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.
Monday 2nd May 2011
I've just realised I've been very amiss at not doing a post on the blog for a month.
Last I wrote that Luke's liver function test went sky high and his chemo was put on hold until his blood levels settled back to normal.
The good news is that his levels did settle down - it took about 2 weeks. He then recommenced maintenance chemo but on 50% of the original dosages of Methotrexate and Mercaptopurine. So far all seems to be going well on these dosages. Luke goes to see the Resident doctor this Wednesday so he'll get the full run down of what's going on. He then has an appointment with the specialist on the 25th May and at that stage I will go with my millions of questions to ask about Luke's progress and long term prospects. We haven't seen the specialist for quite a while (Luke was meant to see him in March, however he got admitted into the hospital with the infection and didn't get to see him)so it will be good to catch up.
Otherwise I am really proud with how well he has been going with his uni work. He had quite a few assignment extensions due to his hospitalisation, however he has managed to catch up with these and is now on track with everyone else. He's been getting top marks back from the assignments he's already submitted.I think he has one or two more assignments to submit in the next week and then exams will be starting on the 18th May. So he still has a lot of work to do to listen to all the lectures he's missed out on in the next few weeks. I have no doubt though that he will do really well. He will then get to have about 3 months off as he will not do the new uni option of a winter term and will start up again I think in August for 2nd semester. I think he is really looking forward to the break and deserves one too.
We've all been keeping well. Amy did quite a bit of work at Donut King over the school holidays and is rolling in the money. She also had her birthday last month and she used birthday money and work money to buy a Canon digital SLR camera. So she has been busy clicking away at everyone. Murray is away this week at Tura Beach on a golfing holiday with some of his golfing group. I'm not sure that he's playing too well but at least he gets to have a nice break from work. I also got to have a nice 10 day break over Easter. I've had my head down doing assignments for a Certificate IV in Human Resources. Thankfully the last class is this week and only 1 more assignment. It will be nice to get some time back to myself.
So all is well in the Elton household. I'll let you know any news we find out after the specialist visit at the end of the month.
Last I wrote that Luke's liver function test went sky high and his chemo was put on hold until his blood levels settled back to normal.
The good news is that his levels did settle down - it took about 2 weeks. He then recommenced maintenance chemo but on 50% of the original dosages of Methotrexate and Mercaptopurine. So far all seems to be going well on these dosages. Luke goes to see the Resident doctor this Wednesday so he'll get the full run down of what's going on. He then has an appointment with the specialist on the 25th May and at that stage I will go with my millions of questions to ask about Luke's progress and long term prospects. We haven't seen the specialist for quite a while (Luke was meant to see him in March, however he got admitted into the hospital with the infection and didn't get to see him)so it will be good to catch up.
Otherwise I am really proud with how well he has been going with his uni work. He had quite a few assignment extensions due to his hospitalisation, however he has managed to catch up with these and is now on track with everyone else. He's been getting top marks back from the assignments he's already submitted.I think he has one or two more assignments to submit in the next week and then exams will be starting on the 18th May. So he still has a lot of work to do to listen to all the lectures he's missed out on in the next few weeks. I have no doubt though that he will do really well. He will then get to have about 3 months off as he will not do the new uni option of a winter term and will start up again I think in August for 2nd semester. I think he is really looking forward to the break and deserves one too.
We've all been keeping well. Amy did quite a bit of work at Donut King over the school holidays and is rolling in the money. She also had her birthday last month and she used birthday money and work money to buy a Canon digital SLR camera. So she has been busy clicking away at everyone. Murray is away this week at Tura Beach on a golfing holiday with some of his golfing group. I'm not sure that he's playing too well but at least he gets to have a nice break from work. I also got to have a nice 10 day break over Easter. I've had my head down doing assignments for a Certificate IV in Human Resources. Thankfully the last class is this week and only 1 more assignment. It will be nice to get some time back to myself.
So all is well in the Elton household. I'll let you know any news we find out after the specialist visit at the end of the month.
Friday 1st April 2011
Just when I thought things would settle into normality, Luke hit another hurdle.
He'd been on his maintenance chemo for a week. He had been having Mercaptopurine daily and then had his first Methotrexate on Sunday. He was put on weekly bloods at the beginning of the cycle as everything was fine and therefore had a blood test on Tuesday 29th March. In the afternoon one of his doctors called to say that his liver function test level was extremely high. A normal LFT level is 55, Luke's was over 1000. It appears that probably a combination of both chemo tablets caused the problem but also that the dosage of these might be too large.
They put chemo on hold straight away and have been taking daily blood levels and the LFT levels have been going down daily by 150 - 200. His latest level was just over 400. He is now going onto blood tests every second day and once his levels reach a normal level (100 is around Luke's normal whilst on chemo) they will reassess the chemo dosages.
Luke actually has appeared to be going really well and we wouldn't have picked up anything was wrong unless the blood test showed a problem. He's been busy working on uni assignments to try and catch up. Hopefully he will in the next week or so.
I'll let you know how things progress as anything new happens.
He'd been on his maintenance chemo for a week. He had been having Mercaptopurine daily and then had his first Methotrexate on Sunday. He was put on weekly bloods at the beginning of the cycle as everything was fine and therefore had a blood test on Tuesday 29th March. In the afternoon one of his doctors called to say that his liver function test level was extremely high. A normal LFT level is 55, Luke's was over 1000. It appears that probably a combination of both chemo tablets caused the problem but also that the dosage of these might be too large.
