Friday 16th December 2011
Luke is doing really well. His chemo cycles have settled down and they appear to have the dosages under control. Luke had a two week break between the end of the last cycle and this new cycle starting. This was due to Christmas falling at a time when chemo was needed in hospital and also to work around when we will be in New Zealand. We saw Dr D'Rozario a few weeks ago and he is really happy with how Luke is going. He said he continues to remain in remission and basically needs the chemotherapy treatment to keep him that way. He will be on chemo until about May 2013.
Last Sunday Luke started a new 3 month cycle. He normally starts this with a lumbar puncture to inject chemo into the spinal fluid. A doctor administers the lumbar puncture via imaging as they ran into trouble early on in his treatment doing this manually as too much scar tissue had built up. Unfortunately the imaging machine broke down last week so this couldn't be done on Monday, instead it had to wait until Wednesday. Luke said the Dr had to try a few times and he was quite bruised and sore the next day so didn't go to work. Other than that he has been feeling okay.
Luke finished his exams at the end of November and found out his results today. He got two high distinctions and two distinctions so he's doing fabulously at Uni. Luke has been working part time at DAFF whilst at Uni. His contract was due to expire just before Xmas, however they found some money in the budget to keep Luke on, so he is currently working full time during the Uni break and will work around his Uni timetable once it is set next year. The current contract is valid till the end of June. So that will boost his bank balance.
Amy had her Year 10 graduation today. It's sad to think that my babies have both finished high school. She also had her formal on Tuesday night at the Boathouse. She looked gorgeous in a lovely bright blue short strapless dress. All the girls looked so grown up although lots had trouble walking in the big heels they had on!
What a busy month it's been. Mum & Dad have moved into the Goodwin Retirement village. We paid an extra deposit amount last Thursday which gave us access to the keys and also the ability to move Mum & Dad's furniture into the villa over the weekend. Stephen & Beverley came down from Gosford to help with the move. The only proviso of having the keys was that Mum & dad could not sleep there overnight until settlement. This took place yesterday so they had their first official night in the villa last night. It has been really hard going - packing, culling and now unpacking at the other end. We are trying to find places for everything but we still may have to cull a bit more. The villa is great and once we have it set up properly it will be a lovely home for Mum & Dad. I really think they are going to be really happy there and the social interaction with the other residents and activities offered at the clubhouse will be really good for them. The only hiccup with the move has been with the phone connection. The provider they were with for their phone and internet advised us at the last minute that they were unable to provide the connection. So we've had to go to another provider and therefore Mum & Dad will be without a phone or internet/emails for another few weeks. They do have their mobile phone and our email to stay in touch with the world.
I cannot believe Christmas is next weekend. With all the work moving Mum & Dad, Christmas has just crept up on us and I'm really not very organised at all. We are heading off to New Zealand on the 16th January for a few weeks and we've finally planned the itinerary and booked all of the accommodation. We now just need to think about what we are going to do at each of these places.
I'm not sure that I will get around to doing a blog entry before we head off to New Zealand so I'll probably update with all our news of the holiday in February.
So I'll take this opportunity to wish everyone a very safe and happy Christmas and all the best for the New Year. xx
Thursday 3rd November 2011
Well since the last blog, Luke's liver function tests settled down so he has commenced taking a full dose of Methotrexate on Sunday 23rd October. Luke got very close to being neutropenic (at risk of easily picking up an infection) in the week after taking the Methotrexate. I think his system went into shock and was like, 'what are you doing to me?' because he hadn't had it for so long. He has bounced back this week but his liver function tests are high again. Not too bad, but enough to keep our eye on. He has been feeling a bit tired and lethargic however I think it's a combination of chemo and full time work/study.
We were really proud of Luke. He received a Dean's Excellence Award for Semester One at Uni for achieving a Grade point average of 6.5 or above. (I'm not quite sure how the grade points work - but it sounds good!) Hopefully he can keep the good marks going during this semester. He has exams starting in a few weeks so he'll probably have to take a few days off work to study.
It was Luke's 19th birthday on the 28th October. I met Luke and Murray in the city after they'd finished work (Amy ditched us to go to a concert with her cousin) and we went out to dinner and the movies. We went to see 'In Time' with Justin Timberlake. It was quite good. Then the family all come over for dinner on Saturday night.
