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
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.
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.
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