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