Mum & Dad's house went on the market last week. They had 3 people come through for private viewings before an open for inspection on Saturday. There were 17 groups that went through the house. Apparently parking in the street was very busy and Gabby, their agent (and Riley friend), was very pleased with the turn out. Then on Monday, 2 interested parties who had already seen the house came back through for another look. On Tuesday they accepted an offer that they are really happy with.
So it only took a week to sell! A great outcome and hopefully all being well with the legal side of exchange of contracts and settlement they should be able to move into their villa mid December. So another busy month lies ahead as we start packing boxes and getting rid of more rubbish.
We were really proud of Luke. He received a Dean's Excellence Award for Semester One at Uni for achieving a Grade point average of 6.5 or above. (I'm not quite sure how the grade points work - but it sounds good!) Hopefully he can keep the good marks going during this semester. He has exams starting in a few weeks so he'll probably have to take a few days off work to study.
It was Luke's 19th birthday on the 28th October. I met Luke and Murray in the city after they'd finished work (Amy ditched us to go to a concert with her cousin) and we went out to dinner and the movies. We went to see 'In Time' with Justin Timberlake. It was quite good. Then the family all come over for dinner on Saturday night.
Mum & Dad's house went on the market last week. They had 3 people come through for private viewings before an open for inspection on Saturday. There were 17 groups that went through the house. Apparently parking in the street was very busy and Gabby, their agent (and Riley friend), was very pleased with the turn out. Then on Monday, 2 interested parties who had already seen the house came back through for another look. On Tuesday they accepted an offer that they are really happy with.
So it only took a week to sell! A great outcome and hopefully all being well with the legal side of exchange of contracts and settlement they should be able to move into their villa mid December. So another busy month lies ahead as we start packing boxes and getting rid of more rubbish.
Monday 10 October, 2011
I've been very slack with doing the blog. Sorry.
As I mentioned last month, Luke's liver function tests have been really high again and his chemo was put on hold. He ended up having an ultrasound on his abdomen to make sure his liver and other organs were all okay. They were, so that was a relief. Luke was put on hold from having chemo for 3 weeks and after blood tests showed his liver function tests on the way down he recommenced chemo on Thursday 29th September. However the doctors decided that as Luke's liver doesn't appear to be coping with the toxicity they would drop Luke's Mercaptopurine to 33% of the full dose. So now he is on 50mg per day. He is having weekly blood tests to see how the levels go, and if all is okay in 4 weeks he will recommence a full dose of methotrexate. His liver function test levels are still a little high but better than they have been, so we'll wait and see what happens in a few more weeks time. He has still been having his monthly intravenous injection of Vincristine and taking steroids throughout the cycle.
Luke had a busy few weeks of university, with lots of assignments due all at once along with a group presentation. He managed to get through it all and had a mid semester break this week, however he still had work at DAFF. We've been lucky in Canberra as we've had 2 x long weekends in a row. So Luke has had lots of sleep ins.
Murray is currently between jobs. He left ActewAGL, who he has been with for nearly 15 years. It was a big step to take after so long, however he felt it was time to move on. He will join the Australian Public Service and work for AirServices Australia as a Senior Procurement Specialist. He starts tomorrow, 11th October, so I hope he enjoys it and it's all that he wants. He's had a week holiday between jobs, however it hasn't been much of a holiday for him as he has worked his butt off. I'll tell you why now....
Mum & Dad are moving into a 2 bedroom plus study villa (independant living) in the Goodwin Retirement Village at Monash. It came down to me sitting them down and saying they had 3 options as I saw it:
1) Stay where they were and fix a few things up and get a full time gardener, as they are on a corner block and it is far too large for them to maintain
2) Move to a townhouse with a smaller garden
3) Look at the retirement village which is literally a few minutes from where they currently live.
I went with them to inspect the retirement village and they loved it. The villas are brand new and they could pick the villa they wanted off the plan as they are currently under construction. There is a fantastic clubhouse with a cafe, theatre, billiards room, crafts room, gym and lots of activities run by the village including day trips. Everyone was so friendly and came up to us saying "are you thinking of moving in"... when we said yes,they replied, "it was the best thing they ever did and they wished they had done it years ago". So they came home and started picking out a villa and now it's full steam ahead. Originally they were told the villa would be ready to move into in late Jan/early Feb, however we have just been told it could be mid December. So it's all hands on deck to get their house ready to be sold. Hence why Murray did not get to have a week holiday as he has been working really hard doing all sorts of fix it jobs. I've also spent every spare minute over there painting and cleaning. Amy has also been a great helper with painting outside, and Luke helped move computers and set them up in another room. Poor Mum and Dad are having to downsize dramatically!! Talk about a lot of stuff that needs to go!