They put chemo on hold straight away and have been taking daily blood levels and the LFT levels have been going down daily by 150 - 200. His latest level was just over 400. He is now going onto blood tests every second day and once his levels reach a normal level (100 is around Luke's normal whilst on chemo) they will reassess the chemo dosages.
Luke actually has appeared to be going really well and we wouldn't have picked up anything was wrong unless the blood test showed a problem. He's been busy working on uni assignments to try and catch up. Hopefully he will in the next week or so.
I'll let you know how things progress as anything new happens.
Tuesday 22nd March 2011
All is going well now with Luke. He did get out of hospital on Saturday 12th March. He didn't get any more temperatures which was good. He came out of hospital with two big bandaged toes in his "moon shoes". It was great fun trying to get him in the shower. I had to put his fut in a freezer bag first then tape it and then put a boot bag over the top and tape it up again. Poor Luke, the first time I taped his feet up he got all light headed and I'd thought I'd cut off his circulation to his feet. Murray and I shoved him in the shower so quickly to try and get the shower over and done with as quickly as possible!! Needless to say he was not that keen to get back in the shower the next day! He had his bandages on his toes changed on Thursday 17th. The surgeon was happy with how everything went. He did say that one of his toenails would more than likely fall off as it lifted up during the operation. He was take the bandages off and shower normally this Monday 21st. They look sore but are actually quite good. He's getting around slowly in thongs as he's been told to let the air get at them.
Luke started the first of his 3 monthly cycles of maintenance chemo on Monday. This is going to be much better than any cycles he's had. The cycle basically consists of daily Mercaptopurine chemo tablets / Methotrexate chemo tablet once a week / Steroids - Prednisolone in 5 day blocks - once a month / Vincristine - a chemo drug via a cannula once a month and finally a lumbar puncture with Methotrexate chemo inserted into the spine on day one of the cycle.He'll be on the same cycle now for the next 2 years with possibly only a week or two between cycles. So he's still got a long road ahead of him but hopefully a much easier, smoother road.
Hopefully he shouldn't become neutropenic during the cycle however we won't know until we see how he reacts to the cycle. Fingers crossed!
He's trying to catch up with university work at the moment with being out of action for quite a few weeks. He's had a few assignments all due now - so he has applied for a few extensions. So hopefully he can catch up okay.
I've had a few people asking if anyone we knew was doing Shave for a Cure for the Leukaemia Foundation. I'm afraid I'm not brave enough to do it. I have found out that one of Luke's friends has recently shaved his head- he did it last year too. His name is Daniel Sims. If you would like to sponsor him you can go to the Shave for a cure link on this blog site and do a search for him as an individual. Thanks yet again Daniel - you are a top guy.
That's all our news for now. Hopefully we can get back to a bit of 'normality' with Murray going back to work full time and I'm back 3 days per week. Amy is going along really well in Year 10 and also enjoying getting lots of money with her casual job at Donut King. She loves spending lots of money on clothes. I'll update when I have any news to tell - if that becomes less frequent, that will actually be a good sign as that means no news is good news.
Luke started the first of his 3 monthly cycles of maintenance chemo on Monday. This is going to be much better than any cycles he's had. The cycle basically consists of daily Mercaptopurine chemo tablets / Methotrexate chemo tablet once a week / Steroids - Prednisolone in 5 day blocks - once a month / Vincristine - a chemo drug via a cannula once a month and finally a lumbar puncture with Methotrexate chemo inserted into the spine on day one of the cycle.He'll be on the same cycle now for the next 2 years with possibly only a week or two between cycles. So he's still got a long road ahead of him but hopefully a much easier, smoother road.
Hopefully he shouldn't become neutropenic during the cycle however we won't know until we see how he reacts to the cycle. Fingers crossed!
He's trying to catch up with university work at the moment with being out of action for quite a few weeks. He's had a few assignments all due now - so he has applied for a few extensions. So hopefully he can catch up okay.
I've had a few people asking if anyone we knew was doing Shave for a Cure for the Leukaemia Foundation. I'm afraid I'm not brave enough to do it. I have found out that one of Luke's friends has recently shaved his head- he did it last year too. His name is Daniel Sims. If you would like to sponsor him you can go to the Shave for a cure link on this blog site and do a search for him as an individual. Thanks yet again Daniel - you are a top guy.
That's all our news for now. Hopefully we can get back to a bit of 'normality' with Murray going back to work full time and I'm back 3 days per week. Amy is going along really well in Year 10 and also enjoying getting lots of money with her casual job at Donut King. She loves spending lots of money on clothes. I'll update when I have any news to tell - if that becomes less frequent, that will actually be a good sign as that means no news is good news.
Wednesday 9th March 2011
Luke is much better in relation to the infection. He has had no more temperatures which is great. He is still on antibiotics. The latest theory is that when blood culture samples were taken from Luke's central line - the saline that they use to flush the line after using it would have flushed the toxins that were in the central line through his system. As this was done a few hours before the central line came out this is what caused the sceptic reaction.
