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!

Home for the weekend

Harrys Flanimal Book Week Dress Up



Having fun on the golf buggy!



Kong Kong always visits us on the evening when everyone else has gone home. One night he didn't come over and harry said 'where was Kong Kong?' So this evening Kong Kong visited but harry was asleep so we took a picture to show he was there!

Well we managed to get home by Thursday morning again and Harry got an A+ from the nurse. With this chemo, once given they check his blood every 24 hours and his level has to be below .1 before we are able to go. He wasn't drinking as much this time but still managed to get his level down. They do put 4 litres of fluid into him via a drip which should be enough fluid for anyone.
Friday we had to go back to the hospital and had a meeting with the plastic surgeon. Then in the afternoon harry had to go back and see the dermatology department as the skin around his broviac is really red and irritated.
So now we are doing daily dressings at home. I did one dressing at home on Thursday night and then on Friday one of the nurses did his dressing and Harry said that I did a better job!! So think that was a compliment!!
I had a conference at Kings Park and then met up with everyone afterwards and we had a few drinks and something to eat. Between appointments Harry went so school and dressed up as a flanimal book thanks to nanny Jen.
Saturday we played golf and i was very excited to say that I left the course and my jaw was intact!! The kids and Nanny Shirley drove the buggy, which was great apart from they were never anywhere near us when we needed clubs, so we should have just pulled clubs and let them drive round!
Tomorrow we are doing a sausage sizzle at bunnings and then we are going to Mum and Dads for dinner. Then Monday back to the hospital.

23rd August, 2010

Darrens first appearance on the blog with his mum!!



The latest favourite!!



Yum yum!!



Outing in Fremantle!


Well we are back in hospital for the next dose of Chemo. It feels weird, and as i said to Harry as we drove in today, "It feels like you are leaving one world and entering another one". His levels are back up so Chemo was ok to start. After watching him over the last couple of weeks, I knew the levels would be ok as he was probably neutropenic during the last week. You can tell by the moods and how he gets tired quicker.

Had a nice weekend, just chilling and trying to do normal things. Sean and Lara came round yesterday and we went for lunch and then they all went to the bowling club. It is good to keep his mind off what is going on and try and be normal.

We have apparently got a scan this Wednesday which will determine what leg they use to take the bone out of. We are trying to book an appointment to see the plastic surgeon so at the moment not sure when this will be. Will let you know when I know.

Darren is over East for a couple of days and Ellie is staying with Nanny Shirley and Laura. Hopefully they will manage to get her to sleep, as we all know how determined she can be.

Hopefully we will be home by Thursday. For all those that I haven't mentioned it to, I am having a jewellery party on Saturday September 4th from 12 - 3 pm. So if you are free then pop along. A good excuse to catch up have a glass of wine and check out some jewellery!

Harry has been asleep for the past three hours as they gave him a tablet to try and stop him itching his broviac and he fell asleep and hasn't woken up since. So maybe he might wake in the middle of the night and want to have a chat, so might get some sleep now.

I just wanted to say thanks to all the kind and wonderful people out there who have done things to help us during the last couple of months. I would name you all, but would feel awful if I have forgot someone. Whether it is having the kids at the weekend, so I can breath for a couple of hours, making food, buying us dvd's to try and break up the boredom in here, taking ellie to swimming or dancing, delivering fruit so we have some fresh produce in the house, donating to charity when I ask you or any other way you have helped, thank you! It really means a lot, and we are extremely grateful.

20th August, 2010

Well we have survived our second week at home!! What a busy couple of weeks we have had. I have managed to get most of the work done I had and most of the jobs done I needed to do. Also got the hair done, legs waxed and eyebrows and lashes tinted - yes that bit was all about me!!!!!!!!
New Norcia was great. We were there for 7.15 to join the class on the river walk which never happened and visit the bakery which was shut on Tuesday. Apart from that we managed to do all the activities, which included aboriginal face painting, art and music. Then we had lunch. Dad and I snuck off to the hotel / pub and had lunch and a couple of beers, and left the kids and teachers to their nachos!! After lunch the kids did boomerang throwing and spear throwing and then went round the musuem.
By the time we left it was 5.30 and we managed to persuade Harry we should leave - we bribed him with McDonalds and headed home. Thanks to Dad for driving! We haven't been away together for ages, and next time we are going somewhere hot and with a beach!
The rest of the week has been good. The candle party went really well and we managed to sell $1700 worth of candles and sold a few raffle tickets. Well done to Lorinda who won the raffle. ( I will get the candles to you soon)
The weekend of the 14th was spent sorting more things out of the kids room, and throwing another bin bag out of each of them. Obviously have to do this when they are not around. Also washed all the blinds in the house, (apart from 2 which we won't mention). Amazing after over 5 years how clean they come up.
Camp Quality came to school today and did the puppet show. We had a session with the older kids and then the younger kids. We had a few photos taken with the puppets and you might see the kids in the local paper as the Melville photographer turned up. We also handed over some cheques to Shelley from camp quality and the fundraising total now stands at $10885.05. What a great effort and a fantastic contribution by everyone.
The operation is booked for the 9th September at this stage. We are seeing the surgeon again on the 1st after the MRI scan on the 30th and unless a miracle happens the operation will go ahead as planned. The shoulder (ball and socket) will be removed, and a bone from the bone bank will be put in to fill in the top of the humerus. The bone from his leg will be placed in the arm, and at the moment that is all I know. The operation will take will take up to 8 hours, and the closer it gets the more real this is all becoming.
Harry went to bed last night and was very upset about not being able to move his arm properly after the operation. He then woke up in the night and the dressing over his broviac had lifted and the only tape we had was the one he was allergic to. So he wasn't very happy with me.
Anyway he had a good day at school today and Ella Miller has been over for a play.

