are going ok. Harry has adapted to being in the wheelchair really well all things considered. I think it is me who gets more frustrated, as it takes longer to get anywhere and you can't just jump in the car and pop out for a minute!!
Harry had an interview at CBC on Thursday and was offered a place, so he is pleased about that. Then on Saturday we went and saw the jet ski he is going to be getting from Make A Wish. He won't be getting it yet, and will try and put it off till the weather is a bit warmer but am sure it will bring hours of fun when we go down to the river.
The school holidays started on Friday and Ellie is at her friends Jessica's for a sleepover tonight. We haven't got much planned for this week, although tomorrow we are back in hospital for harrys check up. They are probably going to put a fibreglass cast on but would be so much better if he could have a removable one as we could then shower him more easily.
Going to Jurien Bay at the weekend, so will be checking out the skydive centre and the accomodation that we will be staying in for the weekend.
Only a short post as got to do a bit of work before I go to bed.
Take care, and have a good week. xx

Finally back at home!

Well our night stay turned into a 3 night stay, but finally we are home. Harry got out of bed on Thursday but then was a bit sick, so until physio signed us off we had to stay. Harry has done really well and has had no painkillers today. He is in the wheelchair all the time, and managing it quite well. Even though he feels like he is back to square one with not being able to walk, at least the arm isn't in a sling this time.
I must admit the call of 'mum' every time he needs anything, is going to test my patience, so I better make the most of my freedom whilst he is at school this week.
We went to see Mr Poppers penguins today which was very funny, and definitely worth a visit. If you go before Wednesday next week then it is only $10 per person at Hoyts garden city.
Whilst I was in hospital I was chatting to the nurses and they were talking about how in the new childrens hospital there are going to be far more single rooms for the children. I think it is wrong as the children like to have company. For the children who are in hospital long term they need to socialise and spend time with other children. I understand that it is sometimes hard for parents to sleep when on the ward, but that is life, and if you need to drink lots of coffee. The hardest room on Ward 3B was room 7 which had 4 beds, but there was no where for the parents to sleep. If the room wasn't full we were allowed to sleep in the extra beds, but it was hard when the room was full. As long as the rooms have a recliner chair then you can get some sleep, so that would be my recommendation. Rooms of up to 4 children are fine, but maybe they need to try and put children of the same age in the room.
The kids faces used to light up when they were with their friends in the same room, and I remember harry used to get very grumpy if the room was full and he was put on his own.
So let's hope someone listens to the parents before they make their final decision on the hospital.
Good news, the doctors were quite definite that the girl who was on the ward with us, had a bone infection. They hadn't done the biopsy but seemed quite sure. So I was really pleased for them.
One more week of school, and then 2 weeks school holidays. The second week we are off to Jurien Bay to check out the accomodation for the sky dive. Also the skydive hoodies should be available shortly, so if you want a hoodie then let me know. We are also organising a dinner at Sandrinos on September 1st, to raise money for the Telethon Adventurers.
Fingers crossed that this last operation will work, and that the bone in Harrys ankle will heal together.
Enjoy the rest of your weekend. xx

