Luke's Journey

Friday 16th December 2011

2011-12-16T02:41:00.000-08:00

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

2011-11-03T01:36:00.000-07:00

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.

Monday 10 October, 2011

2011-10-10T01:47:00.000-07:00

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.

Saturday 10th September 2011

2011-09-10T04:09:00.000-07:00

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.

Friday 29 July 2011

2011-07-28T20:05:00.000-07:00

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.

Sunday, 19th June 2011

2011-06-19T04:52:00.000-07:00

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.

Saturday 28th May 2011

2011-05-28T05:01:00.000-07:00

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.

Monday 2nd May 2011

2011-05-02T05:50:00.000-07:00

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.

Friday 1st April 2011

2011-04-01T03:31:00.000-07:00

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.

Tuesday 22nd March 2011

2011-03-22T04:23:00.000-07:00

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.

Wednesday 9th March 2011

2011-03-09T03:28:00.000-08:00

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.

Monday 7th March 2011

2011-03-07T01:08:00.000-08:00

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.

Saturday 5th March 2011

2011-03-04T17:38:00.000-08:00

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.

Wednesday 2nd March 2011

2011-03-02T03:08:00.000-08:00

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.

Monday 14th February 2011

2011-02-14T02:32:00.001-08:00

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.

Tuesday 25th January, 2011

2011-01-25T00:23:00.000-08:00

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.

Monday 10th January, 2011

2011-01-10T02:03:00.000-08:00

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.

Wednesday 22nd December 2010

2010-12-22T01:51:00.000-08:00

Well 3 sleeps till Christmas and we're looking forward to having a bit of a break from work and hospital and most importantly spending time with the family.
It's hard to imagine it's already nearly 11 months since Luke was first diagnosed with leukaemia. As a quick update on Luke’s journey - he has endured 5 cycles of intensive chemotherapy lasting about 8 weeks each. He has one more intensive cycle starting 3 January and this will take us through till the end of February. We can see a glimmer of light at the end of the tunnel; however he still has a long way to go with maintenance chemo till around May 2013. So far so good as Luke has been achieving remission at the end of each cycle, so that’s all we can ask. Even though he’s had lots of lows, he has had some good times during the year, such as getting his drivers licence, being able to drive his sporty Nissan 300ZX, turning 18, and getting through Year 12 successfully.

It was great to see Luke graduate last Wednesday. He put in a lot of effort to do the work set for him. As mentioned earlier in the year, Luke was unable to sit the AST tests at school as he was neutropenic, so he was given an exemption. His ATAR score (or university entrance score) was worked out pro-rata based on the work he did in Year 11 and 12. He achieved an ATAR of 87.95, so that was an amazing effort and we are really proud of him.

He has just heard that he's been accepted into the University of Canberra to undertake a Bachelor of Information Technology. So that's really exciting to know what the future holds for him. This was an early round placement due to the Principal's recommendation application that was submitted by his college. However, given Luke's ATAR score he would have gotten into university based on his own work. Luke and I went to the university today to talk to the course convener to get an idea about whether he would be able to manage full time study and discuss the possibility that he would be neutropenic during the first few weeks of uni. He was very helpful and we've devised a plan for first semester that should see him having easier units that he can manage without having to go into uni for lectures and tutorials. So hopefully all goes well.

I'd just like to take this opportunity to thank everyone for their support and understanding throughout the year. We really appreciate it.
If there’s anything this journey has taught me it’s not to take anything for granted and to treasure every moment with your family. So on that note – I wish you and your family a very safe and happy Christmas and a prosperous and healthy New Year.
I'll be in touch in the New Year.

Monday 1st December 2010

2010-12-01T23:10:00.000-08:00

Not long until Christmas - and unfortunately I'm not organised at all!
We finally have a completed kitchen and it's great. We are really happy with it all. I've finished painting the kitchen as well as the skirting boards so now I can sit back and admire it all.

Luke is going well. He has finished all his school work and no longer has me to nag him about getting his work finished. Nothing like doing a terms work of maths in a day and sitting the test!! Don't know how he did it but at least it's all done now.
His Year 12 Graduation ceremony will be on the 15th December. Hopefully he remains well and won't slip into neutropenia so that he can get to the ceremony. He will finish this cycle of chemo next Wednesday. We then see the specialist on Thursday to see how long of a break he will have before starting his last 8 week intensive chemo cycle. Hopefully they will give him a good 3 week break and let him have Xmas off. All being well the last cycle should finish by the end of February next year. We also need to see with the specialist how the maintenance chemo works after that. We know he will need maintenance chemo for at least 2 years and each cycles runs for 12 weeks however we don't know how much of a gap between cycles he gets.
Likewise we will need to see if he is going to have a bone marrow biopsy at the end of this cycle to see if he is still in remission. So at the moment Luke is tracking well and apart from not having a great deal of energy and feeling "off" somedays, this cycle is going without incident (other than his initial hives which seem to have settled down - he has been taking anti-histamines.

Amy decided she wanted to get a job to get some money to buy all the clothes that she keeps "needing". She started her first shift at Donut King at the Tuggeranong Hyperdome. She was a bit anxious at first, especially about the uniform that really isn't that flattering. However when I picked her up last night she had a big smile and enjoyed herself. So it will be good for her to have her own money coming in.

Murray's Mum, Ann, had her 70th birthday party last Saturday. A great night was had by all. I've attached a photo of Ann and Ross with all the grandkids.

Hopefully I'll update in a few weeks before Xmas, about the graduation and what the specialist has said.

Friday 12th November 2010

2010-11-11T14:52:00.000-08:00

Where is the time going to? I can't believe Xmas is just around the corner.
Luke is going well on this cycle of chemo although we did hit a speed bump early on.
He started chemo on the 28th Oct and by the 29th he had what we thought were a few mosquito bites on his arms and legs.(this was quite feasible as we've had the doors open in the house non stop while we've been renovating). On the Sunday 31st he went in for his next injection of Asparaginase and he seemed to have more spots all over him but they disappeared after an hour of so of getting up in the morning. They gave him a cortisone injection to ease the spots. By Tuesday/Wednesday the spots were turning more into a full blown rash or hives. It was a definite allergic reaction. When we went in on Wednesday 3rd for his next injection of Asparaginase they decided that he was having a reaction to Asparaginase. We couldn't understand why he would suddenly develop a resistance to this drug as he has probably had 50 of these injections over the past 9 months. Apparently this can happen. The interesting thing is that there has been another young male (21 years old) who has just been diagnosed with the same ALL leukaemia as Luke. He has just started having Asparaginase and reacted straight away with a more severe allergic reaction. You would have to think it would have something to do with the batch??
They are going to try and get PEG Asparaginase (1 injection vs the 5 equivalent Luke currently has) however this comes from Germany and needs approval through the Therapeutic Goods Association in Australia so this will take time to be approved.
In the meantime they are treating the reaction with steroids and antihistamines. It seems to stop the hives however the steroids are making him eat more!!

Luke is sick of me nagging about his school work. He only has a few weeks left before the teachers will basically close off the results for the year. He needs to finish his Maths and English to obtain prorata marks and finish year 12. I'm sure he'll get it done in time but it still makes me worry and nag!

The kitchen is all finished. I painted the ceiling and walls in the kitchen area. the only problem we have is the lack of a cooktop! We bought a new Electrolux induction cooktop that was basically dead on arrival. We've had lots of going backward and forward between Electrolux who say as it was installed it falls under warranty and needed repairing by Maynor and Cochrane (the agents in Canberra). We have been arguing that it is a new product that we paid a lot for and it hasn't been used so we wanted a new one not a repaired one. In the end Liz, the manager from the Good Guys at Tuggeranong where we bought it from (we know Liz and Julian Barrington from Luke's cricket days) stepped in and spoke to the Electrolux sales rep who approved a new cooktop for us.
It's been 2 weeks since this was approved and I chased Electrolux yesterday to see where the cooktop was. I was advised they were on back order from Germany and would arrive on 20th December!!! As you can imagine I was not impressed. Customer care spoke to sales who said they have escalated our issue and that it would still be at least 2 to 3 weeks before we could get one. I said surely there must be a retailer that has one in stock and they said to contact Good Guys to see and if so they could do some sort of deal. I contacted Liz and she called while I was out yesterday and told Luke she might have a solution for us. I've tried to call her this morning and I'm just waiting for her to call back. As I'm typing this, I've just taken a phone call from Maynor and Cochrane who have said they have a cooktop for us to install on Monday... so Liz must have worked some magic for us. It just goes to show you need someone with pull to make things happen otherwise as a little individual you have no say what so ever. I would therefore recommend Good Guys Tuggeranong to everyone.
I've posted a photo of our semi-finished kitchen as a few people have been asking what it looks like.

Amy was very excited on Wednesday - she had her braces taken off. She had a day of freedom with a beautiful smile until she had the retainers fit yesterday. She has day ones (clear plastic) to wear for 1 year and night ones (like clip on plates) to wear for 2 years. Unfortunately the happiness disappeared for a while as she had a lisp and her teeth were hurting last night. Apparently it takes a few days for your tongue to reposition itself with the plates in and this affects your speech. Other than that problem which I'm sure will improve her teeth look fabulous.

A quick update on Mum's situation with the catheter. She still has it in place but seems to be getting used to the bag. She went to see the specialist on Monday (ended up getting a private appointment to get in sooner than the Sep 2011 appointment she originally got given). He looked at all of her test results and scans and the only thing he can see is a slight thickening on one side of the bladder. He said in the next few weeks he would book her into hospital and have an exploratory look around. Hopefully he can find the problem and be able to fix it. In the meantime he has placed her on some tablets males take for prostrate problems, in the hope it will relax the muscles and spasms.
That's all our news for now. I'll post a blog again in a few weeks.

Friday 29th October 2010

2010-10-28T15:50:00.000-07:00

Luke is officially an adult! He turned 18 yesterday.
It's hard to imagine where the years have gone to but as I keep telling him, he'll always be my baby boy. It's been a tough year for him so it was nice to be able to celebrate his 18th with family and friends. As we knew chemo was starting around his birthday we decided to have his party last Saturday. He had a fabulous time. The first party was a lunchtime/afternoon BBQ with family. The second followed straight afterwards at 5pm, 15 boys + 1 girl (she’s one of the boy’s) came over for an X-Box LAN party. We had 4 TV’s set up in the lounge and family room and they were connected to a switchboard that allowed them to all verse each other. The party ended up around 2.30am so they all had a great time.

We went and saw the specialist on Wednesday and he was confident enough that Luke's blood test results are all going well that he said Luke did not have to have a bone marrow biopsy. We have been put under the care of Dr James D'Rozario now as Dipti has been off for a few months now. It would seem that she is not well herself so hopefully all is okay with her.
Unfortunately Luke started chemo today and we ended up having 9 hours at the hospital!! Not much fun on your birthday!! I took a cake in for the nurses so that they could have afternoon tea and sing Happy Birthday to him. As we didn’t leave the hospital till 6.30pm, Murray and Amy came into Woden and we had dinner out.
Luke is on an Interim Maintenance II cycle for 8 weeks. We are hoping like the last maintenance cycle that this one won't be too bad on him.

Murray and I can't believe that our 5 weeks leave is almost up. We need to go back to work for a holiday. The flooring seemed to take forever and has been hard work but so worthwhile. The kitchen looks great. The finishing touches by the electrician and kitchen company are being completed today. That will then just leave me to do the painting of the new skirting boards around the new flooring and the kitchen ceiling. I’ve already painted the family room and a new front door. Shame I’m already sick of the painting because there is still quite a bit to do. I’ve decided to slowly paint through on my days off rather than bust a boiler trying to get it done in the next few days. I'll post a photo of the kitchen once it's all finished.

We did get up to Sydney a few weekends ago. It was good to get away but quite tiring for everyone - Luke especially due to all the walking.
The boys really enjoyed the Motor show and Luke filled the memory card on the camera full of car photos! Amy and I really enjoyed Fame. We had a nice dinner at an Italian restaurant around Darling Harbour then headed back to the apartment. The next day Amy and I shopped while the boys went to the movies.

Luke is still trying to do some schoolwork as he feels up to it. He's under the pump to try and get some assessment items completed in the next few weeks. Hopefully I'll update the blog in a few weeks.

Tuesday 5th October, 2010

2010-10-04T23:07:00.000-07:00

I know it's been 3 weeks since my last blog. Sorry about that. We've been extremely busy with all sorts of things.
Oh my God - what have we done!! The kitchen renovation is in full swing. Murray and I started our 5 weeks leave on Wed 22 September. In the past 2 weeks we have packed up the kitchen and set up a temporary kitchen in the study and had a garage sale to get rid of some items and junk. We have about 50 square metres of flooring to replace. Murray has used the hammer drill to pull up the tiles from the floor. He did this over 3 days in shifts of a 3 or so hours a time. What a job!! however if we thought that was bad, we needed to then hire a concrete grinder to get rid of the glue and tile residue. What a mess - we had concrete dust billowing out of the house, it looked like it was on fire! At times Murray and I couldn't see a thing in the house. The machine was hooked up to a vacuum cleaner however it really didn't seem to do that much to help clean up. It took days to clean up all the dust. I had to sugar soap all the walls and the floor has been swept, vacuumed and mopped countless times.
The kitchen got ripped out this morning. They had given us till next Monday to lay the new floating laminate floor however we have since discovered that we cannot lay this under the island bench as planned. So we will need to wait until the cabinets go in to lay the floor. That's okay because I need to paint the family room in the meantime. Hopefully in the long run all this hard work will be worthwhile.

Luke recovered from the chemo overdose. Chemo ended up being on hold for 2 weeks and he recommenced the cycle on 20th Sept. The doctors decided to ditch the 2nd lot of cytarabine as he'd already had this. He hasn't been doing that much as he has been feeling really tired and lethargic, after walking 50m he feels like he's run a marathon. He's been neutropenic however his bloods have been hanging in there and he hasn't needed any more transfusions. With all of the work going on at home, he has spent the past 5 nights staying at his Aunty's house to avoid all of the dust. He had the house to himself as Heidi and the family went to the coast for a little mini break during the school holidays. We've been ringing up to see how he's going and he's been coming home to see the nurse to give blood samples and to eat and get supplies. Amy also has ended up staying at her other Aunty's house (Nat) and spending time with her cousin Emma. They have both come back home today.

Luke finished this cycle of chemo on Saturday. Luke and Murray went in to see the specialist today and find out what the plan is from here. He now gets to have a 3 week break before going back to the specialist to see whether he needs to have a bone marrow biopsy and when he will be starting the next maintenance chemo cycle. At this stage it could start up again around his 18th birthday on the 28th October. That's a bit mean however he will at least get a good break. Hopefully his bloods will recover in the next week and he'll no longer be neutropenic and be able to get out and about. I need to start thinking about what we are going to do for his 18th. He'll probably do something with his friends and something separate for the family. As mentioned in the last blog we are planning on going up to Sydney on the 16th October for the Motor Show and Fame. So all being well Luke will be okay by then and we'll have a nice time away.

Mum is till connected to the catheter. Unfortunately when they tried again it still didn't work and they discovered she actually still had a very bad infection. So she has been back on antibiotics to clear that and the doctor is trying to get her in to a urologist to try and get to the bottom of the problem. She is however much better than she had been.

I'll probably not blog for another 3 weeks as Luke will not have any treatment for a while.

