A screw loose...

A couple of months ago Simon went to see Prof. Choong (surgeon who did operation to remove and replace shin bone etc...) and the scans showed that the bone hadn't healed a lot probably because of chemo, but that he could start putting 10% of his body weight on it.

He had an appointment with Prof. Toner, the oncologist at Peter Mac this morning and an x-ray of his left leg. So he was hoping they would tell him it had healed enough to start putting more weight on because he feels like although it's better than nothing, 10% isn't that much. He feels really good these days and finds it frustrating not being able to get around without his brace and crutches. He tried to rebel a few weeks ago and stopped wearing his brace, but a bit of nagging and emotional black mail from me (and a makeover of his brace from flesh coloured fuzzy felt on the front, to nice black material) had him wearing it again.

It will be great when he is properly mobile again. Most nights he has dreams where he is playing football (soccer), running, riding a bike or some sort of activity that makes him twitch and jump in bed which is probably fun for him, not so fun for me!

Unfortunately Toner said it hadn't healed enough to put any more weight on. He didn't say whether it had changed at all since last time. He will have scans again at the end of January, where they will do all of his body and bones to make sure there is no more cancer.

They discovered today that one of the screws holding the bone and metal plate together is coming loose and I will NEVER know if this is true or not, but apparently you can feel it protruding through his skin and another of the screws seems to have broken. I don't know too much more about this because as Simon was trying to explain, I was trying not to faint, so was not very good, supportive wife (have broken into sweat typing this). Anyway they will just leave it for now because they don't want him to have more surgery at the moment and will wait until next year to work out what to do. In the mean time I will try not to think about stray screw in his body. ( I am unable to read over this paragraph to check that it makes sense, so sorry if it doesn't).

He had blood tests today to check how his liver and the rest of his body is going and I think we don't hear about the results unless there is something wrong.

These past few months since chemo finished have been very lovely. When I see photos of Simon during chemo I am shocked at how unwell he looked, fortunately I wasn't too aware of this during it all. Kitty didn't recognise him in a photo with him holding her (without his hair), now that all of his hair has grown back. Every morning when I get Hugo up he say's "Daddy" and goes looking for him. And Daisy has had a couple of times where she's been a bit teary and wants Simon to take her to kinder or wants to just stay with him.

On the 21st of December it will be one year since we found out about his cancer. His birthday (22nd December) will be a little more exciting than it was last year!

The results are in...

After all the pregnancy symptoms Simon has had during this treatment (which by the way has lasted for 9 months) this is it, he is on his way home! We are all running around the house squealing, Hugo of course has no idea why and embarrassingly for him has the highest pitched squeal out of us all. I can't believe it's over! It was pretty close, only .05, but I was prepared to kidnap him if it wasn't low enough by now. A very, very happy day.

The results just came in and they were .08, so maybe tomorrow morning.

Well he is still in hospital. Last night his counts were still .18. He has been up since 3am with bad headache. I took him a coffee and spent the morning with him. He's feeling a bit sad and frustrated and we are hoping the tests this evening will show he can come home, but not too sure.

I'm so glad it hasn't been like this all year and that they used to let him home when his counts were down to .2, not .05 like everyone else. Will write more when we get the results tonight.

One more sleep?

Simon's methatrexate counts were .2 something last night so it's possible he may get down to .05 by tonight to come home! He was moved back up to ward 9 last night so that's a bit nicer for him. He woke up with a headache today and didn't sound too great, but I think he's OK apart from that. I'm going up to have lunch with him, maybe the last time I'll visit him there!

Oh today was a bit of a stinker of a day. When Daisy, Kitty and I arrived to have lunch with Simon, there were a team of medical staff trying to get him to have a blood transfusion because his hemoglobin levels had dropped to 67. He had agreed with the doctors that if they dropped below 70 he would do it, but then they mentioned that the bloods taken had been diluted so that may have made a bit of difference to the readings.


Of course Simon then wanted a re-test. They tried to convince him to just do it by sending random people (medical ones) in to talk to him about it, but he insisted on doing the tests again. He's certainly not opposed to having a transfusion if he needs it, but when the risks of having one - although small, outweigh the risks of not having one (when his counts are 70 and above) then he doesn't see the point of having one! He was feeling fine, and didn't have any of the symptoms they thought he should if they were so low. Meanwhile I called mum and asked her to be praying that they would be above 70.


Within an hour the results were back and they were 80. Interesting.

It seemed like yesterday there were alot of things that made it not great for him! Earlier in the morning a doctor had told him his potassium levels were really low again, 2.9 and that he would need supplements. He waited and waited, but didn't actually get any. Later on in the afternoon he mentioned it to the nurse, so she went and asked a doctor and finally he got some.

Also his methatrexate counts were still pretty high (13.something) compared to what they would normally be at this stage. Half an hour after his folenic acid (helps clear the methatrexate from his body) was due the nurse came in and started giving various tablets but not the folenic acid. Simon mentioned he was due for it and that he thought it was more important than these other tablets, but she wouldn't do it. Finally 45 minutes after it was due, he got the folenic acid. The nurse went and spoke to the head nurse about it because Simon was pretty insistent and she had to come back and apologise, he had been right.

At 2pm when the next lot was due she came in and did something then said (in a friendly way)she would leave him alone now for a while, he suggested that she wouldn't because his folenic acid was due again now! It just seems crazy that he is having to be like this and I can't help thinking of all of the patients who wouldn't feel well enough or think it necessary to be watching things so (crazily) carefully.

Often he will be told something by someone then the complete opposite by someone else there. He was also moved to a pretty depressing room, he thinks because he caught them out on so many things, but I'm pretty sure there was some poor person really unwell who needed a room alone.

Last night he was feeling pretty down about it all and exhausted from feeling like he needs to make sure there are no mistakes made. Again, it just makes the end of it all so much more exciting, but I didn't know how he was going to cope. After I got off the phone from my poor sad husband I went and prayed, not really knowing what to ask for that would help the next few days not seem so hard. 10 minutes later David, my brother came in visiting Simon and stayed for 5 hours (this was a really good thing!). They also met a really nice family on the ward and just amazingly had a really nice night. My cousins also phoned him and said they would be coming in for dinner the next night and all of a sudden his days didn't seem so daunting.

This week he has also found it a bit harder being on a different ward than he has been on all year and not having a relationship with any of the nurses there. Yesterday they seemed to be coming and lecturing him on things that he already knew because he had been doing this all year, then they would go and forget what they were supposed to be doing or something and he felt like they should be looking after themselves rather than lecturing him like he didn't know what was happening!

Sometimes this blog may seem like we think there aren't any good doctors or nurses there, which isn't true, there are many amazing and wonderful people there and we are soooooo thankful for the treatment he's been able to have. And I know I haven't written about all of the times when they did things right! There just seem to have been many mistakes made which make this all a bit harder to deal with!

Excitingly I just found out his methatrexate levels from last night were 1.6! Not long now!

Everything is going well, his last dose of chemo finished at 2am this morning and he just has to stay in until it clears from his body down to .05 again, maybe Saturday or Sunday. His white cell counts are up a little, so they are monitoring him for infection, but all of his other counts are OK. They are giving him potassium before it drops too much.

He is getting annoyed with bossy nurses and hoping he will be home tomorrow. I told him he was dreaming.

It is getting pretty exciting!

Simon's methatrexate level was .07 this morning, so it will hopefully be down to .05 tonight so that he can come home. His hemoglobin was down a bit, to 78. Normally they would give blood transfusions once they are 80 or below, but it doesn't seem to be affecting him too much, so they will just monitor it and leave it for now.

His potassium is still a little bit down but not too much and they are giving him tablets for it.

This week my choice of weapon/protection by my bed was a broken china rocking horse ornament thing which I threw out this morning. I suspect I am getting tougher (or just being an irresponsible mother) because I heard noises during the night like the front door was opening and I managed to go back to sleep without even reaching for the horse.

Hooray! He's on his way home.

Simon had a bit of a temperature on Tuesday, then normal yesterday and a bit high again today, but not over 40 so that's OK. His methatrexate levels from the blood test last night were down to 6.9 (and need to be .05 to come home) which is about normal for this drug - at least they're not going up like last time!