We are hoping that once the building inspection (residential report) is completed next Monday that we can get the house on the market by the end of October, early November. So it has been a busy couple of weeks for everyone, and will remain so for the next few months. I really think this is going to be the best thing for Mum & Dad as they will be in a great community of people, with a lot of social interaction and won't have to worry about maintaining a house and large garden.
That's all our news for now. I'll update next month.
As I mentioned last month, Luke's liver function tests have been really high again and his chemo was put on hold. He ended up having an ultrasound on his abdomen to make sure his liver and other organs were all okay. They were, so that was a relief. Luke was put on hold from having chemo for 3 weeks and after blood tests showed his liver function tests on the way down he recommenced chemo on Thursday 29th September. However the doctors decided that as Luke's liver doesn't appear to be coping with the toxicity they would drop Luke's Mercaptopurine to 33% of the full dose. So now he is on 50mg per day. He is having weekly blood tests to see how the levels go, and if all is okay in 4 weeks he will recommence a full dose of methotrexate. His liver function test levels are still a little high but better than they have been, so we'll wait and see what happens in a few more weeks time. He has still been having his monthly intravenous injection of Vincristine and taking steroids throughout the cycle.
Luke had a busy few weeks of university, with lots of assignments due all at once along with a group presentation. He managed to get through it all and had a mid semester break this week, however he still had work at DAFF. We've been lucky in Canberra as we've had 2 x long weekends in a row. So Luke has had lots of sleep ins.
Murray is currently between jobs. He left ActewAGL, who he has been with for nearly 15 years. It was a big step to take after so long, however he felt it was time to move on. He will join the Australian Public Service and work for AirServices Australia as a Senior Procurement Specialist. He starts tomorrow, 11th October, so I hope he enjoys it and it's all that he wants. He's had a week holiday between jobs, however it hasn't been much of a holiday for him as he has worked his butt off. I'll tell you why now....
Mum & Dad are moving into a 2 bedroom plus study villa (independant living) in the Goodwin Retirement Village at Monash. It came down to me sitting them down and saying they had 3 options as I saw it:
1) Stay where they were and fix a few things up and get a full time gardener, as they are on a corner block and it is far too large for them to maintain
2) Move to a townhouse with a smaller garden
3) Look at the retirement village which is literally a few minutes from where they currently live.
I went with them to inspect the retirement village and they loved it. The villas are brand new and they could pick the villa they wanted off the plan as they are currently under construction. There is a fantastic clubhouse with a cafe, theatre, billiards room, crafts room, gym and lots of activities run by the village including day trips. Everyone was so friendly and came up to us saying "are you thinking of moving in"... when we said yes,they replied, "it was the best thing they ever did and they wished they had done it years ago". So they came home and started picking out a villa and now it's full steam ahead. Originally they were told the villa would be ready to move into in late Jan/early Feb, however we have just been told it could be mid December. So it's all hands on deck to get their house ready to be sold. Hence why Murray did not get to have a week holiday as he has been working really hard doing all sorts of fix it jobs. I've also spent every spare minute over there painting and cleaning. Amy has also been a great helper with painting outside, and Luke helped move computers and set them up in another room. Poor Mum and Dad are having to downsize dramatically!! Talk about a lot of stuff that needs to go!
We are hoping that once the building inspection (residential report) is completed next Monday that we can get the house on the market by the end of October, early November. So it has been a busy couple of weeks for everyone, and will remain so for the next few months. I really think this is going to be the best thing for Mum & Dad as they will be in a great community of people, with a lot of social interaction and won't have to worry about maintaining a house and large garden.
That's all our news for now. I'll update next month.
