Not the result we were looking for

Dr Angela from Ward 3B rang me with Harrys pathology results today, and although the tumour has responded to the chemo the result was not what we had hoped for. A good response means that we needed a 90% necrosis (death of the cancer) but we only got 60%. This means that in terms of what happens next we will continue on the study but not the good response arm but the poor response arm.
What can I say............well right now there is nothing as no-one is listening.

Home after the surgery

We made it. Ellie had her assembly today and we were aiming to be home for this and were allowed to go home on Wednesday, so we made it. So we are now drain free, and painkiller free and Harry is slowly getting used to the wheelchair. He did ask yesterday if we had any extra paint so we can touch the walls up after he is out of the chair!

Ellie had her assembly today and we were very proud of her. She did a great job and was very clear when she spoke. Both pre-primary classes did a great job.

We headed off to Garden City this morning and it was good to be out. With Harry in the wheel chair and the leg in a plaster and arm in a sling, you can imagine we had some funny looks. You would think that with the bald head, people would think before speaking. We went and had some lunch and one of the cleaners asked Harry what he had done? He didn't say much and just carried on. Whilst we were eating he mentioned about the lady asking and I said that if people ask you what is wrong and you don't want to talk about it, say 'I have cancer' and they will shut up.

Then we head off and Harry wants an ice-cream. Another lady asks what Harry has done? I said he had cancer, but this didn't stop her. She said she was sorry, then asked what type of cancer, if he was having treatment and where. So at this stage Harry is just smiling at me. The lady then says 'Cancer....... a disease that kills!' Well at this point I just had to say 'have a nice day and walk off! Harry turns to me and said 'Mum I thought you said if you told people I had cancer they would shut up' and he starts to laugh. Well Harry some people are even more stupid than I thought. If nothing else I have to thank the lady as it gave us a big laugh.

Paula, Tyler and Braden came over and Jo and Matt and Tim, also popped over after school which was nice.

Then my hairdresser, Gio, popped over with Matilda. We had just been talking about how small Perth is, when it turns out that Gio knows the wife of the nurse, Ben, who looked after us in ICU (she cuts her hair). Harry doesn't remember him as he was asleep for most of his shift, but he was the one who woke him up. I still can't believe it.

Last day of term tomorrow and then we have two weeks of school holidays. Have a great holiday.

Take care, and be good. xx

Day 11 after surgery

Chloe, Fletcher, Denyse and Harry

Chloe, Fletcher and Harry


How bored is Harry making mountains out of the wee bottles!

Stocking up for the night!
6pm on Tuesday afternoon and we are waiting for Dr Savundra to turn up and say we can go home tomorrow. The nurses are all convinced that it is time we went as Harry zooms up the corridor and is trying to knee cap everyone.
We had a long day yesterday as Harry is getting fed up of being in here and is sick of people telling him what to do. We had a chat with Rebecca on Skype and saw Sofya who is gorgeous - just like her Mum. Also got an 'e' mail off cousin Tom and he is thinking about coming to Perth on October 1st which means he will be here for his birthday.
Cousin Billy has also been in with Salty the dog. Think he is just trying to find a single Nurse and I have seen one who seems quite keen.... so watch this space.
Had a good night last night and Harry is no longer taking any painkillers. The nurse was trying to wake him up last night to give him his pandadol, and for those who have tried to wake Harry up whilst asleep, we know this is no easy task, and this morning I heard her telling the morning staff that maybe we should stop the tablets during the night. They then asked him if he wanted to keep taking the painkillers or if he wanted to have them when needed and he said he would have them when needed. So far he hasn't had any today.
Caught up with Donna off 3B and had a coffee. Then Gillian bought me in a coffee from outside which was lovely. We then saw Billy and Salty, had a bit of a walk round the hospital. Antibiotics every now and then a broviac dressing change and then we had more visitors. Denyse, Fletcher and Chloe came in which really brightened Harry up. We took them down to 3B to show them where we normally live and also saw Ann and David whilst down there.
I also saw one of the oncologists whilst I was down there and we are going to catch up with her once they have the pathology results back. I thought that we had another 7 months of chemo after this surgery as a minimum but today i am feeling over the moon as we could be finished by the end of February. I know that is another 5 months of chemo but I am so excited I could do a dance of joy. We need 95% and more of the cancer in the tumour to have been killed by the chemo which we did before surgery and if this is the case we would be classed as a good responder. If not we would be classed as a bad responder. Depending on whether Harry has responded well or not we will get randomised onto one of 2 options. Both have the option of being finished by the end of February. The good also has a Peg or pleg thingy which is something that you do weekly and goes on for 2 years - I think, and the bad has chemo which is similar to what we had before with an added chemo and goes for nearly 40 weeks. Having said all that we could pull out of the study, but for now we just have to keep the positive thoughts coming and pray that we get a good response to the chemo that has already been done.
Well still waiting for the plastics man and he is 25 minutes late!! Hope he is turning up or he might miss us as we will be gone tomorrow.
Harry is now in the hall and asking the plastics registrar when the surgeon is turning up as we have places to be tomorrow. Gotto love that boy!