This evening he asked for a print out of the results from the blood test last night and saw that his potassium levels were low again, 3.1. Last time when they were down to 3 there was a panic about the danger of his heart stopping, so it's a bit worrying that no one had noticed this apart from Simon considering how bad it was last time. He had to ask to get a test for his potassium levels checked with the blood they had just sent off tonight and is now asking to see a doctor to see if he needs the tablets they gave him last time to get his levels back up.

I'm feeling pretty over it all at the moment. I can't believe that there have been so many instances where he is having to look out for such dangerous mistakes happening and I want to slap people. It seems crazy to me that they're not keeping a close watch on him and his levels.

Well today he has started his (hopefully) second last week of chemo. The two things he dreads the most about going up there are who he might be sharing a room with and the hospital food. He has his own room at the moment which is really, really great and I will be taking him up food, so maybe he will have a nice week? He's hoping he will be able to come back home on Saturday or Sunday before going up again on Tuesday. There isn't really anything else to write and I'm hoping it will stay that way!

Photos of Simon's leg after the operation in April.

Simon had day chemo yesterday and today which is exciting to think it could be his last one of this drug! He has next week off and then the two final weeks of methatrexate. The oncologist said that this time he would have to stay in hospital until his levels were .05 instead of .2 because of the trouble he had last time.

He doesn't think there will be as many problems because they seemed to be caused by things being forgotten rather than anything else, but I'm glad he's being cautious and although we (especially Simon) will find it harder being in hospital for a longer time, at least we know he will be. It will also be helped by this possibly being the last two weeks of treatment - I can't even imagine!

On Sunday Simon was still feeling pretty bad, and people at church had a prayer time for him after the evening service. Amazingly he was able to go back into work Monday and today and do full days.

He is unable to have chemo this week as his body is still recovering and they try not to do it when he still has mouth ulcers (which are slowly getting better but still very painful).

So this week is so much better than when I think back to even a few days ago. I am pretty tired as the kids have been up during the night with bad colds, but sleepless nights spent cuddling them is a million times nicer than staying awake checking that Simon is still alive. The goodness of this week seems magnified by the badness of last week.

It's been a dismal few days. Simon is still at home but apparently is borderline at having to be put in hospital. His ulcers have improved a tiny bit, but they are still very painful and he is hardly able to eat anything or talk very much. He is still getting blood noses and diarrhea and his counts are dropping when they should be going up - his nutrifils? and something else I can't remember what they are called, so his immune system is pretty comprimised. He is still spending his time resting in bed or on the couch.

I think this is what most people having chemo would go through the whole time so we try to focus on how fortunate we've been for alot of the time.

At the moment Simon is unsure whether to have the next three treatments which are due to start this Tuesday, so he will talk to Prof. Toner about it all. There seem to have been so many serious problems with this last one and he feels very scared about it. I'm glad that he hasn't had to go back into hospital, but feel scared about being responsible for him and at night time I have been awake alot praying and making sure he is still alive.

Today started off a little better, Simon wasn't feeling great, but was well enough to go into work for a couple of hours. It was such a relief to know that he had improved a little.

Then this afternoon Prof Toner phoned Simon, concerned that the blood tests from yesterday showed that the methatrexate was still too high in his body and it was urgent that he get some medication (folenic acid), to help get it out of his body - methatrexate is lethal if left in your body.

At first he wanted Simon to be admitted but Simon, given his delight at hospital stays, was adamant that he should be at home. Toner was OK with this as long as he was drinking enough fluids to help flush it out and was taking the tablets properly. I need to call him tomorrow to let him know how he is and to organise more blood tests to check all of his levels.

So today it's been a bit scary. Simon is feeling very upset and worried about it all especially knowing that he is due for more of this in a couple of weeks. I feel a bit shocked at it all and am trying not to think about things like this that can kill him.

Simon's mouth was worse today and he was still feeling very unwell so Lyndsay drove him to Peter Mac to talk with Prof. Toner the oncologist. He said that Simon's body was too toxic to have treatment this week so they will see if he is ready for it next week. He has sore eyes, nose bleeds, sore mouth and still has gastro symptoms and just feels pretty beaten up so I'm glad they are giving him an extra week to hopefully get a bit stronger.

He's feeling pretty rotten today, worse than he has in a while. I don't know how he will cope with more chemo tomorrow and the next day. It's been amazing how well his body has dealt with all of the terrible (but helpful!) medicines all year and it seems like it is all finally taking it's toll. His mouth is so sore (he says it feels completely raw) and he can only eat ice cream and icy-poles.

He has spent the day sleeping or lying on the couch and is just calling the doctor at Peter Mac to see if he thinks they should give his body a bit of a break. It's horrible seeing him feeling so sad and sick. He looks so much like he has cancer today.

He just spoke to the doctor who told him to still go up to the hospital for treatment tomorrow and they will review it all but will probably go ahead because it is most likely just his body wearing out.

Simon is sore in his left rib/lung area and the doctor said the worst thing it would be is a blood clot, which scared me but they don't seem panicked and I guess they will check it out tomorrow. I can't wait until it's all over and I'm so glad that God is in control of it all.

Yipee!

He can come home!

Good and Bad...

The good news is his heart didn't stop and his potassium levels are back to normal, the bad news is his meth. levels are 2.5 so he won't be home tonight. We are feeling pretty sad because I didn't visit him today, thinking that he would definitely be coming home.

We just have to try and keep remembering that we are nearly at the end and I feel like this will make us appreciate the end even more. We are very thankful that it hasn't been this hard for the whole year.

A little worse...

Now his levels are 3.2, and everyone's levels are taking ages to clear so we're not sure what's going on. They also discovered that because he has been on the drip for so long his potassium levels have gone too low and they have to give him some medication to correct it which will make him sick, but if he didn't have it his heart may stop, so it's a bit of a crazy day! They will check all levels again at 4, so will let you know when I know anything.

A little ridiculous...

They did another blood test at midnight and the results were .5. They had actually gone up, so apparently his body is now able to make methotrexate (the chemo drug). Amazing. He is waiting to see the doctors to find out how this can happen.

When his counts were so high earlier this week, the nurses told him that everyone's counts were unusually high, so now he is wondering if there is something going on with the machine doing the tests because it seems really strange that there could be more in his body than there was yesterday. It is so good that after this week he will only have 2 more weeks of methotrexate!

He just got the results back and unfortunately they are a little too high .36 (need to be .2). So I am going to grab the kids and some take away and drive up to have dinner together. He is still feeling pretty bad this time and has just been sleeping lots and the anti nausea tablets don't seem to be helping as much as usual. He will be glad to come home probably tomorrow, but it's really nice we get to go up and spend time with him tonight.

Choong didn't see him yesterday, but made it in today and said he was pleased with his leg. The top part is healing very well and the bottom part is OK. He will see him again in 8 to 10 weeks to talk about the possibility of starting to put a little bit of weight on it, still in the brace and with crutches. Then some time next year, depending on what the x-rays show, they will look at losing the brace and just using crutches, then eventually he won't need the crutches. So it is still a while away before he will be running about, but nice that it's going well anyway!

He is feeling nauseous which doesn't usually happen with this treatment but at least if this is going to happen each time, there are only two more goes of this one!

His counts were 16 last night which is really high, normally at this stage they would be about 5 or less, so hopefully they will drop quickly to .02 so that he can still come home tomorrow.

Gastro can be good?

It got him moved from a crowded and vomity hospital room to a single room! Prof. Choong is meeting with him tomorrow to talk about the x-ray of his leg, so that will be interesting. He was feeling pretty sad about being in hospital this week so this has been a big treat to have his own room again.

Simon hasn't felt too good this week. When he got to hospital on Tuesday, a blood test they do to make sure he's ready for chemo again showed that some counts (don't know their name) were too low. They realised that because Simon was in the day unit for chemo last time, for some reason the staff hadn't thought it necessary for him to have the injection that he would normally have after this treatment when he got home, to help his body recover, even though he had asked them about it.

Normally they wouldn't have started chemo with his counts being this low but because in the past his body has coped pretty well, they decided to start it anyway. So it has left him feeling pretty bad. Yesterday he got gastro and spent the day sleeping.

I'm sooo glad that the chemo is working but I find it really hard thinking about his poor body being pumped with such scary and often lethal medicines. We were wondering this morning as he struggled to go to work, if he was going to be feeling like this for the rest of the treatment because they are doing it more intensely in these last 6 weeks than they have for the year.