Day one after surgery

Well my one pair of knickers didn't work as we are still here!! Harry had a good night sleep. He woke regularly, but the first time he woke I was obviously fast asleep and he threw teddy at my head. I jumped out the chair and then said 'did you throw a teddy at my head?'He said 'yes, I called you for 5 minutes (which probably meant 5 seconds) and you didn't wake up! He is so lucky I love him. He still isn't feeling 100 percent, but he hasn't been sick since last night. Had a healthy breakfast of maltesers, turkish delight and a half piece of toast!
Harry hasn't managed to get out of bed and his hip area where they took the bone is very sore, swollen and will have a bruise the size of his hand probably.
Sam (one of the doctors) came up and chatted to Harry about not putting weight on the leg, so let's hope this time it all fuses and the graft does its job.
Popped down to 3B for my shower, as there is nowhere up here that I have found. Saw a few familiar faces and one of the lovely nurses is pregnant, which is exciting news.
Popped home and did a quick bit of work with all the visa points changing, I had to lodge a few before the end of the month.
Met a lady in the kitchen tonight and she had a little baby in her arms and we started to chat. I asked her why she was in here and it turns out her 9 year old daughter has a mark on her pelvis bone and they are trying to establish what it is. She said 'hopefully it is just an infection'. I couldn't get out of there quick enough as didn't want her to ask about Harry as that is how our journey started. Even though it seems no-one up there is listening, I hope with all my heart that it is an infection and not the dreaded C that is ruining so many lives.
Keep your fingers crossed this ankle bone fuses together. For those of you who have been on the ward, I can't write the full words as dad will tell me off for swearing, but FYC!
Remember yesterday is history, tomorrow is a mystery, today is a gift! LIFE IS A GIFT!

Surgery 6

Well the surgery has been done. The ankle has been re-done and they have taken some bone from his pelvis. They also removed a screw that was showing under his skin in the shoulder. Unfortunately he is not allowed to weight bear for 6 weeks, and has his leg in a plaster. I think they will change the one he has on in 10 days and put a removable one on, but he is still not happy.
The operation lasted nearly 3 hours and not the hour they suggested. I went into recovery and he kept shouting that his leg hurt. He pressed the PCA every 5 minutes and then would nod off. When we got to the ward, we realised why the pain wasn't going - they hadn't connected the PCA, so the pain medicine was pouring out onto the floor!
he has been sick all day since the operation and even though I bought one change of underwear in the hope we would be home tomorrow, I don't think it will work.
Harry just woke up and asked me if the surgeon had been in, I said 'no, why!' to which he replied ' I think I need to talk to him!'
I am hoping this will be our last stay at PMH. Ward 6a makes you appreciate 3B. Even though you would rather be here for treatment than on ward 3B, if you see what I mean.
Thanks for all the texts, and well wishes. Have shown them to Harry so he knows he is loved.
Will update you again soon.

A year ago today!

I can't actually believe that this nightmare journey began a year ago. A year ago the doctor told us that he thought Harry had Osteosarcoma but we still had to do the biopsy. I didn't even know what Osteo was, and wish that I still didn't. I remember telling everyone that the man must be a total idiot if he thought Harry had bone cancer as he didn't even look sick, but it turned out that he was right and he is also one of the best surgeons in Perth!
Since I started this post (and I didn't get very far) harry has now had his 3 months scan and is still looking good. On Friday 10th he had his CT and bone scan. That night we also had a quiz night happening for the Telethon adventurers, so I asked Kong Kong if he would mind taking Harry there so I could get everything set up. The bone scan and CT were done, and we then had to wait till Wednesday to get the results. A friend of mine asked if I was nervous, and the answer was 'NO, Harry is going to be fine and if not then you can come and pick me up off the floor!' I suppose by Tuesday evening I was getting a little nervous and think I spent the whole evening with tears streaming down my face - but of course only once the children had gone to bed. We went into hospital on Wednesday and got there at 9.30 in time for our appointment and at 10.15 one of the ward doctors came and called 'Harry O'Neill', to which he replied, 'about time!' Gotta love the kids honesty! The doctor was new, and a nice guy, and he actually laughed and said he agreed. The oncologists booked appointments from 9.30 and yet there meeting never finished till at least 10.
All came back as prayed for, and we now have 3 months before we have to go back which will be September. The doctor mentioned this, so I had to ask for tests in a certain week as September is a busy month, and we have sky dives and all sorts happening. Funnily enough the appointments have already come through in exactly the week I wanted. What is going on here? mmmm... I am sure it will be changed before we get there or maybe not!!
The bone scan showed no signs of healing still in the ankle, so the operation for that is booked on the 28th June. According to the hospital information we were sent, we should only be in there a day. Amazing really, remove a few screws, possibly take some bone from his pelvis and then send you home! I am not complaining though as we will be on ward 6, and no offence but I hate this ward. Isn't it funny, even though the oncology ward is the last ward you would want your child to be on, it is probably the nicest one in the hospital.
Harry is taking it all in his stride, but I am sure the anger will kick in just before as he won't want to go in. I dont' blame him, who would, so broad shoulders on and I will just take whatever he throws my way.
The quiz night was a great night and we raised approx $10,000 for the Telethon Adventurers. Now it is on to the next event, the Jurien Bay skydive. Sept 17th and 18th. So if it is on your bucket list there is no excuse.... unless you are scared!!!!
If you are not brave (or mad) enough to jump, then you can always be a part of the event, by donating money to someone who is jumping. If you are interested in jumping or donating then please email me on vic@suremigration.com
The photos at the top are a day we spent with camp quality on the power boats. If you were 10 years and older you got to drive on your own, so Harry went off, although a bit nervous, and then right at the end I got to have a go. It was great fun, and will make sure I get my name on the board earlier next time! The kids are also going to see Kung Fu Panda 2 with them this weekend, which they are looking forward to.
I have decided that I am going to get the blog printed after Harrys operation. I might continue adding to the blog after this to keep you all updated, but if you want to get your name in the book, please send Harry a message.
Until the next time, ciao for now.