Day 9 after surgery

Ended up getting home for another night of sleep which was great, and then spent the morning cleaning the fish tank and a bit of pottering around. Harry doesn't like it when I go, but I think it is more the fact that I am the one person who is here quite constantly and when I go it reminds him even more that he can't go home.
Yesterday was quite quiet. Nanny Jen came in for the afternoon and then in the afternoon Darren, Shirley and Ellie came in with dinner. Ms Jardine also came to visit Harry which was lovely. We have been playing this game called free rice, which asks you educational questions and a company donates rice to a third world country when you answer questions right. So between us we have learnt a bit about the capital cities.
I have to say I am really looking forward to going home now. It is nice to sleep in your own bed after this stinky armchair, and drink tea and coffee out of a mug instead of paper cups. Hopefully we will only have a few more nights here before we get home for a couple of weeks.
Cousin Billy came in and bought his puppy in. No the dog didn't come in the hospital, he left her in the car and they took harry downstairs in the wheelchair.
Harry is lying next to me and he looks very peaceful, well he did until he started saying 'no no no take it, close it'. We had a wonder down to 3B today but didn't see anyone we knew, which is a good thing for everyone who is at home. Harry is still doing very well. Sleeping better, and on less and less painkillers.
I have to say that I keep looking at all things that people are doing which we take for granted and wondering if Harry will be able to do them. As today was so warm there were people riding bikes everywhere and I keep wondering if he will be able to do that. If people swimming comes on the television, I have to turn if off as I start crying without even realising it. I know he will be able to swim but not like before. The emotions that go on are incredible and as a wise friend said the other day 'did no-one tell you there would be days like this!' I feel stronger when I am with Harry but maybe that is because I can let my emotions out more when he is not around, as he doesn't want to see us crying.
Cancer seems to be everywhere and I just wish someone would hurry up and find a cure for this dreaded disease. I am just watching a programme on channel 10 where the mum has been diagnosed with a brain tumour and has only got a short time to live. Ironically the mum is being played by a girl I went to school with in the UK, Lucy Davis.
Still waiting for pathology and tomorrow we should meet up with the oncologist who will tell us what the next stage of this treatment has in store for us. If we go ahead as we have been and stay on the 11th October, then it means we will be home for christmas and the new year all being well. If we end up doing the short version of treatment then we will be finished by the end of May, which at this point in time, seems like a life time away.
Hope to see you all soon, and if you are around in the school holidays then any visitors or distractions would be welcome.
Until tomorrow....
There is a red kite fundraiser on October 21st to see Eat Pray Love, so if anyone is interested please let me know, as we will have to book tickets shortly. $30 per head.

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..................

Surgery is finally over

Well what a day that was. The surgery that was meant to be 8 hours turned out to be nearer 18 hours. The anaethetist stayed from the beginning and finally handed over at midnight. Harry was finally brought up to ICU at 2.40 and we got to see him at about 3.30. Everything seems to have gone ok, and the surgeons are all happy with everything. The scans are all ok and show that everything has gone in the right place and is positioned well.