This all seems a bit hard but we realise how fortunate we are that he hasn't felt like this for every treatment this year and obviously that it's even working. Only 5 weeks to go now, counting on one hand!

Simon went up to Peter Mac yesterday and was very excited to find he has a single room for the week. It makes it as nice as it could possibly be for him. He has two ulcers in his mouth that are painful, but apart from that he feels good. The numbness in his hands hasn't improved but we are so thankful for the medication that is stopping them from hurting. He finds his crutches more frustrating than his hands these days. His hair seems to be growing back slowly which is exciting. I don't think I will let him cut his hair for a year.

Last week Daisy, Hugo and I had gastro. I am amazed that Kitty and Simon have avoided it so far, especially considering Simon's counts would have been right down.

After we finish this week there are only 5 more weeks left until his last treatment. Amazing. I still can't imagine it.

It's been a good week. He was in Peter Mac from Tuesday to Friday last week and was due to go in overnight today but the ward was full, so they were able to squeeze him in on the day ward and he will just go in for a couple of hours today, then come home and do the same again tomorrow which is SOOOOOO great for him not to be away over night! Only 8 weeks to go!

Simon got home from Peter Mac on Friday at lunchtime and is heading up again tomorrow. It's so lovely when he is home and feeling well. We had a good and busy weekend and it went far too quickly!

I have to try not to think too much about him going away again and how often that will seem over the next 9 (yes, only 9!) weeks. I also have to focus on braveness. Last week the courtyard gate was open so I went out there in the dark to close it and heard rustling in the garden, I froze then ran back inside. I stood looking out the window for a moment then, knowing that I wouldn't sleep if I left it open, walked back out, stopped, picked up a rock and threw it into the shrubbery. Nothing. I went to pick up another rock to make sure whatever it was was either dead or gone, but it (the 'rock') turned out to be a screwed up tissue-yuk, so I just ran past the garden, shut the gate and ran back inside as fast as I could and fortunately wasn't killed. Yes, I need to focus on bravery.

Simon started chemo again on Tuesday and managed to squeeze in a court case in Melbourne before he went in to hospital. There are only 10 weeks left now, I can't imagine not having all of this going on. Although I feel pretty used to it all I still find it really hard every time he has to be away.

He is feeling good and says he is able to get more work done than he does at work or when he's working from home so that's one benefit! He has his own room this time which is a treat.

There isn't really anything else to report, I went up and had lunch with him today and will take the kids up to see him tomorrow. He will hopefully be home on Friday. OK that's all, bye!

Things are going well and Simon has been busy at work. Over the weekend he felt pretty bad and we thought he might be getting a cold but fortunately it passed and he is feeling fine again. Next week he starts chemo and it will be down to 10 weeks left. During that time he only has 2 weeks where he doesn't have any treatment, which sounded a little daunting at first until we worked out that out of about 70 nights he will hopefully only spend about 20 of them in hospital. When we were working this out as a good thing, we were thinking back to just over one year ago when Hugo was born and Simon had gastro so he slept on the sofa bed in the lounge. At the time it seemed horrible being separated, even though he was only a room away!

After having him home for a couple of weeks it seems hard to think of him going away again. Especially when last night at about 10pm there was a knock on the door from some drunk guy wanting a lift back to Corio! And it's so nice when he's here if I am woken by a loud noise (that's not his snoring) and I don't have to worry about what it could be. As he said, he's not sure what he would actually be able to do if it was something more than a random bump in the night, but it's just not so scary when he's here!

The infection in his leg doesn't seem to be any worse, which is obviously a relief. He's still on antibiotics for it so I'm not sure when the doctors would expect it to be gone completely. As much as I love him, I look forward to not having to change those dressings!

He is feeling tired today and came back from work for a little rest at about 11am and is still asleep now - just after 3pm. I don't think he realised how tired he was!

We had a lovely (but busy) weekend catching up with family and friends. The kids have colds so Simon has been trying to be careful with contact, but today he didn't feel as good as normal. His counts will be dropping this week so it could be just to do with that. He is trying not to do too much at work so that he's not too run down as he's not sleeping well either. It's hard because he is really busy, but a bit of a reality check, that catching a cold when his counts are low would not only make him feel terrible but can be dangerous and life threatening, meant that he was able to delegate a couple of things that would help him a little!

Apart from that though there is nothing much to report!

It is amazing how well Simon is feeling. He worked today and is doing a bit more this evening. He said he gets waves of nausea but the work distracts him enough. He is getting a triple dose now of the drugs for his hands, so he doesn't feel pain in them, just the numbness. One of Carolyn's friends had the same thing with her hands after an operation and I think she said it took a few months to go, but it did.

A nurse was telling Simon how shocked she was at how little the chemotherapy seems to be affecting him. Everyone reacts differently, but she said that even with the anti nausea drugs people still vomit and feel so terrible and certainly wouldn't be able to work. We feel very, very blessed.

He went up to Peter Mac for his overnight chemo yesterday morning and is expecting to finish around 7:30 tonight. It's amazing how easy this one seems when I don't have to go up to Melbourne and he's only away for one night. I never thought that would be an easy thing!

He is doing a bit of work up there which is good and as usual is being driven nuts by inconsistency from staff with the treatment of various things! But he's OK.

I have been changing the dressings on his leg each day, which if you know what I'm usually like with things like that is possibly a miracle, considering there are open, white/green areas on the scar, but it saves him having to go into the doctors each day, which he was doing.

It is so wonderful that he can drive to and from hospital and the staff are amazed that he can even pop into work the same day he gets home (which he did last week). We are so fortunate that he is feeling this well.

So things are going well. 12 weeks of chemo to go!

Woo Hoo

He's on his way home!!!!!!!!

Things are going well enough this week. He went to Peter Mac on Tuesday and has been able to do some work which has helped pass the time for him and he's not feeling so miserable having to be there. He was hoping that he might have another short stay like last week, but just got the results of the blood test and the count was still 5.6, last week at this time it was 2.4, so at least we know not to get our hopes up.

I thought I had more news but I can't remember any of it!

Daisy, Kitty and I got a lift to the hospital with Carolyn and the boys which was really nice. We had dinner with Simon then caught a train home. We had such a lovely time with him. We will go up again for dinner tomorrow night now that it seems he won't be coming home tomorrow.

The drugs for his hands still seem to be helping. The doctor has doubled the dose as they weren't being as effective and that has helped.

OK, if I remember anything else, I'll write it down this time! Only 13 more weeks of chemo left! Yippee!

OK, there is quite a bit of news. Simon went to Peter Mac on Monday and was told that the nerve tests wouldn't be done this week which was obviously really disappointing. Simon had been dreading being back in hospital, as he is bed ridden for the whole time because of being hooked up to the IV machine and on crutches, but thought at least he was having this done. He was annoyed that they had told him they would do it, so that he didn't get the doctors at Myer St to do it. Meanwhile I received the appointment time for the test, which wasn't until July 23rd! I didn't even mention this to Simon!



Fortunately, yesterday one of the good doctors heard this and rang the place that does the test, told them that this was urgent and they slotted him in to a cancellation today at 1.30pm. That was really great! The test was fine and told them that the nerve damage seemed to be in his shoulders and would most likely heal itself. This is good, but they couldn't tell us whether it would be two weeks or a year!

Another good doctor prescribed some tablets to help with the pain in his hands. They seem to help a little bit which is nice. Why no one knew of this drug six weeks ago, I don't know! As mum said, "Oh they're characters aren't they"! But it's really good he has them now.

On his first day there he was waiting for a knife to cut the cheese (!) for his lunch. He asked 5 different people. Dinner came around before the knife did, so he was forced to skip lunch. And he had to wait for most of the day before someone was able to bring his bag up from the car. It's hard for him having to rely so much on other people for so many things.

On Tuesday morning he was dozing as the cleaning lady mopped around his bed, which is extended because of his height. Suddenly she slammed the extension shut and Simon was just able to move his leg in time before she broke it, because he didn't have the brace on! It's scary to think of all the things you don't even think about that could go wrong.

This morning they woke him at 4.40am to do his obs, checking temperature etc... which drives him crazy! He has (fortunately) never had a high temperature, so there doesn't seem to be any obvious reason why they wouldn't let you sleep for a couple of hours more so that your day isn't quite so long.