Thursday 16th September, 2010

2010-09-16T03:25:00.000-07:00

Well Luke has had a rough week. His chemo was on hold as his neutrophils were too low to continue cytarabine. On Thursday 9th Sep, Luke was given a PEG injection to increase his neutrophils. This seemed to work within a few days. We found out that this injection costs about $5000 - $6000 so obviously it is not something that is given all the time (this is covered as Luke is still technically an in patient of the hospital). On Friday 10th Luke's lumbar puncture still went ahead as planned. We were told his chemo would start again on Saturday. When Saturday came we were once again told chemo was on hold as his haemaglobin and platelets were too low. On Sunday Luke needed 2 x blood transfusions. So that took 6 hours by the time they cross matched his blood.
Monday was a bit of a nightmare day for Luke and Murray. Over the weekend, there had been talk about a problem with pharmacy and a stocktake of chemo they had done. The doctors confirmed that they are 90% sure that Luke was overdosed on chemo. When he had cytarabine back on Thursday 2nd September it would appear that instead of the 160mg over 4 days he was given 800mg over 4 days instead. He is okay, however the overdose would explain the problems that are occurring with Luke's bloods and immune system going so haywire. It appears that the higher dosage is used in paediatric protocols, so as Luke is relatively young they seem to think this is why he has coped alright with the mix up. The doctors are monitoring Luke's blood levels and his chemo is currently on hold till these build up to an acceptable level.
The boys started the day at 9am at the hospital to see the doctors and ended up leaving at around 6pm after much discussion throughout the day between doctors, nurses and pharmacy and another 2 x blood transfusions. So it turned out to be a very long, stressful day for them.

So at this stage chemo is still on hold and his bloods are slowly picking up, chemo will probably start back up on Monday. I'm starting to stress out a bit about the delay in the chemo. Only a few days before all of the dramas, I went ahead and booked tickets for the boys to go to the Motor Show in Sydney on the 16th October. We decided that Amy & I would go to see Fame the musical and I've booked a nights accommodation. This date worked out well and fell at a time when he would have had 3 weeks between chemos. The problem is the longer this delay keeps happening now, the more chance that he will either just have finished chemo and probably be neutropenic or he'll still be on treatment. The boys have a week to play with as the motor show is on till the 24th October, however Amy and I are locked in with our show dates. So worst case scenario is that Amy and I will have to go up by ourselves and the boys may miss out of the motor show!! It just goes to show, I shouldn't plan things too far in advance because you never know what's going to happen!

Mum unfortunately still has the catheter. The good news over the last few days after ultrasounds, CT scans and blood tests is that everything appears normal. There are no masses or cancers etc showing anywhere in the abdomen that could have caused problems. She went to the doctors today and they have agreed that next Wednesday they will try again to remove the catheter.So hopefully it works this time around. I guess that just leaves whether the parkinson's is causing any problems.
I cannot believe Mum & Dad's kitchen is just about done!! They ripped it out on Monday and installed the cabinets that afternoon. The finishing touches to the cabinets happened on Tuesday/Wednesday with handles etc. The plasterer came today and patched up all the bits and pieces (they had to put up new gyprock where the tiles on the walls had been glued on a bit too well!!)
I went over this afternoon to show Amy the kitchen and stayed to clean the cupboards/drawers and start finding a home for all their stuff. It really looks great. Being white the kitchen looks much bigger than the old wood kitchen. Hopefully they will have much greater access to everything now.
We have decided to go ahead with the same company, Caliber Kitchens. So hopefully work will start on our kitchen in 4 weeks. Our problem at the moment is trying to finalise colours in the kitchen as well as floorboard colours to go through the entry, kitchen, family room and hallway. Unfortunately everyone has a differing opinion!

I'll update when there is any further news.

Wednesday 8th September, 2010

2010-09-08T05:20:00.000-07:00

Well it's been a very up and down few weeks not only for Luke but for poor Mum.
She had a bladder infection that was being treated by antibiotics. However by Thursday 26th August she was in absolute agony as she hadn't been able to pass urine for quite a while. She went and saw the doctor at 6pm and got sent to the emergency department at the hospital. Mum & Dad waited from 7pm till 11.40pm to get seen to. They put a catheter in and got over 2 litres of urine. She certainly felt instant relief.
By 3am they were ready to let her go however being so cold at that time of the morning and taking into account her age they decided to keep her in overnight and said Dad could go home and get some rest and come back and pick her up at 9am. He didn't sleep at all and went back in, only to find when I called at 11am they were still there. I decided to go into the hospital and let Dad go home and get some sleep. The doctors decided to do an ultrasound and that meant clamping off the catheter and drinking lots of water. We had hoped that when she came back she would be let go at 5pm however the doctors said her output was too much. Mum was getting very frustrated at this point and kept saying you made me drink bottles of water before the ultrasound!
Once again they decided they wanted to keep her overnight to make sure things settled down. So I left about 7pm and Dad went to pick her up the next day.
She came home and within a day had gastro. She felt horrible for about 3 days and to top it all off Dad caught the gastro bug and was throwing up as well as gastric for the next few days. It turns out there was an outbreak of gastro at The Canberra Hospital and a ward was shut down (it was where Mum was). Mum & Dad didn't want me to go over and help in case I picked anything up and passed it on to Luke. So the poor things struggled along by themselves for about a week. I kept passing supplies through the door.
The community nurses attempted to remove the catheter last Wednesday but unfortunately she was unable to pass urine and they put the catheter back in. She is finding this really frustrating as she has to have a bag to carry around with her and it's a bit hard to wear trousers with the bag. Unfortunately more bad news today - they gave her another week with the catheter to try and get the muscles to settle down and stop clamping shut. Unfortunately once again she had no success is going to the toilet naturally so this afternoon the catheter was re-inserted. She will go to the doctors tomorrow to see what can be done from here. There is some thought that maybe Mum's parkinson's tablets are causing the problem. So hopefully they can get to the bottom of the problem and come up with a solution.

Luke has been feeling a bit out of it the past few weeks. He started chemo again last Wednesday after being put on hold for a week. He has been taking chemo tablets daily and going in for an injection of Cytarabine from last Wednesday to Sunday. We went in on Monday to see Dipti however we don't quite know what the problem is however she has extended her leave until October. So we have another month without Luke's specialist. Raj, Luke's resident doctor has been really good and will look after him for the next month with consultation through one of the other haematologist specialists. Luke was due to have another 5 day round of Cytarabine starting tomorrow however his immune system has plummeted in the last few days and a decision was made today to postpone this till Monday. His neutrophils have dropped to 0.4 so he is neutropenic and as mentioned his immune system is very low. He was also due to have a lumbar puncture with chemo inserted into the spine tomorrow however there was a problem booking this in with imaging (he has this done under x-ray) so this has been pushed back to Friday.

The other weekend Murray and I went along to the University open days. Luke was neutropenic so he couldn't go out in such a public place. It was quite interested walking around all the stalls. We sat in and listened to a few talks at University of Canberra and Australian National University. Luke will be trying to do a Bachelor of Information Technology. He loves his computers and would like to continue in this field. We have been extremely lucky with his college helping him out. He has received an exemption from sitting the AST exams (these are taking place this week) and go towards their university entry score. By having an exemption Luke's university entry score will be worked out based on his Year 11 and 12 work. The college is also assisting Luke by applying to gain entry to University of Canberra via a principal's recommendation. This means that the principal can put forward students that he feels would benefit going to university that might not get such a good score via exams for various reasons. We have put in Luke's university applications that are due by the end of September and have put the principal's recommendation course as his first preference. He is then applying for other preferences based on the university score he will achieve. So hopefully he get's into some sort of IT course as he should be able to manage this next year being on maintenance chemo.

Murray and I have been busy planning our new kitchen. We are just about sorted and hope in the next few days to get the final plan and quote and get things underway. We have both got 5 weeks off from the end of September and all of October off. This time will be used to pull up the old tiles through the main part of the house and probably put floating laminated timber floorboards down instead. I also have quite a bit of painting to do and of course we hope the kitchen will go in during this time.
Mum and Dad have beat us to it and will be getting their new kitchen installed from next Monday. Murray and I will go over on Saturday and pack up everything in readiness. It will be great for them to have the new kitchen as they just cannot bend down to get into the back of cupboards any longer and will have better access via drawers.
Better sign off and get to bed. I'll be in touch when we have any further news.

Thursday 26 August 2010

2010-08-25T19:22:00.000-07:00

Luke's had a bit of a set back. We went in yesterday to start the next phase of chemo – reconsolidation. He had a lumbar puncture and while lying on his back for the required 2 hours we thought he would start up chemo. He is neutropenic at the moment and they have decided his immune system needs to be stronger before they recommence chemo. So it has been postponed till next Wednesday.

It’s a bit difficult at the moment with him being neutropenic and prone to infection. Amy lost her voice on the weekend and her nose started running yesterday, so she has a collection of tissues and a very red nose!
We think Heidi (Murray’s sister) has pneumonia along with cousins also having colds or sinus symptoms. So we need to try and keep him as isolated as possible.

We went in this morning for our usual visit with Luke's specialist, however she is off sick and no-one called to tell us not to bother coming in. So that was a bit of a wasted trip. While Luke is neutropenic if we don't have anything scheduled in the hospital a nurse comes out daily to get a blood sample. This is how they test his blood levels and immune system.

So we'll have fairly quiet week while we all recover!

Friday 20th August, 2010

2010-08-19T19:26:00.000-07:00

Luke has had a few weeks with very little hospital visits which has been nice.
He hasn't had any chemo since Thursday 12th August. He has however had to take steroid tablets for a week, which has shown an increased appetite - eating non stop like the last time he was on steroids and gaining a moon face again. He did appear to get a bright red rash or pimples all over his face/arms/back. The doctors have said they think it was a reaction to the last dose of blood products for antithrombin III. The rash seems to be not as angry now but still there. Hopefully it will fade in the next few weeks.

He seemed to be going really well and getting out and about, doing a bit of schoolwork but when he finished taking the steroids(Dexamethasone) this Tuesday he has gone downhill. He actually has till next Wednesday 25th without any chemo or tablets - this is sort of a mini break between the re-induction and re-consolidation phase. We think he must be suffering withdrawals from the steroid because his joints, especially his knees are in agony. Whilst he was on the steroids he was waking up at 6.30am every day (which is very unusual for him). Now that he's stopped taking them he is in so much pain he can't really sleep at all during the night. On Wednesday night he came down to us several times during the night saying he was in agony - he took a range of pain killers. Last night wasn't much better - he takes a strong pain killer that is supposed to last 4 hours but it takes about 20 mins to kick in and then he gets about 2 hours relief before he was getting woken up in pain again and needed to wait till he could take another tablet. I've checked with the hospital and we can up his dosage so hopefully tonight will be better for him and he gets some sleep. I keep trying to get him to have a rest during the day but he reckons he can't sleep.

We also found out yesterday that he has just become neutropenic. It seems strange as he hasn't had chemo for a while but I guess everything is catching up with him. So he won't be able to go out to public places for a while just in case he picks up an infection. His hair has started falling out again which is a shame because it had grown back quite well. Once again it isn't all falling out but getting quite thin in coverage. It was enough to make him pull out a hat yesterday when we went to the hospital to see Dipti so it must be worrying him.

They have been having trouble getting blood out of his central line for the past week so yesterday they decided to urakinase the line - which means injecting a protein which breaks up the blood clots that may have formed over the entry point. The nurse explained it like putting draino in the sink to clear the drains!!
He had this done once before in March. It seemed to work and they could get blood from each line afterwards. Hopefully it doesn't reblock again.

It was Murray and my 21st wedding anniversary last Thursday 12th August. As Luke was fine at that stage with no treatment happening we decided that we would head away to Bowral for a break on the Friday night. We decided Luke was old enough to look after Amy and she was old enough to look after him! They had all the family checking up on them over the 2 days also. As it turned out they had a good old time with Luke making a gourmet meal for them both on Friday night followed by bacon and eggs the next morning. We came home to a clean house (very surprising and much appreciated) and lots of shopping dockets for reimbursement for all that they'd bought! Murray and I had a fabulous time just relaxing and wandering around Moss Vale, Bowral, Mittagong and Berrima. We got home Saturday evening with some beautiful fresh bread from Berrima for soup for dinner.

That's about all our news at present. I'll update in a few weeks unless there is any other news in the meantime.

Friday 6th August, 2010

2010-08-06T00:16:00.000-07:00

Congratulations to Luke!!!! He got his drivers licence today and now has the freedom to roam as he pleases. Although being a Mum, that does scare me just a little!!!!
It's so great to see him achieve something he's wanted for a while. He's been taking lessons with a driving instructor for the past 4 weeks (about 2 lessons a week). In the ACT the driving instructor marks off competencies and do two mini driving reviews followed by a final drive.

I've attached a photo of Luke's car for those who haven't seen it. Last November Murray and I saw this Nissan 300ZX down at the local shops - we had seen it about a month earlier in the same place and had assumed it had sold. We knew Luke wanted some sort of sporty car and when we found out it was in his price range we took a look. He also wanted to learn to drive a manual car and we only have an automatic.

It turned out the guy selling it was about to move houses and did not have space for his 3 cars, plus his wife was trying to get him to sell his mid life crisis car!!!
It's 20 years old however it looks really good and only had 150,000km on it. It drives really well and is a 2 seater, 3 litre, non turbo car. So although it looks and sounds really sporty, I take comfort in the fact that it isn't a turbo car and he can only have 1 other person in the car. The car cost $5000 and it really looks as if it should cost a lot more. Someone Murray knew through work has had 6 x 300ZX's over the years and he said we should have paid at least $8000 for it.

It's so nice to see Luke happy and I know he is going to look after his pride and joy and enjoy driving it. Luke is starting to feel the effects of the chemo. He's getting tired throughout the day quickly and having trouble concentrating for long periods of time on any schoolwork. I dare say his blood levels will start dropping soon and he'll be neutropenic, so he'd better make the most of his time out in the car while he can!! We've had every day this week at hospital. The one day we thought we would have off, we had a call that his fibrinogen level was low so we had to go in and get some cryoprecipitate (a blood product that helps with clotting).

Thursday 29th July, 2010

2010-07-28T18:52:00.000-07:00

Great news again, Luke is still in remission. It is a very uplifting to know that after 3 cycles of chemo he is still keeping this disease at bay. It's hard to imagine that this all started 6 months ago. After having our world turned upside down, we have all had to adapt and I can truly say we have now settled into our new life of juggling hospital visits, work and life in general. Luke's still got a lot ahead of him. The next 6 months of intensive chemo are going to knock him around, he'll have good days and bad days.

Luke started chemo yesterday. He had a lumbar puncture under x-ray. he also has Methotrexate injected into his spinal fluid at the same time to kill any traces in the spine going to the brain. We had a 10am appointment and as often is the norm, things were running late. So he didn't go down to x-ray till 12. He then should lie on his back for 4 hours after the procedure but he generally feels okay and we left after about 3 hours. During his time waiting on his back he had his other 2 chemos for the day via the central line, Vincristine and Doxorubicin.
He's back on steroids for this cycle, Dexamethasone. This is a different steroid from the one he took during his first cycle. So it will be interesting to see if he gets the moon face and the outrageous appetite he did before! The other chemo drug he will have this cycle is L-Asparaginase. This is the one in the backside that he says feels like an extremely painful bee sting.
He's feeling a bit yuck today. He always does when he starts back on chemo after having a nice break.
I'll update you probably in a few weeks unless there is something else to tell in the meantime.

Thursday 22nd July 2010

2010-07-21T20:18:00.000-07:00

Okay - I know it's been an awfully long time between blogs. That's because we've all been in such a good place at the moment. Luke finished his interim maintenance chemo on the 10th July. This cycle was really kind to him. He was not neutropenic at all and his blood levels didn't drop under levels that required any red blood transfusions or platelets. He did need some blood products, anti thrombin III (this stops clots going to the brain) and cryoprecipitate (to stop bleeding).

