Well it's day 12 in hospital today. His cast might be ready for today or tomorrow, then as soon as he can get around on the crutches they will let him come home! Daisy, Kitty and I went up to have dinner with him last night and of course just prior to our arrival he was taken off for tests for his carpel tunnel which he had been waiting for all day! So we waited for an hour, then he came back and we were able to have a bit of time before we came home.

Once more we are trying to master adjusting to hospital time, like the '10' day hospital stay for this operation and now the 2 weeks at home in between coming home and starting chemo has turned into starting chemo next week. So we are very thankful that this treatment/operation etc... is going so amazingly well, it would just be nice to have a bit more time together at home. The chemo stays are going to seem so short after this which is really great!

Kitty and I caught the train up today to have lunch with Simon and had nice time. Unfortunately there won't be any cast until early next week. Again we have to learn not to take very much of what we are told by too literally, which is difficult. He has used the walking frame a couple of times today, just going from the bed to the chair, which he found a bit tricky but enjoyed having something to challenge him.

His left hand seems a bit worse today with the carpel tunnel, but his right hand seems almost normal.

I don't think there is much else to report. I find it hard only having about one hour a day with him, and spending most of every day away from the kids. I know it will pass and hopefully by the end of next week he will be home with us where we will face new struggles, but at least we will all be together again.

p.s He just called to say he just used the frame again and didn't find it too hard compared to yesterday! Yesterday he felt like he was 150 years old, tonight only 80. He said it's still difficult and painful but really encouraging to see how much it's improved since yesterday.

I went up this morning to see Simon and he is finding it all quite hard. He's been in hospital now for seven days, and unable to move for six of those. The carpel tunnel is driving him nuts and he is feeling pretty sad. His right hand feels like it might not be as bad as it was, but the left one still feels too sore to do much with. And he's not sleeping too well which make the days even longer.

This morning he was told that they might put a cast on him so that he could start to practice on crutches. He waited all day, but nothing happened. It makes it harder when they don't even come and tell you it won't be done, they just leave you waiting and hoping all day. Now he's not sure if it will be done tomorrow because of the public holiday.

They let him sit in a chair today which he found even less comfortable than the bed! As Carolyn said "be careful what you pray for!". Some of his friends are going up to play games with him tonight so that will be nice for him to take his mind off it all for a while.

It is starting to feel like a really long time and will hopefully make the chemo hospital stays in the future, seem really short. We miss him so much and it's hard not being together as a family each day, but the doctors are really happy with the way it's going so far which is really, really good.

Hugo's 1st birthday

We are all going up today to have a mini birthday party for Hugo in Simon's room. It's amazing to think back to such an exciting day last year, having no absolutely no idea what the next year would bring! It's pretty great all being able to spend the day together.

Poor Simon's feeling pretty frustrated not being able to move his legs and is finding the carpal tunnel business more difficult to cope with than his legs. He can't use his computer, read books or do much at all, so is going out of his mind a bit. The time is really dragging for him. We will be praying that it will just go away itself and not need an operation. It's good news that his legs aren't bothering him too much though. Hopefully they will put a cast on him so that he can get up and about on crutches and maybe a bit of fairy bread and some cup cakes will cheer him up.

Each day Simon seems a bit better. The epidural was only effective on his left leg, so it was quite painful for him with his right leg having had a bone removed. But today the epidural stopped working completely so they just took it out. Fortunately he isn't too sore because the morphine seems to be doing a good job. He hasn't had a good night sleep yet, so hopefully tonight now that he is out of intensive care (he came out this afternoon) he might get proper rest. He is pretty dopey and out of it with being tired and the morphine

He has carpal tunnel syndrome in each hand which makes doing anything a bit tricky, so the doctors are keeping an eye on this but think it should go away. I went up tonight with Daisy and Kitty and we had dinner with him. He is enjoying the food in this hospital which is great because it means I don't have to bring him up his meals each day. Daisy was pretty impressed with all of his stitches. I could count 47 in his left leg, but there are more under bandages.

Prof. Choong and Damien the plastic surgeon are really pleased with how it's all going so far. So apart from tiredness things are going well.

