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
Luke is much better in relation to the infection. He has had no more temperatures which is great. He is still on antibiotics. The latest theory is that when blood culture samples were taken from Luke's central line - the saline that they use to flush the line after using it would have flushed the toxins that were in the central line through his system. As this was done a few hours before the central line came out this is what caused the sceptic reaction.
Yesterday the general surgeons came to see about operating on Luke's ingrown big toe toenails. He was neutropenic based on blood samples from the day before and they said they wouldn't operate when his neuts were so low. That afternoon when new blood test results were back, his neuts were 1.6. So the surgeons decided to go ahead this morning. Murray went in to hospital with him. He was in recovery for quite a while. All is good and he now has two bandaged toes. He came back from surgery and was very groggy and slept for about 3 hours. He has some "moon shoes" - basically a strapped on shoe to put on. He has been getting up to go to the toilet however he has just called us to say that his toes are bleeding a bit and he's been told to stay in bed overnight to let scabs form properly. He's also in a bit of pain so they will hopefully keep the pain killers up to him. He said he won't be getting much sleep as they have told him they are going to come in every hour to look at his toes and test his feeling in his feet and other toes and to make sure blood circulating okay.
It was actually my birthday today. I had to go into the city on a human resources course that I am currently undertaking. Amy was working this afternoon/evening so Murray took me out for a nice dinner. So I had a fairly low key celebration.
I'll head into hospital tomorrow morning to spend the day with Luke. At this stage we've been told it will probably be Saturday before he can come home so we'll wait and see if that happens. He has also been told that the maintenance chemo has been put off for another week so this will probably start up on Monday 21st March.
Yesterday the general surgeons came to see about operating on Luke's ingrown big toe toenails. He was neutropenic based on blood samples from the day before and they said they wouldn't operate when his neuts were so low. That afternoon when new blood test results were back, his neuts were 1.6. So the surgeons decided to go ahead this morning. Murray went in to hospital with him. He was in recovery for quite a while. All is good and he now has two bandaged toes. He came back from surgery and was very groggy and slept for about 3 hours. He has some "moon shoes" - basically a strapped on shoe to put on. He has been getting up to go to the toilet however he has just called us to say that his toes are bleeding a bit and he's been told to stay in bed overnight to let scabs form properly. He's also in a bit of pain so they will hopefully keep the pain killers up to him. He said he won't be getting much sleep as they have told him they are going to come in every hour to look at his toes and test his feeling in his feet and other toes and to make sure blood circulating okay.
It was actually my birthday today. I had to go into the city on a human resources course that I am currently undertaking. Amy was working this afternoon/evening so Murray took me out for a nice dinner. So I had a fairly low key celebration.
I'll head into hospital tomorrow morning to spend the day with Luke. At this stage we've been told it will probably be Saturday before he can come home so we'll wait and see if that happens. He has also been told that the maintenance chemo has been put off for another week so this will probably start up on Monday 21st March.
Monday 7th March 2011
Luke appears to be getting better today. Unfortunately over the weekend he kept getting temperatures on and off, more so in the evening. Each time he gets a fever it delays his coming home. So far today he has maintained a normal temperature, so hopefully he's turned the corner.
Murray is feeling better today so he came in and took over from me at lunchtime. This afternoon they had a visit from the infectious diseases unit. Each day Luke has had having blood cultures taken.This means the blood samples are taken to the infectious disease unit and see what bacteria grows in the samples. We were told over the weekend that it appeared that the central line that was taken out was infected. The doctor this afternoon told the boys that it wasn't actually the central line (or equipment/needle of the line) that grew anything. What grew was actually in the blood sample that was taken from the line. However they don't believe the bug thats grown was causing the fevers. They actually think the fevers were caused by the antibiotics that he was being treated with. They have stopped one of the antibiotics and are running further tests. They were going to do an ultrasound on Luke's stomach to see if any infectious bugs are in there (as he has had some stomach pain).