Harry was finally woken up at about 3pm this afternoon and is doing really well considering what he has just gone through. He is very puffy and swollen on the face and once this goes down he will be looking much better.

The plan is to move us up to PMH tomorrow as long as they have a bed for us and then we should be there for a week. Apparently chemo might not start for about 4 weeks which is great news, and hopefully will give him some time off to recover a bit and generally feel better.

Harry has come out of this with amazing strength. The road ahead will not be easy but he will get through this and we will all be there to help him. It has been very comforting to know that so many people all over the world were thinking of him yesterday. So thanks for your messages and comments on the blog it means a lot to us.

To all the kids who took the time to sigh his card at school thanks. This is a wonderful gift and something for Harry to treasure. He will also decide what to spend the money on but for now it is safely tucked in his bank.

Harry I am so proud of you. You are a true star, and although I am not sure of the reason this has happened, I do believe that your strength of character and determination has you marked out for something wonderful in life.

I love you and Ellie tonnes and tonnes. Stay strong my champ.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

15 hours and still in surgery

Harry is still in surgery, and has been there for 15 hours. We probably have another couple of hours to go. Everything is going ok so far, so fingers crossed it finishes shortly.

Will update you all tomorrow, as by the time he comes out we might be in need of some sleep.

xxxxxxxxxxxxxxxxxxxxxxxxxxxx

The big day

Do you reckon the fashion will catch on?



My gorgeous buddhist monk! Love ya Harry.

Well what can I say but here we are. The dreaded day has arrived. Harry did fantastic this morning. He stayed up late, but there really was no need to send him to bed as he is going to be asleep all day, and got up at 5.30 this morning to get ready and be in the hospital. Just as they were getting him ready, he pulled the blanket over his head and started to cry. Then I had to take him in whilst he went to sleep. I managed to hold it together until I walked out of the room and Harry was fast asleep, but that was the hardest thing I have had to do.

We are now 7 hours in, and haven't sat here the whole time. We had breakfast with mum, dad and mum shirley, and then we went to see Ellie at the zoo. She is there on a school trip and as we might not be home till late or at all, we decided to go and spend some time with her .

The plastics team are about to start so at this point we should be half way. Thanks for all your messages, and thoughts.

Time for coffee and I will be back. xxxxxxxxxxxxxxxxxxx

4 Days to Surgery

Happy Fathers Day to all. Hope everyone had a great day. We spent the afternoon at the Fresh Water Bay Yacht Club at a Mont Blanc fundraiser. A group of 20 people are going to climb Mont Blanc and are raising money for Ward 3B, which is the ward that harry is on. www.themontblancproject2010.com They are going to raise a million dollars which is awesome. We had a lovely day, and we also got to see Maddy - who is a little girl Harry has met on the ward - and all her family.
Nanny Shirley won first prize in the raffle and got an outdoor speaker set, which is just want we needed!! Then when we got home we had a long chat with Katie and Laura on skype and they are both having a great time in Thailand.
On Friday last week we had a pre-operation meeting at Charlie Gardners and met some of the people who are going to be involved in Harrys surgery on Thursday. We also saw a microbiologist who checked Harrys knees out as they were concerned about them with the upcoming operation. For those of you who don't know - he fell over and there was talk of us having to do the part of the surgery to remove the tumour and then finish it off after the next round of chemo as the knees might prevent them taking the bone from the calf. So not only were they talking about doing this surgery once, but then again in a few months time. It just doesn't bear thinking about.
Having said that on a positive note they seemed happy with things, and we have been bathing and cleaning the knees every day in the hope that everything goes ahead as planned. Also shouting 'don't run' every 5 minutes in the hope he doesn't fall over again.
It was quite an informative meeting as we found out that there will be approximately 32 people in the operating theatre during the procedure. Starting with the anaethatist, the orthopaedic team and then the plastics team, and they will all be wearing space suits. They are removing the entire shoulder bone and about 6cm's of his humerus. A bone from the bone bank will be placed in his arm to fill the gap, and then the bone out of this leg (the small one you don't need) will be placed in his arm. Harry is going to have two huge scars, and at this stage will have up to 30% movement in his arm afterwards. They went through all that can go wrong including the fact that he could still lose his arm, but this is only if things go wrong - WHICH THEY WON'T!
The surgery will take 8 hours or more and they will possibly keep him asleep for 24 hours depending on how things go. Once the surgery is over he will be put in ICU for between 24 and 72 hours and then we will be moved back to PMH. Harry will be pleased about this as originally they were going to go take him straight up to PMH, and he was excited about going in an ambulance. At least this way he will be able to remember it.
Harry is allowed one of us to go into the room when they put him to sleep and he has asked if I can go in, but at this point I don't know how I am going to do it. I think maybe I need to cry constantly for the next few days and then I will have no more tears on Thursday as I have to be brave for Harry. Will have to find some strength from somewhere so please send some my way.
If I could have one wish right now.... it would be a cure for cancer so that no-one else ever has to go through this again. I should be past the stage of 'why harry?', but right now it just doesn't seem fair and this all seems completely unfair!
Save some positive vibes and send them Harrys way on Thursday.