We had a few funny situations when Luke was on increased levels of Methotrexate via the IV. To keep your kidneys working properly and to flush out the toxic waste, you are given some folinic acid tablets that need to be taken every 6 hours. I left it to Luke to set his alarm to remind him when his tablets were due. He took his 7am dose correctly, then his 1pm was taken at 2.30pm. When the tablet was due at 7pm, Luke sheepishly came out at 9.30pm and said he'd forgotten to take it. I got really cranky and called the hospital to make sure all would be okay. They said it was fine but to take the next one at 1.30am. So after testing his alarm on the phone several times we all went to bed. I was awoken by Luke at 6am in a panic saying he hadn't taken his tablet at 1.30am!!! I was livid, telling him off and saying I couldn't do everything for him all the time - that he had to take responsibility for these things some time. He took a tablet then. When we were able to call OOS, they laughed and said to come in with the tablets and they'd test his levels to make sure all the methotrexate was out of his system. As Luke and I were about to get into the lift at the hospital, he turned to me and said "wouldn't it be funny if I actually did wake up at 1.30am and took the tablet and didn't remember". He then asked if I had checked how many pills were left in the bottle. We were prescribed 8 tablets and there were 3 left and we had accounted for 4 doses that we knew he had taken.
SO sure enough, Luke HAD woken to the alarm, got out of bed to get the tablet and water then went straight back to bed and didn't remember a thing!!!!!!
Luckily for him all of the blood tests came back fine and his mucking up of times didn't affect anything. We certainly had a good laugh over that one.

Luke has certainly been making the most of feeling well. He's been out with friends quite a bit. Talk about big kids - they have all bought nerf guns (plastic toy guns that shoot out foam bullets) and they've been running around shooting each other at night with LED lights on their guns!!!! Luke has been working on Math's work while school holidays have been on and he's just about finished Term 1's work. He seems to be coping quite well with it. We had a parent/teacher night at the college last night. It was good for Luke to catch up with teachers and see what the plan of attack is for this semester. Luke has been taking driving lessons with an instructor with the hope that in the next few weeks he can get his driver's licence and be able to drive himself around whenever he wants! That's a bit scary but he'll enjoy driving his pride and joy.

Amy had a very quiet and lazy school holidays, spending quite a few days in PJ's.
We went to see the latest Twilight movie and her Aunty said she had the books. Amy hates reading however she has not been able to put these books down. She read the first book in 2 days - which is amazing for her. Amy just called me excited that she finally managed to get an elective subject she wanted to do. She was originally put into Advanced Science (which really is not her cup of tea) and she has now gotten into Media and Photography.

I took some flex time off work for the holidays. As we won't be spending money on any holidays in a hurry, we have decided to renovate our kitchen. So much of my time off was spent researching various things. We are going to get some quotes/designs done in the next few weeks and hopefully during the next holidays in Sep/Oct get the kitchen put in. Luke will have just finished the next chemo cycle so it should be good timing. We will also need to replace the flooring throughout the kitchen/family rooms so it will mean time off for Murray and I while we do the floor and painting walls etc.

Luke had a bone marrow biopsy yesterday to see if he is still in remission. We won't know the results till next week. He will then start chemo next Wednesday 28th July. This cycle is called Delayed Intensification. It basically takes us back to the beginning with 4 weeks of reinduction and 4 weeks of reconsolidation. So unfortunately knowing what those cycles were like it is going to be much more intensive than this last cycle and his blood levels will definitely drop. So we are all making the most of the good times we are having at the moment.

Wednesday 30th June 2010

2010-06-29T17:54:00.000-07:00

Well it's been pretty quiet on the home front. Luke's blood levels have remained stable and he hasn't been neutropenic yet, which is a good thing. He is currently on an interim maintenance chemo which seems to be a lot kinder to him. He's certainly been making the most of being able to get out of the house. We've been to the movies a few times. The other weekend, Murray and Luke saw the A-Team while Amy and I went to Shrek 3D. Both movies were good. Then this weekend Luke ditched us to go with his friends to see Toy Story 3 (Murray, Amy and I went to a different session). What a great movie - very funny in places. Luke has also been over to friends places several nights, playing X-Box,a boardgame - Risk, and Poker. Mind you his latest escapade saw him walking in the door at 2am!! He tells me they lost track of time as they were so engrossed in the X-Box tournament they were playing and got a shock when they saw how late it was. I guess when you're 17 and some of your friends are 18, I have to let the strings loose sometime!! He'd just better not do that too often as I laid awake tossing and turning, waiting for the door to open - not good when you have to wake up a few hours later to go to work. Murray naturally heard nothing!!

Luke managed to hand in the assessment item requirements for college for the semester. So at least he has caught up with 3 of his 5 subjects. He didn't manage to get IT Programming done or Maths. He is hoping to catch up with these over the next 3 week break that the college has and into next term.

We are heading into the hospital this afternoon for a big day of chemo. He has 2 drugs via the central line (one of these takes about 2 hours to go through). Then he has a lumbar puncture under x-ray with chemo injected into his spine. This is booked for 4pm so it could be a late evening, as depending on the doctor or nurse you speak to he should lie on his back for 2 to 4 hours after the procedure.

It's Dad's birthday today. HAPPY BIRTHDAY. As chemo will finish so late today we won't be able to go out for dinner. Luke and I are going over for lunch before heading into the hospital. We'll have to do something for Dad on the weekend.

Luke has another injection on Friday followed by a week's break then chemo via the central line on the 10th July. This will then end the current chemo cycle and he'll have a few weeks break before having a bone marrow biopsy. So I probably won't have much to tell in the next few weeks.

The next round of chemo will probably start up again at the beginning of August (dates still to be confirmed). This cycle goes back to the start with a reinduction and reconsolidation phase for 8 weeks. These cycles are very intense so he'll probably be not so good during that period.
I'll be in touch when I next have any news.

Friday 18th June 2010

2010-06-18T03:39:00.000-07:00

I've just had a call from a friend who has reminded me that I haven't done a blog!!!
Luke's had a better end to the week than the start. He was still feeling headachy and sick in the stomach at the end of last week into the long weekend. However he is much better this week and has been eating okay again.

Last weekend was a long weekend and on the Monday, Murray's sister Heidi called and said the family was going go-carting. Luke and Amy thought that would be a bit of fun so off we went also. I watched everyone have a good time - the boy's were all very competitive!!

Luke has been getting stuck into some school assessment items. He's got through quite a bit which is good considering how he had been feeling, and considering he's been catching up.

Luke had chemo on Sunday and has had a mini break. He goes back this Sunday for the next dose and unfortunately it is the drug that we think is making him sick. He hasn't had Methotrexate via the central line before (only injected when he has the lumbar puncture) and unfortunately they keep increasing the dosage as this cycle goes on making it more toxic. He's also got a lumbar puncture next week. So we are back to a busy week and fingers crossed his body is used to the chemo again and he won't get sick.

Everyone else is doing okay. Amy got over her cold and luckily no one else has caught it. Murray went to Brisbane for work on Wednesday and got back late last night. He had a good time although the State of Origin results were not in his favour and he found himself in a foreign land!!!!

Have a good weekend.

Wednesday 9th June 2010

2010-06-09T03:42:00.001-07:00

Sorry I've just realised I haven't done a blog entry since last Monday.
Luke started Interim maintenance chemo last Monday and by Wednesday, after having had such a nice break from chemo, he felt rotten and it hit him pretty hard. It's amazing how the body adapts so quickly to having poison in it.

This time round he is getting a few fuzzy heads. Today he came home from chemo with a throbbing headache and proceeded to throw up before heading to bed for a sleep. It's very unlike Luke to sleep during the day so he obviously needed it.
He's back at the hospital tomorrow for two lots of chemo via the central line. One of the drugs keeps increasing every 10 days in intensity so I'm hoping he handles it okay.
At this stage his blood levels are all fine and just within a normal person's range. I'm sure it won't be too long before these drop.

He has been getting stuck into a bit of school work. He's running out of time to get some assessment items in but hopefully he'll get them finished in time.

Amy has been home sick from Thursday last week to yesterday with a really bad cold. It's been difficult trying to keep her a little isolated from Luke. She's been wearing a mask whenever she's been near him and the can of Glen 20 has been working overtime - much to everyone's hate of the smell of it!!
She was very bored and we borrowed a puzzle from 'the Pears' - our neighbour's up the road. It was a lovely old fashioned Pears soap puzzle. It certainly kept her entertained and she even became obsessive about finishing it!
So far the rest of us have avoided getting sick but time will tell.
I'll update you again some time next week.

Monday 31st May 2010

2010-05-31T04:54:00.000-07:00

Great news - Luke is still in remission after the last cycle of chemo.
It's great to know that he is responding so well to the treatment. One of the bone marrow samples went to Sydney where they test for minute traces of leukaemia. Apparently this was all clear. The only test they do not have a result of is a cryogenetics test. This is to see if there are any abnormal chromosones that have returned. This will take a bit longer to get the results of but all indications are that it should also be clear.

So today Luke started the next round of chemo. This cycle will go for 7 weeks. He was due to have a lumbar puncture at 12.30.He has the lumbar punctures under xray now as they had trouble last time due to scar tissue build up. The xray guides them to the correct place in the spine. Murray and Luke got there at 11.45 and when it was time to go down to imaging the chemo drug needed to inject in his spine wasn't ready so they missed that appointment slot. They sat around waiting for a timeslot to become available but later in the afternoon the xray machine broke down. There was then talk that they would do the lumbar puncture manually on the ward as per the early days - but they decided against it. So the plan at this stage is that the lumbar puncture is now booked for 9.30am tomorrow morning under xray (assuming they have fixed the machine!!). The boys ended up walking in the door at 6.30pm as they then had to wait around for his normal chemo drugs via his central line. He is getting vincristine and methotrexate.

I've just remember on the last blog there was mention that we were moving to ward 14A and that posed problems with blood tests and chemo on weekends. As it turned out when we saw the doctor last Thursday she said the decision had gone full circle and that we would be staying on ward 14B in room 22 for chemo and under OOS (Oncology Outreach service). It apparently was too hard to work out the logistics of Luke's protocol around Monday to Friday hours. So it was best to keep him where he was and with what was working.

Time to get to bed .... I'll update you next week.

Wednesday 26th May 2010

2010-05-26T05:15:00.000-07:00

Luke had the bone marrow biopsy on Monday and all went smoothly. We probably won't know the results of whether he is still in remission till later in the week/early next week.

Although Luke has been at home since 24 February we have still be classed as an in-patient of ward 14B and fall under OOS (Oncology Outreach service). Therefore we would go into the hospital regularly for chemo treatments and on the days that we didn't need to go into the hospital for treatment, a nurse would come out to our home to take Luke's blood samples.
There is talk that Luke will be discharged tomorrow. Chemo is due to recommence again next Monday 31st May. He will be on an Interim Maintenance I plan for 7 weeks.
There is also talk that for this round of chemo, Luke will be treated as an out-patient and receive treatment in ward 14A. This means we will still go into the hospital for chemo. What will change is the taking of blood. They have initially said that they do not like to take blood on the 14A ward so we would need to go to pathology for blood samples. However in pathology they can't take his blood from his hickmans central line - they would need to jab him in the arm. This doesn't make much sense as he has a fully functioning central line that blood can be taken from rather than turning his arm into a multitude of pin pricks, especially as the majority of times he needs daily bloods. So I will have to discuss this further with the doctors when we go in tomorrow. The only other difference with going to 14A as an out patient is that we will need to pay for Luke's prescription drugs such as his anti fungal and anti viral tablets that he takes daily. Previously these have all been supplied.

Luke has had a good week as his blood levels have all improved considerable and he has a bit more energy and colour. We are making the most of the time that he is out of neutropenia. He has had friends over and we've been out to dinner and the movies. The boys went and saw Ironman 2 and Amy and I went to see When in Rome.
Although Luke has been well enough to go to school this week, we figure there is not much point as he is a term behind the others. It is best for Luke to stay home and make the most of the times when he is well to catch up on the work he has missed. He has been doing a bit of school work (mainly 3D animation which he enjoys!!) I'm hoping he can get the English essay done by the end of this week and then start of some other assessment items.

Amy has been off school sick for the past few days with a bad headache. It seems to be better now.
I had a good day at work yesterday as I found out I had received the promotion up to the next level in the public service. So all the heartache of getting my application in during early March was worthwhile, even though it was the last thing I wanted to do at the time. I must say a big thank you to Mandy, my manager. Without her guidance and support over the last 3 months and especially encouraging me with my application I wouldn't have gotten this result. While I'm at it, I need to say a big thank you to my L&D team and everyone else at work for their continued support. It really makes it enjoyable to go to work and it takes my mind off things for the few days that I am at work.

I'm sure Murray feels the same gratitude towards everyone at his work.

It was Luke's cousin, Emma's, 13th birthday today. So we went over to her place for a lovely dinner. It is also Luke's oldest cousin, Matthew's, 18th birthday this Friday 28th May. Matthew is the oldest child in the Airey family. I have no idea where the years go. Matthew lives in Umina, Gosford - about 4-5 hours from Canberra, so unfortunately we won't get to catch up with him. He knows we are thinking of him though and wish him a very happy birthday!

I will keep you posted as to what happens with discussions with the doctors about this next round of chemo, and his bone marrow biopsy results next week.

Monday 17th May 2010

2010-05-17T05:37:00.000-07:00

A very quick update to let you know that the bone marrow biopsy that was scheduled for today has been postponed. Luke's blood levels have not recovered quickly enough to warrant the biopsy today so they are allowing a bit more time. Luke is still neutropenic. I worked out the other day that Luke has been neutropenic for 75 days out of 108 days since he was diagnosed. Breaking that down even further: that's 30 days confined to the hospital upon diagnosis with 19 of those days in neutropenia, followed by 78 days at home with 44 days of hospital visits for various treatments; 56 of those days were in neutropenia! (Neutropenia means he is prone to pick up infections easily and not allowed in public places and needs to watch what he eats - for example: no salads or fresh vegetables - they need to be cooked thoroughly)

The biopsy will now be held on Monday 24th May. We should have the results about 3 days later.
His next round of chemo will probably start on Monday 31st May. This will be a 7 week Interim Maintenance chemo.

Although Luke's bloods haven't recovered totally he certainly has got some colour back and feeling a lot better. He must be feeling better because he's annoying his sister again!!!
It's nice for him to have a bit of a longer break as it will give him chance to do a bit of school work and catch up with friends.
I'll update you all again next week after the bone marrow biopsy.

Friday 7th May 2010

2010-05-07T01:30:00.000-07:00

Yay!!!!! Luke finished this round of chemo on Wednesday.
During the week he had to have another blood transfusion and an anti-thrombin injection to stop clotting. His blood levels still aren't recovering yet by themselves and he is still neutropenic. It's now been 25 days that he has been prone to infection and when it's best for him to avoid public places.

So now we just need to wait for his blood levels to recover from the chemo. They should start going up soon. The nurse will continue to come daily and take blood samples. He is booked in for a bone marrow biopsy on Monday 17th May and we should get results by the end of that week as to if he has remained in remission. That's the plan. He should then start chemo about 7 - 10 days after the bone marrow biopsy. So all up we are hoping for a nice 2-3 week break from chemo.