His hair is starting to come out again, and this time even his eye brows are affected, so that will be a bit harder for him than last time, but it's nice that it grew back so quickly last time.

This seems like a long list of whinging, but it's just really a list of things that have been happening this week that haven't all been great.

On a brighter note, Daisy, Kitty and I have had fun going up on the train each day and having dinner with him both nights. It's really nice having the excitement of getting to visit him. And he is so bored and lonely that he REALLY loves seeing us (I know he does anyway, but it's just magnified!)!

Other great things are that Simon is the only patient they let home with this kind of chemo when his counts are .2. Everyone else has to wait until theirs are .05 which can take a week! As I write this Simon is waiting to hear from the doctors if he might even come home tonight after only 2 nights because his counts are .14, so the nurses are just double checking. That would be amazing to have him home so quickly!

Yesterday Simon's work gave me a voucher for a facial or massage or whatever I want which is just amazing of them. They have been ridiculously supportive anyway without doing something like this.

This whole thing has really emphasized how surrounded we are by lovely people, our wonderful family, and soooo many others.

Everyone at church continues to be unbelievably supportive in so many different ways, but especially in prayer.

We have so much to be thankful for I can't believe it sometimes.

He was just told he can come home now. I'm amazed at how exciting this experience can seem at times!

Simon has an appointment at Peter Mac today with the oncologist, Prof. Toner to talk about the rest of the treatment plan (I think only 16 weeks left!). And hopefully he will be able to get some medication for his latest treat... gout! The infection in his left leg doesn't seem to be getting any worse since the doctors at Myer St changed the kind of dressing they put on it.

He has a few questions for Prof. Toner, both of his legs are pretty swollen, there is some clear, hard thing sticking out of the top of the wound in his right leg and some numbness around the wound. He is also hoping to see Prof. Choong who he hasn't seen since he left hospital. The doctors at Myer St have been trying to contact him because they are thankfully concerned enough about the unchanging bad condition of his hands to want to solve it and fix it, but he hasn't been returning their calls which is pretty annoying! They are wanting to run some tests and are waiting to get the go-ahead from him.

We are really grateful for their concern and the hope of tests and a cure. Simon is finding it so difficult and depressing and although Prof. Choong has acknowledged that it is most likely caused from the anaesthetist during surgery, it seems as though Simon has just been discharged and forgotten. Simon wants to punch the anaesthetist and I want to smack him.

Poor Kitty is finding things hard at the moment. She used to love going to kinder but now cries every time I take her and doesn't want to go. Her kinder teacher told me that she has become very withdrawn and just wants to stay with the teachers the whole time rather than playing with her friends like she used to. She has also been asking them alot of questions about what will happen if I don't come back and who would feed Hugo because he can't feed himself if I went away and how would they get to kinder vbecause it's too far for them to walk. I think it started when Simon was in hospital for so long after the surgery. She doesn't want me to go anywhere without her, so I feel pretty sad about that. It's been good having Simon back for these three weeks, but next week he starts the chemo where he is in for 4-5 nights each week for two weeks, so that will be hard for her again.

I am just loving having Simon home with us. Sometimes things seem really hard and exhausting, and it's difficult when he is feeling so sad and I can't help him, but I just can't get over how blessed we are. Exactly 5 months ago today we recieved the news that he had a tumor and a good outcome would be to lose his leg, rather than his life! I was dealing with losing Simon to this, rather than getting my hopes up for anything else.

Sometimes I feel as though I'm being insensetive to him if I'm feeling happy when he is sad. Sometimes I do feel really sad with him, but most of the time I am just trying and feel like I'm only being faux-sad and empathetic because I just can't make the excitement go away. He is very amazing, because I can't imagine how hard it is for him dealing with not being able to do very much at all by himself and he is constantly uncomfortable and very often in pain with his hands, but he isn't constantly complaining like some people might.

This morning at breakfast we were having a boys in the house vs girls in the house competition.
- All the girls in the house can do handstands, the boys can't
- All the girls can run, the boys can't
- All the girls can walk by themselves, the boys can't
- All the girls can jump, the boys can't etc...

Anyway, I will write more if there is anything particularly interesting to report from his visit to hospital today.

Simon went into work yesterday and today from about 10am until 4pm which was really good for him. He has been feeling pretty depressed about everything. Unfortunately the lady in Melbourne couldn't help with his hands as it's more of a neurological problem than carpal tunnel syndrome. So he was left again with no one able to help or tell him exactly what it is or how long it will last, or even if it can be fixed. He felt pretty annoyed that no-one from the hospital had seemed to really care or want to help.

He has been seeing the doctors at Myer St for his wounds on his legs, as they are a little infected and need to be watched closely because of his immune system being compromised from chemotherapy. Today he mentioned his hands to the doctor and she is organising some electro-magnetic tests (I think I have made up that name, but it's something like that...possibly.) and maybe getting a neurologist to look into it. So it's nice for him to again have some hope of help. It's also made a difference for him being back at work, even though he is pretty limited there, it's still nice for him to be doing something.

Eeek! Sorry, it's nearly been a week since I last wrote. It's been a little busy! Simon has been feeling a little down over the past few days. He feels like he could go insane with the carpal tunnel. We are going to see a lady tomorrow who does remedial massage, who may be able to help and if she doesn't, mum has found someone in Ballarat who has been known to help cure this, so at least we have these to look forward to. He has just been feeling so hopeless, unable to do very much for himself at all.

The girls have been asking if he is ever going back to work! And they talk about things that we did "before daddy's leg got sick". It's nice to be able to tell them that although it is taking a long time and there is a long way to go that his leg is getting better. They are excited for him to be able to chase them around and play with them properly again!

We are expecting Simon home hopefully before midnight tonight. He went to Peter Mac to start chemo again yesterday morning and it won't finish until about 10pm. This morning his left shoulder didn't feel as bad as it normally does, but his hands are still as bad as they were. It's amazing how quickly his hair has started growing again, I wonder how soon it will stop growing this time.

He is in a room with three others this time which has been less enjoyable for him, especially as he can't leave his bed because of not being able to drag the machine around while he is on crutches, still it is sooo much better than the 14 day stay last time! He was happy to be able to drive up which makes it easier for him coming home tonight and he was really happy to get chocolate from David this morning for breakfast (it has calcium) as the hospital porridge was so watery. It seems easy at the moment and exciting that after this week, only 119 more sleeps to go till his last round of chemo is finished!

Some pretty good news...

We just got a call from the Doctor at Peter Mac saying that the results of the tests done on the tumor show that the chemo killed 95% of it! This is so wonderful. Apparently 90% and above is a good response and they said we should be really happy with these results. If it was anything below they would have had to change the chemo and it would have gone for 30 more weeks and just not being in the good responder group is a bit scary, but now we only have 18 weeks of chemo to go!

Simon's hands are still just as bad which is annoying him, he is just taking it really easy today. He drove for the 1st time yesterday which he liked because he finds it hard just doing nothing.

I am in a bit of shock, because although it seemed good with tumor shrinkage and scan results, 90% is still high and we weren't sure it would be that good and I didn't want to think about it too much and get my hopes up. I sort of can't believe it! This is just such exciting news and now we have a finish date to look forward to! AAAAHhhhhhh! (big sigh of relief).

Hip-hip-hooray!

He is home today!! (Last night actually). The guy making the cast was on his way into the hospital on Tuesday, so we waited, waited, waited, then eventually went to sleep. Yesterday he said he would be in between 1 and 2pm, so I went up and we waited, waited, waited some more and eventually at 7pm he turned up and we were home about 9.30 last night. So it was a long, long drive for him (cast man) from Dandenong to the city, over 24 hours!

It was weird thinking that Simon was finally coming home, we had almost become used to him just being in hospital even only after 14 days. The kids are pretty excited to have him back. Every day they were asking when he would be back (which I couldn't answer) and commenting on what a long time he was in hospital for this time.

He has a big fat cast on which has to be locked straight when he is walking so it's pretty tricky, but he is slowly getting the hang of it. It's a pretty serious cast but protects his leg if he accidentally puts weight it, so once he gets used to it, it will be really good.

He is mainly resting today, but feeling OK. His hands and left arm are still making things difficult and painful for him which he finds so frustrating, but he is very happy to be home. It's been a nice day.