Yesterday the general surgeons came to see about operating on Luke's ingrown big toe toenails. He was neutropenic based on blood samples from the day before and they said they wouldn't operate when his neuts were so low. That afternoon when new blood test results were back, his neuts were 1.6. So the surgeons decided to go ahead this morning. Murray went in to hospital with him. He was in recovery for quite a while. All is good and he now has two bandaged toes. He came back from surgery and was very groggy and slept for about 3 hours. He has some "moon shoes" - basically a strapped on shoe to put on. He has been getting up to go to the toilet however he has just called us to say that his toes are bleeding a bit and he's been told to stay in bed overnight to let scabs form properly. He's also in a bit of pain so they will hopefully keep the pain killers up to him. He said he won't be getting much sleep as they have told him they are going to come in every hour to look at his toes and test his feeling in his feet and other toes and to make sure blood circulating okay.
It was actually my birthday today. I had to go into the city on a human resources course that I am currently undertaking. Amy was working this afternoon/evening so Murray took me out for a nice dinner. So I had a fairly low key celebration.
I'll head into hospital tomorrow morning to spend the day with Luke. At this stage we've been told it will probably be Saturday before he can come home so we'll wait and see if that happens. He has also been told that the maintenance chemo has been put off for another week so this will probably start up on Monday 21st March.
Yesterday the general surgeons came to see about operating on Luke's ingrown big toe toenails. He was neutropenic based on blood samples from the day before and they said they wouldn't operate when his neuts were so low. That afternoon when new blood test results were back, his neuts were 1.6. So the surgeons decided to go ahead this morning. Murray went in to hospital with him. He was in recovery for quite a while. All is good and he now has two bandaged toes. He came back from surgery and was very groggy and slept for about 3 hours. He has some "moon shoes" - basically a strapped on shoe to put on. He has been getting up to go to the toilet however he has just called us to say that his toes are bleeding a bit and he's been told to stay in bed overnight to let scabs form properly. He's also in a bit of pain so they will hopefully keep the pain killers up to him. He said he won't be getting much sleep as they have told him they are going to come in every hour to look at his toes and test his feeling in his feet and other toes and to make sure blood circulating okay.
It was actually my birthday today. I had to go into the city on a human resources course that I am currently undertaking. Amy was working this afternoon/evening so Murray took me out for a nice dinner. So I had a fairly low key celebration.
I'll head into hospital tomorrow morning to spend the day with Luke. At this stage we've been told it will probably be Saturday before he can come home so we'll wait and see if that happens. He has also been told that the maintenance chemo has been put off for another week so this will probably start up on Monday 21st March.
Monday 7th March 2011
Luke appears to be getting better today. Unfortunately over the weekend he kept getting temperatures on and off, more so in the evening. Each time he gets a fever it delays his coming home. So far today he has maintained a normal temperature, so hopefully he's turned the corner.
Murray is feeling better today so he came in and took over from me at lunchtime. This afternoon they had a visit from the infectious diseases unit. Each day Luke has had having blood cultures taken.This means the blood samples are taken to the infectious disease unit and see what bacteria grows in the samples. We were told over the weekend that it appeared that the central line that was taken out was infected. The doctor this afternoon told the boys that it wasn't actually the central line (or equipment/needle of the line) that grew anything. What grew was actually in the blood sample that was taken from the line. However they don't believe the bug thats grown was causing the fevers. They actually think the fevers were caused by the antibiotics that he was being treated with. They have stopped one of the antibiotics and are running further tests. They were going to do an ultrasound on Luke's stomach to see if any infectious bugs are in there (as he has had some stomach pain).
So the long and the short of it is that no-one has any idea!!!!
Luke needed a new cannula put in his hand this afternoon (they are only viable for a few days). Two nurses attempted 4 times without success and then someone came and tried in another vein on his hand. Unfortunately he is turning into a pin cushion with all of the cannula attempts and blood samples being taken. At least the old central line was good for something!
As I mentioned before Luke needs to have a 24 hour period without any fevers followed by another 24 hours taking oral antibiotics which means at least Wednesday / Thursday before he comes out. However given that there are still some complications that might not happen. Also Luke was due to have his ingrown toenail operated on by a private podiatrist today. Obviously that didn't go ahead. However one of Luke's doctors used to be a podiatrist in her past life and she was going to get the general surgeons to come and have a look both big toes (as his other one has started bleeding down one side since being in hospital) and hopefully they can get them sorted before the next round of chemo starts.
Luke is due to go onto maintenance chemo and they think tentatively this may start next Tuesday. Needless to say with finishing intensive chemo about 10 days ago and being neutropenic and now this, Luke has not felt like doing any university work. He is really hoping that he can pick this up again soon. We have already applied for a few extensions on his first assessment items so I hope he can catch up.
Things should get easier for him once he is over this glitch in the program.
I'll let you know when we have any other news.
Murray is feeling better today so he came in and took over from me at lunchtime. This afternoon they had a visit from the infectious diseases unit. Each day Luke has had having blood cultures taken.This means the blood samples are taken to the infectious disease unit and see what bacteria grows in the samples. We were told over the weekend that it appeared that the central line that was taken out was infected. The doctor this afternoon told the boys that it wasn't actually the central line (or equipment/needle of the line) that grew anything. What grew was actually in the blood sample that was taken from the line. However they don't believe the bug thats grown was causing the fevers. They actually think the fevers were caused by the antibiotics that he was being treated with. They have stopped one of the antibiotics and are running further tests. They were going to do an ultrasound on Luke's stomach to see if any infectious bugs are in there (as he has had some stomach pain).
