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
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.
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
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........
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
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.
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
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.
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.
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