One week to go and then we have our 3 months post treatment scans

Wow, nearly 3 months since we have been on Ward 3B as an inpatient and now it is time for more scans. Harry is doing really well, and has been at school full time since we finished treatment. He still gets tired quicker than Ellie (but she is an energizer bunny) but you can see him getting back to his old self more as the time goes on. His hair is growing back and looks as if it is going to have a wave in it.
They have decided that they are going to re-operate on his ankle as there is no healing in the bone. On the day they are going to decide if they need to do a bone graft from his pelvis and they are also going to look at the arm as there could be a screw they need to remove. The surgeon thinks we will only be in hospital for a night or two, so hopefully he is right as we will be on Ward 6 in one of those delightful 6 bedded rooms!! Yippee, can't wait.
This journey is such a roller coaster, and the worst part is that even after treatment the journey is definitely not over. Whilst treatment is going on, you just get in this tunnel and keep going as best you can so that you can get out of the other end, but what happens once you are out of the tunnel? Reality starts to hit home. Why Harry? Why any child on 3B? I know that Harry is with me, and many parents of Ward 3B have lost their children, but I still find it hard when faced with things that he now can't do because of his operation. We went to look at a school the other day for Year 8, and on one of the pages there was a picture of a child on a flying fox at a Camp. I know it is only a flying fox, but I still had to stop myself from crying because it is something he can't do.
Luckily Harry is stronger than most of us and he carries on and doesn't complain.
The quiz night is a week away and we have been given lots of prizes so hopefully it will be a good night, and have lots of tables booked.
Sunday night we are off to the C Restaurant as a Telethon Adventurer fundraiser. I am sure it will be a great night and all Matt Turners hard work will pay off.
Have a great weekend everyone and enjoy the long weekend for those of you in Perth.

Club Med was Fantastic

Well the holiday was everything we were hoping for. 20 years since we were last in Club Med and it won't be 20 years till we go again. We all had a fantastic time, and are already talking about when we can go back.
There were so many things to do and we certainly filled our days with activities. Kayaking, Snorkelling, Archery, trapeze, golf, darts, ping pong, water aerobics, and fantastic shows every night. The only downside was that there was so much to do we couldn't get Ellie to bed!

Harry is looking really well at the moment and is no longer using the wheelchair. Unfortunately though the leg bone is not healing as planned and he is going to have to have another operation on his leg. We saw the surgeon today and on Friday I will see him to find out when we are going to book the operation for. It is only a little operation compared to what he has already been through, but it would have been nice for him if he could have got away without it.