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!

Friday 28 March

Simon has just come home and had some dinner. Daisy and Kitty tried to stay awake for him, but couldn't and just gave him sleepy, shut eyed nods to his questions and cuddles. We are looking forward to the next week of almost normality and Simon will try to go into work for the week.

Thursday 27 March

Simon has had an OK couple of days, better than last week still. His counts today are .4 so will hopefully be .2 tomorrow so that he can come home. He has an appointment with Prof. Choong at 5.45pm on 10 April to go over the test results and decide when to operate, possibly the following week.

One of the men in his room seems to have a similar cancer to Simon's, and will be losing his leg as a result. We know that this is still a possibility with Simon, but we are very thankful that things seem to be going as well as they can be with his treatment. This is all so amazingly exhausting anyway, I can't imagine how much harder it would be when people are going through this and the lump is still obviously growing and painful.

I am looking forward to having him home again whenever that is. I feel very tired and find it really hard leaving the kids almost all day to visit Simon for an hour.

Tuesday 25 March

He went up to Peter Mac again this morning. After a sleepy day on Saturday we had a good weekend, eating an absolutely delicious and huge lunch at Aunty Mary's on Sunday, then spent Monday eating more good food at our cousin Elke's birthday party in Melbourne. So we were tired, but well fed.

As much as we dread him going away, it's nice knowing that he has about two weeks off after this, before the operation. And they remembered to give him anti nausea drugs with the chemo this time, so hopefully he will have a better week. He was dreading it a bit this week because he found it a bit hard last time not feeling as well. Still no pain in the lump.

Saturday 22 March

It's nice having him home again. We have just tried to do as little as possible today. He isn't feeling too good but was helped by a delicious dinner from Aunty Anna. He is mostly lying down and sleeping on and off. He doesn't feel sick, just really tired. The kids won't leave him alone, they are so excited at him being home!

Friday 21 March

Simon is feeling OK, he did some work yesterday, he just feels a bit tired. We are hoping that he might be able to come home tonight. The drug levels in his blood were 2.8 last night and they need to come down to just 2 for him to be allowed home, we will find out some time tonight.
He just called to say he is packing up and on his way home! Yippee!

Wednesday 19 March

We have just come home from having lunch with Simon. He has been feeling a bit tired and nauseous today. At first he thought that maybe the side effects are acumulative with each treatment. Then they realised he hadn't been given the anti nausea drug with the chemo (even though he had asked the doctor administering the chemo if there should be an anti nausea medicine with it). So that was interesting, a relief to know it wasn't normal though!

He thinks the lump may have gone down even more. I had a look and it is definately harder to notice than it was at the beginning of all of this. I can't tell day to day as much, but it is alot harder to notice. I'm trying not to get my hopes up too much, but praying it is a good sign.

Tuesday 18 March

Not much to write today. It was sad last night thinking about him going again, but it's been a good day today. Daisy, Kitty and I are going to have lunch with him tomorrow and we have all spoken lots on the phone to him. He is feeling fine and playing computer games!

Monday 17 March

We had a pretty nice weekend. Ridiculous heat - bad, delicious meals at McEwan's and Auntie Margaret's - good, very good! His vein is getting a bit better each day, along with his cold. He thinks the lump may have gone down a little bit more, but I find it too hard to tell. He still hasn't felt any pain in it and is able to do a bit of work today.

We are trying not to think too much about him having to go back to hospital tomorrow. It's tricky each time having to keep adjusting to him being gone, then being home all the time, then being gone again! Also having to try and work out how soon to tell the kids he will be going again.

We have just received the appointment times for the tests after these next two weeks of chemo. They are all on Tuesday 8 April at St Vincent's. At 9.30am he has a chest scan, 10am a bone scan and at 4.30pm an MRI for the whole body. I'm not sure how soon after the tests we will know if the chemotherapy is working.

Friday 14 March

We have had a pretty good couple of days. The cough and runny nose are still persisting, but getting a bit better each day. Simon has been doing a bit of work too. We have had a nice evening going to a food fair then on to a kinder picnic. Simon noticed the vein that collapsed with the first round of chemo is getting sore again. Last time this happened he had to get medication for it, so he called Peter Mac and they said he would need to go to the doctor's again, he has just left now. Hopefully it will just be a matter of getting some antibiotics and he will be back again soon. Will write more later if there is any news...
OK, he is on his way back now. His temperature was 37.6 and it is the same infection in his vein so he will take antibiotics for it and it should be fine.

Wednesday 12 March

Well it's slowly getting better! Simon still can't stop coughing and blowing his nose so sleep is still fairly broken, but he thinks that eating chocolate throughout the night reduces the coughing, so at least he's getting something good from it all.

He has been able to do a bit of work yesterday and today for the first time in a few weeks, so that's been great. He still hasn't felt any more pain in his leg and thinks it feels a bit stronger than it did a couple of months ago. So it's alot better here today than it was a week ago. Daisy and Kitty are excited to have dinner with dad in hospital next week!

Monday 10 March

Simon is feeling a little better today except that the cold/cough is driving him (and all of us) nuts. He is coughing and blowing his nose constantly. Tonight Mum cooked us a delicious dinner which was such a treat. And that's about it really. I asked him for some news for this blog, but he couldn't come up with anything.

At least when he goes back up to Peter Mac next Tuesday for the chemo over two weeks, it's for the treatment which doesn't seem to make him feel as bad. And then they will do the scans and the removal of the shin bone and we will know if this has all been working. I feel a bit sick about finding out, but at the same time I can't wait to know. We really, really appreciate your continued prayers and messages of support etc...

Sunday 9 March

Simon is feeling much better today. His cough is still pretty bad and is hurting his back from having to cough so much, but he feels like he is on the way to getting better which is great.

Saturday 8 March

Not much news today. Still just all feeling tired with interrupted sleep. Simon has felt better today than he has all week which is nice, but still fairly unwell and the kids are pretty sick with the cold. We didn't hear what the blood test results from today were, so I guess they're not as low as they were last time when he was called back up to Peter Mac for more tests. Not sure if that's good or bad or doesn't really matter? We have spent the day doing as little as possible and think we will just hibernate for the long weekend.

Friday 7 March

It's been a tiring day. Simon is still pretty unwell. I guess his blood counts will be low (he has another test tomorrow which will tell us how low) and that makes him feel worse. He still feels bad with the cold and has spent most of today and this evening sleeping. It's sort of lonely having him here but we don't really get to talk much and seeing him feeling so sick is sad. It will be nice when he's feeling a bit better, maybe by next week.

Thursday 6 March

Well I felt alot better today thankfully, but poor Simon had a bad day. He drove up to Melbourne to give a presentation for work, but just felt too unwell, so he had to cancel it. Fortunately he was able to pick up the prescription for the cream for his ulcer while he was up there, which is great because it was very painful for him last night. He didn't get much sleep at all, which can also be a side effect from the chemo.

He spent this afternoon in bed with a really bad sinus headache. He hadn't been taking anything for it because when they discharged him last week they told him not to even take panadol as it could mask a fever/infection. But he was just feeling so bad, so I called Dr Franco at Peter Mac, who has been really helpful and he said he doesn't believe in not taking anything for this as a fever would still get through. So Simon is feeling the best he has all day after some sudafed and panadine.

He also had a little pain on and off for a couple of days in the tumor earlier in the week, but said it was a different pain than usual. He may have felt something similar after the last round of this particular chemotherapy, so we're praying it's the drugs killing the tumor.

He said I'm not allowed to put any more about him having womanly emotions, so I won't (tonight). He has been very tough today (seriously). I love him being home with us.

Wednesday 5 March

Simon is feeling a bit better today which is nice. He was pretty miserable for the past few days and felt like he was never going to get better! He has an ulcer at the back of his mouth which is a bit sore but the hospital has advised him on what to do, they gave him a mouth wash and he can pick up a prescription for pain killers if it gets bad.

It is all a bit exhausting at the moment and it's when we feel like this that the rest of the year or however long this is for, seems overwhelming. We both still find it a bit of a shock when we think about the fact that he has cancer. We are both very, very tired. Simon is like an emotional woman today and so am I, so that's a treat! This feels like the last time after this particular treatment, so it helps knowing it passes, we will probably just be a little more tired each time I suppose. It's OK, just tiring.