This is just a quick note to let you know everything is OK. It all took quite a while. They wheeled him in to surgery at 8.15am and didn't bring him to the intensive care unit until 7.15pm. It was a long day, but it's nice for it to be over. The plastic surgeon's bit ended up going for 6 hours and at the very end there was a problem with an artery pulsating or something, I am so tired I don't know what he was talking about, but I know that whatever it was fixed itself and he is really pleased with how it all went.

Simon is feeling pretty terrible. He vomited up blood shortly after I arrived and his eyes were really sore from being taped open for that whole time. He was desperate for a drink but wasn't allowed any until about now (11pm). His legs are fairly sore, even though he has an epidural and they have given him other strong pain killers. There are plenty of stitches in his legs. It was pretty sad sitting with him, not being able to help him feel better, but such a relief to see him. It didn't seem too bad until about 6pm when I had been expecting it to be over around 4 or 5pm. Hopefully he will sleep well tonight.

Today has been good. We were at the hospital early enough to have pizza and ice-cream again and enjoy the sunshine in Brunswick Street and then settled in the hospital room which felt more like a hotel room. The staff are very nice and the plastic surgeon came and spoke to us. We had thought the operation would take about 3 hours, but he said his part takes about 4 hours, so it would probably be about 8 hours in total which was a bit of a shock, but OK.

It sounds like quite a big deal with all of the work he has to do, making sure the bone doesn't die and reconnecting all sorts of things and getting skin grafts from his thigh and other things I don't remember. The success of the bone transfer stuff is about 97%, if it doesn't work it gets pretty complicated, but he wouldn't go into any detail about what that would mean.

He thinks that Simon probably won't be able to put any weight on his left leg until after the 20-30 weeks of chemo because the chemo drugs will be almost stopping it all from healing, this seems less frustrating because of the great job the chemo seems to be doing of killing the cancer. After the operation he will spend the night in intensive care.

I'm going up to see him at about 7am before the operation and will let you know how it goes as soon as I can.

Simon's operation will be in St Vincent's private on Saturday. He will be admitted on Friday so that he can meet with the four different surgeons who will be operating on him. He will be working up until then. We feel a little bit anxious about it all and what to expect etc... It's nice making the most of having him here this week and feeling really normal, but in some ways we just want it over and done with!

Kitty is sitting on my knee asking what I'm typing about and what an operation is, and wants me to write that the doctors will make daddy's leg better. Now apparently I'm writing too much so better go.

Another day, another trip to the hospital...

... but this time it was with Daisy. Daisy and Kitty were having a great time running up and down the hallway at David and Debbie's, when Daisy fell onto the rocking horse and sliced her head open just above her eye. With blood pouring out and a pack of frozen peas applied, we were of to emergency, again.

After 3 hours we were seen by a doctor and crazily brave Daisy had a local anaesthetic and 5 stitches, while I was told to lie beside because I was about to faint, which helped but the doctor's need to describe all that he was doing didn't! So we were home just after midnight, almost 5 hours later.

Simon is feeling normal. His operation will probably be happening Saturday. He played golf today and is wondering if that will be his last game for the next two years.

Thursday 10 April

OK, well Prof. Choong was looking at the results with us for the first time which somehow makes it seem scarier because you are waiting to see his response to it all, to see if he is shocked or horrified or screaming or something.

Here is what he said...

The results look the way he would want them to look. The tumor doesn't seem to be any smaller in the bone but is definitely less aggressive than it was in the first scans in January. It doesn't appear to have spread. He was all busy saying it was a good, even great result (which is a pretty big deal for a doctor to say) then realised he hadn't checked the chest x-rays which he said would be the most important, so then we were all scared again as he went to another room to look. He came back saying he wasn't too fussed about them. I was confused, wondering did that mean it was all clear, or simply that he wasn't fussed about it?! But that was all he said.

Next Thursday or Friday they will operate. Choong's part will take a bit over 2 hours where he will remove the affected area in the tibia, about 15 cm, from just under his knee to just above his ankle. He will replace this with two fibula (which are next to the tibia, but apparently not used for anything) and will join them with a rod in the middle to hopefully grow into a new tibia. This part will be followed by a plastic surgeon doing something, not sure what yet, Simon thought higher cheek bones perhaps?

He showed us an x-ray of someone who has had this done and you could see a few big bolts holding it all together. He also showed us a photo of this patient walking on the great wall of China just over two years later. He will have an epidural (yes, that's right, more pregnant woman things) for 3-4 days after the operation, then able to get up about 5 to 6 days. He will be in hospital for 10 days after the operation.