His Make a Wish still hasn't been decided upon as the first wish to go to Japan is no longer allowed due to the recent natural disaster. So then Harry asked for a Jet Ski. The surgeon said it would be fine as I had checked with him before we put the wish in. Harrys oncologist however said 'no, as it is too dangerous'! So Harry is now going to ask for a trip to Club Med, and hopefully this one won't be turned down or not allowed.

The quiz night is coming along well and hopefully we are going to sell all 30 tables, as long as everyone gets their act together and pays for their tables. We have had lots of prizes donated, from many generous companies around. I do have to admit that it is very difficult when people say 'no' to donating especially as The Adventurers are close to my heart, but it always means more when people are so ready to donate.

The Thermomix sales are going well and keeping me busy as well. I really wouldn't know what to do if I wasn't running around like a headless chicken and sitting doing work, updating the blog or facebooking at 1am in the morning. I have also booked the sky dive for September 17th and 18th in Jurien Bay. Can't wait it should be great fun and I reckon this time we are going to have even more people than when we jumped in York.

Anyway I just wanted to update the blog quickly and I really do have to go and get some sleep now as it is 1.20 am.

Will let you know when we know more about Harrys operation. xx

How time flies

I can't believe the last time I wrote the blog it was 4 weeks till Bali and now it is only 3 sleeps. Woohooooo! Club Med here we come. Have to say a huge thanks to Mum and Dad as without you we wouldn't be going. Harry and Ellie are so excited. They have been singing 'we're going to bali, we're going to bali' every morning. I have managed to stop them packing up until now and have promised them we can do this on Friday.

Life has been really busy since I last wrote. Harry has been to see orthopaedics and they are still talking about another operation if the bone in the leg doesn't start to heal. We go back to see them after Bali and when Harry has done the NAPLAN test at school. Since the surgeon said he might have to have another operation Harry has walked and not used the wheelchair. Hopefully this will help the bone to heal and if it doesn't then surgery is the only option.

Harry also received a courage award from the Lions charity which was a nice day, and there were a number of children there from Ward 3B. Harry then got to be in the Melville times last week with the other people who received courage awards from the area.

We have also been to Australian Hearing for further testing into Harrys hearing. There were a couple of options. One being an FM system which the teacher can use to talk to him and which cuts out the background noise. The other is just a plain hearing aid. The FM which the government provides is a huge headphone system and wires, which obviously Harry won't wear, and the other option costs nearly $2000. So we looked at just the basic hearing aid, and then if need be he can look at the FM system. He has been to school all term without it and seems to be ok, so I suppose it is a case of wait and see.

Ellie is doing ok. She had her first school assembly, and she also read in the Anzac assembly and did really well. She is still totally obsessed with making things and we have boxes cut up everywhere and pieces of paper all over the house.

My life has been crazy busy since we got out of hospital. Work has started to pick up which is good, and keeping me busy. I have also started selling 'thermomixes' and done all my training. It was quite an intense week as it was every other evening and then I had a couple of demo's and sold my first couple of Thermo's. No more demo's now till after Easter, and then we will see if we can get a few more sold. I am really enjoying using mine and have made lots of things which I would never have tried before. We did Anzacs for school, soups, dips, sorbets, risottos, pastas, and once we get back from bali I am going to look at using the varoma dish and get steaming.

We have booked a quiz night to raise money for the Telethon Adventurers, and it is going to be held on June 10th, at the East Fremantle Footie Club. Tickets are $20 each and we are making up tables of 10. Already been donated a few prizes and again once we get back from Bali, I will be on the hunt for prizes. Anyone who wants to attend the quiz night or donate a prize, can 'e' mail me on vic@suremigration.com

The next sky dive is going to be held on September 17th at Jurien Bay and possibly the 18th as well depending on the number of people who want to jump. Anyone who wants to jump is encouraged to raise $1000 in sponsorship so we can share the load. Again if you are interested then email me on vic@suremigration.com

I am sure there are many other things that I have forgotten, but for now I hope you all have a great Easter and will have a drink or two for you all when in Bali!!