Monday 3 March

Today has been OK, I'm feeling a bit better with the cold, just very tired. unfortunately Simon isn't feeling too good with his cold. The hospital has said to take his temperature every 4 hours, if it gets above 38 he will have to be admitted to Peter Mac for antibiotics. He is sleeping alot and his temperature has been slowly creeping up, but will hopefully be OK. He has a blood test tomorrow to see what his counts are like.

Sunday 2 Feb.

Simon's been feeling pretty good, maybe a bit better than last time because the anti-nausea tablets were stronger and the hiccup tablets worked so that he only had them on and off for the first night. He's been able to do a bit of work most days which he enjoys and he still hasn't felt any pain in his leg.

Unfortunately we all have colds, so we're feeling pretty tired and run down. His appetite is pretty non existent and he only really feels like eating plain food. We are exhausted but love having him home for the next two and a half weeks as long as he doesn't get a temperature with this cold.

Wednesday 27 Feb.

Simon is on his way home now, a few hours earlier than we expected which is great! He is feeling a little tired and doesn't have much of an appetite, but otherwise he's OK so far. He's been able to do a bit of work in hospital.

We will be praying he doesn't get sick while his counts are down. It's really nice to be having him home for the next three weeks, partly so I can stop sleeping beside a cricket bat for protection.

Tuesday 26 Feb.

He is back in ward 9 again. He drove himself up this morning and has his own room which is pretty good. He is feeling fine and they are going to give him stronger anti-nausea drugs this time to try to stop it. He will also try to get some drugs to stop those crazy hiccups (apparently they exist) that he had for days after the last time and he should be able to drive himself home tomorrow night!

It is better this time, having some idea of what this treatment and the following weeks will be like. He hasn't felt any pain in his leg for about a week which is supposed to be a good sign, again no guarantee but obviously better than increased pain. It's hard not to think about how much harder it must be for people who don't have any positive signs during these times.

Saturday 23 Feb

Yippee! Simon came home last night which was such a surprise. It's been a nice week. We are tired but very happy. He goes in again on Tuesday for an overnight stay, then home for 3 weeks. It is very, very nice having him home with us.

Thursday 21 Feb.

It has been another good day. Simon had a great time playing poker and air hockey with the bald boys last night. He also had a feast of giant vegan tim-tams (yes, it's true) and delicious vegan chocolate cake from David. I went up and had lunch with him today. We sat outside the hospital for a bit and noticed how people stared, maybe because of Simon's big drip trolley he has to drag around, maybe because he's bald, or maybe because they saw me fall over yesterday, I'm not quite sure.

Tomorrow evening Daisy, Kitty and I will go up together and have dinner with him which we are excited about. Also, it seems as though the lump on his leg isn't as big as it was. Simon mentioned this to the doctors and they said it doesn't guarantee anything, but it could be a good sign and it's obviously alot better than if it was getting bigger. Without getting our hopes up too much, it is pretty exciting. It could also mean that it is more likely to be the osteosarcoma, the 'good' kind, rather than that rotten mfh of bone, which was not so good, so we are praying for this.

Wednesday 20 Feb.

He has had another good day today. I was able to go and have lunch with him, which went too quickly! He seems to be doing better than me, I fell over outside the hospital as I was carrying coffees for us, and the nurse had to get dressing and a band aid for me and I think she was thinking how pathetic I was because I don't have cancer or anything and I was trying not to faint and cry. Right now he is playing some board game with nine other baldies (they all shaved their heads). So I guess he will expect any future visitors to do the same.

Tuesday 19 Feb.

The weekend went pretty quickly, it was pretty exhasuting. It was hard trying not to think too much about him having to go back up again today. He drove up this morning after a sad goodbye.

He is pretty happy because he is in a room by himself at the moment and there is more room around his bed and only two other beds in there if it does get full. There were 3 others in the last room. The drip is in at the moment and they will start the chemo at about 2pm.

He is excited because a group of guys from church are going up to play games with him tomorrow. And he is able to do work this week, so he is feeling pretty positive.

Saturday 16 Feb.

He got the all clear to come home this morning, so David and Debbie picked him up (thank you so much). It is very exciting to have him home. We (Daisy, Kitty and I) shaved his head, as it is starting to fall out a little faster, not too obviously though.

We had a nice relaxing day around the house, then took the kids to the park in the evening and had a picnic dinner. He feels pretty tired as he's not used to doing anything! He will be back up in Peter Mac on Tuesday for another round of this chemo, so at least this time we will just expect him to be in there for 5 nights. Yesterday was pretty hard, after an exhausting week but probably made today even more exciting. It is very lonely without him here, I'm so glad to have him back for a bit.

Friday 15 Feb.
He got the results and they are .06, so maybe tomorrow.

Friday 15 Feb.

Friday 15 Feb.
Simon will be getting another blood test this evening to see if he can come home. It all seems a bit exhausting at the moment. I'm not sure whether to visit him or wait and see if he can come home, then wonderful David will drive up to get him. I find it hard making decisions anyway. The kids are desperate to see him. Simon is finding it really hard being up there so long and not knowing when he will be home (but was very grateful for another coffee drop by Carolyn!).

Days like today make it hard not to feel overwhelmed by the fact that this is what we need to get used to for the rest of the year. Nothing even bad has happened. I just miss him and am tired and don't like having to organise things and not be with Simon and Daisy, Kitty and Hugo as much as I would like. I'm glad I don't feel like this all of the time!

more from 14 Feb...

Thursday 14 Feb cont...
I just got back from the hospital, unfortunately without Simon. It's not as frustrating as it seemed last night and this morning though as the results aren't low enough for him to come home. There isn't any way of telling how soon that will be. They will just keep testing each day. His white blood count shot up to 21 (normal range is 2-7) so they were concerned he was getting an infection and his body was fighting it. They couldn't see any other signs of infection, so think his white cells are reacting to the chest port being put in.

He enjoyed having visitors today, as he finds it pretty hard being in there.

Hopefully he will get a good night sleep. It's been pretty interrupted lately as one of his room mates has a snoring, burping and flatulance issue, so that is interesting for everyone.

Tonight mum looked after the kids (thank you so much again mum) while I took dinner up and Simon and I had a romantic valentines/anniversary dinner. (It wasn't romantic, but we had a really nice time).

It's pretty sad not having him home, but nice to look forward to when he is. I still can't get over how much everyone is willing to do for us. It is very amazing.

Thusrday 14 Feb.
Well, we are still waiting! At 11pm last night we found out that the afternoon nurse hadn't told the night nurse that we were waiting on results for Simon to come home. It was pretty frustrating, because she knew how important it was. We had been half hoping he would have been able to come home last night. This morning when I called him a nurse had just told him that he wouldn't be able to come home until Friday now, but didn't give a reason. It was hard not to go to the hospital and slap them. It wouldn't be so hard if they didn't keep changing the details. It all just seems so inconsistent. We would rather just be told Friday in the first place and not get our hopes up, or at least not have each person tell us different things.

Simon is feeling really good health wise, just frustrated. We are waiting on the latest blood test now. It turns out the one last night (when we got the results mid-morning today) were .3 and it needs to be .05. So he wouldn't have been allowed home then anyway which makes it less annoying that they weren't even checking for the results last night. It's hard not being able to tell the kids when he's coming home too. I had told them that it would probably be today, but we are learning that we just can't take what they say too seriously. Overall, the staff are very lovely, we are just learning to be patient. Again, we are very thankful this is the hardest thing we are having to deal with!

Wednesday 13 Feb.
We had a really lovely time last night. We sat in the family room at the end of the ward where Daisy and Kitty coloured in, then we all took it in turns of playing air hockey, or hair ockey as Daisy calls it. It was nice all being together (minus poor Hugo!) having fun.

He got the results of the methatrixate count left in his blood last night at about 10pm. They were expecting it to be around 12 (not sure what it started as) and it was already down to 3! It has to be .5 for him to come home again. They were pretty surprised to see it this low and had only known one other patient to have it so low so quickly. So that's exciting. As I write this I'm waiting to hear the next result, should be around the same time, to see if he can come home soon. If it's close tonight they will do another test in the morning and he might be able to come home then. It's pretty lonely at home without him and I can't stop eating chocolate.

