Day 7 after surgery and DIAMOND won the sports carnival

A week on and Harry has come so far. I spent last night at home as Darren did the night shift. Then got to see Ellie do her race and the tabloids this morning. Have to say that she was a bit teary but think that at this point in her life things are mixed up and she is entitled to be.
Kong Kong had sat with Harry this morning whilst Darren and I were at sports day. Professor Woods came in and has suggested they will change the cast on the leg to a walking one, so hopefully he will be able to use a crutch. They also took the drains out which hurt a bit but he didn't have any more pain medication. Professor Woods also suggested there is no reason he shouldn't be up and out of bed, so he has been sitting in the chair and has also been in the wheelchair. He is very careful which is good, so hopefully I won't find him doing wheelies around the place.
As I was at school, he rang me and sounded like he was crying. He asked when I would be back, as they had taken the drains out and he had lost some blood and needed a transfusion. My heart nearly stopped as you hate not being there when something happens, and then he says 'ha ha joking!' So at least we know that he still has a sick sense of humour!
We are still looking to be out next week, so fingers crossed. We are aiming for Wednesday as Ellie has her assembly on Thursday, and I think by then I will be well and truly done.
Have a good weekend and if anyone is passing PMH a mocha or a latte is always welcome. xx

Day 6 - well I think it is Day 6 post surgery!!

The 3B flag that is being taken up Mont Blanc, with the kids hand prints on from Ward 3B.



A family photo from Fathers Day.



Thursday afternoon and we have had a pretty uneventful day. The drains are still in as anticipated, but might be out tomorrow. Harry had a good nights sleep and a bit of pain relief this morning, but all in all he is doing pretty well. At this stage I am going home tonight, and will come back in hospital after Ellies running race and mini sports day. Must say I am looking forward to sleeping in a bed and not this chair.
Our room mate went for surgery about 1am and when we woke up this morning she wasn't there. Apparently they thought they were going to have 2 emergency admissions so cleared the bed and sent her to another ward and then the emergencies didn't appear.
We now have another boy in the ward who will be here till tomorrow. They arrived here at lunch time after a 6 hour drive from somewhere. Even though we are in a public hospital we have been admitted as private patients. This basically means that our private health fund give money towards to the hospital and we get $30 of vouchers every 2 and a half days to spend in the canteen and the shop. Anyway the private patient officer came in and I think gave our vouchers to the people in the bed next to us, so will have to wait until we get our new $30 of vouchers. She was talking about the delay etc and they had only just arrived so think they were meant for us, so will wait and see.
The nurse is currently putting harrys antibiotics in through a spring fusor and Harry was just telling her the syringe wouldn't fit. She kept saying I am sure it will, and then 2 seconds later, she said "Harry you are exactly right". The syringe didn't fit!!
Lisa and Abs came in and bought me a lovely coffee and some choc chip cupcakes, which were yum! Do you notice my life seems to revolve around food??
Dr Maryanne popped up and visited and the plan is for chemo to start on the Monday that school goes back on the Tuesday. So the 11th October. This is not set in stone as we are learning, every day brings a different answer, but for the moment this is the plan. It will be good if this happens as it least it means that we will get the school holidays at home and a bit of time out for Harry.
After being in hospital for a few days and in a room on his own, Harry said that he is never going to jail as it would be very boring. So that could be one good thing that has come out of this!!
Ellie got up very early this morning and asked Darren if she was allowed to watch tv as Nanny had said she couldn't watch tv before school. Darren said 'well if you get dressed then you can watch it!' So by 6.55 she was washed, dressed and ready for school. Shirley got up at 7, and Darren said she was watching tv and when she walked in she was all dressed and ready! Think there is a power struggle going on!!
Better go for now, as they are on their way in and I will be on the way out!!

PS Thanks to everyone who has commented on the blog. It is good to hear that it is informative and keeping you all up-to-date.

Now it is Day Five!

Scott and Harry


The drain which was removed from the leg.


The leg scar and you can see where the drain is before it was removed in the photo above.