Saturday 10th September 2011
Okay I missed updating August didn't I. Must be the left over holiday laid back attitude! We had a fabulous time in Cairns from the 12th to the 20th August.The weather was great. It was 28 degrees on average and beautiful and sunny. It rained twice overnight but it didn't affect us at all.We did lots of activities - the boys played golf at Paradise Palms whilst Amy and I went on the Kuranda scenic rail and walked around the markets then back on the Skyrail. It was a great day with beautiful scenery. We went go-carting, hit some balls at a driving range, played tennis and squash, lots of swimming and eating! It was great to do as much or as little as we wanted.We went out to the Great Barrier Reef on one of the last days. We were originally going to go to Green Island and snorkel but the tourist agent said it's nice but it's a bit like throwing a bit of coral in your bathtub. You need to go out to the Outer Barrier Reef. So we did. As always I got seasick but recovered through the time we had out at the reef to go snorkelling and was fine on the return trip. The kids had a ball. Amy originally didn't want to go out into the open ocean and swim away from the boat but she ended up being the first back in the water each time. Luke and Amy had the good fortune of swimming alongside a turtle. There were lots of fish and the coral was beautiful. I got to see Nemo so I was pretty happy. On the last day we went driving around the waterfall circuit. We all had the intention of swimming in the waterfalls but only Murray and Amy were brave enough. The water was icy cold! So cold that they both had trouble breathing once they swam out under the waterfall.It was so nice to get away as a family for the first time since Luke got sick. Even though we had a reminder of his leukaemia when we had to make a visit to Cairns Base Hospital to arrange a blood sample for back home to check up on him!
We were lucky to be away from Canberra the week that we were in Cairns as it had been raining and lucky to get over 14. Half the temperature we were having whilst in Cairns. Then reality hit when we came back to freezing Canberra. We've had some lovely days and back to cold days again since. Hopefully we are on the tail end of the cold weather and now that Spring is here we can get into the warmer weather.
Luke finished up on his 2 month contract with DAFF just before the holiday. However they really liked having him there and he liked the work so he managed to get his uni timetable condensed into 2 full days so he is now back at DAFF 3 days per week on contract till Christmas. This is fantastic experience for him, not to mention a boost for his bank balance. He does get a bit tired at times but seems to soldier on.
Luke's chemo currently runs in 3 monthly cycles with no breaks in between. He started a new cycle on Monday 5th September. We saw the specialist on our return from Cairns and he decided to keep him long term on 50% dosage of his chemo tablets as his liver doesn't seem to cope with the full dosage. At the start of each cycle Luke has to have a lumbar puncture to inject chemo into the spine to make sure no leukaemia cells floating around in the spinal fluid up to the brain. So he had this on Monday. He was down to having blood tests once a fortnight instead of weekly and he had this on Thursday. I got a call from the nurse saying that his liver function tests were up again. The ALT was up to 183 (normal person is no higher than 55) and Bilirubin was 51 (the specialist wants Luke's levels to remain under 30). So Luke is on hold from taking chemo tablets at the moment until his liver function tests settle down again. This is really disappointing as we don't know why it should be reacting so much especially as he is already on the reduced 50% dosage. The doctor was going to check with the specialist once we get more blood tests done this Monday coming and see whether they need to do an ultrasound on his liver to make sure all is okay. Having said Luke's liver is playing up, you wouldn't know it to look at him. He's been to Uni, working and doing assignments. He looks a bit tired but otherwise pretty normal (if there is such a thing!!). So we'll wait and see what gets decided next week and when he can resume chemo. I'll hopefully try and remember to update the blog once we know what is going on.
We were lucky to be away from Canberra the week that we were in Cairns as it had been raining and lucky to get over 14. Half the temperature we were having whilst in Cairns. Then reality hit when we came back to freezing Canberra. We've had some lovely days and back to cold days again since. Hopefully we are on the tail end of the cold weather and now that Spring is here we can get into the warmer weather.
Luke finished up on his 2 month contract with DAFF just before the holiday. However they really liked having him there and he liked the work so he managed to get his uni timetable condensed into 2 full days so he is now back at DAFF 3 days per week on contract till Christmas. This is fantastic experience for him, not to mention a boost for his bank balance. He does get a bit tired at times but seems to soldier on.