Murray and I went to Luke's college today to discuss what is happening with Luke's schooling. He finds it hard to concentrate for long periods and feels really weak. He told me the other day, even though he looks okayish on the outside he feels like an 80 year old on the inside. (I'm sure he doesn't mean any disrespect to anyone near that age but I think it's a good illustration of how he feels).
He has been dabbling in bits and pieces and is ready to do some assessment items. He still hasn't looked at Maths though (don't blame him) so we are planning on getting a tutor to assist him with that. At this stage as all of his subjects are semester subjects he will need to complete at least half the assessment items to get a pro-rata mark. The college has been great and very supportive so we are hopeful that Luke will be able to get through Year 12 okay.

So as there will be nothing to report possibly for a few weeks - I think I'll also have a break from blogging. I'll let you know the outcome of the bone marrow biopsy when we find out.
Happy Mother's Day for Sunday to all the Mum's out there.

Friday 30th April 2010

2010-04-30T02:52:00.000-07:00

Well where did April go to?
I can't believe it's been 3 months since Luke was first diagnosed with leukaemia and we are so proud about how Luke has handled the situation. Most of us can only imagine what he must be feeling and going through. From the outside he may look fine and healthy, but inside his body is be screaming out a whole different story.

Luke's blood levels have been all over the shop at the moment due to the chemo. He has had 2 more blood transfusions since last Wednesday. 2 units last Thursday and 2 more on Sunday. What a little vampire! Unfortunately this means about 6 hours sat at the hospital.Last Saturday and this Thursday he needed some platelets to stop him bruising.
Today was a bit of a disjointed day. We went in to get his chemo via the central line - this only takes about 15 minutes to run through. We left the hospital with me saying that was one of the shortest visits I've had with Luke in a long time. We came home and I ducked out to the shops to get some much needed food in the house. I'd just entered the first aisle and got a call from Luke saying the hospital had just called and said we needed to go back in to get an anti thrombin III injection. This injection is to stop blood clots going to the brain. So we ended up back in the hospital for about an hour.

Lukes blood levels over the week have been:
Haemaglobin: 22Apr-69 /23Apr-81 /24Apr-76 /25Apr-76 /26Apr-99 /27Apr-94 /28Apr-87 /29Apr-89 /30Apr-84
White Cell Count: 22Apr-0.6 /23Apr-0.7 /24Apr-0.7 /25Apr-0.8 /26Apr-0.9 /27Apr-1.1 /28Apr-1.4 /29Apr-1.0 /30Apr-1.2
Platelets: 22Apr-28 /23Apr-10 /24Apr-8 /25Apr-23 /26Apr-18 /27Apr-17 /28Apr-12 /29Apr-16 /30Apr-49
Neutrophils: 22Apr-0.24 /23Apr-0.23 /24Apr-0.16 /25Apr-0.21 /26Apr-0.56 /27Apr-0.37 /28Apr-0.46 /29Apr-0.45 /30Apr-0.45

Luke has really had a long period of being neutropenic this cycle - we are now up to day 18 where he needs to avoid public places to avoid infection.
However we are on the home stretch for this cycle. He only has 2 more "bee stings" on Sunday and Wednesday. He will then be left alone till the 17th May to let his blood recover. Then he will have his bone marrow biopsy to see if he is still in remission. I'm not sure how long after the biopsy he will have before he starts the next cycle - Interim maintenance that will go for 7 weeks.
So we are really hopeful that he will have a good 2-3 weeks break from any chemo.

I mentioned on the last blog that my Aunt and Uncle who were stranded in Singapore might have to return to Australia due to the volcano. They did come back last Thursday 22nd April. When they arrived it still appeared that the earliest that they would be able to get back to the UK was the 7th May. So I contacted a friend at Qantas (I used to work for Qantas) and they were able to assist them in getting a flight back home yesterday - 29th April. It was marvellous to see them again and I know Mum & Dad really enjoyed having them stay again - especially because Mal and Les went to work and painted a fence and gardened for them! Talk about slave labour!! Mal and Les assured us they enjoyed doing it!

Talk to you all next week....

Wednesday 21 April 2010

2010-04-20T19:01:00.000-07:00

Not much to report. Luke is doing okay but has been neutropenic all week and pretty weak. He had 2 units of blood on Sunday and this meant 6 hours in hospital while they cross checked his blood and the transfusions went through. So when this happens it's pretty boring for him and me. I actually got to read the Sunday paper from cover to cover though which I haven't done in a long time!

Murray and Amy went for their flu injections on Friday (I had mine with work a few weeks ago). But we are finding that we are all having symptoms of a flu - bit blocked up/sore throat but nothing really developing into anything serious. For the last few days Luke has been saying he has a sore throat. Not a great deal we can do to protect him from infections while he is neutropenic - other than pack us all up to live somewhere else and leave him by himself! As someone once told us we can't wrap him in cotton wool all the time and as he is used to 'our' germs, home is the best and safest place for him.

Blood levels for the week are:
Haemaglobin - 14 Apr - 93/15 Apr - 83/17 Apr - 71 /18 Apr - 69/19 Apr - 83
White Blood Cells - 14 Apr - 1.2/15 Apr - 0.6/17 Apr - 0.5/18 Apr - 0.6/19 Apr - 0.6
Platelets - 14 Apr - 166/15 Apr - 133/17 Apr - 90/18 Apr - 90/19 Apr - 69
Neutrophils - 14 Apr - 0.68 / 15 Apr - 0/17 Apr - 0/18 Apr - 0/19 Apr - 0.11

You will notice the 16th and 20th April have no levels. On the 16th he was due to have the nurse come home to take bloods but she was off sick and no-one called to tell us she wouldn't be coming. Yesterday (20th) he went into hospital but they couldn't get blood out of his central line - they didn't seem too concerned and said they'd get it today. We are just waiting on the nurse to come out now.
I'd assume that he may need to have more transfusion of blood and possibly platelets in the next few days.

Mum & Dad got a call last night from her sister who had been over in Australia on holiday. They were on their way back to the UK but got stranded in Singapore due to the volcano. It seems that their only option is to come back to Australia as the first flight they can get on back to the UK is the 6 or 7th May. Whilst it would be good to see Mal and Les again and spend more time with them I hope they manage to get on an earlier flight as it really is a long delay and Les was due back at work last week.

Tuesday 13th April 2010

2010-04-13T03:21:00.000-07:00

I thought I had better give everyone an update on Luke.
We thought he would have been out of hospital on Saturday but unfortunately for some unknown reason they wanted him to stay till Sunday. So he is now back home and very glad to be back in his own bed!

It was Amy's birthday on Sunday and we had a family get together on Saturday for her. That way Amy and I could have a girly shopping day on the Sunday with all of her birthday money. Luke was able to get a leave pass from the hospital for a few hours on the Saturday afternoon.

Luke's not feeling too bad but his energy levels are still really low and his nausea and stomach cramps are coming in waves. They did increase all of his blood levels with various injections and since coming home he has changed to oral antibiotics for the infection. He doesn't appear to have any signs of the infection any longer but has been told to continue the full course of tablets. He has had some friends over the last few days so that has picked him up a bit.

Chemo recommenced on Friday so he only had a 2 day delay in treatment.
However after them building the blood levels up they have certainly dived again with the chemo.

Blood levels over the last few days are:
Haemaglobin - 9 Apr - 95 / 10 Apr - 102 / 11 Apr - 111 / 12 Apr - 104
White Cell count - 9 Apr - 14.5 / 10 Apr - 16.9 / 11 Apr - 7.5 / 12 Apr - 2.6
Platelets - 9 Apr - 237 / 10 Apr - 239 / 11 Apr - 249 / 12 Apr - 221
Neutrophils - 9 Apr - 6.53 / 10 Apr - 13.15 / 11 Apr - 6.95 / 12 Apr - 1.77

Until next time........

Thursday 8th April 2010

2010-04-08T03:27:00.000-07:00

We all had a fabulous Easter and did manage to have a few lazy days with some sleep ins and no hospital visits. Murray went to golf on Good Friday, then we all went over to Murray's sisters place for a family get together for lunch. I went to a wedding on Saturday for one of my work colleagues, Bridget, she looked gorgeous and it was lovely to have a night out.
However Luke hit a speed bump on Monday and ended up going into hospital. His temperature over Saturday and Sunday was in the high 37's and we knew that if he got to 38 degrees for more than half and hour he'd need to go into hospital. He was also really nauseous and not eating a great deal. I was catching up with some old friends from Qantas at lunchtime on Monday when Amy called around 3.30pm and said they were on their way to hospital. They put him on antibiotics straight away.

Getting an infection was always a possibility and according the the nurses they were surprised they hadn't seen us earlier. We thought he'd be in overnight but as it turns out he's still there now. He had a chest x-ray that showed a bit of shadowing in one of his lungs. Dr Dipti couldn't hear anything in his lungs so it sounds as if something was brewing and they caught it in time. He has antibiotics every 4 hours over 4 - 5 days. He was also given 2 x blood transfusions and a multitude of other injections to get his blood levels up. So the poor thing was attacked with all sorts on Tuesday/Wednesday and not sleeping very well with all the interruptions through the night. We have been leaving him at about 10.30pm as he seems to cope okay by himself overnight and as he says there is no point two of us not getting sleep.

The doctor saw him Wednesday morning and said that chemo would be put on hold till they controlled his infection and got the neutrophils up. It sounds as if they will start chemo tomorrow as his blood levels have picked up dramatically today and he is feeling and looking much better. So he will be in hospital till at least Saturday. At least his nausea has settled and he was eating a bit more normally today.

For anyone who would like to know here are his blood levels for the past days.

Haemaglobin - 3 Apr - 77 / 4 Apr - 77 / 5 Apr - 78 / 6 Apr - 72 / 7 Apr - 92 / 8 Apr - 90
White Cell Count - 3rd - 0.6 / 4th - 0.9 / 5th - 1.0 / 6th - 1.1 / 7th - 2.0 / 8th - 5.0
Platelets - 3rd - 145 / 4th - 178 / 5th - 226 / 6th - 216 / 7th - 251 / 8th - 259
Neutrophils - 3rd - 0.02 / 4th - 0.02 / 5th - 0.03 / 6th - 0.07 / 7th - 0.42 / 8th - 2.07

So as I said he is much better today and we hope to get him home on the weekend in time for Amy's birthday on Sunday.

Friday 2nd April 2010

2010-04-01T19:08:00.000-07:00

Luke's had a bit of a flat week. His back from a combination of the lumbar puncture and the injections into his backside has been really sore and stiff. He can't seem to find a comfortable position. On Monday Luke saw Dr Dipti and discussed his back and how he is walking/shuffling like an old man. She sent him for an ultrasound to see how the haematoma was going. It came back okay. Unfortunately this is just one of the side effects of the treatments.

As I predicted last week - last Saturday Luke became neutropenic. He has hit his lowest levels these last few days and really is feeling pretty lousy and quite nauseous. He is spending most of his time in bed watching TV and dozing on and off.

His blood levels for the week are:
Haemaglobin: 27/3 - 99 /28/3 - 96 /29/3 - 101 /30/3 - 93 /31/3 - 84 /1/4 - 85
White Cells: 27/3 - 1.2 /28/3 - 1.2 /29/3 - 1.2 /30/3 - 0.9 /31/3 - 0.7 /1/4 - 0.6
Platelets: 27/3 - 26 /28/3 - 20 /29/3 - 24 /30/3 - 26 /31/3 - 43 / 1/4 - 94
Neutrophils: 27/3 - 0.4 /28/3 - 0.26 /29/3 - 0.26 /30/3 - 0.1 /31/3 - 0.04 /1/4 - 0.02

AS a reminder for normal levels:
Haemaglobin - 130-170
White Cell Count - 3.7 - 11
Platelets - 150-400
Neutrophils - 2 - 7.5

So as you will see Luke's levels are really low. His Haemaglobin has dropped again the last few days after transfusions - so we are on standby that if they get under 80 we will need to go into hospital for some more transfusions.
Luke had platelets given to him on the 31/3 before his last lumbar puncture for this round. Yeah!! This lumbar puncture ran a lot more smoothly than the last one as they went higher up in the spine.
As you will also see Luke's neutrophils are almost non existent. So he is very prone to picking up any infection.
All of these blood levels combined are what is making Luke so lethargic and really not too good this week.

Yesterday we had to go to the hospital for a special blood test for the protein levels. We came back home but got called in that afternoon for an injection. His Antithrmbin III was 64% - it should be 70-145. If left untreated there is a chance of blood clots going to the brain.

Today we went in for his last asparaginase injection into his backside (for a few weeks anyway). So Luke is pleased there are no more lumbar punctures and "bee stings" for a while - and his back may recover soon.

As I mentioned in the last blog - we had my Aunty Mal and Uncle Les come to visit from the UK. They have had a busy few days with Mum & Dad going around sightseeing in Canberra. I would like to have joined them during the day but with Luke we were unable to. They came over Tuesday night and had dinner at our place and then Murray and I went out for dinner with the four of them on Wednesday while Luke's Nan watched over the kids. Mum & Dad are now driving Mal & Les to the Blue Mountains overnight, followed by visiting Kevin in Newcastle and then going to my brother, Stephen's place in Gosford. Mal and Les will then travel by train to Sydney where they will have 4 days sightseeing and then up to Port Douglas for the last part of their journey. Hopefully the weather stays good for them.

We have 4 days of no hospital visits!!! All being well. As I said earlier we may be called in for blood transfusions but we will keep our fingers crossed that we can have a few lazy pyjama days!! The nurse will be coming to take daily blood at our house.

Hope everyone has a nice break over Easter and that you don't eat too much chocolate!! I'll be in touch next Friday.

Friday 26th March 2010

2010-03-26T02:20:00.000-07:00

We have had a busy week. Last Friday 19th, Luke had a lumbar puncture under x-ray. It seemed to go quite well. Although Luke still has had a fair bit of pain in his back throughout the week.
He had another lumbar puncture today which didn't go as well. Even though it was under x-ray they still had trouble finding a spot as he has scar tissue and a hematoma in his back which they aren't concerned about. They ended up going into his spinal fluid a bit higher up and it worked okay. He's really stiff again and we are calling him "Mr Shuffles".

They urakinased Luke's central line and it appears to have worked and blood is now coming through the line so that is great news as we keep hearing of so many people getting infections and having to have them taken out.

Luke's been feeling really lethargic this week and I can understand why when we went into hospital on Wednesday. His haemaglobin had dropped to 66. So they arranged to give him 2x blood transfusions and platelets. So what was meant to be a half hour in hospital for an injection at 12.30pm turned out to be 9 hours while we waited for the initial blood test and transfusions. Murray ended up coming and relieving me at 5.30pm as I had a throbbing headache. So the boys walked in at 10pm last night. We were glad that he had the transfusions though as we had to go up to Sydney the next day.

As it turned out today we went in for his lumbar puncture and they took bloods in the morning before the procedure. When we came back they said his levels were still low (77) so once again we had 2 x blood transfusions and platelets. Another long day at the hospital and we emerged 8 hours later.

His blood levels for the past week have been:

Haemaglobin: 20/3 - 95 / 22/3 - 82 / 24/3 - 66 / 26/3 - 77
White Blood Cells: 20/3 - 4.3 / 22/3 - 4.8 / 24/3 - 2.1 / 26/3 - 1.2
Platelets: 20/3 - 118 / 22/3 - 74 / 24/3 - 31 / 26/3 - 22
Neutrophils: 20/3 - 3.4 / 22/3 - 4.35 / 24/3 - 1.35 / 26/3 - 0.53

The latest blood results today also show neutrophils of 0.53 - this means Luke is just about to tip into neutropenia. So he will be prone to picking up infections very easily. So the best advise is that if you are feeling unwell please do not come and visit Luke at the moment.