So another day nearer to our release from PMH. Our single room has now changed status to a shared room and there is a girl in the bed next to Harry who has broken both her arms. Ouch.
Harry has done really well today and has had one of the drains removed. The doctor was so gentle and Harry didn't even realise that the line has come out. So we have his number on speed dial for when the drains in his arm come out. They have suggested tomorrow for the removal of the arm drains but I think it will be more like Friday or even later depending on when they stop draining.
We had a few more visitors today. Kylie - the car even entertained Kong Kong when he came up this evening. Jane - who bought homemade choccies. Also Liz and Scott came up and bought harry some goodies to keep him entertained. Love the book and have had everyone trying to hit the bat and ball! I am really trying to resist those biscuits but it is hard.
Nanny Shirley, Darren and Ellie came in although Ellie got a bit upset at the end. It is far harder in a shared room as there is not so much space, but I won't keep complaining as there is nothing we can do about it. The nurses have been lovely and even putting up with Harrys cheekiness! They think it is cute, but I am not so sure!!
Harry is no longer on a huge concoction of drugs and is now taking pain killers orally. So will see how that goes. He had a couple of pain scores of 3 and 4 today but I have never heard above a 4 yet!
Hopefully there is talk of us being out next week and the earlier the better is all I can say. Harry is doing really well and is moving more and more in the bed, which is great and puts us one step closer to getting out of here.
Then I suppose we just have to wait and see what the next phase of treatment has in store for us.
Harry has been in bed for nearly a week now and is really looking forward to getting in that wheel chair. How your life changes and puts a new perspective on things.
I forgot to mention Pam Perry yesterday who popped in with Henry Warmheart. I have had to microwave that teddy a few times now and he is being well cuddled.
The frazzles were lovely Sarah, and we just have the one packet left to share!!
I was having a read of harrys file earlier and it was making me laugh as the nurse who was here when we first arrived from ICU wrote I kept complaining about the heat and turning it down. The best part was after we had been here for over 24 hours, she then came and asked the surgeon what surgery harry had actually had. Do you think I can write in the file? If so, I will go write ' nurse in charge of ward telling me to have heat on to sauna status. Everyone in Charlies who operated on him came in the room and no one complained or even mentioned the temperature, where it was warm but not like this. Then Nurse asks after 24 hours, if the doctor can tell her what surgery harry has had done!'
That is another of my moans for the day, but the good news is that she hasn't been back in the room since, as the plastics team told her it just had to be warm and not too hot.
Just been on facebook and there is a picture of the AHG adventurers who are climbing Mont Blanc and they are holding the 3B flag which has the names and handprints of the kids who are on the Oncology ward at the moment. Brings tears to my eyes, but it really is amazing what they are doing and the money they are raising.
When Ellie came into the hospital I took her down to 3B as it was getting a bit busy in the room and we saw harrys friend Nicola who was having her chemo. She has this beautiful long wig and was wearing it this evening. Ellie in all her innocence said 'Wow your hair has grown back fast!' Out of the mouths of babes. Luckily Nicola and Donna found it amusing and were both laughing and I have to say it was very cute! Bit like the little kids I have heard say to Harry, my Dad shaves his head like yours.

My inspirational quote for the day : as a parent, there are TWO things that you must provide your children. Roots to keep them grounded, and wings so that they may soar.

Take care and good night.

According to plastics today is only day four!!

Sheryl we can see you eating the Sundae!!


I thought I would write an update whilst I am sitting here on my own and Harry is fast asleep. He had a reasonable night, apart from a lot of coughing and then he unhooked his drain, sat bolt up right in bed which he hasn't done for a while and shouted get the nurse!! Everything was fine as we just hooked it back up, but gave me a bit of a fright. His temperature stayed down but he woke this morning and was sick again.

The sickness is due to the pain relief he is getting but they stopped the anti sickness yesterday as he hadn't been sick for a few hours, but hopefully they will keep it up now till he is eating and drinking and not vomitting.

He is a bit grumpy today as sick of being in bed and people constantly coming in and saying 'can you wiggle your toes?' and 'can you make a fist?' Just hoping the fist is all he does for now!! They are meant to be taking down the dressing today so am sure this will be a bit painful, but he can self administer the drugs before hand to make the pain less.

I thought we were on day five but apparently as the operation ended on Friday morning technically today is day four after the operation. So seems I have been ahead of myself for 2 days!