Luke's chemo currently runs in 3 monthly cycles with no breaks in between. He started a new cycle on Monday 5th September. We saw the specialist on our return from Cairns and he decided to keep him long term on 50% dosage of his chemo tablets as his liver doesn't seem to cope with the full dosage. At the start of each cycle Luke has to have a lumbar puncture to inject chemo into the spine to make sure no leukaemia cells floating around in the spinal fluid up to the brain. So he had this on Monday. He was down to having blood tests once a fortnight instead of weekly and he had this on Thursday. I got a call from the nurse saying that his liver function tests were up again. The ALT was up to 183 (normal person is no higher than 55) and Bilirubin was 51 (the specialist wants Luke's levels to remain under 30). So Luke is on hold from taking chemo tablets at the moment until his liver function tests settle down again. This is really disappointing as we don't know why it should be reacting so much especially as he is already on the reduced 50% dosage. The doctor was going to check with the specialist once we get more blood tests done this Monday coming and see whether they need to do an ultrasound on his liver to make sure all is okay. Having said Luke's liver is playing up, you wouldn't know it to look at him. He's been to Uni, working and doing assignments. He looks a bit tired but otherwise pretty normal (if there is such a thing!!). So we'll wait and see what gets decided next week and when he can resume chemo. I'll hopefully try and remember to update the blog once we know what is going on.
Friday 29 July 2011
Okay.. I know I've been really slack with putting up a post.
At the start of this cycle Luke's liver function blood test results went up again. They tried him again on full doses of the chemo tablets however his system just doesn't cope with the full strength. I mentioned to the doctor that both my Dad and I have what's know as gilbert's syndrome. It's nothing major however it can affect your liver function tests and make you look jaundiced and quite fatigued at times. It seems to present itself in your 20's and 30's and affects the LFT as well as Bilirubin levels. This would explain why Luke's body isn't able to absorb the full strength of his chemo as his liver just doesn't cope with it. So he is back to a half dose of Mercaptopurine and I'd imagine this is how it will have to remain throughout the next few years. Having said that his liver didn't cope with the chemo, Luke was none the wiser and felt fine. I guess in the long run they have to adjust the levels so that it won't cause any permanent damage to his liver.
Luke is really enjoying his time at DAFF. He's become a bit of a computer guru for those that he works with and solves a few problems for them, especially with Visio projects. Unfortunately he went and caught a cold whilst at work as quite a few of them had been off sick the previous week. So he has been off sick Monday to Thursday this week. Not much he could do other than take cold and flu tablets and rest up. At least he didn't get a temperature and develop an infection. He's gone back to work today with a box of tissues in hand!!
Amy and I went up to Sydney during the school holidays and had a lovely few 'girly' days. We went to see the musical Hairspray. It was fantastic, really colourful and quite funny. The weather was fowl. It was raining sideways constantly and we had to walk in and out of shops with an umbrella up and dodge puddles. We also went around looking for formal dresses. She has fallen in love with one at David Jones - a Zimmerman brand that is going to cost a fortune. We are heading into Civic tonight to have one last look around before we get the Zimmerman one that she likes.
I've been busy painting and cleaning as we are changing most of our window dressings to update things a bit. We are replacing the verticals at the front of the house (lounge and master bedroom) however we are now having trouble deciding on what colour to get the side curtains in. We've also need to do the family room and kitchen.
We are on the count down for our Cairns holiday. We leave on the 12th August - which happens to be Murray and my 22nd wedding anniversary. So we'll have to go out for a nice dinner by ourselves one night while we are up there. We are really looking forward to getting away from the cold weather in Canberra. It was minus 8 overnight and Luke missed his bus this morning so at 8am when I was driving him into the city it was still -5. It's really deceiving though as it is a lovely sunny day - it's supposed to get up to 16 degrees. I suddenly thought this morning that I'll have to take Luke out shopping for board shorts and dress shorts for the warmer weather in Cairns. Unfortunately he's put on a bit of weight and nothing fits!! I tried to talk him into meeting Amy and I in the city tonight but he doesn't want to walk around and into every shop that we'll be going to. So I'll have to take him out tomorrow for a specific in and out type of shop.
That's all our news for now. I'll update after the holiday.