So the long and the short of it is that no-one has any idea!!!!
Luke needed a new cannula put in his hand this afternoon (they are only viable for a few days). Two nurses attempted 4 times without success and then someone came and tried in another vein on his hand. Unfortunately he is turning into a pin cushion with all of the cannula attempts and blood samples being taken. At least the old central line was good for something!
As I mentioned before Luke needs to have a 24 hour period without any fevers followed by another 24 hours taking oral antibiotics which means at least Wednesday / Thursday before he comes out. However given that there are still some complications that might not happen. Also Luke was due to have his ingrown toenail operated on by a private podiatrist today. Obviously that didn't go ahead. However one of Luke's doctors used to be a podiatrist in her past life and she was going to get the general surgeons to come and have a look both big toes (as his other one has started bleeding down one side since being in hospital) and hopefully they can get them sorted before the next round of chemo starts.
Luke is due to go onto maintenance chemo and they think tentatively this may start next Tuesday. Needless to say with finishing intensive chemo about 10 days ago and being neutropenic and now this, Luke has not felt like doing any university work. He is really hoping that he can pick this up again soon. We have already applied for a few extensions on his first assessment items so I hope he can catch up.
Things should get easier for him once he is over this glitch in the program.
I'll let you know when we have any other news.
Saturday 5th March 2011
I'm afraid yesterday Luke hit a very low spot. His temperatures through the day were consistently in the high 38's - 39 degree. They kept various antibiotics up to him and panadol seemed to bring things back down to low 38's. However at 3.30pm Luke started to get prepared to have his central line out . His temperature started climbing into the high 39's and 40's. He had been complaining of chills and shaking and as the operation proceeded under local anesthetic his body started to shut down. One of the nurses notices his nails had gone purple and checked his feet. There was a made rush to get his feet and body covered in warmed blankets - his temperature spiked at 40.9 degrees. In the process of all of this he had to vomit. The central line operation continued however it was buried in his chest a lot deeper than the doctor was expecting. It was about 2cm down so what should have been a relatively simple procedure turned out to take about 2 hours with all the dramas.
Needless to say I was a wreck when his temp rose so high and he was shaking away. I said to Murray that I'd have to rate this as my 3rd worse day. The 1st was when Luke was diagnosed with leukaemia / the 2nd when the central line failed to go in the first time and they hit an artery and now this. Poor Murray felt helpless being stuck at home with a cold and unable to come in and see us.
There was a chance Luke was going to be taken to Intensive Care so that he could be monitored constantly however it was decided that as his temp was starting to decline they would leave him be but if it climbed again they would come and get him.
I stayed overnight with Luke as his temps were still in the high 39's, by around 2am they came down to 38's and by 4am he was back to a normal 37.2.He was getting interrupted every half hour - hour with his temp getting checked and doctors coming in constantly to check on him. I have just come home quickly to have a shower and freshen up and about to head back in to the hospital. Luke is very very stiff and sore all over - he's had 6 cannulas or attempts at putting cannulas into his hands/wrist and elbow so he is finding it hard to sit up and hold anything in his hands.
I'm sure he is over the worst of it and we have been told that he will need to have a 24 hours period without any fevers and then have 24 hours on oral antibiotics before he can come home. So I dare say it will be at least Monday till he can come home. I'll update after that.
Needless to say I was a wreck when his temp rose so high and he was shaking away. I said to Murray that I'd have to rate this as my 3rd worse day. The 1st was when Luke was diagnosed with leukaemia / the 2nd when the central line failed to go in the first time and they hit an artery and now this. Poor Murray felt helpless being stuck at home with a cold and unable to come in and see us.
There was a chance Luke was going to be taken to Intensive Care so that he could be monitored constantly however it was decided that as his temp was starting to decline they would leave him be but if it climbed again they would come and get him.
I stayed overnight with Luke as his temps were still in the high 39's, by around 2am they came down to 38's and by 4am he was back to a normal 37.2.He was getting interrupted every half hour - hour with his temp getting checked and doctors coming in constantly to check on him. I have just come home quickly to have a shower and freshen up and about to head back in to the hospital. Luke is very very stiff and sore all over - he's had 6 cannulas or attempts at putting cannulas into his hands/wrist and elbow so he is finding it hard to sit up and hold anything in his hands.
I'm sure he is over the worst of it and we have been told that he will need to have a 24 hours period without any fevers and then have 24 hours on oral antibiotics before he can come home. So I dare say it will be at least Monday till he can come home. I'll update after that.
Wednesday 2nd March 2011
Luke finished the last intensive chemo treatment last Thursday. Luke had been neutropenic for a while early last week and was unable to attend uni. His levels came good by mid week which was good as it was decided that now was the time to try and fix Luke's ingrown toenail whilst he was between chemos. He was booked to have a side of his nail taken out on Monday 28th Feb. Unfortunately Luke became neutropenic over the weekend and we had to cancel the toe operation till next Monday.
