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!!