So the long and the short of it is that no-one has any idea!!!!
Luke needed a new cannula put in his hand this afternoon (they are only viable for a few days). Two nurses attempted 4 times without success and then someone came and tried in another vein on his hand. Unfortunately he is turning into a pin cushion with all of the cannula attempts and blood samples being taken. At least the old central line was good for something!
As I mentioned before Luke needs to have a 24 hour period without any fevers followed by another 24 hours taking oral antibiotics which means at least Wednesday / Thursday before he comes out. However given that there are still some complications that might not happen. Also Luke was due to have his ingrown toenail operated on by a private podiatrist today. Obviously that didn't go ahead. However one of Luke's doctors used to be a podiatrist in her past life and she was going to get the general surgeons to come and have a look both big toes (as his other one has started bleeding down one side since being in hospital) and hopefully they can get them sorted before the next round of chemo starts.
Luke is due to go onto maintenance chemo and they think tentatively this may start next Tuesday. Needless to say with finishing intensive chemo about 10 days ago and being neutropenic and now this, Luke has not felt like doing any university work. He is really hoping that he can pick this up again soon. We have already applied for a few extensions on his first assessment items so I hope he can catch up.
Things should get easier for him once he is over this glitch in the program.
I'll let you know when we have any other news.
Murray is feeling better today so he came in and took over from me at lunchtime. This afternoon they had a visit from the infectious diseases unit. Each day Luke has had having blood cultures taken.This means the blood samples are taken to the infectious disease unit and see what bacteria grows in the samples. We were told over the weekend that it appeared that the central line that was taken out was infected. The doctor this afternoon told the boys that it wasn't actually the central line (or equipment/needle of the line) that grew anything. What grew was actually in the blood sample that was taken from the line. However they don't believe the bug thats grown was causing the fevers. They actually think the fevers were caused by the antibiotics that he was being treated with. They have stopped one of the antibiotics and are running further tests. They were going to do an ultrasound on Luke's stomach to see if any infectious bugs are in there (as he has had some stomach pain).
So the long and the short of it is that no-one has any idea!!!!
Luke needed a new cannula put in his hand this afternoon (they are only viable for a few days). Two nurses attempted 4 times without success and then someone came and tried in another vein on his hand. Unfortunately he is turning into a pin cushion with all of the cannula attempts and blood samples being taken. At least the old central line was good for something!
As I mentioned before Luke needs to have a 24 hour period without any fevers followed by another 24 hours taking oral antibiotics which means at least Wednesday / Thursday before he comes out. However given that there are still some complications that might not happen. Also Luke was due to have his ingrown toenail operated on by a private podiatrist today. Obviously that didn't go ahead. However one of Luke's doctors used to be a podiatrist in her past life and she was going to get the general surgeons to come and have a look both big toes (as his other one has started bleeding down one side since being in hospital) and hopefully they can get them sorted before the next round of chemo starts.
Luke is due to go onto maintenance chemo and they think tentatively this may start next Tuesday. Needless to say with finishing intensive chemo about 10 days ago and being neutropenic and now this, Luke has not felt like doing any university work. He is really hoping that he can pick this up again soon. We have already applied for a few extensions on his first assessment items so I hope he can catch up.
Things should get easier for him once he is over this glitch in the program.
I'll let you know when we have any other news.
Saturday 5th March 2011
I'm afraid yesterday Luke hit a very low spot. His temperatures through the day were consistently in the high 38's - 39 degree. They kept various antibiotics up to him and panadol seemed to bring things back down to low 38's. However at 3.30pm Luke started to get prepared to have his central line out . His temperature started climbing into the high 39's and 40's. He had been complaining of chills and shaking and as the operation proceeded under local anesthetic his body started to shut down. One of the nurses notices his nails had gone purple and checked his feet. There was a made rush to get his feet and body covered in warmed blankets - his temperature spiked at 40.9 degrees. In the process of all of this he had to vomit. The central line operation continued however it was buried in his chest a lot deeper than the doctor was expecting. It was about 2cm down so what should have been a relatively simple procedure turned out to take about 2 hours with all the dramas.
