Tuesday 4th December, 2012

Time for an update. All is going well with Luke, he recently started his 2nd last 3 month chemo cycle ever! Yay! We saw Dr D'Rozario last month and he confirmed that Luke's treatment end date will be 5th May 2013. Luke has had a busy few weeks with exams at Uni. Had his last one today - so he's glad they are out of the way. He will be working at DAFF four days a week over Dec/Jan and into early Feb until Uni starts up again. Thanks to all his hard work at DAFF, Luke had been saving hard for his dream car. He's been looking at car sales for a few months and finally one was listed that ticked all the boxes. The only problem - it was in Melbourne. So we have just had a tiring 16 hour round trip from Canberra to Melbourne over the weekend. I've attached a photo of his new pride and joy. It's a Mitsubishi Lancer Evolution IX. It is a 2005 model - turbo (so I'm not happy about the power) and it cost him over $30K. A lot of money to spend on an older car but as he said he's been saving hard, has no other commitments and it was the car he's always wanted. We couldn't stop him from buying it and wouldn't want to as he deserves to have something good come his way. Murray's sisters and families are heading to New Zealand for Christmas so we are having an early Elton Xmas this Sunday. As no one will be in Canberra, we've decided to get a 3 bedroom apartment at Mollymook. Mum & Dad will stay with us and on Xmas Day we will catch up with Murray's Mum & Dad who will be down the coast staying with family. We are looking forward to a nice break away. So that's all our news for now. Wishing everyone a safe and Merry Christmas and all the best for the New Year.

Friday 5th October 2012

Wow - I didn't realise how slack I have been in putting up a post. Well as the saying goes - no news is good news! Which is exactly the case for the Elton's at the moment. Luke is going along well, coping with chemo with the odd day of feeling crappy, going to uni and keeping up with all the assignments that seem to be rolling in and going to work 3 days a week at DAFF. He's still in remission and just taking chemo to keep him that way. I'm not sure of his final finish date for treatment - however it will be somewhere between Feb - Jun 2013. Officially if we follow the protocol document, he needs to have maintenance chemo for 3 years from the first interim maintenance period (which I calculate the end date as being 31 May 2013). However the way his 3 monthly cycles are set up at the moment, he has one ending 5 May 2013. So I need to check with the specialist whether this will be okay or whether he has to have one more cycle after that? Murray is doing well - went to the specialist again a few weeks ago and all is good. He's had no other episodes, so I think the blood pressure tablets must be helping to control things (not that he has high blood pressure!). He still isn't driving yet as the specialist said to wait for the 6 month all clear. So at the end of this month he should be good to go. Yay...no more late night runs for me picking Amy up from work on a Friday night! Murray and I went to South Australia for a weeks holiday in September. I had tried to plan it for December when the kids would have been free of uni and college, however they weren't that interested in coming and told us to go alone. So we had a nice time visiting Adelaide, the Barossa Valley, Adelaide Hills, Kangaroo Island and McLaren Vale. The kids seemed to survive okay and there didn't seem to have been any wild parties as they both had their heads down doing assignments. Amy has had a rough trot with her health in the last few months. She started with a cold then we found out she had a true flu. That knocked her around for a quite a few weeks and then she needed all 4 of her wisdom teeth out. She survived that, however 2 weeks after the operation she got an infection. She got given more antibiotics that seemed to work but then once again 2 weeks later she had another infection. We could feel a lump in her gum so the dental surgeon agreed to re operate. So the poor thing had to go under anaesthetic again. This time it all worked. So touch wood...she seems to be okay at present. So that's all our news for now....I'll try to remember to update the blog in a few months, however as I said everyone is doing well at the moment so not much to report.