At the start of this cycle Luke's liver function blood test results went up again. They tried him again on full doses of the chemo tablets however his system just doesn't cope with the full strength. I mentioned to the doctor that both my Dad and I have what's know as gilbert's syndrome. It's nothing major however it can affect your liver function tests and make you look jaundiced and quite fatigued at times. It seems to present itself in your 20's and 30's and affects the LFT as well as Bilirubin levels. This would explain why Luke's body isn't able to absorb the full strength of his chemo as his liver just doesn't cope with it. So he is back to a half dose of Mercaptopurine and I'd imagine this is how it will have to remain throughout the next few years. Having said that his liver didn't cope with the chemo, Luke was none the wiser and felt fine. I guess in the long run they have to adjust the levels so that it won't cause any permanent damage to his liver.
Luke is really enjoying his time at DAFF. He's become a bit of a computer guru for those that he works with and solves a few problems for them, especially with Visio projects. Unfortunately he went and caught a cold whilst at work as quite a few of them had been off sick the previous week. So he has been off sick Monday to Thursday this week. Not much he could do other than take cold and flu tablets and rest up. At least he didn't get a temperature and develop an infection. He's gone back to work today with a box of tissues in hand!!
Amy and I went up to Sydney during the school holidays and had a lovely few 'girly' days. We went to see the musical Hairspray. It was fantastic, really colourful and quite funny. The weather was fowl. It was raining sideways constantly and we had to walk in and out of shops with an umbrella up and dodge puddles. We also went around looking for formal dresses. She has fallen in love with one at David Jones - a Zimmerman brand that is going to cost a fortune. We are heading into Civic tonight to have one last look around before we get the Zimmerman one that she likes.
I've been busy painting and cleaning as we are changing most of our window dressings to update things a bit. We are replacing the verticals at the front of the house (lounge and master bedroom) however we are now having trouble deciding on what colour to get the side curtains in. We've also need to do the family room and kitchen.
We are on the count down for our Cairns holiday. We leave on the 12th August - which happens to be Murray and my 22nd wedding anniversary. So we'll have to go out for a nice dinner by ourselves one night while we are up there. We are really looking forward to getting away from the cold weather in Canberra. It was minus 8 overnight and Luke missed his bus this morning so at 8am when I was driving him into the city it was still -5. It's really deceiving though as it is a lovely sunny day - it's supposed to get up to 16 degrees. I suddenly thought this morning that I'll have to take Luke out shopping for board shorts and dress shorts for the warmer weather in Cairns. Unfortunately he's put on a bit of weight and nothing fits!! I tried to talk him into meeting Amy and I in the city tonight but he doesn't want to walk around and into every shop that we'll be going to. So I'll have to take him out tomorrow for a specific in and out type of shop.
That's all our news for now. I'll update after the holiday.
Sunday, 19th June 2011
Wow... Luke is pretty amazing.
He got his University semester one subject results the other week and he got 3 x high distinctions and 1 x credit. I can't believe how well he did considering how disjointed the semester was for him. We are really proud of him and what he's been able to achieve.
I mentioned that Luke now had 2.5 months break from uni before semester two starts up again. His Aunty Heidi works at DAFF (Department of Agriculture, Fisheries and Forestry) and she is working on a special reform project. She suggested that Luke might be able to go and work on a contract basis. So he applied through the non-ongoing register and was accepted. He has been employed full time as a APS3 Project Officer. He will be giving administrative support to everyone on the project. He started on Wed 15th and is on contract until 12th August. He was a bit concerned he'd be a bit bored however he's enjoyed his first few days. He got left in a meeting of EL2's on his 2nd day to set up the meeting and take notes throughout the meeting.
This is a great opportunity for him for quite a few reasons. It will look good on his resume, it will give him some much needed cash and independence and get him off the lounge!!! Mind you I think he's going to be exhausted working full time. He's spent most of the weekend sleeping.
Luke completed the first 3 month maintenance chemo last Sunday and went straight onto Day 1 of the new 3 month maintenance chemo cycle on Monday. He's on 2/3 of the dose of Mercaptopurine and full dose of Methotrexate this time around to see how his liver function reacts. So he's not totally at full dosage but getting there. We are waiting on his blood tests to see if all is going okay. Luke had a lumbar puncture on Friday (so unfortunately he missed Day 3 of work - which DAFF knew was going to happen). All went well.