Needless to say I was a wreck when his temp rose so high and he was shaking away. I said to Murray that I'd have to rate this as my 3rd worse day. The 1st was when Luke was diagnosed with leukaemia / the 2nd when the central line failed to go in the first time and they hit an artery and now this. Poor Murray felt helpless being stuck at home with a cold and unable to come in and see us.
There was a chance Luke was going to be taken to Intensive Care so that he could be monitored constantly however it was decided that as his temp was starting to decline they would leave him be but if it climbed again they would come and get him.
I stayed overnight with Luke as his temps were still in the high 39's, by around 2am they came down to 38's and by 4am he was back to a normal 37.2.He was getting interrupted every half hour - hour with his temp getting checked and doctors coming in constantly to check on him. I have just come home quickly to have a shower and freshen up and about to head back in to the hospital. Luke is very very stiff and sore all over - he's had 6 cannulas or attempts at putting cannulas into his hands/wrist and elbow so he is finding it hard to sit up and hold anything in his hands.
I'm sure he is over the worst of it and we have been told that he will need to have a 24 hours period without any fevers and then have 24 hours on oral antibiotics before he can come home. So I dare say it will be at least Monday till he can come home. I'll update after that.
Needless to say I was a wreck when his temp rose so high and he was shaking away. I said to Murray that I'd have to rate this as my 3rd worse day. The 1st was when Luke was diagnosed with leukaemia / the 2nd when the central line failed to go in the first time and they hit an artery and now this. Poor Murray felt helpless being stuck at home with a cold and unable to come in and see us.
There was a chance Luke was going to be taken to Intensive Care so that he could be monitored constantly however it was decided that as his temp was starting to decline they would leave him be but if it climbed again they would come and get him.
I stayed overnight with Luke as his temps were still in the high 39's, by around 2am they came down to 38's and by 4am he was back to a normal 37.2.He was getting interrupted every half hour - hour with his temp getting checked and doctors coming in constantly to check on him. I have just come home quickly to have a shower and freshen up and about to head back in to the hospital. Luke is very very stiff and sore all over - he's had 6 cannulas or attempts at putting cannulas into his hands/wrist and elbow so he is finding it hard to sit up and hold anything in his hands.
I'm sure he is over the worst of it and we have been told that he will need to have a 24 hours period without any fevers and then have 24 hours on oral antibiotics before he can come home. So I dare say it will be at least Monday till he can come home. I'll update after that.
Wednesday 2nd March 2011
Luke finished the last intensive chemo treatment last Thursday. Luke had been neutropenic for a while early last week and was unable to attend uni. His levels came good by mid week which was good as it was decided that now was the time to try and fix Luke's ingrown toenail whilst he was between chemos. He was booked to have a side of his nail taken out on Monday 28th Feb. Unfortunately Luke became neutropenic over the weekend and we had to cancel the toe operation till next Monday.
Luke was fighting with a bit of a runny nose. Amy started the process when she came down with a bad cold last Wednesday and it took her about 5 days to recover. We tried to keep them isolated but that's not exactly easy to enforce. His blood was tested again on Monday and his levels were better however he started getting a fever. He got up to 38.3 degrees and when Luke called they said if he got up to 38.5 to go to emergency. His temperature came down but he started showing a few more signs of having a cold. Yesterday he varied from 37 - 38 degrees but today he reached 38.2 degrees before we were due to go in and see the specialist. When we went in his temperature was 38.5. It was decided that they would take blood cultures to see why he had an infection. Within 30 minutes his temperature spiked at 39.5 degrees. The specialist saw Luke and said that unfortunately they couldn't let him leave with such a temperature and that he would have to be admitted.