He will have two weeks at home after this before the chemo begins again and we won't know the condition of the tumor until two weeks after they remove it. Then they will be able to tell us exactly how effective the chemo has been and if it will be 20 or 30 weeks of chemo to follow.

He will be on crutches for months (not sure how many) and for the next two years will have to take it pretty easy and wear different kinds of braces on his knee.

So it is amazingly good news. We are really happy but also like with most of the news we've had, it seems a bit overwhelming when you get it and are thinking about getting through the whole of the next two years rather than just each day, but we know this will pass and we are really, really thankful. This is exactly what we prayed for. And thank you to all of you who were/are praying for us.

Wednesday 9 April

Well we had the tests yesterday and they went as well as they could. We had the same lovely lady, Marika doing most of them. Just before the first scan I was sitting next to Simon as he was lying strapped to the CT machine waiting for it to start. Suddenly for a few moments it all seemed a bit overwhelming, remembering last time we were here and how real it all became. It was a bit sad and scary and we realise how blessed we are that most of the time we are just tired, not scared and without hope. I don't know how people get through this without God.

In-between tests we were able to wander down Brunswick Street for pizza and ice-cream, and just sit around in the park, enjoying a beautiful sunny day.

Like last time we could see everything on the screens as the machine scanned his body. Like last time we saw things lit up like his tumor was, so we could either assume all of his organs are affected or remind ourselves that we can't understand the test! It's hard to recall exactly, but we think last time we could see an obvious difference between the leg with the tumor and the leg without and this time it didn't seem so obvious, so that could be good, but we don't really know. They weren't able to send a doctor out to talk about the results this time, but we weren't too bothered by that because last time she told us it didn't seem like a sarcoma and it was, so we are happy to wait to see Prof. Choong tomorrow morning at 10.30 for the results! So we are feeling a bit anxious about it all and I expect that will be worse just as we are about to see him. In the mean time we will just try to be distracted and praying as much as we can!

Saturday 5 April

Simon went to work for part of the day on Thursday, but still had the headache and woke up with it again on Friday, so he was sent for an MRI to make sure his brain wasn't bleeding! I thought this sounded scary, but the doctor wasn't too worried. It was all clear and he had a good day at work and was able to stay for the whole day and didn't feel as exhausted as he usually does. He hasn't had a headache today which is great.

Wednesday 2 April

Well, our 'normal' week began on Sunday with us feeling a bit tired, but able to make it in to church. That evening after dinner Hugo was playing on the floor in his bedroom and we heard him doing a horrible, weird cough. I grabbed him and he was choking and his lips were going blue. We weren't too sure what to do, he was still just able to breath but was really distressed, so I took him to the emergency department.

By the time I got there it seemed that whatever he had been choking on was going down and he kept having bursts of pain and crying. They did an x-ray on him which didn't show anything up, but I think he had choked on a little plastic rat (tasty) so it wouldn't show up easily anyway. One lady thought he had swallowed a real rat!

We were in there for a few hours and they were going to send us home because he seemed OK. They double checked with a doctor at the Royal Children's Hospital who said that we would need to come up for him to be observed. So I wasn't too excited about that, but was glad that they were being cautious. We rode up in an ambulance. I lay on the stretcher and cuddled Hugo trying (unsuccessfully) to get him to sleep and for a moment I thought this might even be a relaxing break, just lying around in hospital, no cooking, no cleaning and only one child.

We sat in a cubicle for a few hours with different people coming and giggling about the boy that swallowed a rat and I expect they were doing something medical as well!? By 2am I realised I was mistaken about the relaxing part of this. At around 3am we were in a bed and in for a sleepless night. I thought I was tired before today! Throughout the day Hugo had to fast a couple of times and have a few tests, then at about 5.30pm we were allowed to go home and arrived at 7pm (25 hours after leaving for hospital!). This was a long, long day though obviously I am very, very relieved and thankful that he is OK.

Now, as for Simon he is pretty tired and frustrated with not feeling good. He has had a headache for a few days and just feeling generally not great. He went to work Monday and yesterday but has had to stay home today. The doctor says he should be feeling better by tomorrow. It's amazing how constant and exhausting this all seems. I don't think there is any 'normal' at the moment!