Thursday 21 June 2012

All is going well with Luke. He has just finished uni exams and he seemed to do really well as usual. We saw the specialist a few weeks ago and asked if he could have a week break from chemo cycles so that he wouldn't have to do exams while feeling really crappy. Luckily he did have a break and got over his exams as when he started up the next cycle he ended up having the week off work feeling really horrible from the chemo. Obviously when his body has a break and he gets hit with chemo again his system must suffer more from the toxins. He's back into the swing of things again and all is back to normal. He now has a 2 month break from uni and has had his contract with DAFF extended. They wanted him to work full time however I suggested he ask if he can work 4 days a week as he has been going non stop for a year with uni and work and needs a bit of down time. They agreed and have actually reassessed the role and standard of work that he has been doing and as such he has gone up 2 levels in the pay scale. Which is really amazing for someone of his age to be earning so much. Obviously he is doing a good job as they keep extending his contract. Murray is doing really well. He hasn't had any other episodes (thank god). He went to the specialist on Tuesday for his 6 week check and all seems to be going well. He had an ECG done and the doctor said he is still showing irregular rhythms. These are apparently normal for him however the doctor said if you went to emergency again and a young doctor saw this ECG they would think you were having a heart attack. So it's best to let them know his irregular rhythm is normal! They then put a computer over the defibrilator to check it is working okay and to take a print out of the history. It was quite amazing, as they said what were you doing at 6pm last Thursday. It turned out Murray was running for his bus (that he missed). Although nothing was wrong with the increase in heart rate it was obviously enough to register a spike on the printout! So I guess there is no running in marathons on the cards in the future! He has been given the all clear to play golf (very important!) although it will be interesting to see if it affects his game. He had been down to a 2 handicap so hopefully he won't be too badly affected. He has been told he can rotate his left arm fully now. The only thing that he can't do is drive. He probably would have been okay as no cardiac arrest was recorded against him, however when the specialist found out Murray rides a motorbike he was reluctant to give the all clear. Murray also had concerns riding, not for himself but if he had an episode what might happen to those around him. So the doctor wants him to wait a few more months to make sure he has no episodes. Murray doesn't mind as he catches the bus to work anyway so I'll just play chauffeur for a bit longer. Other than a cold Amy has been suffering with last week, which she now appears to have passed on to me, we are all doing okay.

Tuesday 8th May 2012

Murray got the defibrilator inserted yesterday. He was told the operation would be at 9am or 2pm. He ended up going in at 3pm and it took over 2 hours for him to come back to the ward. He has a bit of a bulge under his left collarbone where it was inserted and it looks like a cut about 6 cm long. He was heavily sedated at the end of the operation so that they could simulate a cardiac attack and see if the defibrilator worked itself. Apparently all went well. Due to all the sedation he was out of it last night and today doesn't remember who was there or asking me the same questions over and over! The defibrilator has been programmed to only kick in if the heart stops - hopefully it is never needed, but it's good to know he has his mini ambulance on standby all the time. There is a chance he could have another episode of fainting and if this happens I need to get him to the hospital again. Then they will have all the data from the defibrilator to know how to program it against any future episodes. The reason why they don't program it now is so that it doesn't kick in unnecessarily. He is taking a beta blocker tablet and hopefully this will stop any further episodes happening. He has to see our GP next week to get the stitches out and then see the specialist 6 weeks later. As the condition is something genetic, we need to arrange for the kids to get tested to make sure they are showing no signs of the heart wall thickening. Also Murray's brother and sisters will need to get tested. They will need to have tests, I think, every 5 years to make sure the condition isn't developing. The poor kids are screwed with the genetics both sides of our family are passing on!!!! (parkinson's and heart conditions). Hopefully they get the all clear. Murray was discharged this morning into my care. He needs to recuperate for the rest of the week and should be able to go back to work next Monday. Whilst he can't do any strenous sports or repetitive physical activities (such as shovelling dirt), he should be able to fully settle back into normal activities (including Golf) after 6 weeks. I think Murray has managed to take another 10 years off my life due to stress!! but I'm glad we caught the problem and he's still around to annoy me :)

Thursday 3rd May 2012

Murray had the heart MRI at around 12.30pm today. We waited for the specialist to come and see us with the results at about 5.30pm. His results show scarring of the heart so he will definitely be getting an implantable cardioverter-defibrillator (ICD). The operation was scheduled for 9am tomorrow (Friday) however due to a horrible accident his operation will be postponed to Monday. A Canberra hospital staff member (part of the cardiac team) was killed at around 5pm as she crossed the road outside the hospital. Another colleague was injured but is in a stable condition. Apparently a car ran a red light and knocked the pedestrians over. Dr Tan was obviously upset when he was telling us about his staff member who had worked at the hospital for 15 years and who has 4 children. He said that his team would be too distraught to operate tomorrow (which is totally understandable). So Murray sits and waits a bit longer. He will have been in hospital for 2 weeks from midnight Friday. The operation is fairly straight forward, however once inserted they will actually test the defibrilator by stopping his heart (scary but obviously necessary). He should be allowed home the next day and then needs about a week to recuperate. He won't be able to fully lift his arms above his head for about 6 weeks (so no golf for a while!), this is to allow the wires to embed properly in the heart muscle. I'll update early next week to let you know how the operation goes.