The end of the first stage of chemo.

Harry we would just like to say "you are a star!"



Well it has been an interesting week at the Resort. We were admitted on Monday for our final week of Methotrexate before surgery and when we arrived our name was down for one of the isolation rooms. Typical, Harry had a bit of a cold and I had been telling him not to sniff or cough as we would be put in isolation and we were there anyway!! They did then say we could possibly move into Room 7 but as it was full and there is no where for parents to sleep, I suggested we should stay in our own room and he would still be free to walk around the place.
So we think we are in here because the shared room is full, but I find out the nurses think we are in here because there is something in his pooh!! Which i find quite amazing considering he hasn't even had a pooh yet. The week is spent with people thinking we are in isolation but we are not really, however after being in hospital for a few days his cold is far worse and after going to school and needing to use a lot of tissues. The teacher tells the nurse and the next thing he is having the tube stuck up his nose to test his snot!! Sorry if I am being a bit technical, but really think it is best to use laymans terms here.
So far the results have all come back with nothing which is great, but we have another issue and this is his knees.
2 weeks ago this Sunday, Harry fell over and cut his knees quite badly. These are now an issue for the surgeons and could alter what happens next week. Unfortunately when we came into the hospital last week it was mentioned but no real attention was paid to it and now it is becoming an issue. When Harrys oncologist, Dr Maryanne came round today Harry was very determined to tell them that if someone had done something about this last week then it would have been much better, but no-one listened. I have to say that he is completely right, but at this moment in time there is nothing we can do about it and we have to make the best decision now for Harry.
On a positive note the MRI scan showed a decrease in the tumour and the tissue around the bone which is great, but the really unfortunate part is that until they remove the bone and shoulder from his arm we can't tell exactly how much of the cancer has been killed!
Harry is getting anxious about the surgery and I am sure this is only going to intensify over the next week. I can't imagine what is going through his head as I want to cry every time I think about it, and really just want everything to go to plan next week.

Darling Harry, I love you and Ellie so much and would do anything to take this away from you but I can't. It is just not fair and this really is any parents biggest nightmare. We are so lucky that you have handled the chemo so well so far and have been able to go to school and live as normal a life as is possible when you are not in the hospital, and just need you to continue being brave throughout the rest of the treatment but more importantly the surgery. I will also be brave and remember that even when you are angry or sad and being horrible to me it is not because you don't love me as I know you do, but because you always attack those closest to you and those you know that will always be there, so in a way I should take it as a compliment. We will all be here to help you through this next stage of your treatment, and love you to pieces.

PS Harry being a lawyer isn't such a bad thing!
PPS To all the other wonderful children and parents that we have met in PMH, stay strong and keep laughing! As they say laughter is the best medicine!