Luke was fighting with a bit of a runny nose. Amy started the process when she came down with a bad cold last Wednesday and it took her about 5 days to recover. We tried to keep them isolated but that's not exactly easy to enforce. His blood was tested again on Monday and his levels were better however he started getting a fever. He got up to 38.3 degrees and when Luke called they said if he got up to 38.5 to go to emergency. His temperature came down but he started showing a few more signs of having a cold. Yesterday he varied from 37 - 38 degrees but today he reached 38.2 degrees before we were due to go in and see the specialist. When we went in his temperature was 38.5. It was decided that they would take blood cultures to see why he had an infection. Within 30 minutes his temperature spiked at 39.5 degrees. The specialist saw Luke and said that unfortunately they couldn't let him leave with such a temperature and that he would have to be admitted.
So poor Luke is now in hospital till they sort out what is causing the infection. He had a chest x-ray so we'll find out the results tomorrow. Luke will be getting his central line taken out of his chest tomorrow. Yay!!!! It's been in him for over a year and there is a chance that this has become infected. However I'm pretty sure the infection will be due to a cold virus. Murray came down with a cold like a tonne of bricks yesterday afternoon. So he can't go near Luke at the moment. I'm just managing to keep a cold at bay - I've got the sore throat and a bit of a runny nose so I just hope it doesn't hit me in the next few days as one of us needs to go and be with him.
Dad has been sick for over a week now with a cough more than a cold. He went to the doctors the other day and he may have had whooping cough. He's been given some strong antibiotics and cough medicine so hopefully he will get better soon. On the last blog, I mentioned that Mum was going in for exploratory surgery on her bladder. Unfortunately once again the surgery got cancelled and she was rebooked for next Tuesday. She had a bit of a scare today when they called and told her they would have to cancel as they had overbooked. However when she said she'd been cancelled twice before they apologised and said they would get in touch with someone else. So hopefully things will go ahead next week. I just hope she doesn't get sick being around Dad.
So unfortunately the family is a bit isolated at the moment with lots of sickness going on. I'm sure Luke will be fine. It's probably best that he stay in hospital away from Murray at the moment but he hates being in there as it is so boring. It depends what all the tests show however he could be in hospital for anywhere from 2 day to a week. Let's hope it's a short stay. I'll keep you updated with how things progress.
Luke was fighting with a bit of a runny nose. Amy started the process when she came down with a bad cold last Wednesday and it took her about 5 days to recover. We tried to keep them isolated but that's not exactly easy to enforce. His blood was tested again on Monday and his levels were better however he started getting a fever. He got up to 38.3 degrees and when Luke called they said if he got up to 38.5 to go to emergency. His temperature came down but he started showing a few more signs of having a cold. Yesterday he varied from 37 - 38 degrees but today he reached 38.2 degrees before we were due to go in and see the specialist. When we went in his temperature was 38.5. It was decided that they would take blood cultures to see why he had an infection. Within 30 minutes his temperature spiked at 39.5 degrees. The specialist saw Luke and said that unfortunately they couldn't let him leave with such a temperature and that he would have to be admitted.
So poor Luke is now in hospital till they sort out what is causing the infection. He had a chest x-ray so we'll find out the results tomorrow. Luke will be getting his central line taken out of his chest tomorrow. Yay!!!! It's been in him for over a year and there is a chance that this has become infected. However I'm pretty sure the infection will be due to a cold virus. Murray came down with a cold like a tonne of bricks yesterday afternoon. So he can't go near Luke at the moment. I'm just managing to keep a cold at bay - I've got the sore throat and a bit of a runny nose so I just hope it doesn't hit me in the next few days as one of us needs to go and be with him.
Dad has been sick for over a week now with a cough more than a cold. He went to the doctors the other day and he may have had whooping cough. He's been given some strong antibiotics and cough medicine so hopefully he will get better soon. On the last blog, I mentioned that Mum was going in for exploratory surgery on her bladder. Unfortunately once again the surgery got cancelled and she was rebooked for next Tuesday. She had a bit of a scare today when they called and told her they would have to cancel as they had overbooked. However when she said she'd been cancelled twice before they apologised and said they would get in touch with someone else. So hopefully things will go ahead next week. I just hope she doesn't get sick being around Dad.
So unfortunately the family is a bit isolated at the moment with lots of sickness going on. I'm sure Luke will be fine. It's probably best that he stay in hospital away from Murray at the moment but he hates being in there as it is so boring. It depends what all the tests show however he could be in hospital for anywhere from 2 day to a week. Let's hope it's a short stay. I'll keep you updated with how things progress.
Monday 14th February 2011
Sorry it's been a while since I blogged. Luke has had a few weeks of ups and downs in neutrophil levels that have stopped him doing things.
On Monday 31st Jan, Luke was due to start up chemo again after a little mini break however chemo was put on hold as his neutrophils were too low and he had a badly infected big toe. He was given antibiotics and a PEG injection to increase his immune system. He had also had trouble with his central line not giving blood, so they urokinased the line (like putting draino through the line) to clear it. It seems to have worked. After Luke's hair growing back quite well - darker and curlier than before - he unfortunately has lost most of it all again with this cycle.
The PEG injection worked miracles and instantly boost his neutrophils. This meant he was able to attend orientation at university with a friend on the Wednesday. Luke's actual orientation session for his IT course was being held on the Thursday however the Doctors decided to recommence chemo as his blood levels were okay. As chemo went too long throughout the day, he missed the session.