I mentioned that we wanted to go away for holidays. I have now booked for 8 nights in Cairns in the Northern Beach area of Palm Cove. That way we are between Cairns and Port Douglas and can tour around a bit whilst staying at a nice resort. We will be leaving on the 12th August. Luke wanted to make the most of his uni break and full time work. He will miss the first week of Uni but he said no tutorials will have started then so all should be good. We are really looking forward to a nice break.
That's all our news for now.
He got his University semester one subject results the other week and he got 3 x high distinctions and 1 x credit. I can't believe how well he did considering how disjointed the semester was for him. We are really proud of him and what he's been able to achieve.
I mentioned that Luke now had 2.5 months break from uni before semester two starts up again. His Aunty Heidi works at DAFF (Department of Agriculture, Fisheries and Forestry) and she is working on a special reform project. She suggested that Luke might be able to go and work on a contract basis. So he applied through the non-ongoing register and was accepted. He has been employed full time as a APS3 Project Officer. He will be giving administrative support to everyone on the project. He started on Wed 15th and is on contract until 12th August. He was a bit concerned he'd be a bit bored however he's enjoyed his first few days. He got left in a meeting of EL2's on his 2nd day to set up the meeting and take notes throughout the meeting.
This is a great opportunity for him for quite a few reasons. It will look good on his resume, it will give him some much needed cash and independence and get him off the lounge!!! Mind you I think he's going to be exhausted working full time. He's spent most of the weekend sleeping.
Luke completed the first 3 month maintenance chemo last Sunday and went straight onto Day 1 of the new 3 month maintenance chemo cycle on Monday. He's on 2/3 of the dose of Mercaptopurine and full dose of Methotrexate this time around to see how his liver function reacts. So he's not totally at full dosage but getting there. We are waiting on his blood tests to see if all is going okay. Luke had a lumbar puncture on Friday (so unfortunately he missed Day 3 of work - which DAFF knew was going to happen). All went well.
I mentioned that we wanted to go away for holidays. I have now booked for 8 nights in Cairns in the Northern Beach area of Palm Cove. That way we are between Cairns and Port Douglas and can tour around a bit whilst staying at a nice resort. We will be leaving on the 12th August. Luke wanted to make the most of his uni break and full time work. He will miss the first week of Uni but he said no tutorials will have started then so all should be good. We are really looking forward to a nice break.
That's all our news for now.
Saturday 28th May 2011
We saw the specialist on Wednesday 25th and all is good so far. I don't know what they look at however from his blood test results they can tell that all is looking and progressing well with treatment at the moment. He is still in remission so that's fabulous and now that Luke's reached true maintenance chemo cycles for the next two years the prognosis looks pretty good. I really think now that he's made it through all of the intensive chemo he's on the right path. So let's just keep fingers crossed that it stays this way throughout the rest of his treatment.
Luke has currently been on 50% dosages of Mercaptopurine and Methotrexate as his liver function tests went through the roof. A few weeks ago they increased the Methotrexate (which is a once a week chemo tablet) to 75% of the dosage. His blood tests showed that his liver function increased slightly but nowhere near as bad as they had before. They are just going to monitor this and see if he copes with the increase or whether they drop him back down to 50% dosages. We asked the specialist about the long term effects of not having the full dosage and the response was that as he had made it to maintenance chemo the reduced levels would not affect him and also different people react in different ways to the chemo and the results show that for Luke even the reduced dosages are doing what they need to.
So it was good news all round.
Luke had 4 exams over the past 2 weeks. We were a bit concerned at first as he had to have an intravenous chemo treatment on the Monday and he was scheduled to have 2 exams on the Wednesday and 1 on Thursday with the last exam the following Thursday.
We decided that as Luke always feels pretty lousy 1-2 days after this chemo, that we would contact the university accessibility area and see if they could move one of the Wednesday exams. They ended up rearranging his whole exam schedule. So he ended up with 1 on Thursday / 1 on Friday / 1 on Monday and the last one on Tuesday. So they ended up being quite evenly spread out and gave him enough time to study.
I really don't know how he does it - I'm sure he must have a photographic memory! He ended up not going to any of the lectures throughout the semester (due to being behind after his hospitalisation and playing catch up with assignments), and just looked over the lecture and tutorial notes and textbooks. He thinks he's done pretty well - the results come out 10 June. He's been getting fairly much top marks for all of his assignments. We are really proud of what he's achieved so far.