So now to update you on the visit to Westmead's Cancer Care Clinic to see the Stem Cell Transplant Specialists. What a long day! We left around 9am and got to Westmead at 1pm. We decided rather than have lunch beforehand (we'd had a snack around 11am) that we would should make sure we got parking and knew where to go for our appointment at 1.30pm. We got in their early and filled out all the paperwork. It got to 1.45pm and I asked if they had any idea how far behind the doctors were running and the ladies at reception said they were still making up the file and that the doctor was aware we were there. At about 1.55pm we got sent to Clinic 3 only to find another waiting room! I think it was about 2.30pm that we got into see the specialist. We left Westmead at 3.30pm (after lunch) and got home around 8pm.

So to the outcome of the meeting: After reading some paperwork and asking some questions he then had a general chat to us. It would appear that Luke is not a suitable candidate for a stem cell transplant at this stage. The reason being that he is responding well to chemotherapy and is in remission. As you know Luke needs to stay on chemotherapy for quite a long time to keep him in remission so a transplant would only become a viable option if he relapsed and the disease returned or if the abnormal chromosones returned and were not responding to chemotherapy. However the Professor did make the comment that one reason that makes it difficult for them to determine whether he is suitable for a transplant is because he had an uncommon grouping of abnormal chromosones - meaning they don't have any historical data against which to gauge their decision.

He did say that he would talk to the other professors at their team meeting on Monday to concur with them and that "his people would talk to our people" to advise the conclusion. At this stage the initial prognosis is a good thing as the Professor went through quite a lot of the risks and complications around a stem cell transplant and it's not something that you would want to rush into.
The other thing he said was that when Luke finishes this consolidation chemo round that he would ask Canberra for a bone marrow biopsy sample to be sent to Sydney to run a sensitive test (that can't be done in Canberra) to test for minimal residual disease. This test will show if there are any minor traces of leukaemia still in the bone marrow. If there are any minor traces or he relapses then they will reassess as to whether a stem cell transplant would be needed. So we really are back to a bit of a waiting game to make sure Luke stays in remission after this round of chemo and to see if any traces show on the test they will run in Sydney. This won't be until around early to mid May when this round of chemo finishes.

I'll update you all in a week unless there is something else to tell in the meantime.
We have Mum's sister, Mal, and her husband Les, coming to visit Australia from the UK next Tuesday. I haven't seen Mal since Murray and I went to England in 1991 and the kids have never met them so that will be great to catch up with them next week.

Thursday 18th March 2010

2010-03-17T22:47:00.001-07:00

I know it's been a while since the last blog however as Luke has achieved remission and now started the 2nd round of chemo there is not a lot of new information I can tell everyone daily so I've decided I'll put an update in the blog weekly.

We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).

Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.

They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1

His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.

Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.

Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).

He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.

Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.

Friday 12th March 2010

2010-03-12T04:06:00.000-08:00

Luke started his day with a visit to the hospital for a chemo injection. This injection is subcutaneously under the skin - so they do it in his tummy. It doesn't take long and he said it doesn't really hurt. They have started taking bloods daily again. Luke is fantastic at the moment - it is really a shame that he is going to get chemo which is going to drag him back down again. I imagine based on Luke's blood levels on the first round of chemo, Luke will have a few weeks before he dips back down into neutropenia.

At the moment his levels are:
Haemaglobin 105 / White Cell Count 16.4 / Platelets 147 / Neutrophils 13.98.

After hospital we decided to go via Luke's college to get his timetable. While he is good we thought he could try and attend a few classes next week to see what they are up to. It was good to see him talking to all of his friends during their recess break.

He asked if he could go for a driving lesson in his car today. For those who don't know, just before Xmas Luke bought a Nissan 300zx(or rather part bought - we always had the intention of going halves with him and although he's put some money towards it, plans have changed a bit now and I think we'll be waiting a long time for the rest!) It really wasn't my first choice of a car for a learner however it is a great looking car for a 20 year old car - it's a bright red sports car and it just happened to be an exceptional buy and too good an opportunity to pass by.
He was a bit rusty from not having driven for quite a while but he enjoyed himself.

We went this afternoon to view the "Lanyon Loonies" at the pharmacy participating in the Greatest shave for the Leukaemia Foundation. Well done to Allison, Jayne, Suzi and Scott for their bravery. They looked fantastic!

We decided as Luke was in remission to get some of his friends over and let him have a bit of fun. So tonight, 8 of his good friends came over for pizza, x-box and playing a board game - risk - that they all seem to like. Amy's having a sleep over at her cousins, Murray went to watch the football at his Dad's and I've been in the bedroom watching a movie! It's good to see him laughing and having fun.
Three of his friends turned up with their heads shaved. They took part in the Shave at Tuggeranong College. They all look great - bit different to the long hair I'm used to seeing on them.

Some of Luke's other friends - who are part of "Keeping the Faith" team are having their shave on Sunday. Whilst Sue Baker and Tim - actually fall under the "Finance Social Club Team" are participating in the shave next Friday the 19th.

Tomorrow we are back to the hospital for an injection and we might head to the movies. We're going to make the most of Luke's good health while we can.

Wednesday 10th March 2010

2010-03-09T21:57:00.000-08:00

Yeah!!!! Good news. Luke is in remission.
The interim report we were given a copy of today says: "Normocellular bone marrow. Features are consistent with remission of the known Acute Lymphoblastic Leukaemia and with an excellent response to recent treatment. Note normal karyotype. No cytogenetic abnormality detected."

Luke also had a follow up CT scan last week. The results of this showed that his lymph nodes have improved significantly. The lymph node under the armpit has decreased from 18mm to 7mm. His hepatosplenomegaly (which is enlargement of the liver and spleen) has also significantly improved. The liver now measures 17cm and the spleen 12cm reduced from 21 and 20cm respectively. Also something that I didn't know until his discharge papers turned up at home yesterday, was that his kidneys had lesions/multiple large soft tissue deposits on both kidneys. However on the latest test these had significantly reduced in number and size.

So good news all round at this stage. Whilst this is the best outcome possible at this point there is still a long way to go. The problem now will be keeping him in remission. We are now back in hospital today to start the 2nd round of chemo treatment - consolidation - which will be a 9 week program. We have not been able to see the specialist today and my main concern was whether we should be starting chemo now or waiting till after our appointment in Sydney on the 25th March with the stem cell transplant specialist. Unfortunately I didn't get this question totally confirmed but both the resident and intern agreed that Dipti was going to contact Sydney and that she confirmed yesterday afternoon that she wanted chemo to commence today.
So here we are - back in our old room 7 for old times sakes. We are not sure whether Luke will only need to stay overnight or for 2 nights depending on how long things take. One of the drugs he is on today is quite strong and he needs to have 3 bags of saline to flush through his system (these take about 8 hours each to run through).

For anyone interested the consolidation phase of chemo will include the following drugs: cyclophosphamide, cytarabine, mercaptopurine, methotrexate, L-asparaginase and vincristine.
This will mean between 4-5 visits to the hospital per week to receive the chemo.

Luke's had a few good days at home and has had a bit more energy. It was my birthday yesterday and the four of us went out to dinner. Murray and I discovered a Malaysian restaurant at the Garran shops that was really yummy - so we went there. Had a really nice meal.
The day before we'd had all the family over for lunch. Luke and I had a cook up in the kitchen and we all had a good day.

Friday 5th March 2010

2010-03-04T20:19:00.000-08:00

Just a quick update of where we are up to.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.

He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.

Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.

I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.

So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!

We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!

Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.

Wednesday 3rd March 2010

2010-03-02T15:49:00.000-08:00

This blog entry is to publicise the fundraising event that is taking place for The Leukamia foundation during the period 11-13 March. The Leukaemia foundation is the only only national not-for-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. In the short time we have been involved with leukaemia, the foundation has certainly been of assistance to us by way of educating us in the disease and providing lots of information via booklets.

A lot of people have been asking how they can support Luke. I know I've suggested donating blood in the past. It is amazing how many blood products Luke has already needed to get through the first 5 weeks and I'm sure he'll need many more.
However another way to show your support would be to donate to the Leukaemia Foundation's Worlds Greatest Shave fundraising event. Money raised helps support families - especially those in country areas who do not have immediate access to hospitals that treat cancer. We are lucky we are in Canberra however in our case if we do have to go to Westmead hospital for an extended stay, the Leukaemia Foundation provides the accommodation.
They also fund leading research into better treatments and cures for leukaemias.

I know of a few teams that are going to take part in the World's Greatest Shave and I'd like to share their details with you in case you would like to direct a donation to them via the website.

1) Lanyon Loonies - this team is made up of staff members from Lanyon Pharmacy where Luke worked after school and on weekends. The brave team who are going to shave consist of Allison Browne, Jayne Gibson, Alex Smith, Suzi Hughes and Scott Mulholland.
2) Keep the Faith - this team consists of friends of Luke's - the team includes Daniel Sims, Tim Sandeman and Ned Lawson.
3) Canberra Grammar School - Jack Lattimore a friend of Luke's attends this school and the school will be participating in Shave for a cure.
4) Lake Tuggeranong College - where Luke attends. I cannot see them listed on the website as a team however I do know from one of the teachers that a fundraising event will be taking place. So if you go to the college you may want to show your support on the day.
5) Individuals - Tim Baker & his mum, Sue Baker are intending on colouring for a cure. Tim and Luke spent many years together playing cricket for the Junior Tuggeranong Vikings Cricket Club. Again I can't see them listed on the website but if you'd like to support them, I'm sure for all those TVCC people out there, you could contact either Des Baker or Billy Thomson.

I have included the link on the blog to the website. worldsgreatestshave.com
Once on the main page go down to the bottom to a heading sponsor a shaver.
Then search for the team or individuals name. Follow the prompts for your donation - you can remain anonymous if you prefer by ticking the applicable boxes.
All donations are tax deductible.

I really respect everyone taking part in this fundraising. They are braver than me! Luke really appreciates all of the support people have shown in taking part in this event. For your information, Luke's hair is slowly falling out - he has had it shaved shorter all over so that the bits of hair coming out aren't as noticeable. So he totally understands what it means to lose your hair and how brave you are all being. A big thank you to all of you.

Tuesday 2nd March 2010

2010-03-02T00:55:00.000-08:00

Okay so I've missed a few nights! Sorry about that. I've been busy doing an application for a round of positions at work - not something I really wanted to do given our situation but thought I shouldn't let the opportunity pass me by.
I've also been playing apprentice to the "masterchef". He cooked a lovely stuffed chicken breast wrapped in prosciutto and roast veges. The stuffing was a Philadelphia cream cheese/basil/pine nut/Parmesan cheese. Very yummy!
His Nan, Aunty Nat and Aunty Heidi bought a white chefs shirt (don't know the official term) for the budding chef!!

Murray and I have been playing decorators and cleaners today! Luke's new mattress arrived and we needed to clear out his old bed and also took the opportunity to clean out all of his drawers /storage boxes and wardrobe. What a lot of rubbish! I thought I was a hoarder - but I've got nothing on him! His new bed looks great - a white fake look leather bedhead and base. With all the new linen it really brightens up his room.

Luke had the nurse coming each day to take blood and they still have been having trouble getting it out of the central line straight away. It seems to be taking quite a few saline flushes. Luke went into hospital yesterday to have his last day of chemo treatment for the induction phase. It was a lumbar puncture to check the spinal fluid and then chemo injected into the spinal fluid. It was great to have the first round of treatment finished. Yeah!!

Luke's blood results for the last few days are:
27/2 Haemaglobin 107 / White Cell Count 3.1 / Platelets 220 / Neutrophils 2.58
28/2 Haemaglobin 100 / White Cell Count 2.5 / Platelets 213 / Neutrophils 1.5
1/3 Haemaglobin 97 / White Cell Count 4.2 / Platelets 237 / Neutrophils 3.20

As he has finished chemo the nurse was going to drop back to getting bloods every 2 days - hence no blood results today.

Originally we were told that Luke's bone marrow biopsy was going to be on the 11th March with probably about 3 weeks break from chemo. We then found out the biopsy would be this Thursday instead. Only to have a call from one of the doctors today to say that they wanted to do the biopsy tomorrow instead followed by a CAT scan on Thursday. The results of the biopsy will probably take about 3 - 4 days so we won't know until then if he has achieved remission. So it will be a long weekend waiting anxiously!! They then want to start the next round of chemo next Wednesday, which is a 9 week consolidation chemo phase. So unfortunately for Luke there won't be much of a break. At this stage we are still scheduled to go to Sydney on the 25th March but we are concerned that he will be about 14 days into his chemo and probably quite neutropenic. So they are looking into that a bit further at the moment.

As we came back out of hospital last week Murray and I needed to sit down and work out what we were going to do about work. We can't believe that we lost February and it's been 5 weeks since we found out Luke has leukaemia.
Obviously Murray and I would like to share the care of Luke through the week so I ended up dropping my part time hours back to 2 days per week (Mon/Tue) and Murray will work the other 3 days(Wed - Fri). So Murray starts back at work tomorrow morning and I'll be starting next week. Obviously this will need to remain flexible depending on what's around the corner. We know it's going to be a long road and we are lucky that both our workplaces have been so flexible for us.

Friday 26th February 2010

2010-02-26T02:18:00.000-08:00

We've had a good few days at home. Luke is enjoying the freedom of the house. The nurse is coming each day generally around 11am. They do his obs and take blood and phone through his blood results around 4.30pm. Today we had a slight hiccup as Tony couldn't get blood to flow through the central line. He flushed it a few times and said that cells can sometimes congregate internally around the central line and block the line. He had him standing up with his arm out and finally blood started to flow.
When Tony called through the results he said that Luke's fibrogen levels were getting on the low side and that if the level dropped to 1.0 next time round we would need to go into hospital to get the 10 bags of cryoprecipitate.

Luke's results over the last few days are:
25/2 Haemaglobin 116 / White Cell Count 2.1 / Platelets 256 / Neutrophils 1.2
26/2 Haemaglobin 110 / White Cell Count 2.2 / Platelets 243 / Neutrophils 1.8

Someone asked me again the other day what a normal males levels should be so just as a recap:

Haemaglobin 130 -170 / White Cell Count 3.7 - 11 / Platelets 150 - 400 and Neutrophils 2 - 7.5.

As you will see his levels are much higher than they were originally especially the platelets which got as low as 12 and neutrophils which got as low as 0.05. As he has just about finished this chemo round you would expect his blood levels to pick up again.

We ended up taking Luke out quickly this afternoon to buy a bed for him. We had an idea which bed frame we were getting but needed him to try out the mattresses. Sure enough the one's Murray and I had tested were too hard for him. So he's ended up with some whiz bang 7 zone plush mattress! I am really amazed at how easily he is bruising by just lying in bed at night or crossing his ankles while on the recliner.

Well all of Luke's watching cooking shows in hospital (and prior to that really) has finally paid off. Luke made a nice banana cake last night and this evening he made us a really nice pasta dish with chicken, bacon, broccoli, zucchini, herbs in a creamy sauce. I'm impressed! Mind you I'm being the master chef's apprentice doing all the cutting and preparation. Luke's excuse is that he shouldn't cut himself due to his bloods reduced ability to clot. But hey, I won't knock it if he wants to keep on cooking!!!

Luke's hair has been steadily falling out over the past week. His hair was so thick before and it really had thinned out considerably. The fringe that he used to spike up, he recently started patting down to try and hide the thinning. It didn't help that he was due for a haircut anyway so the bits that were falling out were quite long and noticeable. So tonight his Aunty Natty came around and gave him a Number 3 shave all over. It looks pretty good but quite thin. There are no major patches at present as it seems to be an all over thinning.