Monday 7th February was the 1st day of university for Luke and he was able to go to his first lecture. After lunch he had to go to the hospital for a lumbar puncture and chemo. That afternoon his blood levels showed he was neutropenic and he actually shouldn't have gone to uni. Unfortunately it is now a week later and Luke has literally no neutrophils so he is not able to go out in public places and as such has not been able to go back to uni. At least Luke can access all the lectures on the University of Canberra website. He said it's all been pretty boring stuff so far as it's all just introductions. We don't know when his neutrophils will pick up and how long that will mean he misses uni. It could be a few days or a few weeks.
The good news is that today Luke has finally stopped taking insulin for the steroid induced diabetes. Over the past week the insulin levels have slowly been decreasing and his blood sugar levels have been staying in a normal range. So hopefully now that the insulin has stopped things will return back to normal.
Luke has a few more chemo treatments left for this cycle. This should take him through till the 24th February. Luke will then see the specialist on the 2nd March for a review and also to get his central line taken out. Yay! It will be so good for Luke to have the tubes from his chest that have dangled around for the past year taken out. The reason they can take out the central line is that he will be going to maintenance chemo which will consist of mainly chemo tablets, steroids and the odd chemo injection.
Poor Mum has been having had a rough trot. She went into hospital on Saturday 5th for exploratory surgery on her bladder. She did all the fasting requirements and was sat in the waiting room along with lots of other patients. A doctor came out to announce that unfortunately all surgeries would have to be postponed as they couldn't get the camera working and had tried several others but it appeared to be a problem with the connecting equipment that couldn't be fixed on a weekend.
Mum was really disappointed. Her surgery has now been rescheduled for the 19th February with another doctor. So she still has the catheter. Hopefully things will be fixed up this time.
Amy started back at school last Tuesday. She is now in Year 10. She did get her elective of food and hospitality that she wanted. She was given Music as her other elective however she changed this to another cooking class called Ethical Cooking. So I'm hoping we have lots of tasty treats coming our way!
She has to do work experience in May however she has absolutely no idea what she wants to do with herself.
That's all our news for now.
On Monday 31st Jan, Luke was due to start up chemo again after a little mini break however chemo was put on hold as his neutrophils were too low and he had a badly infected big toe. He was given antibiotics and a PEG injection to increase his immune system. He had also had trouble with his central line not giving blood, so they urokinased the line (like putting draino through the line) to clear it. It seems to have worked. After Luke's hair growing back quite well - darker and curlier than before - he unfortunately has lost most of it all again with this cycle.
The PEG injection worked miracles and instantly boost his neutrophils. This meant he was able to attend orientation at university with a friend on the Wednesday. Luke's actual orientation session for his IT course was being held on the Thursday however the Doctors decided to recommence chemo as his blood levels were okay. As chemo went too long throughout the day, he missed the session.
Monday 7th February was the 1st day of university for Luke and he was able to go to his first lecture. After lunch he had to go to the hospital for a lumbar puncture and chemo. That afternoon his blood levels showed he was neutropenic and he actually shouldn't have gone to uni. Unfortunately it is now a week later and Luke has literally no neutrophils so he is not able to go out in public places and as such has not been able to go back to uni. At least Luke can access all the lectures on the University of Canberra website. He said it's all been pretty boring stuff so far as it's all just introductions. We don't know when his neutrophils will pick up and how long that will mean he misses uni. It could be a few days or a few weeks.
The good news is that today Luke has finally stopped taking insulin for the steroid induced diabetes. Over the past week the insulin levels have slowly been decreasing and his blood sugar levels have been staying in a normal range. So hopefully now that the insulin has stopped things will return back to normal.
Luke has a few more chemo treatments left for this cycle. This should take him through till the 24th February. Luke will then see the specialist on the 2nd March for a review and also to get his central line taken out. Yay! It will be so good for Luke to have the tubes from his chest that have dangled around for the past year taken out. The reason they can take out the central line is that he will be going to maintenance chemo which will consist of mainly chemo tablets, steroids and the odd chemo injection.
Poor Mum has been having had a rough trot. She went into hospital on Saturday 5th for exploratory surgery on her bladder. She did all the fasting requirements and was sat in the waiting room along with lots of other patients. A doctor came out to announce that unfortunately all surgeries would have to be postponed as they couldn't get the camera working and had tried several others but it appeared to be a problem with the connecting equipment that couldn't be fixed on a weekend.
Mum was really disappointed. Her surgery has now been rescheduled for the 19th February with another doctor. So she still has the catheter. Hopefully things will be fixed up this time.
Amy started back at school last Tuesday. She is now in Year 10. She did get her elective of food and hospitality that she wanted. She was given Music as her other elective however she changed this to another cooking class called Ethical Cooking. So I'm hoping we have lots of tasty treats coming our way!
She has to do work experience in May however she has absolutely no idea what she wants to do with herself.
That's all our news for now.
Tuesday 25th January, 2011
Wow - this time last year we were sat in the Emergency Department at the hospital having just found out that Luke had leukaemia. Who would have known what laid ahead of us. What an eventful, stressful, incredible year it's been. I think Luke deserves a medal for all he's been through and yet he still has the same resolve that he's had from day one with comments such as - "I'm okay" and "someone had to have it!"