He now has 2.5 months off university till 2nd semester starts. They do run a winter term if you want to finish off your degree earlier, however he's decided he'll just stick to the normal full time 3 year course, studying 2 x semesters per year. I think he deserves a break now anyway. He's put on a fair bit of weight over the year due to steroids, eating lots!! and lack of exercise. So now that he doesn't need to study, I'm on his back to get outside and exercising.
I'm thinking we all deserve a holiday, considering as a family we haven't been away anywhere since January 2010 to Port Macquarie, that was just before Luke got sick. We all want to go to New Zealand sometime, however originally I had thought October school holidays but the rugby world cup will be on then and costs will be through the roof. So we might leave that one till January. In the meantime I'd really like us all to get away somewhere during July. I'm just starting to play with ideas. All I know is that we want to go somewhere soon and somewhere warmer than Canberra! I'd love to go to Hawaii but that becomes expensive for a short visit so we might just stick to somewhere close like Queensland.
Finally for anyone following my Mum's problems with having a catheter since August last year. She has finally after quite a few tests and doctors visits been told that one of the muscles that controls the release of the urine can't be fixed. She is now trying out self catheterisation. Oh to be a fly on the wall while Dad and her try and sort this out! So far so good and all seems to be working well. At least she is now free of having a bag with her all the time.
Think that's all for now. I'll update any news in a month or so.
Luke has currently been on 50% dosages of Mercaptopurine and Methotrexate as his liver function tests went through the roof. A few weeks ago they increased the Methotrexate (which is a once a week chemo tablet) to 75% of the dosage. His blood tests showed that his liver function increased slightly but nowhere near as bad as they had before. They are just going to monitor this and see if he copes with the increase or whether they drop him back down to 50% dosages. We asked the specialist about the long term effects of not having the full dosage and the response was that as he had made it to maintenance chemo the reduced levels would not affect him and also different people react in different ways to the chemo and the results show that for Luke even the reduced dosages are doing what they need to.
So it was good news all round.
Luke had 4 exams over the past 2 weeks. We were a bit concerned at first as he had to have an intravenous chemo treatment on the Monday and he was scheduled to have 2 exams on the Wednesday and 1 on Thursday with the last exam the following Thursday.
We decided that as Luke always feels pretty lousy 1-2 days after this chemo, that we would contact the university accessibility area and see if they could move one of the Wednesday exams. They ended up rearranging his whole exam schedule. So he ended up with 1 on Thursday / 1 on Friday / 1 on Monday and the last one on Tuesday. So they ended up being quite evenly spread out and gave him enough time to study.
I really don't know how he does it - I'm sure he must have a photographic memory! He ended up not going to any of the lectures throughout the semester (due to being behind after his hospitalisation and playing catch up with assignments), and just looked over the lecture and tutorial notes and textbooks. He thinks he's done pretty well - the results come out 10 June. He's been getting fairly much top marks for all of his assignments. We are really proud of what he's achieved so far.
He now has 2.5 months off university till 2nd semester starts. They do run a winter term if you want to finish off your degree earlier, however he's decided he'll just stick to the normal full time 3 year course, studying 2 x semesters per year. I think he deserves a break now anyway. He's put on a fair bit of weight over the year due to steroids, eating lots!! and lack of exercise. So now that he doesn't need to study, I'm on his back to get outside and exercising.
I'm thinking we all deserve a holiday, considering as a family we haven't been away anywhere since January 2010 to Port Macquarie, that was just before Luke got sick. We all want to go to New Zealand sometime, however originally I had thought October school holidays but the rugby world cup will be on then and costs will be through the roof. So we might leave that one till January. In the meantime I'd really like us all to get away somewhere during July. I'm just starting to play with ideas. All I know is that we want to go somewhere soon and somewhere warmer than Canberra! I'd love to go to Hawaii but that becomes expensive for a short visit so we might just stick to somewhere close like Queensland.
Finally for anyone following my Mum's problems with having a catheter since August last year. She has finally after quite a few tests and doctors visits been told that one of the muscles that controls the release of the urine can't be fixed. She is now trying out self catheterisation. Oh to be a fly on the wall while Dad and her try and sort this out! So far so good and all seems to be working well. At least she is now free of having a bag with her all the time.
Think that's all for now. I'll update any news in a month or so.
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