Sunday 5th May 2013

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YIPEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Luke has finally finished his chemo treatment after 3 years and 3 months. It's seemed like an eternity but actually time has gone by extremely quickly. We went to see Dr James D'Rozario on the 1st May and Luke was given the go ahead to go and live a 'normal' life. The only warnings he has given Luke is to be sun safe as all the chemo has made him photosensitive, look after his bones - as they could be more brittle in the long run and to build up his fitness levels and strength. The specialist also said there is a risk he could get a secondary cancer but that would be an unknown factor and might not even happen or if it did, many years down the track. Fingers crossed that never happens. Luke has to wait another 2 years until he officially gets the all clear or be able to say he is cancer free. This will be 5 years after he first achieved remission. Luke will continue to see James every 4 months or so for a while and get a blood test done just prior to his visits to make sure everything is still on track. Luke, being Luke, didn't want to make a fuss of ending his treatment, unlike me - who wanted to have a big party to celebrate and thank everyone who has supported Luke along the way! So the family members all went out to dinner to celebrate. He received some lovely cards that had very touching words in them (especially Amy's card to her brother). Being the sook that I am, I had a cry. But this time, it's all happy tears! So hopefully this brings an end to Luke's journey with leukaemia and he can move on with a new chapter in his life. We all (especially Luke) thank each and every one of you for your continued support of him and the family during what was a very challenging time. It was definitely a wild rollercoaster ride with some ups and lots of downs. Luke started this journey as a young 17 year old boy and has come out of this a confident, strong young man. We wish him happiness, success and good health for the future.

Thursday 21st February 2013

Where is the time flying to? Luke has just started his last 3 month chemo cycle. YAY! So all is still on track for an end date of 5 May. He continues to have chemo with the following treatment - a daily Mercaptopurine tablet, a weekly Methotrexate tablet, and a monthly injection of Vincristine. He also take Prednisolone steroids once a month for 5 days. With starting a new cycle it knocked him around a bit and he felt really headachy and tired and had to have a few days of work. He has also started back at university - so his final year doing his Bachelor of Information Technology. Now it's time for my proud Mum brag again - Luke received a letter in the mail from the university saying that he was being awarded the Australian Computer Society Second Year Overall Excellence prize. This prize is awarded to the highest achieving second year student from the Bachelor of Software Engineering, Bachelor of Information Technology and the Bachelor of Business Informatics courses. He won the same award last year as the highest first year student. We are SOOOOO proud of him. What an amazing achievement to get this award 2 years in a row, whilst undergoing chemo and working at DAFF 3 days per week. Luke has an amazing friend, Daniel Sims, who is taking part in the Leukaemia Foundations shave for a cure fundraising event for the third year in a row. If you are able to, I encourage you to support Daniel with his fundraising by visiting the link to the World's Greatest Shave at the bottom of this blog page. (I tried to put the link here but I'm obviously technically challenged and the link didn't work). Luke continues to remain in remission and we are on the countdown for the end of his treatment.

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.