Luke has had a tough week. Last Monday through general blood tests it was discovered that his glucose levels were way too high. They had been so for about a week prior but they were just monitoring the situation. It turns out the due to taking the Dexamethasone (steroid), Luke had developed steroid induced diabetes. A normal person would have blood glucose levels of 4 - 8. Luke's were in the high 20's. A typical day this week has been starting off around 20 and increasing to up to 31.5 in the evening. He has to prick his finger 4 times a day to test the blood glucose levels. He then has been having an insulin injection 2 times a day to try to bring down the high levels.(Yet another injection to the body). He started with an insulin dose of 20 in the morning and 10 in the evening and has been increasing this every few days. He is now up to 44 and 28 respectively. He finished this round of steroids on Sunday and we are now just starting to see his levels come down to under 20. So hopefully within the week his levels will return to normal and he won't have any long term diabetes - fingers crossed. He's been very good not eating anything with much sugar in.
Dexamethasone is one of the stronger steroids so hopefully when he gets onto his maintenance chemo for 2 years when he has to take a different kind of steroid he won't be affected.
Otherwise Luke has had a little minibreak from chemo. He starts up again this Sunday as long as his neutrophils aren't too low. At this stage they seem okay but could plummet any day based on this type of cycle he had last year. I'm hoping he doesn't plummet as he has Orientation week for University next week and Week one starts up on the 7th Feb. So if he becomes neutropenic he won't be able to go out in public places and Murray or I will have to go and sit up the back during the O Week session to get all the news (which they have told us parents do - so hopefully we won't look like the very mature age students up the back!).
It will be great for Luke to start Uni as it will give him something to focus on other than the X-box or TV. He has been getting out and about with friends. He went to the golf driving range last week and played a bit of pitch n putt. Yesterday he tried to play tennis, which didn't go so well as he said his legs were like concrete and he couldn't move. He just had to stand and hope the ball came to him!
Luke is aware that his fitness and leanness have disappeared. His muscles have turned to flab. So once he gets all of this intensive chemo behind him, he knows he will have to try and get fit again.
Amy has gone out tonight with her aunties and cousins to the Australia Day concert, so she was looking forward to seeing some good bands and musicians. Tomorrow, being a public holiday will probably just mean a quiet day at home for us. Murray is playing golf and Amy is working. I'd better sign off as the boys are calling me to come and watch a movie. I'll update when I have any news.
Luke has had a tough week. Last Monday through general blood tests it was discovered that his glucose levels were way too high. They had been so for about a week prior but they were just monitoring the situation. It turns out the due to taking the Dexamethasone (steroid), Luke had developed steroid induced diabetes. A normal person would have blood glucose levels of 4 - 8. Luke's were in the high 20's. A typical day this week has been starting off around 20 and increasing to up to 31.5 in the evening. He has to prick his finger 4 times a day to test the blood glucose levels. He then has been having an insulin injection 2 times a day to try to bring down the high levels.(Yet another injection to the body). He started with an insulin dose of 20 in the morning and 10 in the evening and has been increasing this every few days. He is now up to 44 and 28 respectively. He finished this round of steroids on Sunday and we are now just starting to see his levels come down to under 20. So hopefully within the week his levels will return to normal and he won't have any long term diabetes - fingers crossed. He's been very good not eating anything with much sugar in.
Dexamethasone is one of the stronger steroids so hopefully when he gets onto his maintenance chemo for 2 years when he has to take a different kind of steroid he won't be affected.
Otherwise Luke has had a little minibreak from chemo. He starts up again this Sunday as long as his neutrophils aren't too low. At this stage they seem okay but could plummet any day based on this type of cycle he had last year. I'm hoping he doesn't plummet as he has Orientation week for University next week and Week one starts up on the 7th Feb. So if he becomes neutropenic he won't be able to go out in public places and Murray or I will have to go and sit up the back during the O Week session to get all the news (which they have told us parents do - so hopefully we won't look like the very mature age students up the back!).
It will be great for Luke to start Uni as it will give him something to focus on other than the X-box or TV. He has been getting out and about with friends. He went to the golf driving range last week and played a bit of pitch n putt. Yesterday he tried to play tennis, which didn't go so well as he said his legs were like concrete and he couldn't move. He just had to stand and hope the ball came to him!
Luke is aware that his fitness and leanness have disappeared. His muscles have turned to flab. So once he gets all of this intensive chemo behind him, he knows he will have to try and get fit again.
Amy has gone out tonight with her aunties and cousins to the Australia Day concert, so she was looking forward to seeing some good bands and musicians. Tomorrow, being a public holiday will probably just mean a quiet day at home for us. Murray is playing golf and Amy is working. I'd better sign off as the boys are calling me to come and watch a movie. I'll update when I have any news.
Monday 10th January, 2011
Happy New Year to everyone.
We had a lovely Christmas Day lunch at Natalie's place (Murray's sister)with all the family. I think we all ate and drank too much as usual. However we had great fun and a lot of laughs playing charades later that evening.
Stephen (my brother), Beverley, Matt & Susie came down a few days after Christmas to spend some time with us. It's actually Stephen's 50th birthday today. They are currently on a cruise from Sydney to Melbourne to Tasmania and return on a Royal Carribean cruise liner. Hopefully the weather is good for them.