September 4th we are having a jewellery party at home. All the good stuff at a fraction of the cost. 12 - 3 at 58a Wichmann Road, Attadale. Hope to see you here!

Nanny Shirley has arrived back and Laura is coming back tomorrow. Harry doesn't know yet so will just go and pick her up and hopefully surprise him. Although who knows what mood he will be in and how it will all go.
Better go as dinner has arrived. All good home cooking of course.

Have a great weekend.

Back home

It is Thursday evening (12th) and Harry has managed to go to school for the week so far and is feeling better than he did last time. We had his weekly blood check yesterday and although his levels are low he seems to be ok.
Ellie got her first school certificate and we were very proud to see her accept this from Mrs Reynolds today. Even managed to get her up in time so that she could brush those curly locks!
Laura has left and gone to Darwin. Nanny Shirley arrived, and has gone to Adelaide for the week but will be returning next Friday. Looking forward to their return as I have had to do some housework!! Joke!!
Harry is hoping to go to meet his class in New Norcia next week as they are going on camp. He is only going for the day, but at least he should get to join in. (fingers crossed)
The week has been busy with one thing or another and generally trying to catch up on things. I can't believe it is already Friday tomorrow.
The camp quality total is currently sitting at $10,406, so a huge thanks once again to everyone who has donated.
We are off to see Professor Woods in the morning, who is going to talk to us about the surgery which is coming up all too quickly. So will keep you posted on that.
Looking forward to seeing some of you tomorrow afternoon at the Wicked Wix party, but best get some sleep now as it is getting late!!
PS Thanks Teri for spoiling me today. 2 hours of being totally pampered was just what the doctor ordered. xx

Skip Bo - A Game Enjoyed By People Of All Ages

The younger generation!



The older generation!

Well we are back at the Resort having the first lot of chemo again. We have the same programme which covers five weeks and then back to the beginning. So we are in week 6 but it is really week one. At least we know what we are in for as Harry has been pretty much the same. He hasn't slept quite as much, but the sickness and red cheeks are pretty similar.

Unfortunately this time he has the flu - so has lost his voice for a few days, which is not all that bad, (for me anyway) but he has been put in Room 8 in Isolation. The room is the best room in the resort but not being able to go out the room for Harry is driving him mad. His friend Nicola has just come back in, and Harry thought it would be good if they could share a room, but no such luck as he can't even go in the corridor.

Nanny Shirley is here now, and has been in to see Harry a few times. We have a few of the family visiting and skip bo seems to be the challenge of the week!!

Hoping to go home tomorrow and then planning on staying there for just over 2 weeks. Lots planned so NO time to come back in, so illness and temperatures please stay away.

Harry then has two more weeks of Methotrexate and the Monday before the second round, we will have an MRI scan. This should tell us what the tumour has done, so everyone keep your fingers crossed that the outcome is going to positive. Then Harry will have the surgery, but he doesn't actually want us to tell him when it is until just before, as he doesn't want to think about it. Fair enough, I panicked when I had to have my jaw done and I was only asleep for 45 minutes. Harry will be under for at least 8 hours!! I think I might ask if they can knock me out as well, as it could be the longest 8 hours of my life.

Anyway three positive things for today :

1. The sun is shining.
2. We might be in isolation but we have the best room in the resort.
3. We are hopefully going home tomorrow.

The Camp Quality Fundraiser is pretty much finalised, but if anyone still wants to donate then please get the money in before next Wednesday, 11th. Receipts are slowly being written so if I forget you, please let me know.

Ciao for now.