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.