It's been so good having Jane here when I wake up during the night, knowing she's just down the hall. On the 1st night she stayed when we had to leave at 5.30 am, we came back 10 minutes later because Simon had forgotten his wallet, so he snuck in the side door. Jane heard this and assumed it was a burglar so looked around her room for a weapon, found a can of aeroguard (to spray in the face) and searched the house. Fortunately Simon had left, so he was safe. Poor but very good and brave Jane!

This round of chemo has been a lot better. Simon has only felt a bit tired and sick but feels normal today, so it makes the next methatrixate treatments seem less daunting, apart from the lethal dose part of it.

Tuesday 12 Feb.

- Tuesday 12 Feb.
He is feeling a bit nauseas and tired today, but not too bad. He was able to eat some breakfast and forced himself to have a bit of lunch. Carolyn surprised him with a decaf soy latte which he was very excited to get! (Thanks so much Caz).
It will be nice visiting him with Daisy and Kitty tonight. Apparently his acidity levels are good. I'm not sure what it means, but it's better than being bad!

Round 2 of chemo...

Monday 11 Feb.
We were up at 4.30 this morning to get ready for the 7am appointment at Peter Mac to get Simon's port put in his chest. We waited for about 4 hours, then he went off to surgery. Once more all of the staff were so friendly. I sat in the waiting area listening to different people talking about their various cancers. It is pretty interesting going through this in a hospital where all of the patients are affected by cancer, seeing all kinds of people living with cancer. It is a surprisingly happy hospital.

Just over one hour later a person from surgery called my name, I waved and she came over and leant towards me, for about 2 seconds I thought she was going to tell me something had gone wrong, but she just told me that he would be going straight up to ward 9 to be admitted for chemo, so that was abit of a relief! She probably likes to scare people.

The room mate this time, Jeff is quite the chatter box. He's pretty nice though and has a kind of sarcoma that is usually found in women, and has only a 1 in 4 million chance of a man getting it, so he must feel special.

The nurses were lovely again. We were allowed to go and have a coffee before he got hooked up to fluids in preparation for chemo. Carolyn came in and we had a lovely time at a cafe next door. Then back for chemo. The chest port is a wonderful invention. I can't go into too much detail because it is rather disgusting. It's inside his chest and hooks into part of the muscle of his chest, then they stitch it over so it doesn't flip over inside him. It has a metal bit to stop the needle going too far, and I think I was fainting for the rest of the information session on it. Anyway, it basically means that for blood tests or any needle, it just goes through this one special port.

I left soon after this to get the kids from mum. It was sad leaving. Tonight Daisy wanted a "huggle" from daddy, so he said goodnight to them on the phone. Simon felt pretty sad hearing how they missed him. Daisy is desperate to visit him every day. She asked why he couldn't have the medicine to make his leg better at home. We will miss him not being here, but we prayed for this to be a nice day (wondering if that was too ridiculous) and it was (ridiculously nice!).

Now he will be in for most of the week until the chemotherapy drug leaves his body. Fortunately lovely Jane is staying here each night until he comes home so that the boogey man doesn't get me.

- Saturday 9 Feb.
Had such a delicious vegan breakfast at Dave and Deb's. They are such clever little things. Even the Lakehouse at Daylesford didn't have as much vegan variety as them! While we were lounging about reading newspapers there, Simon pinched some stubble on his chin and it fell out. Then he tried a bit on his head and it fell out. We knew it was between 2 and 5 weeks after the first round that it starts to happen (it's 3 weeks now). Part of us had thought maybe it wouldn't happen, but seems like it is.

It's obviously not the worst thing that can happen, just something that makes it seem real again. I guess when it all comes out he will then look like he has cancer. I wonder if he will want me to draw crazy eyebrows on him and tie pretty ribbons around his head like some people do with bald babies.

- Friday 8 Feb.
Home again! We had such a nice time but it is really, really nice to get the kids (who had a great time) and come home again. Over the weekend we will be getting ready (not sure how) for Monday when Simon goes to Peter Mac at 7am to get a drip thing inserted into his chest for the chemo so it doesn't kill all of the veins in his arms.

Then he will have the next chemo drug, methatrixate for 12 hours and will have to stay in hospital for about 4 nights. It seems a little scary because they will give him a lethal dose of this, then an antidote within 24 hours so it doesn't kill him. It helps to know they do this to people probably every day, but it doesn't make me feel that good! Also, we're not used to spending nights apart, so feel a bit sad about that, but thankful that we have access to these horrible but hopefully effective drugs.

- Thursday 7 Feb.
We go up to Daylesford for a night and the kids stay at Grandma's. We have a really happy time eating lovely food and not being responsible for anyone! It is our first night away from the kids since we've had kids - apart from being in hospital having them!

- Wednesday 6 Feb.
Simon is feeling good all week and has another games night with the boys and has been able to be doing work most days.

- Sunday 3 Feb (Happy Birthday Carro!)
I was going to go up with Simon, but then we thought he wouldn't be long and it was Kitty's first day at Sunday School, so I took her instead, only to find out that if he had needed platelets or a transfusion he wouldn't have been able to drive, so now I feel like meany wife. But the results show his counts are climbing which is really good.

- Friday 1 Feb
Simon is pretty tired today. He has another blood test today and at 9pm a doctor from Peter Mac calls to say his blood count is as low as it can be and his platelets are dropping so he needs to come up on Sunday for more testes incase he needs more platelets or a transfusion. This seems scary but when I call Carolyn to tell her, her first response is "good" (she used to be an oncology nurse). So either she was being mean, or it means the chemo dosage is right for Simon.

- Thursday 31 Jan.
Simon is again well enough to do some work then play some board game in the evening with the boys.

- Wednesday 30 Jan.
The antibiotics seem to be working slowly and Simon feels well enough to work (from home) for a few hours which is really great.

- Tuesday 29 Jan.
He is still feeling bad and his arm is really sore where the drip went in and it's quite swollen. He goes in for a blood test (he has 3 of these inbetween treatments) to check his platelets and blood count. Then he calls Peter Mac to see if he needs to do something about his arm. They say it sound's like a clot and he needs to see someone.

Dr Sheehan is really good b/c when I ring him to see if he can see him (he is the one who found this thing in the first place) it's his day off, but he calls back 10 minutes later and has got us in to his fully booked surgery with his replacement doctor who sees Simon straight away and they put a note on his file saying he can be seen any time, even when they are full. The doctor is really good and talks to a Peter Mac doctor to give the right antibiotics. It sounded scary that he had a clot. I'm not sure if it was or not.

- Saturday 26 Jan. - Australia Day
He is feeling pretty bad again today and continues to do so over Sunday and Monday.

- Friday 25 Jan. (Happy Birthday Gordon!)
It seems he is becoming a woman. Today he is crying at anything. He is asking for advice on how I cope when I feel like this. I suggest chocolate and a sleep. I am wondering what the next side effect will be. Probably makeup I expect? It feels pretty hard at the moment, especially when we think it's only been a few days and there are months ahead of this. It's nice that people are dropping in. We love that since this all happened people are beginning to just visit. If someone asked if we were up to visitors we may have said no, but when they just turn up, it turns out to be pretty nice.

- Thursday 24 Jan.
Poor Simon is like a pregnant woman. He feels pretty nauseas and it's scary if he vomits because it (the vomit) will be toxic for a day or two after the chemo. Fortunately he doesn't actually vomit, just feels like it a lot. He finds it really hard to eat and is really tired. I get lots of sympathy for having to cook while I had morning sickness! He had hic-cups for about 24 hours which is a ridiculous side affect. It was funny for a bit and then not. A nurse comes to give him an injection. She is friendly and is talking about us working out making decisions about carrying on medical treatment if he is unable to make decisions for himself. So that wasn't very nice. We smiled politely and haven't made any decisions.

- Tuesday 22 Jan.
Up to Peter Mac for 8.30am heart scan to make sure his heart is strong enough to cope with chemo. The guy doing the scan is really lovely and reassuring. Then he is admitted to ward 9 to start chemo.
We feel a little anxious waiting for the chemo to begin. Simon is hooked up to the drip getting different things in preparation for it. He is in a room with one other person, a lovely man called Stan. He is a perfect room mate. Really friendly but doesn't talk the whole time. His cancer is terminal.