It has been weird weather, hot one day, raining the next. We also had a freak hail storm that hit our suburb and the neighbouring one's last Wednesday. It just seemed to come from no where and was a small concentrated storm cell. The hail stones were as big as golf balls and were bouncing in all directions. It was really loud and went for about 15 minutes or longer. We put a car cover and 2 blankets on my Honda Jazz but unfortunately it still has about 100 dents all over it. I've got to take it to the repairers to get assessed for insurance on Thursday. We also had damage to our verandah as the hail turned into ice in all the valleys on the roof and water was flowing over the internal side of the gutters and into the verandah roofing. All our neighbours have been affected in one way or another and will be putting insurance claims in.
Queensland has terrible floods happening at the moment. It must be devastating for everyone affected.
Luke has been feeling the effects of chemo and steroids again. He gets really out of it in the afternoon and has to have a rest. He's had a fuzzy headache which he always gets when he is on Dexamethazone (a steroid). Today was his last day taking these for a short while, so he'll no doubt have withdrawal symptoms in the next few days. Unfortunately he has another stint of these coming up. His blood levels have been okay other than his sugar levels being up. This is probably due to the steroids as well as the amount of lollies and rubbish that he ate when he went camping with friends on Friday night. I was a bit anxious as there was no mobile reception where they went(Hunnysuckle Creek) but I knew they were only 30 minutes away and someone could drive him home if he had any problems. They all survived - and he turned up around 11am Saturday morning as they came back for McDonald's for breakfast as it had been drizzling a bit and they couldn't be bothered cooking. They all had a good time though.
Saturday was Murray's birthday so we had a family dinner out at APK (Australia's Pizza Kitchen) at Woden. Everyone had a nice meal.
Amy wants to go to the beach during the holidays. Unfortunately Luke has chemo and with his central line he can't go swimming so he has no interest in going down the coast. So Murray and Amy will go this weekend for a few days and stay with his uncle at Mogo. Luke and I will catch up on movies and TV shows that we have recorded.
Mum had another trial run taking the catheter out but unfortunately it still didn't work. She can feel a bit of pressure and she needs to get this investigated. It could be a prolapsed uterus or diverticulosis. She goes in for exploratory surgery on her bladder at the beginning of February, so hopefully they can get to the bottom of what is causing the problem.
That's all our news for now. I'll touch base in a few weeks time.
We had a lovely Christmas Day lunch at Natalie's place (Murray's sister)with all the family. I think we all ate and drank too much as usual. However we had great fun and a lot of laughs playing charades later that evening.
Stephen (my brother), Beverley, Matt & Susie came down a few days after Christmas to spend some time with us. It's actually Stephen's 50th birthday today. They are currently on a cruise from Sydney to Melbourne to Tasmania and return on a Royal Carribean cruise liner. Hopefully the weather is good for them.
It has been weird weather, hot one day, raining the next. We also had a freak hail storm that hit our suburb and the neighbouring one's last Wednesday. It just seemed to come from no where and was a small concentrated storm cell. The hail stones were as big as golf balls and were bouncing in all directions. It was really loud and went for about 15 minutes or longer. We put a car cover and 2 blankets on my Honda Jazz but unfortunately it still has about 100 dents all over it. I've got to take it to the repairers to get assessed for insurance on Thursday. We also had damage to our verandah as the hail turned into ice in all the valleys on the roof and water was flowing over the internal side of the gutters and into the verandah roofing. All our neighbours have been affected in one way or another and will be putting insurance claims in.
Queensland has terrible floods happening at the moment. It must be devastating for everyone affected.
Luke has been feeling the effects of chemo and steroids again. He gets really out of it in the afternoon and has to have a rest. He's had a fuzzy headache which he always gets when he is on Dexamethazone (a steroid). Today was his last day taking these for a short while, so he'll no doubt have withdrawal symptoms in the next few days. Unfortunately he has another stint of these coming up. His blood levels have been okay other than his sugar levels being up. This is probably due to the steroids as well as the amount of lollies and rubbish that he ate when he went camping with friends on Friday night. I was a bit anxious as there was no mobile reception where they went(Hunnysuckle Creek) but I knew they were only 30 minutes away and someone could drive him home if he had any problems. They all survived - and he turned up around 11am Saturday morning as they came back for McDonald's for breakfast as it had been drizzling a bit and they couldn't be bothered cooking. They all had a good time though.
Saturday was Murray's birthday so we had a family dinner out at APK (Australia's Pizza Kitchen) at Woden. Everyone had a nice meal.
Amy wants to go to the beach during the holidays. Unfortunately Luke has chemo and with his central line he can't go swimming so he has no interest in going down the coast. So Murray and Amy will go this weekend for a few days and stay with his uncle at Mogo. Luke and I will catch up on movies and TV shows that we have recorded.
Mum had another trial run taking the catheter out but unfortunately it still didn't work. She can feel a bit of pressure and she needs to get this investigated. It could be a prolapsed uterus or diverticulosis. She goes in for exploratory surgery on her bladder at the beginning of February, so hopefully they can get to the bottom of what is causing the problem.
That's all our news for now. I'll touch base in a few weeks time.
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