A week and half after the all clear!

Well after we got the all clear on Wednesday we did a bit of celebrating over the next 10 days. On Friday we all went to Point Walter with everyone and had a few drinks. We took the kayak down and the kids had a great time in it. Then on Saturday we had the kids school disco. I didn’t want to go but the kids kept insisting so we went.
Sunday morning Ellie had a day trip to the zoo with camp quality which she really enjoyed and then on the afternoon I took Harry to Laras party.
Wednesday was another busy day with an orthopaedic appointment, and it was also Waynes last day. Harrys ankle is still showing no signs of any bone healing so when we get back from bali they are going to look at it and see if he needs another operation. At this point they are thinking he will but let’s see what happens. Harry is walking fully without the crutch now round the house and has been out a few times without even asking about the crutch or the chair which is great news. Maybe the thought of another operation has spurred him on.
We had a bbq on Wednesday as Wayne was leaving and Uncle John popped in on his way home from kiting (not fighting as Wayne thought he said on the phone one day) and had a birthday drink as he turned 60! Billy also popped in and had some good news for us, which I will tell you later when I check if I am allowed to say it yet! Wayne left very early on Thursday morning and between going to bed late, the dog and the kids, Darren getting up to go to the airport I had very little sleep. Had to be up at 6.45 as today was the day of the Red Kite Fundraiser and my speech at the fashion show. It all went really well, considering I was petrified before I got up there, and I also managed to get through it without crying. Hopefully Red Kite made some money from the fundraiser which will go towards children living with cancer.
We then proceeded to drink quite quickly and I fell asleep about 6pm. I woke a few times in the night and kept thinking ‘wow I really can’t remember anything from about 6pm’ and then I found out off Ellie that it was because I had been asleep since 6! Love how the kids now tell me what I did after a few drinks! Obviously not going to win ‘Mother of the year!’
Friday I had a thermomix party and have decided to give it a go and see if I can sell them. I have sold everything else so why not! So anyone who is thinking of buying one, let me know and maybe we can arrange a demo or you can come to a demo I am doing. Harry is so excited as we can make lemon juice in minutes and without all the mess. Lets just hope our lemon tree starts producing more lemons!
Hearing test tomorrow – which will be good if they can do something as he does talk particularly quickly at the moment. Then hopefully no more test till June – apart from looking at his ankle again in May!
Bali is only now 4 weeks away and I can’t wait. Hopefully a good time will be had by all.
Sunday Harry is getting an award from the Lions Club for bravery I think, so that should be good for him. There are a number of children going off the ward as well so will be nice to catch up with them.
For now that is all our news. It is so nice to be home, and I really wonder how I fit hospital into my life as every day is just so busy!
Have a great week xx

Given the all clear!

Well what a day, Harry has been given the all clear!

We didn't end up seeing our oncologist as apparently she was on the ward and busy. She knew this as we had spoken about it when we were looking to book the appointment but came in at 10am and was then too busy to see us! I was furious to say the least, but will not dwell on the negative, but on the positive that Harry has been given the all clear.

The only thing that seems to be affected at the moment is his hearing. We have got an appt to see the ear, nose and throat department in a week or so, so hopefully they can do something there.

Make a wish rang today and unfortunately with the natural disaster in Japan, we will not be able to go there. The options are to wait for 6 months and see what happens, or chose another option, so will chat to Harry and see what the best thing to do is.

Celebrated with some good friends of mine yesterday and had a sore head this morning, but hey if you can't have a drink or seven on a day like today then when can you have a drink!!

Thanks again for everyones support!! Enjoy the rest of the week and have a great weekend.

Life is a gift!