Tuesday 1st May 2012

A quick update on Murray. He remains sat in hospital absolutely going stir crazy! We found out that if the MRI was to be done in the private hospitals it would mean waiting till at least next week till the operators are back from leave. Dr Tan has managed to get a booking at Canberra Hospital for Thursday. It would again appear that only one doctor can do this specialised Heart MRI, he has just become the Director of Medicine at the hospital and it is very hard to get a booking for this procedure. Anyway hopefully it will go ahead on Thursday and this test should confirm the diagnosis of Hypertropic Cardiomyopathy. Dr Tan told Murray today that if it's decided to go ahead with inserting the defibrilator this could possibly happen on Friday. So Murray is fully equipped with lots of movies and TV downloads to keep him occupied for a bit longer! I'll update once we hear any further news.

Wednesday 25th April 2012

Well I’m afraid things are going from bad to worse for us. We want to know what Chinaman we’ve killed but decided it must have been a whole village! Not good news at all regarding Murray, as it's much more serious than we thought. He had an echo on Tuesday and it showed thickening of the heart wall. The specialist saw us today and said the official term is hypertrophic cardiomyopathy. Apparently it’s a congenital heart condition, so it may have been inherited by abnormal genes or his DNA could just have mutated the genes. Dr Tan said that he’s still not quite sure how we will proceed with treatment for Murray as he is relatively young (45) and he could potentially be at risk of sudden cardiac death based on the events that took place. He wanted to see me to get my first hand version of Murray’s episode (I’ve kept missing him when he came for rounds very early each morning), so that he could put all the pieces of the puzzle together. He wants to get an MRI of the heart done as this will show any scarring of the heart muscle that the echo can’t show. If there is scarring then Dr Tan will go ahead with inserting an implantable cardioverter defibrillator (ICD) – this will mean his heart will get kick started automatically if he has another cardiac attack. If there is no scarring, then he’ll have a rethink about the way to proceed as putting an ICD in is basically for life. The other option is treating with medication and monitoring quite closely, however he runs the chance of having an attack when no one is around to help him. So as if all of that isn’t bad enough news, as I was sat waiting to see Dr Tan on Tuesday afternoon, I received a call from Luke saying the house had been broken into! Luke had arrived home from uni and upon reflection we think his noisy car may have disturbed them as they didn’t fully complete attacking my jewellery and had only got to one of Amy’s drawers. Luckily being school holidays, Amy was out of the house at her cousins (although now freaking out about “what if” she had been home). It is obviously kids as they have taken Luke’s x-box / controllers / and about 60 games that he’d collected over the years. They’ve gone through all his drawers, dumping the clothes on the bed and taken a money box full of $100 in $1 coins and other collectable coins he had. They’ve cleaned out the drawer in the family room of x-box games but left the wii and wii games (fussy robbers). In my room they were just looking for money – they’ve obviously looked under the mattress and pulled out all our drawers/clothes then found my hiding stash of jewellery. I don’t know that I have that much expensive jewellery (never had anything valued) but certainly lots of sentimental items gone (mainly gold that might be sold easily). They only took a few things from my actual jewellery box so that’s why we think they may have been interrupted. They’ve taken lots of other things like my laptop, Amy’s good digital camera, hard drive and all the spare keys hanging on the rack. This meant changing house locks and garage door locks last night. With the public holiday today, I haven’t had chance to sort out what we are going to do about changing locks for cars. Murray rides a scooter and they took his backpack which contained a full set of keys as well as the spares off the rack so we don’t actually have a key at all for the bike. So at this stage, we need to wait for a spot for the MRI at one of the private hospitals (hopefully by the end of this week) and if Murray gets the ICD (this would more than likely happen next week). It’s actually not a big procedure and from reading information he should be able to go back to work after a week or so. It’s obviously just a change for life that he’ll have to get used to. So I’ll keep you updated about where to from here once we know anything else.