I did have a laugh yesterday as I had lost a bed sheet for about the past 6 weeks and have been looking everywhere for it and kept saying 'where has it gone?' So Shirley rings me yesterday and says she found it behind the couch!! Well I wonder how much dust is behind there as hadn't even looked there for ages! One thing you can't acuse me of doing is wasting my life on housework.

Will go for now... and hopefully after my big boy wakes he will be happier.

Back again, well the afternoon was very busy. Plastics came in and took the bandage off the arm and we have seen Harrys scar. The drain in the leg might come out tomorrow but they are going to leave the one in the arm till Friday. Nicole and Maddy popped in on their way home from 3B. Darren and Nanny Shirley came in and then they had to go and pick Ellie up as she had been at dance and then Siennas house. Then Linda, Sam and Adam arrived with balloons which are just great. Harry was just having the dressing put back on when they arrived. Then Jodie, Sheryl and the boys all popped in. They ended up staying for dinner - well Jodie went and got Hungry Jacks for the boys and this is the first time harry has eaten since the operation which was fantastic.

Radio Lollipop came by and we all had a game of Uno. Although be warned never play next to Jye as he is pretty mean!!

Dad then came up and cooked some fish for our dinner which was lovely, whilst harry had a little sleep. We are now both awake and watching television but hopefully he will go back to sleep soon.

Thanks to Emma who has been walking Sam for me. At least that is one less thing to worry about.

Ciao for now.....

Day four after operation - yesterday was only really day three

Boys and their toys!!

So today is actually day four after the operation. Darren did the night shift last night and I got to go home and sleep in my own bed, which was lovely. I took Ellie to school this morning which she was happy with.
There was talk of giving Harry an anti sickness medicine which normally makes him sleep for hours. Typical I thought, Darren stays and harry sleeps, but not this time! During the night Harry had a temperature, and low blood pressure and then they did a chest x-ray. All was ok but now he is on antibiotics. The broviac is working now after Vicki from 3B sorted it out, which is great, and currently we are just left with the drains in and the broviac is currently hooked up but no more attachments.
The catheter came out this morning after a long night, as it wasn't working properly. This is great as the less things he has attached the better, each attachment is a risk of infection. So all in all the boys didn't get much sleep!
We saw one of the surgeons today who has said that the pathology lab have said that they can't give any definite figures but at this stage things are looking good. So fingers crossed we have a good result from the lab. Harrys leg is currently in a back slab with a boring brown bandage round it at the moment. He was a bit disappointed the other day as he said how come he didn't get to pick the colour and got this boring old thing. So some good news for Harry - he will get another cast before we go and will get to pick the colour. If I was a betting woman I would bet on 'green'!! If anyone thinks differently I will put a $50 in it??
Tomorrow we are seeing the plastics man and the drain from the arms and leg might be coming out shortly. Which will be good, as we can hopefully then try and move him.
Harry has had the most incredible surgery and if he agrees I might scan and post his x-ray on here, so you can see what has been done. He is asked what is pain score is out of 10 and I haven't heard him say above 3. He is using his pain control medicine only once an hour and if asleep obviously not at all. He hasn't really complained, although he is fed up with being in bed which is understandable, and we have still seen him laugh over the last few days. Especially when the nurse told him his mum off, but mum won in the end!! Don't mess with a stressed out parent when their child is in hospital, well not me anyway!!
It is funny how things happen and how they affect you. When you are dealt a bum card like this, your only option is to deal with it. Those around harry can't crumble as he needs us to be strong and his strength is what keeps us going. For those who saw me last week you will know that it was a bad week. I cried more tears than I thought possible and slept very little, but to see what he has gone through and how he strong he is being well what else can you do but pull yourself together.
Being with him keeps me positive, and makes me realise that you really shoudn't sweat the small stuff. There is no point, as one day some 'big stuff' might slap you in the face and then you just have to cope. There is also the option that you just crumble and don't cope, but really it won't do anyone any good. Crying is fine and what you need to do to get you through. Shouting is great as it makes you feel better, and boxing is even better if you can find the time to do it!! You also have to be positive and drink lots of coffee to get you through. Loud music in the car helps as well, as this is normally one place where I cry!
On Harrys journey we have learnt a lot and met some lovely people on the ward, none of whom deserve this but all of whom are coping. For all the other people we know and have been there to help and offer support it has been great. There is a team of people climbing Mont Blanc and raising money for Ward 3B, and I would like to wish them all the best. http://www.themontblancproject2010.com/ Their aim is to raise a million dollars, and I have been sitting her for the past couple of weeks, thinking of something to do so we can raise some money and put this towards the oncology ward at PMH. Any ideas?
Once we have the results from pathology and our little champion has recovered from his operation, they are going to hit with more chemo. Actually he won't even have recovered as apparently the leg can't bear any weight for 6 weeks and arm will be in the sling for up to 3 months, but chemo must go on! Our journey is still only in its early days and we have a long road ahead as the chemo could go on for a while more, but with all the help and support around us we will get through it.
To all those who have sent messages and are thinking of us - it means a lot. Keep praying for Harry in those prayer circles.
The picture of the mini moke is darren and harrys new toy. This is their new hobby and they are going to be doing it up. So if you see this little mini moke flying down to the beach or point walter it is us!! (well maybe them and I will be in the aircon'd Honda behind!)
Love to all, and right now I am praying for a restful night. xxxx
Today I have learnt that not every pee bottle weighs 40 gms but some can weigh 41 or even 43!!