We have been hearing of quite a lot of people who are going to participate in the Leukaemia Foundations Shave for a cure. It really is a fabulous organisation and the support they give to patients and their carers is amazing. The foundation also funds leading research into better treatments and cures for leukaemias, lymphomas, myeloma and related blood disorders. In one of the next few blogs I will do a bit of advertising for their cause and give you the names of people/teams who are taking part and advise how you might be able to sponsor them. If you are taking part and you don't think I know about it yet please let me know via email so that I can include your details.

Wednesday 24th February 2010

2010-02-23T23:59:00.000-08:00

We are all very excited - especially Luke - he is home!!
It will be so nice for him to wander around the house and do things by himself.
Driving home he commented how bright it was - he really hasn't been in sunlight for over four weeks (other than two visits to the courtyard). It's also nice to get fresh air!

Luke is in a good place at the moment - he looks quite well even though he has lost heaps of weight and is quite pale and certainly bruises easily. He slept on his side last night and has two bruised knees where they obviously rubbed.

His next chemo treatment is on Monday for a lumbar puncture. Luke has been released home as an In-patient service of the hospital operated by the Oncology Outreach Service (OOS).Part of being allowed home is that he requires 24 hour care from us and an oncology registered nurse will be coming for a home visit daily at this stage. We need to take Luke to the hospital for scheduled treatments such as the lumbar puncture/bone marrow biopsy and any chemo treatments in the future that cannot be administered in the home.

We found out today that Luke will have his bone marrow biopsy on the 11th March.
As I said before, we really won't know how this round of chemo has gone until the results come back from the biopsy.
Luke currently is not neutropenic so we don't have to be strict with his diet although we will continue to be cautious as his levels fluctuate so quickly.

He has said he is happy to have visitors now that we are home however it might be best to give us a quick call at home 62946172 to confirm that he's okay at the time.

I mentioned Luke was craving a Saigon Roll so when we were discharged at 1pm he made us drive to Tuggeranong to get one for him. I must say I was extremely lucky to get one as when I arrived in the queue (2 people in front of me) the lady making the food started waving at me saying they had sold out. As I started to turn in disappointment the lady in the queue in front of me declared that she didn't have enough money on her and that I could have the last roll. I couldn't believe my luck. Luke would have killed me if I turned up to the car without one!!!

For the record his blood levels are:
23/2 Haemaglobin 109 / White Cell Count 2.6 / Platelets 299 / Neutrophils 1.5
24/2 Haemaglobin 106 / White Cell Count 2.1 / Platelets 252 / Neutrophils 1.29

Leaving the hospital today, although exciting, was a bit scary as we have been armed with a bag full of Luke's drugs with a time schedule of when he needs them. I'm also concerned that most days Luke seemed to have some other sort of drug to counteract something that was wrong with his blood levels. I have been assured that when the nurse takes Luke's blood for the day we will receive a phone call that afternoon with his levels and they will tell us if we need to take him in to get any treatments such as cyroprecipitate or protein fixers etc.
I can't believe how much "stuff" we had at hospital that needed coming home. I took about 4 full bags home yesterday and we ended up with just as many today along with pillows and balloons!
I'm looking forward to our first night at home together again.

Monday 22nd February 2010

2010-02-22T00:13:00.000-08:00

Well after the doom and gloom news we had on Saturday we had some good news today. Luke will be able to come home on Wednesday. Yeah!!!! He has his last chemo via his central line tomorrow. He then has to go back in next Monday to have the last treatment on this induction chemo phase. That will be a lumbar puncture and chemo injected into the spinal fluid. He did wonder what he was going to do in hospital for the days in between treatments. So he was really excited that he will be able to come home.

As I mentioned before, after the last treatment he will then have to wait 1 to 1.5 weeks for his bloods to do their own thing and then go in for a bone marrow biopsy to check if he has achieved remission. So we really won't know much until then.

I've been feeling a bit off since yesterday. A bit of a sore throat that I don't know if it will develop into a cough, or if it is just a mixture of hospital air conditioning, emotional stress or being overtired. What ever it is, Murray and Luke have banned me from the hospital as we can't risk him getting an infection. So I've been in contact constantly through the day on the mobile. It was my night on tonight so Murray will be doing a double shift! In the meantime I'm dosing up on strepsils and drinking lemsips just in case.
Amy didn't go to school today, she is looking a bit run down and we decided last night that we were going to take the phones off the hook and have a catch up on sleep this morning. Certainly felt a bit more refreshed.

We are currently at Heidi & Nev's celebrating Mary's 10th birthday. Had a lovely dinner and the cake looks great!

We went out late this afternoon and bought a new laptop. Luke has been madly researching them over the past few days on the old laptop in the hospital.(Certainly kept him entertained and gave him something to do). Luke has decided he would like to try and keep up with some school work online as he's in Year 12. We needed something with a stronger processor to cope with his IT classes, such as CAD and programming, especially if we do end up in Sydney for 3 months.
We have also decided to get a new Queen size bed for Luke. He currently has a king single bed but he is so tall and really needs to have the space to move around in bed. He was also complaining when he was sick at home for the week before we went to hospital that he could feel springs.(I don't know how as his mattress isn't that old). If we do this we should probably do a mini makeover of his room to make things fit, including new paint job as he's getting a bit old for the bright blue he currently has. So we have our work cut out for us in the next few weeks if that goes ahead.

Luke's blood levels over the past few days are:
21/2 Haemaglobin 105 / White Cell Count 1.9 / Platelets 219 / Neutrophils 0.62
22/2 Haemaglobin 101 / White Cell Count 2.3 / Platelets 258 / Neutrophils 1.06

Luke's platelets have gone through the roof - the nurse joked they might need to take some back soon! This is the first time in a few weeks that Luke hasn't been Neutropenic. Officially this is when neutrophils are .50 and under but in his case they've said under 1.0. He's really hoping this stays that way as he is craving a saigon roll from the Asian Hub!! His friends will know what that is.
I'd imagine with his last dose of chemo this will drop though and he will have to watch what he is eating.

Saturday 20th February 2010

2010-02-19T23:54:00.000-08:00

Well we had our talk with the Doctor and although I'm glad we got some answers I don't think I was really ready for the responses.
We knew the diagnosis was Acute Lymphoblastic Leukaemia. We asked why Luke was on a high risk protocol and basically he is a high risk case. The reason he is high risk is a combination of his age, gender and most importantly in his case he has abnormal chromosones. (Murray is blaming mutant Airey cells - I think it's all the Elton's fault!!) In all seriousness though we were not aware he had abnormal chromosones and this makes his subtype of leukaemia rarer and puts him at a higher risk. On further reading just now it says that chromosomal changes are only found in leukaemic cells. They are not usually passed down from parent to child (inherited). Instead they tend to be acquired over time. (Don't ask me how that happens - it's times like this I wished I'd paid more attention in biology).

Luke is on a very intensive chemotherapy protocol for about 9 months and then he will go into a maintenance chemo (not as intensive) that could last anywhere from 2 to 3 years. That also was something we weren't aware of.
Luke's currently on a 4 week induction chemotherapy. This will take us to 1 March. The aim is to get Luke into remission. The doctor is very positive based on his blood results so far that this will be achieved. The problem however is keeping him in remission. The abnormal chromosomes will make this harder to achieve.
We will be going home and have 1 to 1.5 weeks before he comes back in for a bone marrow biopsy. This will be the most accurate way of knowing if he has reached remission.

We are going to Westmead Hospital on 25th March to meet the specialists at the Bone Marrow Transplant Service. They will advise whether a stem cell transplant is a viable option for Luke. We are lead to believe it would be a good option as his cells will be wiped out prior to the procedure and new stem cells transplanted. This should get rid of the abnormal chromosones. This will all depend on the results of the bone marrow biopsy, if Amy is a match and when he can fit this in around his chemo schedule. If Amy isn't a match they will need to search for a donor which will take time. There are however risks associated with a transplant but this will all get answered when we see the specialist. What did hit us hard though is that if he does have the stem cell transplant it will mean up to 3 months at Westmead!! (For those people overseas Westmead is a suburb of Sydney - over 3.5 hours away from our house). The Leukaemia Foundation have told us they have 2 bedroom apartments they provide for families that need to stay for extended stays. If this does eventuate it will mean a lot of travelling as Murray and I share looking after Luke and trying to keep Amy in as normal a situation as possible.

So we are a bit shell shocked again today but we just have to take it day by day and stay positive.

Luke has had a better day today - not as lightheaded. His blood pressure has been around 120/40. His blood sugar is also okay. He has had 10 bags of cryoprecipitate for clotting and is currently getting 2 units of blood as his levels have dropped again and looking very pale.
Blood levels today are:
Haemaglobin 80 / White Cell Count 0.9 / Platelets 164 / Neutrophils 0.24.

Friday 19th February 2010

2010-02-19T01:10:00.000-08:00

I've had a few people asking what happened to Thursday's blog? Well there were 2 reasons for not posting an entry. The first was that we needed to recharge the wireless modem on the laptop in the hospital and Murray needed to sort something out with it so he took it home. I therefore didn't have the laptop to do a new posting when I sat down that night. The other reason is that I may need to cut back to every few days depending on what's going on. So don't stress if I skip a day here and there. It just means nothing has really happened so not much to report - that's a good thing!

So what's been happening. Yesterday (Thursday 18th) Luke had a good day. He had a day off from any chemo and a few close friends came in to visit.
Today has been a bit of a different story. Luke has been feeling extremely lightheaded. His blood pressure at 10.30 this morning was 120/20 sat down. The nurse came back in after 20 minutes and said the doctor wanted a reading with him standing up it was 70/30 and he felt like he was going to black out. The doctor has put him back on the drip to push some fluids through him. It is now 8.30pm as I type this and he is onto his 2nd bag of fluids. His blood pressure this afternoon sat down was
120/43. They have also put some sexy white stockings (compression socks) on Luke's legs to assist blood flow and stop any clotting.

Generally his blood sugar levels have settled a bit. They are still low in the morning but he is sitting around 8 in the evening.
He had his "bee sting" chemo today and has another day off treatment tomorrow.

Blood levels are:
18/2 Haemaglobin 87 / White Cell Count 0.8 / Platelets 112 / Neutrophils 0.22
19/2 Haemaglobin 88 / White Cell Count 0.9 / Platelets 140 / Neutrophils 0.26

Murray and I are hoping to speak to Luke's doctor tomorrow morning. We have lot's of questions for her. We had hoped to see her this morning but she didn't come in today. Somehow when she came in on Tuesday & Wednesday for her quick 5 minute visit, Murray or I had slipped out to either cook Luke a snack or go for a walk or something. She chatted to Luke on both occasions and said that after this 28 day induction chemo finishing around 1 March we would be going home for 1 - 1.5 weeks to let Luke's cells do their own thing - before Luke would have a bone marrow biopsy. She also said she had referred his case up to Westmead Hospital (originally I thought it was Royal North Shore) and that a stem cell transplant would happen at some stage!
Luke also heard this afternoon from the haematology co-ordinator that he has an appointment at Westmead Hospital on the 25th March. Again Murray was out of the room - we have such good timing!! So we have no idea if this is a hello kind of meeting or if something is happening with the stem cell at this time. Amy's results won't be back till next week sometime.
I know Luke is the patient and the doctor has every right to talk to him however you would think that as he is still under 18 they would wait for a parent to be present before giving him this sort of information.
So we really have no idea what is going on and hope to have some more information to share tomorrow.

Wednesday 17th February 2010

2010-02-17T00:39:00.000-08:00

Luke had a pretty good night however he did get woken up at 3am to get blood taken. They need to test it 12 hours after the protein injection. Don't you think the nurses could have timed it a bit better and given him the injection at say 10am so that he could be re-tested at 10pm???? Just a thought!!!!

Luke's blood sugar is good today 5.8 so it would appear that the reduction in the steroid dose has helped. His weight is staying steady at 79.5kg.

His blood levels today are:
Haemaglobin 87 / White Cell Count 0.8 /Platelets 110 /Neutrophils 0.13.
The other day he was close to needing a blood transfusion so it is great to see his body seems to be increasing the haemaglobin and platelets by itself.

He had his "bee sting" chemo today - he had the choice of having it early or later in the day and decided he prefers it later.
He also had 10 bags of cryoprecipitate for blood clotting.

I made him scrambled eggs for breakfast this morning and he was full all morning - so maybe that's how we can fill him up.

Amy and I had an appointment this afternoon with the psychologist. We missed her last week when she came and visited the boys and they told her "you're seeing the wrong person - Mum's the one who needs help!!" We had a nice chat and I'm glad to say I wasn't committed to the psych ward - just yet anyway!!

Murray and I also had an education session with the haematology co-ordinator. She explained some things in simple language and that helped fill in a few blanks for us.
Now we just need to talk to the DR to fill in a few other questions that we have.

Tuesday 16th February 2010

2010-02-16T02:12:00.000-08:00

Luke had a 2am wake up again for his blood sugar check. It was 3 so he had to pop the jelly beans again. They've just check it again now at 9.30pm and his level was 5.8. So all is good.
Luke has his two doses of chemo via the central line this morning. Unfortunately we couldn't get Luke up and about today even for a shower as he was feeling really lightheaded and a dull pain in his head. So he's had a lazy day watching TV and eating non stop. Both grandparents turned up at lunchtime and after his hospital lunch and a toasty cheese sandwich he was still pleading with us for more food!! I really don't know where it is fitting!!! His weight today was 79.1.

His blood levels were:
Haemaglobin 86 / White Cell count 1.0 / Platelets 85 / Neutrophils 0.12

Somehow his own red blood and platelets increased themselves from yesterday so he didn't need a blood transfusion. I have no idea how these levels can change so much from day to day!
One reading they did pick up was low was a type of protein in the blood. So he had to have an injection of something today to fix it.

Luke and I have been sat watching Top Gear tonight and having a good old laugh at them - they are absolute idiots but great entertainment.

I must make mention again of all the wonderful people who are taking part in shave for a cure in March. I've just heard that two more of Luke's friends are taking part. Daniel and Tim. I mentioned the other day Jack and Canberra Grammar and also Alison at Lanyon Pharmacy. I must say though it feels a bit odd/funny at the moment that all these people are willing to loose their hair and at this stage Luke has not lost any and is still not feeling any ill effects from the chemo. I've got everything crossed that this remains the same for the next few weeks for Luke but at the same time we feel guilty for those brave people if Luke doesn't loose his hair. It's not too late to pull out yet!!!

Monday 15th February 2010

2010-02-15T01:58:00.000-08:00

Luke is getting really used to the disjointed sleep. He got woken up at 2.30am with the nurse wanting to check Luke's blood sugar level. It was 3 which is very low. Should be I believe between 5-7. So the nurse asked him to have a cup of juice or choc or lollies. I ended up grabbing about 5 jelly beans for him. Not quite what you expect to eat at 2.30 in the morning. The gang at the pharmacy where Luke works will get a laugh at this as he was always buying the pharmacy jelly beans!!
They tested his blood sugar again at 11am and it was 5.9 - so that was good. It normally climbs by the end of the day so we'll see how it goes.

He had a day off from chemo today but had to go and have a chest x-ray. He has this once a week. We had a visit from the dietician today and we went through a long list of questions with her about what he can and can't eat when he is neutropenic. He has been neutropenic for 6 days now - we know he is neutropenic when his neutrophil level drops below .50 - This means he is more prone to pick up infections from other people and really needs to stay within the limits of what he can/can't eat to avoid picking up salmonella poisoning.

His levels today were:
Haemaglobin 80 /White Cell Count 0.8 / Platelets 58 / Neutrophils 0.05

Murray and I went for a meeting at Lake Tuggeranong College today to discuss the options available for Luke. They were very understanding and informative and said they would do whatever they could for Luke. We have asked for his individual teachers to contact us with options of being able to do his work online at times when he will be unable to attend college (at this point we have no idea how often this will be) - so we will wait and see what happens.