Monday 23rd April 2012

Luke is going really well - still having the odd day of sickness due to nausea or headaches caused by the continuing chemo and his liver function tests still keep going high so I'm not convinced that the dosages are totally correct yet. He's busy doing Uni assignments and has exams towards the end of May. Still working 3 days per week at DAFF and enjoying it. Especially the money he is saving towards a new car. He went along to an awards ceremony a few weeks ago to be presented with the awards I mentioned in the lat post. His grandma, grandad, nan and aunt as the cheering squad! (Unfortunately Murray and I had work commitments that we couldn't get out of). Unfortunately The Elton's took another hit the other night. On Friday night I went to go to bed at around 11.30pm and Murray had already fallen asleep watching TV. I woke him up and told him to get to bed properly. He took his IPAD out to the lounge to put on charge and then went to the toilet. As he was sat there he said he suddenly felt overwhelmed with nausea. I walked into the ensuite to see if he needed a bucket or something and he went all strange. His eyes were fixated and not moving and I couldn't get any verbal responses out of him other than moaning. I assumed it was a stroke or something and raced for the phone to call an ambulance. This episode lasted for about a minute and then he came out of it and said he was okay and went to get off the toilet. I helped him up and guided him towards the bed, whilst continuing to talk to the ambulance operator and then he slipped from my grip and fainted hitting his head on the wall on the way down. He wasn't unconscious and started arguing with me about who I was on the phone to and that he was okay. He was really clammy and sweaty but managed to sit up after a short while. The ambulance operator said he would still send someone around to check him out. The last thing Murray remembers is going to the toilet and feeling sick and then lying on the floor - he doesn't remember anything about he time in between. The ambulance officers started saying it might be a virus, or that he got up too quickly and just fainted. They then did an ECG and repeated this with a more involved ECG and said he had earnt a trip to the hospital! Once in the hospital they ran blood tests and did another ECG which showed the same variants in the Q waves and T waves, indicating an irregular heart rhythm and they were quite concerned. When the blood tests came back they said the blood enzymes indicated that a heart attack had occurred and that he would need to stay in for more tests. They took more blood samples about 4 hours later and these still showed high levels pointing towards a heart attack but they were confused as he had no other symptoms of a heart attack. Around 6am Murray was taken up to the coronary care unit where he was told he would see a specialist that morning. The specialist came and after looking at his ECG and blood results, he told Murray they'd need to monitor him and run more tests and that he'd be in possibly overnight or a few days. Unfortunately for Murray, who by the time we got into hospital was perfectly fine and frustrated,it meant missing out on his parents 50th wedding anniversary party on the Saturday night. The party, by the way, was a great night and everyone had a good time (we had Murray on speaker phone when the speeches were on and took lots of photos to show him the next day). He had a chest x-ray that was clear and more blood tests and then on Sunday got told he was a mystery. The specialist seemed to feel that although he showed all the signs of a heart attack, he did not have all the symptoms to back this up (such as chest pain, tingling in arms) - he only had the blood enzymes as possible proof. So at this point all he had was an irregular heart rhythm (that he could possibly have had since birth) and no other information to explain why the episode occurred and that they wanted more tests to rule out every other possibility. So today (Monday) he had an angiogram ( that shows any blockages in arteries) this was all clear which was good news. He was scheduled to have an echo (ultrasound of the heart structure) this morning before the angiogram, however typically the hospital stuffed up and this didn't happen. After the angiogram he had to lay on his back for 4 hours so any chance of doing the echo needed to be from 3pm onwards however as much as we kept asking when it would happen the time kept ticking away until it was too late to happen today. Murray is so frustrated as he is feeling fine but needs to get the results of this test before they will look at discharging him. So another annoying night will be spent in hospital. I'm hoping the echo will happen in the morning (Tuesday) and that I can bring him home tomorrow afternoon. That is assuming all results come back fine. Whilst it would be good news that nothing is wrong with his heart, my concern lies with the fact that we still won't know what caused the episode he experienced on Friday night and whether it could happen again? So that's our bit of news at the moment. As Murray doesn't remember the episode, he's blaming me for him having to stay in there so long (only jokingly of course) but I keep telling him, he didn't see what I saw (that scared the shit out of me!!) and that he's in the best place to try and get it sorted out. He's also a bit worried as he's booked with his Dad, brother-in-law and golf buddies to go for a golfing week holiday to Tura Beach starting this Saturday coming and whether he'll be allowed to go! So hopefully we'll get some answers tomorrow.