So poor Luke is now in hospital till they sort out what is causing the infection. He had a chest x-ray so we'll find out the results tomorrow. Luke will be getting his central line taken out of his chest tomorrow. Yay!!!! It's been in him for over a year and there is a chance that this has become infected. However I'm pretty sure the infection will be due to a cold virus. Murray came down with a cold like a tonne of bricks yesterday afternoon. So he can't go near Luke at the moment. I'm just managing to keep a cold at bay - I've got the sore throat and a bit of a runny nose so I just hope it doesn't hit me in the next few days as one of us needs to go and be with him.
Dad has been sick for over a week now with a cough more than a cold. He went to the doctors the other day and he may have had whooping cough. He's been given some strong antibiotics and cough medicine so hopefully he will get better soon. On the last blog, I mentioned that Mum was going in for exploratory surgery on her bladder. Unfortunately once again the surgery got cancelled and she was rebooked for next Tuesday. She had a bit of a scare today when they called and told her they would have to cancel as they had overbooked. However when she said she'd been cancelled twice before they apologised and said they would get in touch with someone else. So hopefully things will go ahead next week. I just hope she doesn't get sick being around Dad.
So unfortunately the family is a bit isolated at the moment with lots of sickness going on. I'm sure Luke will be fine. It's probably best that he stay in hospital away from Murray at the moment but he hates being in there as it is so boring. It depends what all the tests show however he could be in hospital for anywhere from 2 day to a week. Let's hope it's a short stay. I'll keep you updated with how things progress.
Luke was fighting with a bit of a runny nose. Amy started the process when she came down with a bad cold last Wednesday and it took her about 5 days to recover. We tried to keep them isolated but that's not exactly easy to enforce. His blood was tested again on Monday and his levels were better however he started getting a fever. He got up to 38.3 degrees and when Luke called they said if he got up to 38.5 to go to emergency. His temperature came down but he started showing a few more signs of having a cold. Yesterday he varied from 37 - 38 degrees but today he reached 38.2 degrees before we were due to go in and see the specialist. When we went in his temperature was 38.5. It was decided that they would take blood cultures to see why he had an infection. Within 30 minutes his temperature spiked at 39.5 degrees. The specialist saw Luke and said that unfortunately they couldn't let him leave with such a temperature and that he would have to be admitted.
So poor Luke is now in hospital till they sort out what is causing the infection. He had a chest x-ray so we'll find out the results tomorrow. Luke will be getting his central line taken out of his chest tomorrow. Yay!!!! It's been in him for over a year and there is a chance that this has become infected. However I'm pretty sure the infection will be due to a cold virus. Murray came down with a cold like a tonne of bricks yesterday afternoon. So he can't go near Luke at the moment. I'm just managing to keep a cold at bay - I've got the sore throat and a bit of a runny nose so I just hope it doesn't hit me in the next few days as one of us needs to go and be with him.
Dad has been sick for over a week now with a cough more than a cold. He went to the doctors the other day and he may have had whooping cough. He's been given some strong antibiotics and cough medicine so hopefully he will get better soon. On the last blog, I mentioned that Mum was going in for exploratory surgery on her bladder. Unfortunately once again the surgery got cancelled and she was rebooked for next Tuesday. She had a bit of a scare today when they called and told her they would have to cancel as they had overbooked. However when she said she'd been cancelled twice before they apologised and said they would get in touch with someone else. So hopefully things will go ahead next week. I just hope she doesn't get sick being around Dad.
So unfortunately the family is a bit isolated at the moment with lots of sickness going on. I'm sure Luke will be fine. It's probably best that he stay in hospital away from Murray at the moment but he hates being in there as it is so boring. It depends what all the tests show however he could be in hospital for anywhere from 2 day to a week. Let's hope it's a short stay. I'll keep you updated with how things progress.
Subscribe to:
Posts (Atom)