At about lunch time the nurses come in and put on protective clothing as they begin the chemo. Simon and I are sitting there waiting to see if he will get a reaction straight away. It just feels cold for a second where the drip is, and that's it. It goes in for one and a half hours on Tuesday and the same on Wednesday with fluids and stuff going in for the rest of the time, until 10pm Wednseday night. The hardest part was that the time for checkout kept getting later and later, so we couldn't complain! (Mum could though as she was waiting in the car for over an hour with the kids trying to get them to sleep).

- Friday 18 Jan.
Had Daisy's 5th birthday today with a little party. Trying to keep things as normal as they can be with all of this going on. Simon played Simon say's (at the party, not just by himself).

- Thursday 17 Jan.
A group of doctors met on Wednesday and decided it was either osteo sarcoma which responds well to chemo, or mfh of bone sarcoma which doesn't! We are obviously praying it is the osteo one. Prof. Toner gave us a rough plan of what the treatment plan will be. 10 weeks of various chemo, then remove the shin bone affected by the tumor, followed by 20 - 30 weeks of chemo again. He then listed off various possible side affects of chemo. This was pretty overwhelming initially, because now it wasn't just the cancer, which seemed more than enough on it's own!

There were things like the possibility of dying from a simple old cold, sometimes leukemia can be caused by chemo, infertility, tinitis (ringing in your ears forever), pins and needles in hands and feet and other things I don't remember. It seemed pretty daunting. We sort of needed to try not to think to much about them all. So again, after about one day of dealing with this, it seemed alright again.

- Tuesday 15 Jan.
Had our first appointment with Prof Toner (again, amazing to have expert in Sarcoma chemotherapy one hour away). Not able to tell us too much because still unsure which type of sarcoma it was.

- Saturday 12 Jan.
Had a lovely day at Anglesea beach with Fiona and the kids.

- Thursday 10 Jan.
We had an appointment with Professor Choong. It was amazing to be diagnosed with a rare form of cancer and to have one of the top specialists in sarcomas, in the world one hour down the road. We were having constant reminders of answered prayers.

It was scary sitting in his office as he looked over the results. He confirmed it was a sarcoma, but they weren't sure what kind it was because there was no bone tissue found in the biopsy. They were pretty sure it was one of three kinds (there are about 50 kinds of sarcomas). He told us that Simon would have chemotherapy, then an operation to remove the shin bone affected by the tumor, followed up by a bit of chemotherapy. He also told us that the success rate was about 75%. This was better news than we had recieved on Friday 21st of December, but not as good as we thought we recieved on Thursday 3rd Jan. We thought "unlikely to die from it" meant more like a 95% success rate or something. I guess we had also started to think that it wasn't as likely to be a sarcoma from what the doctor had said. Still, we were thankful for this positive news and after about one day of not feeling too great, started to feel OK again.

- Wednesday 9 Jan.
Fiona arrived from England for her first trip to Australia. This was REALLY exciting. It was just great to have her here for two weeks, especially knowing that he wasn't riddled with tumors! It went too quickly.

- Thursday 3 Jan.
At the end of the tests for that day Marika told us that a doctor was going to come and talk to us. We were'nt sure why and wondered if it was bad news. We had been able to see the scans as they were happening which was weird. Simon hadn't wanted to in-case he was riddled with tumors or we would see things that we would read too much into, but Marika assured us it would be OK to see.

We had seen things that looked the same color as his tumor, so thought it had possibly spread, so prayed like crazy while we waited for what seemed like 1 hour but was about 5 minutes for the Doctor who was able to tell us that there were no signs of other tumors and the shading we saw in his other shin was probably arthritis. This was amazingly great news. Up until this moment we had really thought because of the aggressive nature of sarcomas, that it would be everywhere. The Doctor told us that it would be unlikely that he would lose his leg or die from this. She even thought that the activity shown in the scans meant it may not even be a sarcoma. It seemed like the best news we had ever had!

- Wednesday 2 Jan.
The tests finally began at St Vincent's hospital. Marika, the lady doing the tests was really, really lovely. A perfect lady to be doing these tests and helping us to feel at ease. I was allowed in for most of the tests. Over 3 days he had chest x-rays, bone scans, tissue scans, and a biopsy.

- Had a nice few days over new year with friends and family. Our wonderful cousin Stephen (a doctor) was able to speak to a specialist in Melbourne and told us that things had changed alot since he and Dr Sheehan had last learnt about Sarcomas, that now losing a limb was a last resort. This was very lovely news to have while we waited for tests etc...

- Tuesday 25 Dec.
Again amazed at what a lovely day we had. Went up to McDiarmid's for Christmas lunch and dinner with everyone. Carolyn and I kicked a football at Simon, trying to get a goal, but not.

- Monday 24 Dec.
Had scooter races at Sparrow Park, then Christmas Eve camping on lounge room floor, watched Drummer Boy with kids then when they fell asleep (not until 10.30) watched It's a wonderful life which we watch every year. It was amazing that we were having really nice times. We had moments of overwhelming sadness, but for anyone who knows what a boo-hoo baby I am even when things aren't actually sad, this was certainly weird and an obvious answer to prayer. Meanwhile Simon of course played on the cancer "Ooh, I can't do this, oooh I couldn't possibly do that" (said in high pitched voice).

- Sunday 23 Dec.
Overwhelmed at church at how blessed we are to be surrounded by such amazingly lovely people.

- Saturday 22 Dec. Simon's 34th birthday.
Well, my presents to Simon, a book and a pair of flip-flops (thongs) seemed a bit cruel, because if he didn't die, he was only going to have one leg, and the title of the book that he'd wanted was "Heaven and Hell, what happens after death" so that was interesting! We managed to have a better day than we thought we would. We had a fun morning playing with the kids and had a yummy dinner at mum's with the family. The nicest thing was the love and support shown from friends and family. We had so many calls, letters and emails from people, prayer meetings organised, endless offers of help, and all of them genuine. We felt (and continue to feel) very, very blessed.

- Friday morning 21 December.
I was at the hairdresser when I noticed I had three missed calls on my phone from Simon. I called him back and he asked where I was as he had finished work early for the Christmas break. I told him I was nearly finished and would meet him down the road at mum's as she was looking after the kids. I didn't suspect anything, I was just excited to see him waiting across the road when I got out. As we hugged I realised something was wrong and he told me he had to go in to the doctor as the MRI had shown the bump was actually a tumor. It was a bit of a shock. A couple of hours later we were at the doctor's. As we walked in, before we'd even sat down he started saying the news wasn't too good. Most of what he said seems a bit of a blur, but he kept saying the word "sarcoma". I had never heard of this, so made him write it down. He said it is the most aggressive form of bone cancer and a good outcome would be to lose his leg rather than his life. Simon kept suggesting they take his leg off now, Dr Sheehan told him he was being irrational. The next appointment was with Prof. Choong at St.Vincents in Melbourne on the 10th of Jan. This seemed too long for Simon and he again suggested they just take his leg off now! I didn't think it seemed too long, until I was actually waiting. We left the doctor's with heavy hearts and a piece of paper with the word sarcoma scribbled on it. We sat in our car outside the doctor's, in the rain for quite a while. Wondering what to do next. We cried a bit, we prayed alot. It was pretty sad and scary calling people and telling them, especially Fiona (Simon's mum) in England. At this time it seemed more likely that he would'nt make it. We were supposed to be going out for dinner that night for Simon's birthday (the next day). So we tried, we sat in the restaurant looking at the menu and decided the songs the pianist was playing were too sad, so we went organic food shopping instead and had a surprisingly nice time. It took about two days of lots of ups and downs to start to feel OK and begin dealing with it all.

The beginning...
OK, I am going to try to be organised about this so that people can be up to date on what's happening with Simon and the cancer etc... I apoligise in advance if I turn out to be not so organised.

Well it all really started back in October at our church's annual fundraising footy match. Simon, being so good at footy (!) was of course playing and while quite possibly running away from the ball, someone's head (thankfully) fell on his left shin. It didn't bother him too much though, as he also hurt his back, so was busy crying about that. A couple of months later his shin was still a bit sore and a bump that Simon only noticed after the footy match, was still there so he went to the doctor to check it out. The doctor wasn't too concerned as bruised shins often take a couple of months to heal, but advised him to have an ultra sound and MRI to rule out bone cancer.