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.