Luke also had a visit from the physio. They suggested Luke visit the gym downstairs (if he ventures out of the acute care ward while he is neutropenic he needs to wear a mask) so he wasn't too keen on the idea. There is an exercise bike on the ward so we may have to get him on that. She suggested that he needs to get up and walking around and exercising. He must have listened to her because when Murray and I came back from the college he had managed to walk down to the kitchen at the other end of the main ward (with his mask on) to cook himself a wokka(noodle) box in the microwave. It's amazing how food can motivate you to do something!!

Sunday 14th February 2010

2010-02-14T00:17:00.000-08:00

Luke sat watching Star Wars last night and after falling asleep got woken up at 12.30 and 2am for observations. It was a nurse that hasn't worked night shift before and she turned the light on to do everything. Luke wasn't too impressed. The fire alarm went off again this morning at 5.30am but only for a minute this time. Blood wasn't taken till 7am with the morning obs.

They are a little concerned about his blood sugar levels. This morning they were 2.9 then 10 at 10.30am. By the evening they generally climb again. A normal blood sugar is around 5 - 7.5. We are pretty sure this is to do with the steroids he is taking but they are still looking carefully into this.

We spent the morning watching the winter Olympics.

His weight today was 79.0 so climbing slowly.

He had his "bee sting" injection just as Grandma & Granddad turned up with lunch. He ate his hospital lunch and a toasty sandwich. This afternoon he had 10 bags of cryoprecipitate for clotting as obviously this level was down again.

Blood levels today:
Haemaglobin 83 / White Cell Count 0.8 / Platelets 48 / Neutrophils 0.13

Nanny bought in our dinner tonight and Luke ended up having some yummy scones, jam and cream for his dessert. We are now settling down for a night of TV.

Saturday 13th February 2010

2010-02-13T02:22:00.000-08:00

Well Murray, Amy and I ended up going out for dinner last night and Luke convinced us to go home for a decent nights sleep while he was feeling okay and not having any treatment. Shame it didn't work as Murray and I didn't have a very good sleep and had the weirdest dreams all centred around looking after Luke - we ended up having a nice little conversation!!! Luke on the other hand seemed to have a lovely peaceful night with no one to nag him. Murray went in first thing this morning.

I really don't have much to report. Luke had a day without chemo today and ate all day long. I really don't know where he is putting it. He had cereal and vegemite on bread this morning. Lunch consisted of pizza and scrambled eggs (strange combination I know but on the hospital menu he wasn't sure what the pizza would turn out to be so he thought he'd better put in a special order of scrambled eggs from a special neutropenic list he's been supplied) / then Nanny brought in Salmon mornay and baked potato and a bread roll. His afternoon snack was hot chips from the cafeteria that Murray went and asked to be freshly cooked (as hot food has to be hot - not sat festering in a tray). Then dinner was roast pork, potato and vegies followed by a Wokka noodle box (that he has mad cravings for at the moment).
He is putting weight back on and is currently 79.1kg.

Luke started watching the Winter Olympics - opening ceremony. I guess that will be one benefit of sitting in front of a hospital TV during the day!!

His blood levels are:
Haemaglobin 94 / White Cell count 0.9 / Platelets 53 and Neutrophils the weekend staff didn't count.

Friday 12th February 2010

2010-02-11T22:05:00.000-08:00

Luke and Murray had a bit of a disjointed night with Luke having to have blood taken at 1am. This was a blood test that was needed 12 hours after the injection to treat the protein in the blood. He had another usual blood test at 6am. The doctor came in this morning and said that the test showed an abnormal result that could have been caused by contamination in the line (the stuff they use to clean the central line) and this could have affected the results. They took more blood at around 11am. I've just spoken to the intern and he said this test came back fine. However it did show that the fibrinogen level was on the low side again and they will give him 10 more bags of cryoprecipitate tonight (clotting agent).

The other problem I mentioned is that Luke's blood sugar level was 19 yesterday. It was 3 this morning and they just checked again at 5pm and it was 16. So it must be the prednisolone causing the problem. Not quite sure what they are going to do about this at the moment.

Luke continues to say he is lightheaded when he stands up. They have taken his blood pressure a few times lying down then standing up and it the range immediately changes by 30 and his pulse is racing. They are going to keep their eye on this.
His appetite is going strong and he put on a kilo today 78.4kg.

Luke had his "bee sting" injection at around 4pm. He must be getting used to it because it's not being as painful.

Blood levels today - not much change from yesterday:
Haemaglobin - 98 / White Cell Count - 0.8 / Platelets 48 / Neutrophils 0.31

Not sure if I mentioned earlier but Luke has had a blocked left ear for about 5 days. They had been trying to soften any wax with olive oil. They decided to call in an ear specialist today and he suctioned out the wax. He ended up having quite a bit of wax in both ears. He can hear us now - and I thought it was just selective hearing!!!

Murray, Amy and I are thinking of heading off for a dinner out somewhere tonight - once we get Luke settled after his dinner. Depending on how he is going we may all end up going home for a good nights sleep in our own bed and one of us will come back first thing in the morning.

Thursday 11th February 2010

2010-02-11T00:37:00.000-08:00

Luke and I had a very disruptive night's sleep last night. The normal time that Luke seems to be getting to sleep is around 11.30pm. I've tried coaxing him to get to sleep earlier and that he must be tired but he says he isn't. Admittedly the nurse didn't wake him up to take his temperature at the normal 2am which was a godsend however the fire alarm went off at 4.45am and sounded for about 10 minutes. Very loud!! It turned out to be a false alarm in the radiation and oncology area downstairs. Then he had his usual 6am blood taking and 7.30am breakfast and tablet run at 8am.

Luke had a day off from chemo which was great. However he did not escape getting pumped with drugs. It seems that a blood test showed the protein in his blood to be sitting at 80. When he came in his level was 120. Dr Dipti came around and said that they would start treating this now as if the level drops below 60 he has a high risk of developing blood clots that can travel around the body and obviously what we don't want is a clot developing in or going to the brain.

The other problem he has at the moment is his sugar levels are at 19. I can't remember what a normal level should be (I know it was something with a single digit) so they are concerned about that and if it doesn't settle down he will need to have insulin. He has been having a few lollies and quite a bit of apple juice so we'll try and limit this to see if it has any impact. They have said that the prednisone (cortico steroids) that he is on do cause your blood sugar to increase and they have decided to decrease this daily dosage a bit.

Blood levels for today:
haemoglobin 100 /white cell count 0.8 /platelets 46 /neutrophils 0.30

He is still eating well and his weight has remained stable. However he is getting really light headed and is very weak when he walks to the toilet and shower. We have been trying to get him walking around but he hates the masks he has to wear when he leaves the acute ward (due to him being neutropenic - subject to picking up infections). We need to get him up and moving so that his muscles don't deteriorate too much as well as to avoid blood clots. Having said all of this he actually looks pretty good in himself - nowhere near as pale as he was a week ago.

I think I've hit the wall today as I am really tired and feeling a bit off - so I stayed clear of Luke this afternoon/evening when Amy and I delivered Murray's dinner. I'm about to go and have a soak in the bath and have an early night.

Wednesday 10th February 2010

2010-02-10T01:16:00.000-08:00

Well I’m having trouble with the internet connections at hospital tonight – can’t seem to stay on the blog without it dropping out. So I'll make this quick while I have a connection.

Not much to report today. Luke had a good day – eating plenty. Luke had 10 further bags of cryoprecipitate today – to help with clotting. He then had his “bee sting” injection of chemo into his backside around 5.30pm this afternoon. He must be getting used to it because it isn’t hurting as much or as long. Luke thinks this depends on how slowly the nurses inject it – the slower the better.

Not much else happened today. Luke has spent the afternoon watching cooking shows. He loves watching them – always has. Shame he never had any inclination to cook any of the creations at home!!!

Lukes’ blood levels today were:
Haemaglobin 103 / White Cell Count 0.9 / Platelets 40 / Neutrophils 0.45. He has dipped into being neutropenic today (under .50) so he needs to pay particular attention to what he’s eating and he is more prone to pick up infections from any visitors if they are unwell.

A few people have asked when Amy’s blood test results will come back to see if she is a match. I asked today and got told it would be 2 weeks as they do quite intensive testing on the blood in Sydney.

Tuesday 9th February 2010

2010-02-09T01:36:00.000-08:00

Luke had chemo today which involved 2 drugs being dispensed through his central line. All went well. If you could pick a chemo treatment this would have to be the best day of drug taking - no pills or needles.
Having said no pills - he still had his usual large dose of steroids etc.

Luke has amazed us with the amount of food he is eating! He seems to be craving salt. Today he ate 4 pieces of toast for breakfast / snitzel and veg was the hospital lunch and a cheesymite scroll from Bakers Delight / Dinner -he wasn't keen on the hospital Soy Honey Chicken so he asked for a Wokka noodle box which he devoured followed by a huge plate of meat casserole, mashed potatoes and vegies that Grandma had made for our dinner. Not to mention the endless amount of cheese and biscuits he is eating as snacks / chocolate mooves / apple icy cups.
The dietician visited today and said if he wants to eat let him eat. She said a normal healthy boy of his age and original weight required 11400 kilojoules a day / 3000 calories. Luke thought that as he was eating well he didn't need to have the supplementary Ensure drink however she advised as he has lost a lot of weight he should be having 1 or 2 a day.

Can't remember if I mentioned that Luke had 2 blood transfusions yesterday evening. They had said that if his levels got around 80 that they would boost him up.
He also had a bag of platelets and today had a further 10 bags of cryopresipitate.
I got told off today for not listed Luke's blood levels yesterday so here they both are:

Haemaglobin White Cell Count Platelets Neutrophils
8/2 81 1.2 25 0.53
9/2 114 2.0 52 1.06

Although such wild fluctuations they are all to be expected.

It's lovely to read that some people are going in to donate blood. A special mention to Mary-Anne our neighbour who has the same A RhD Negative blood type - thankyou for your kind words.

It really is such a wonderful gift to give someone and your donation could save up to 3 lives. I would donate if I could but unfortunately I have a heart problem (mitral valve regurgitation) and the Red Cross rejected me when I tried a few years ago!
Also amazing is Alison - one of the full time staff members at Lanyon Pharmacy where Luke worked casually. She will be participating in Shave for a cure in March. I'll have to double check the date in March on the poster at the pharmacy. I'm sure any donations to her cause would be greatly appreciated.

Monday 8th February 2010

2010-02-08T01:25:00.000-08:00

Luke had a false start this morning and got told his lumbar puncture was going to be at 8am. The nurse soon came back and said she got it wrong and it would be in the afternoon. It turned out to be at 4pm. I'm sure I've said this before but can't remember - the reason he has lumbar punctures is to take a sample of the spinal fluid and at the same time they inject chemo to make sure there are no traces of leukaemia cells in the spinal cord that can affect the brain. I got a little concerned when the intern was having a go and couldn't seem to find the right spot. I know everyone has to start somewhere but preferably not on my boy. He tried for quite a while and the resident ended up jumping in to do the procedure.

It's good to see Luke's on the ball. A nurse that we haven't seen before brought in his medicine this morning and Luke commented that there were only 4 steroid tablets instead of 8. She went away and checked and then came back and said "good thing you checked". So he got his correct dose in the end.

Luke also had a chest x-ray today - he was told he will get one of these once a week just to make sure there is no infection.

I had to pick up Amy from school at lunchtime today. She had to come to the hospital and have some blood taken for testing that will be sent up to Sydney. The doctors want to see if Amy would be a possible stem cell transplant donor for Luke. I'm not sure how long the test results take to come back. Amy has said she will do anything for Luke to help him get better however she hates needles and said if anything goes ahead she will need to be knocked out!!

Luke has just had the dressing changed on his central line site. It's a good thing he doesn't have a hairy chest! Mind you I can still see in his face that it would be like having a wax done!

I was talking with Luke yesterday about "stuff" and said to him that he hasn't read anything about his leukaemia or asked any questions whereas I'm trying to find out everything I can. He put things into perspective for me and said "We know what I have, the doctors have told us how they are going to treat it and they know what they are doing, so we've just got to accept it and get on with it."
I think this speaks volumes about Luke's character and it gives me great confidence that he will have the strength and determination to fight this.

I just want to make special mention of Luke's old Tuggeranong cricket team. Luke played with them for 5 years and most of the team stayed together over the years. Billy and Des have passed on details of Luke's situation to his old team mates and we/Luke really appreciate the messages of support he has received.

Sunday 7th February 2010

2010-02-06T23:12:00.000-08:00

Luke ended up watching Star Wars last night till 12.15am. We went straight to sleep and he got interrupted for his temperature at 2am and then at 6am the nurses barged in and said "good morning Luke - time for blood!" He seriously thought about telling them where to go! We then went straight back to sleep and got woken up at 7.45am with the breakfast tray coming in and his oxycontin tablet (which is his 12 hour slow release pain killer).
Not long after that 20 tablets turned up. It turned out that he had to go back to the 8 tablet dose of prednisone (cortico steroids) instead of getting Dexamethazone via the central line. When I queried why I was told that the prednisone was the official protocol drug and they were just giving him a break from the tablets. He says they taste really rotten so he has devised a way to take a mouthful of apple juice, throw in the tablet and quickly take some more apple juice to swallow it down with - this seemed to work quite well this morning. The other tablets were the regular anti fungal, anti viral, antibiotics, panadol and some sort of sodium bicarbonate tablets to treat the acidity in his urine.

He's eating really well at the moment and keeps asking for more snacks in between meals. Having said that he got weighed today and he has still lost weight - currently 77.5kg.

His morning blood tests came back with levels of:
Haemaglobin 87 / White Cell Count 1.0 / Platelets 28 / Neutrophils 0.80. All down from yesterday. They came in around 11am and said that he needed 10 bags of cryoprecipitate. This is to treat fibrinogen deficiency (clotting agent). Cryoprecipitate is harvested from plasma.

Grandma & Grandad brought in lunch today as Luke had a craving for a crunchy bacon butty (sandwich for those who are not up with English sayings!!)
So we reheated the bacon for him and he devoured it in seconds then asked for the bacon scraps after we had eaten our lunch!

Amy and I left the boys for the afternoon and when we got home I had a call from Murray saying Luke had just received a "bee sting" - L-Asparaginase injection. We had diarised his chemo days off his protocol document and thought he had the weekend off but they assured us they were showing this injection as today. So we will have to check with Dr Dipti that we have been given a copy of the right protocol. He had a nurse who administered this injection nice and slowly and it didn't hurt as much.
I believe he has a lumbar puncture tomorrow however we need to check the details with the Dr.

Saturday 6th February 2010

2010-02-06T01:08:00.000-08:00

Luke and Murray had an uneventful night sleeping for about 6 hours. Amy and I also had a nice sleep in this morning.

They haven't given Luke any Maxalon for nausea today and he feels great and boy has he got his appetite back with a vengeance today!!! He ate all his breakfast/lunch / snacks and dinner. He then had about 3 pieces of homemade pizza that his Aunty Nat had made. He loved it!
His weight this morning was 79.5kg so he's put on nearly a kilo in a day. I'm interested in seeing the scales tomorrow after all this food. His appetite coming back is due to a combination of factors: steroids should be increasing his appetite, haemaglobin increasing, he doesn't have chemo today and tomorrow and currently doesn't need nausea medication.

His blood levels are really good today also.
Haemaglobin - 96 / White Cell Count 1.7 / Platelets 35 / Neutrophils 1.20.