Day four after operation

Ella fanning Harry as he was very hot!!

What a night. Poor harry was pretty sick in the night and is currently catching up on some sleep. The room was very warm which didn't help, but luckily they have told us we can turn it down. So we are no longer sitting in the sauna that we were in last night.
Ellie is still with Aunty Sarah, and Darren is doing the night shift tonight. We will go home about 6 and then I will do the drop off in the morning.
Slowly the different lines and things are coming out of harry. The drains from his wounds will be there till Tuesday when the plastics man will look at his arm and check the wound.
He had the most amazing surgery and when the plastic surgeon came in this morning and asked Harry if he had any pain, he said 'yes my right ankle!' Which I suppose is a good sign that all the painkillers are working as it was the left shoulder and leg they have operated on.
Visitors are more than welcome, but for the next few days it might be an idea to just send a quick text to see how he is going. Thanks to Ann for bringing Ella up to see Harry.
I suppose I should be taking this opportunity to catch up on my book club book, but really I would rather get some sleep. (then again I will probably just sit here and do neither!!)

Back at PMH

Well they finally kicked us out of ICU and we are back in PMH - ward 6A - and in a side room. I have to say a huge thank you to all at Charlies. The staff were fantastic and I am so glad that we were there after the operation, as Harry had his own nurse (Paul, Ben, Kelly and Sam - you were great). It also meant that I got to sleep last night as he also felt happy knowing someone was with him all the time. Everyone involved in the operation has been to check on him and more than once. So thanks very much.

We saw a few x-rays of the shoulder after the operation and it is incredible. Screws and pins everywhere. Harry asked if he could take some photos of the operation as he is doing a scrap book of his journey and apparently Irene took some which they are going to give us. So that should be pretty amazing to see. Although not sure I want to see what has come out, just lots of people busy working will be enough for me.

Harry finally had something to eat today but he has also been sick a few times. The room has been warmed up as apparently this is good for his circulation although it certainly wasn't like this in ICU. It is so warm that he feels sick and isn't helping his mood. I think by the morning he might be requesting the ambulance to come back and pick us up.

We were bought here from Charlies at 5.30 pm this evening and got a ride in the ambulance. Ellie and I also got to go in the ambulance which Ellie was really pleased about. On the way this P plate driver in a white ute, cut right in front of the ambulance and then decided to turn left. The ambulance man wasn't very happy as he had to swerve and gave him a huge beep. Apparently this hurt harrys leg, so if anyone saw this Ute then let us know as Harry wants to get him.

Ellie is at Aunty Sarahs and having a sleep over. Darren is staying tomorrow night and I will go home as we might be here for 2 weeks. I said to Ellie I would come home tomorrow and she said 'it is ok mummy if you have to be with harry I understand!' Bless her!

Going to go and get some sleep for now. Until the next time..................