Saturday 3rd March 2012

Okay - I know this is a rare event that I'm doing another post so soon but I need to brag.... Luke received in the mail 2 x letters from the University of Canberra. The first said he had been awarded the Australian Computer Society First Year Overall Excellence Prize. This prize is awarded to the highest achieving first year student from the Bachelor of Software Engineering, Bachelor of Information Technology and the Bachelor of Business Informatics courses and is valued at $200. The second letter said he had been awarded the Australian Computer Society Bachelor of Information Technology First Year Prize. This prize is awarded to the highest achieving first year student from the Bachelor of Information Technology and is valued at $310. What an absolutely amazing achievement given what he has been through. We are so proud of him. If he keeps this up he'll have companies knocking on his door seeking him out for jobs!

Thursday 23rd February 2012

Wow...I have been really slack. It's been over 2 months since my last post! So what's been happening. We had a great Christmas. My brother and all the family came down from Gosford and brought everything with them to make us a beautiful Xmas Eve dinner. They said we had done lots of work to get Mum & Dad moved so this was their thankyou for our hard work. We then had a lovely Christmas Day lunch/dinner at Murray's sisters place with all the family (including my Mum & Dad). Mum and Dad are settling into the retirement village and starting to join into the activities. Dad is a member of the Men's Shed and today went and did some woodwork. He is also playing Kelly pool with a group of others and going to the gym every now and then to exercise his knees. Mum & Dad have also been going along to movie days and happy hours and meeting lots of new people. They had terrible trouble getting a land line phone put on. It ended up taking over 2 months. After lots of investigating and many, many phone calls (I felt like the Erin Brochovich of the oldies) it was discovered that a section of cabling within the village was missing. I took it up with the CEO and within hours of getting my 5 page report on what I'd found there were 'suits' everywhere in the village and the CEO came over to apologise to my parents and say they would try and get it fixed as soon as possible. It still took a while as Mum and Dad wanted to lock into TPG not Telstra. But all is good now and they have a phone and the internet. Yay! We went to New Zealand on the 16th January for 2 weeks. We had a fabulous holiday. The weather was really good at 23 degrees most days and nice and sunny. We only had 1 day of drizzle in Rotorua. We flew into and out of Auckland, then went to the Bay of Islands, Coramandel Peninsula, Bay of Plenty, Rotorua, Lake Taupo, Napier, Palmerston North (where we caught up with our brother-in-laws family), Wellington, Wanganui, New Plymouth and Waitomo Caves. We had lots of fun with a few key highlights. 1. Murray getting stung by a wasp and having an elephant foot for a few days. 2. In Rotorua we went up the Skyline (gondola) and then came down the massive hill on a luge (like a toboggan on wheels with a brake). The only problem was Luke was too tall for the luge and had his knees up round his ears (not quite but that's the best way to explain it) therefore he couldn't get his brake to engage properly and on one of our last runs down the mountain he lost control and had a stack in the sand barrier! 3. We went on a Jetboat over rapids near Lake Taupo - lots of fun and somehow I managed to get soaking wet from all the spray on my side of the jetboat and Murray hardly got wet at all on the other side. 4. We went black water rafting at Waitomo Caves - which involved getting into a wetsuit with a miners type hat on with a light and then going to the underground caves. Once we walked quite a fair way down through the cave we came to water and then sat on black tyre tubes, linked feet in a chain and floated along in pitch black looking at the glowworms. It was very serene, until we reached the waterfall that we had to jump down! Amy hates the dark so she really conquered her fear full on with this activity! We then came back to Australia and straight back into it. Back to work, university and college. Luke has returned to DAFF part time 3 days per week and university for 2 full days. Amy started Year 11 at college and has juggled a few classes around but seems happy now. I'm still at Defence in HR but have moved areas to Graduate Recruitment. I certainly started in a very busy time with new graduates starting for the year as well as heading into career fairs and assessment centres for next years grads. So how is Luke doing? We'll after thinking that his liver function levels had settled down and the chemo doses were finally right we were proved wrong the week before we went to NZ. Therefore he was on hold for over 2 weeks while in NZ (which was actually a good thing for him) and as soon as we came back they have juggled once again with his chemo levels. He is now taking 50% of the daily Mercapturine chemo tablets and 50% of the weekly Methotrexate dose. His levels went up a bit again but the doctor wanted to see if the levels were high 2 weeks in a row. They came down, so he has continued at these levels for now. He did have a day off work on Monday as he was feeling really nauseous and after a blood test today things seem to have settled back down again. So for now we will keep going on this dosage and monitor things till we get the levels right. He is due to finish this 3 month cycle on the 4th of March and will go straight into a new 3 month cycle on the 5th starting with a lumbar puncture.