As you will see things will continue going on a bit of a roller coaster with levels moving up and down daily. The good thing about these readings is that his neutrophils are up so he is not in the true danger zone of being susceptible to infections.

Luke has been on the drip since he came in and everytime he needs to go to the loo he needs to be unplugged and his machine wheeled behind him. As he is drinking heaps himself now, they decided to take him off the drip. Luke was really excited this afternoon when he could get off the bed and go to the loo himself without having to ask to be unplugged. Lets hope good days like this outway the bad days.

Friday 5th February 2010

2010-02-05T02:02:00.000-08:00

Well what a wonderful sleep Luke and I had last night. 7.5 hours straight without interuption from the nurses. :) We both woke up at 7am and looked at each other and asked if either of us had been woken up by the nurse but it would appear we were both comatosed.

He woke up feeling good. Breakfast hadn't arrived yet and he asked for toast so I went and made some for him. He got through 1 piece and then got given his daily dose of maxolon - which is an anti nausea drug. Straight away he started feeling nauseous!
So the doctors have now decided to change drugs for nausea.
After breakfast he got all dopey again and ended up sleeping on and off for the morning.

Amy called from school with a headache that she'd had from last night. So Murray went and got her and brought her in (after checking her temperature to make sure she wasn't that sick!) Murray also picked up the families new phones. I'll shortly send out a group email with the details and you will find the new numbers listed on the side of this blog under contact details.
The phones caused a welcome distraction for everyone and Luke sat setting up his ring tone etc. while we ducked out for lunch.

All day the nurse had been threatening Luke with a sponge bath if he didn't get up and have a shower so she set a deadline of 3pm. Cutting it quite fine he finally had his shower at 3.30pm.

At around 5pm Luke had his "bee sting" injection in the butt. He had a nice nurse doing it this time and she was a lot slower injecting the chemo. He did still rate this at about 10 (instead of 20) on the pain scale and the pain lasted for about an hour.

His blood counts were really good today
Haemaglobin 91 / White Cell Count 1.0 / Platelets 32 / Neutrophils 0.74

He has continued to lose weight - currently down to 78.3kg.

Support still continues to come in from everyone. Thank you.
Something I could suggest for those interested is to go and donate blood. :)
I did not realise how many blood products Luke would/will need. However going through this process makes you realise how precious blood is, especially the platelets. Luke has already had about 5 bags of platelets.
For anyone interested Luke's blood type is A Rh D Negative. I've just looked on the Red Cross site and it shows that only 7% of Australians have this blood type. Amy and I are also this blood type. Obviously Luke would not receive your blood directly however it would save so many other lives.

Thursday 4th February 2010

2010-02-04T02:15:00.000-08:00

I’ve come in for the afternoon/evening shift and the mobile broadband isn’t working so Murray is going home to download this onto the blog for me.

Luke had a really good day today – he’s the best I’ve seen him in a while. He started the day very nauseous and dreaded the thought of his daily steroids (8 tablets) and the other 5 various tables. Dr Dipti came and decided he wasn’t coping too well with taking all the tablets so decided to give him the steroid Dexamethazone through his central line rather than make him have the Prednisone tablets. Apparently they are very similar.
Not sure if this is a temporary measure however the nurse said she was so pleased they decided to change.

He is a bit sore in the back/tailbone – I’m sure a mixture of lying on his back and injection yesterday and lumbar puncture. They’ve given him a soft padded mattress to go on top of the main mattress and this has made him a bit more comfortable.

Tomorrow he has another injection into the backside. So I don’t think he’s looking forward to that.

Blood levels – I forgot yesterday’s so here they both are
3/2 Haemaglobin 94 / White Cell Count 1.1 / Platlets 22 / Neutrophils 0.74
4/2 Haemaglobin 86 / White Cell Count 0.9 / Platelets 33 / Neutrophils 0.66

You will notice Luke’s platelets have gone up – he received a bag of platelets late last night. The nurse mentioned that if the Haemaglobin gets below 80 then he’ll have another blood transfusion.

I got told off by Murray and Luke that I told everyone the wrong names for the drink he likes in yesterday’s blog. It is actually called Ensure which is like Sustagen, not Endure like the cereal Sustain which I wrote last night!!! Sorry I didn’t have the sheet with me last night.

Our new mobile phones still haven’t arrived yet so Amy is very unhappy along with me :o( Hopefully they’ll turn up tomorrow.

I went into work today to see everyone and fill out the necessary forms for leave. At this stage I’m off until early – mid April and will reassess the situation then. It was good to see everyone but I still managed to have a bit of a breakdown (apologies to everyone for that). What I would have liked to say to all of you is thank you so much for all of your support. Knowing that I have such a supportive workplace and work colleagues (friends) makes it easier to cope with what lies ahead.

Well I’d better sign off so that Murray can take the thumb drive home and download this onto the blog. Chris.xx

Wednesday 3rd February 2010

2010-02-03T01:55:00.000-08:00

I'm running a bit late with the blog entry tonight. It's now 9pm and I've just walked in the door at home from taking Amy in this afternoon and having dinner with Murray (lovely lasagne from Luke's aunty Nat).

As I mentioned last night Luke got a temperature of 38 degrees. As soon as they reach this level they follow protocol and give antibiotics via the drip every 4 hours for 48 hours. They had the on call doctor come and they wanted to do blood cultures to see if any infection was growing. This means having blood taken from two different parts of the body (some out of his central line and some out of his vein).
As it turned out within about 90 minutes his temperature was back down to 37 degrees but they still have to continue the antibiotics.

Luke probably started to settle down to sleep around 10pm last night and then woke at 2.30am / 5am and then 7am - that is around the drip machine beeping when it's running low and nurses sticking their head in for various other things. So he and Murray or I get quite disjointed sleep.

This morning he started eating a weetbix and got presented with his 8 steroid tablets for the day and a mixture of 5 other daily tablets. Unfortunately breakfast and the tablets didn't stay down and he had to take the dosage again around lunch time. He was booked in for a test at 9am and they decided to pick him up at 8.15am and take him down for a chest xray first. He then had a gamma ray snapshot of his heart. This involved injecting a trace element into his body that would attach to the red blood cells. After about half an hour they then inject a bit of radiation that attaches to the trace element/red blood cells and take images of his heart. These are base line indicators for them to compare down the track whether his heart is coping okay with the chemo.

We arrived back on the ward around 10.30am and he was still feeling really nauseous. Murray arrived around 11.30am and bought a cheesymite scroll in for his lunch from Bakers Delight. He managed to eat a bit of this to get his steroid tablets down with.
He then had a shower and decided to head into the courtyard for a bit of fresh air.

I then went to our own doctor (on Murray's continual pushing) to get my blood pressure checked as I was diagnosed with high blood pressure a few months before Xmas. It was fine but she was worried that I'm not sleeping too well so I now have a sleeping tablet to take when I'm on my night at home.
While I was away the Dietician came in and had a talk to the boys about the special diet he will need to have while he is neutropenic. She showed them a drink he can have called Endure. It's a chocolate milk drink that gives you energy - like Sustain. He had this and really enjoyed it and it seemed to fill him up! So now we will be making sure this gets ordered each day for him.

Unfortunately Luke had another chemo treatment this afternoon. This involved an injection into his backside of L-Asparaginase. Luke told me imagine a bee sting and times it by 10 - 20 times. That's what it feels like and the pain lasts for over an hour. He's didn't enjoy this one at all and unfortunately he will have this every 3 days for the next 4 weeks. Good to see that the boys still have their sense of humour - they reckon Luke has 3 pains in the arse now - Me, Amy and the needle!!!

Luke has a day off tomorrow from any treatment or tests (that we know about anyway)- so hopefully he can rest up and build up some strength for the next bee sting that will happen on Friday. (I know that's not 3 days but they started this one on Day 2 and the next one is Day 4 and every 3rd day after that).

Thank you all so much for the continuing emails/messages of support. We have been overwhelmed with offers of help. As I mentioned at this stage we are doing well as we have so much family in Canberra supporting us. If we do need your help down the track with meals etc we know we have lots of people to ask.

Tuesday 2nd February 2010

2010-02-02T00:23:00.000-08:00

Good evening all,
I'm typing this at around 8.00pm and I've just realised somehow the timing that is going to the blog is not right. I wondered why people thought I was having a nanny nap yesterday evening when in fact it was around 4pm!

Before I forget Happy Birthday to Nev - Murray has just joined Amy at our brother-in-laws place for his birthday.

Luke is doing okay all things considering. He had a bit of sleep last night. Normal taking of blood and pain relief/anti nausea that they give him at 8am and 8pm.
This morning blood levels better.
Haemaglobin 89 / Platelets 36 (due to all the transfusions)
White Cell Count 1.3 and Neutrophils .57

The neutrophils are the ones that kill fungi and bacteria. When you undergo chemo you neutrophils do drop and this means you are susceptible to infection normally 7 - 9 days after chemo for a period of 2-3 days. Unfortunately as Luke's chemo is going for a 4 week period his neutrophils will be low basically for the whole time. He will be what they call neutropenic.What does that mean? Well it means that Luke is still able to have visitors during this period however extra special precautions need to be taken. (If anyone would like to visit it might be best if you contact us via either my or Luke's mobile - please don't take it personally if we say it's probably not a good idea as we will need to monitor him by the day - he does enjoy the text messages so you can keep them coming any time).
It is vital for his treatment that anyone who thinks they have a sniffle/cough/cold/diarrhoea stays away until they are better. Everyone needs to wash their hands with the handwash hanging on the doors in the wards before and after entering his room. Luke will also go onto a special neutropenic diet. This means the foods to avoid are things such as soft cheeses, cold meat/poultry/fish/eggs (including ham and sausages), undercooked meats, salad (including pasta/rice salads), raw and stir fried vegetables, unpeeled fruits and tap water. Obviously this is to avoid the risk of bugs and infection in the foods.

As Luke has been in bed over the weekend getting blood transfusions he is very weak and stiff from being in the one position. The nurses are saying he has to get moving. Previously he was only walking a few steps away to the toilet and back into bed. So today Grandma and Granddad brought in lunch for Murray and I (Luke was fasting again for a test in the afternoon) so he walked out into the courtyard with a mask on and sat with us. The courtyard is right near the designated patient smoking area and unfortunately the smokers tend to creep over into the courtyard so it can make for an unpleasant experience for us non smokers.

Luke started chemo this afternoon around 3pm. The treatment today was 2 different drugs through his central line - Vincristine and Daunorubicin. All very painless while being administered.
He was due to get a lumbar puncture done at 4pm (which is why he had been fasting all day) but it turned into about 5.30pm. The procedure went well and he had some more chemo into the spinal fluid.
Unfortunately at about 7pm he started getting a temperature 38 degrees and his pulse was a bit high. So they are currently taking blood cultures to check for infection and giving him antibiotics. (It's now 8.30pm)
Luke is really quite weak. He was 89kg when we came in on Monday last week and his weight was 81kg today. So quite a dramatic weight loss program he's signed up for!!!
Hopefully the steroids will help him gain the weight back.

I think I've typed more than enough for today. I'm about to go and hassle Luke to have some food.

Monday 01 February 2010

2010-01-31T19:44:00.000-08:00

Wow, I just typed the date in and can't believe it's February already - the days have tended to blend into one big blur lately.

Fantastic news - Luke went down to get the central line put in around 12pm. All went well and he now has his permanent central line in his chest. It looks and no doubt will feel strange to Luke having a bit of tubing with two lines coming off it dangling from his chest.

They cleaned up the wound from the failed central line on the other side of his chest this morning. The blood clot around the wound came off in one large clot however it is still seeping slightly. For the information of those who were unlucky enough to see him in that state, it now just looks like a bleeding sore with a patch on it.

Being as anxious as we were about trying this procedure again, we walked all the way into the angiography room this time. Unfortunately the nurse who had been so kind to us after the 1st attempt said that the same radiographer would be doing the procedure and it was a good thing he knew about Luke and would be more careful this time!!! Can't say my nerves were too good at that point!! However within 20 minutes or so she came out and said it was all done and he was fine.

He came back up to the ward and ate some lunch. His blood levels have dropped again so he his having 2 blood transfusions this afternoon/night. Some people are interested in the numbers so:
Hemaglobin was 85 yesterday / 74 today
White Cell count 1.4 yesterday / 1.0 today
Platelets 36 yesterday / 26 today - one could only hope these had increased from the levels of 13 he had the other day. He has had 2 further bags of platelets since Saturday. Platelets do not last long in the body.

Dr Dipti Talaulikar (we just call her Dr Dipti) saw him this afternoon and said we will commence chemo tomorrow.
Murray has just ducked into work quickly (with Amy in tow) and Luke is sleeping. Once I post this blog I'm also about to put my head down for a nanny nap. It's a bit like the old days in the maternity ward of trying to get a bit of sleep when the baby does - except I've got a much bigger baby now!!!!

Journey Update - 31 January 2010

2010-01-30T17:48:00.000-08:00

A big thank you to Heidi (Luke's aunty) for setting up this blog. Between Murray, Heidi and I we will try to update this information as regularly as possibly to keep anyone who would like to access the blog informed about his progress. Feel free to pass Luke's Journey blog address to anyone who you think may be interested.
(Note: the blog will always show Heidi as posting an entry as the account is in her name)

Luke has received some more blood transfusions and platelets. His red blood cell count (haemoglobin)has gone up to 84 and his platlets have increased to 22. This is good news as the platelets have been down to 12. To give you an idea the normal adult male haemoglobin range is 130 - 170 and the platelet count is between 150 and 400. His white blood cells are down as a result of the steriods, which is a good thing. He had no energy this morning and some discomfort from the failed central line site. I'm really excited now though as he ate properly for the first time since Wednesday early morning. Would you believe he ate roast turkey and mashed potatoes!! The rest of the day we hope will be for lots of rest ready for the central line to go in hopefully early tomorrow morning.

Journey Update - 30 January 2010

2010-01-30T02:56:00.000-08:00

Yesterday the hospital attempted to put a Hickman(central) line into Luke's chest to assist in taking blood, giving transfusions and drugs such as his chemotherapy. During this procedure there were complications and they aborted putting in the line. This was probably due to Luke's blood not clotting. He has since been given some platelets and some blood to bring up his blood count so they can put in the Hickman line hopefully on Monday. Once this is in Luke can begin his chemotherapy. In the meantime they have started pre chemo cortico-steroid treatment (8 tablets a day).

The Journey Begins

2010-01-30T02:52:00.000-08:00

Each day brings more information and understanding. It has been a great shock and we continue to question why and how this could happen to Luke at such a young age and to someone who was in good health.

Doctors and nurses have a treatment plan to help Luke fight this disease. Luke has been in hospital since Monday at Canberra hospital in the Oncology Acute Care ward. On admission he was in pain from a bigger than normal spleen but is now comfortable from pain relief. We have been told to expect 8 – 9 months of treatment with about 4 to 5 weeks in hospital for the initial chemo treatment.

Luke and family have received many well wishes and are appreciative of the great support of family and friends. Family located in Canberra have been at the hospital offering support and care. Luke was visited by some of his mates on Thursday and was in high spirits. Murray and Chrissie are staying at the hospital taking it in turns to stay over night. Amy has been at the hospital with her parents and Luke, coming home each night to spend time with her mum and dad. Luke is his usual cool self taking everything in his stride and not trying to make it a big deal. Thanks to everyone for their support, well wishes and thoughts. It is greatly appreciated. Chrissie has been reading out text messages and emails. He also has a pin board that we can put up any cards, notes for a bit of colour on his wall. Luke is eating very little, preferring ice cups and water. He is very pale, to be understood given his blood is the problem.