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!