We have had a busy week. Last Friday 19th, Luke had a lumbar puncture under x-ray. It seemed to go quite well. Although Luke still has had a fair bit of pain in his back throughout the week.
He had another lumbar puncture today which didn't go as well. Even though it was under x-ray they still had trouble finding a spot as he has scar tissue and a hematoma in his back which they aren't concerned about. They ended up going into his spinal fluid a bit higher up and it worked okay. He's really stiff again and we are calling him "Mr Shuffles".
They urakinased Luke's central line and it appears to have worked and blood is now coming through the line so that is great news as we keep hearing of so many people getting infections and having to have them taken out.
Luke's been feeling really lethargic this week and I can understand why when we went into hospital on Wednesday. His haemaglobin had dropped to 66. So they arranged to give him 2x blood transfusions and platelets. So what was meant to be a half hour in hospital for an injection at 12.30pm turned out to be 9 hours while we waited for the initial blood test and transfusions. Murray ended up coming and relieving me at 5.30pm as I had a throbbing headache. So the boys walked in at 10pm last night. We were glad that he had the transfusions though as we had to go up to Sydney the next day.
As it turned out today we went in for his lumbar puncture and they took bloods in the morning before the procedure. When we came back they said his levels were still low (77) so once again we had 2 x blood transfusions and platelets. Another long day at the hospital and we emerged 8 hours later.
His blood levels for the past week have been:
Haemaglobin: 20/3 - 95 / 22/3 - 82 / 24/3 - 66 / 26/3 - 77
White Blood Cells: 20/3 - 4.3 / 22/3 - 4.8 / 24/3 - 2.1 / 26/3 - 1.2
Platelets: 20/3 - 118 / 22/3 - 74 / 24/3 - 31 / 26/3 - 22
Neutrophils: 20/3 - 3.4 / 22/3 - 4.35 / 24/3 - 1.35 / 26/3 - 0.53
The latest blood results today also show neutrophils of 0.53 - this means Luke is just about to tip into neutropenia. So he will be prone to picking up infections very easily. So the best advise is that if you are feeling unwell please do not come and visit Luke at the moment.
So now to update you on the visit to Westmead's Cancer Care Clinic to see the Stem Cell Transplant Specialists. What a long day! We left around 9am and got to Westmead at 1pm. We decided rather than have lunch beforehand (we'd had a snack around 11am) that we would should make sure we got parking and knew where to go for our appointment at 1.30pm. We got in their early and filled out all the paperwork. It got to 1.45pm and I asked if they had any idea how far behind the doctors were running and the ladies at reception said they were still making up the file and that the doctor was aware we were there. At about 1.55pm we got sent to Clinic 3 only to find another waiting room! I think it was about 2.30pm that we got into see the specialist. We left Westmead at 3.30pm (after lunch) and got home around 8pm.
So to the outcome of the meeting: After reading some paperwork and asking some questions he then had a general chat to us. It would appear that Luke is not a suitable candidate for a stem cell transplant at this stage. The reason being that he is responding well to chemotherapy and is in remission. As you know Luke needs to stay on chemotherapy for quite a long time to keep him in remission so a transplant would only become a viable option if he relapsed and the disease returned or if the abnormal chromosones returned and were not responding to chemotherapy. However the Professor did make the comment that one reason that makes it difficult for them to determine whether he is suitable for a transplant is because he had an uncommon grouping of abnormal chromosones - meaning they don't have any historical data against which to gauge their decision.
He did say that he would talk to the other professors at their team meeting on Monday to concur with them and that "his people would talk to our people" to advise the conclusion. At this stage the initial prognosis is a good thing as the Professor went through quite a lot of the risks and complications around a stem cell transplant and it's not something that you would want to rush into.
The other thing he said was that when Luke finishes this consolidation chemo round that he would ask Canberra for a bone marrow biopsy sample to be sent to Sydney to run a sensitive test (that can't be done in Canberra) to test for minimal residual disease. This test will show if there are any minor traces of leukaemia still in the bone marrow. If there are any minor traces or he relapses then they will reassess as to whether a stem cell transplant would be needed. So we really are back to a bit of a waiting game to make sure Luke stays in remission after this round of chemo and to see if any traces show on the test they will run in Sydney. This won't be until around early to mid May when this round of chemo finishes.
I'll update you all in a week unless there is something else to tell in the meantime.
We have Mum's sister, Mal, and her husband Les, coming to visit Australia from the UK next Tuesday. I haven't seen Mal since Murray and I went to England in 1991 and the kids have never met them so that will be great to catch up with them next week.
Thursday 18th March 2010
I know it's been a while since the last blog however as Luke has achieved remission and now started the 2nd round of chemo there is not a lot of new information I can tell everyone daily so I've decided I'll put an update in the blog weekly.
We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).
Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.
They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1
His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.
Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.
Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).
He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.
Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.
We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).
Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.
They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1
His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.
Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.
Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).
He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.
Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.
Friday 12th March 2010
Luke started his day with a visit to the hospital for a chemo injection. This injection is subcutaneously under the skin - so they do it in his tummy. It doesn't take long and he said it doesn't really hurt. They have started taking bloods daily again. Luke is fantastic at the moment - it is really a shame that he is going to get chemo which is going to drag him back down again. I imagine based on Luke's blood levels on the first round of chemo, Luke will have a few weeks before he dips back down into neutropenia.
At the moment his levels are:
Haemaglobin 105 / White Cell Count 16.4 / Platelets 147 / Neutrophils 13.98.
After hospital we decided to go via Luke's college to get his timetable. While he is good we thought he could try and attend a few classes next week to see what they are up to. It was good to see him talking to all of his friends during their recess break.
He asked if he could go for a driving lesson in his car today. For those who don't know, just before Xmas Luke bought a Nissan 300zx(or rather part bought - we always had the intention of going halves with him and although he's put some money towards it, plans have changed a bit now and I think we'll be waiting a long time for the rest!) It really wasn't my first choice of a car for a learner however it is a great looking car for a 20 year old car - it's a bright red sports car and it just happened to be an exceptional buy and too good an opportunity to pass by.
He was a bit rusty from not having driven for quite a while but he enjoyed himself.
We went this afternoon to view the "Lanyon Loonies" at the pharmacy participating in the Greatest shave for the Leukaemia Foundation. Well done to Allison, Jayne, Suzi and Scott for their bravery. They looked fantastic!
We decided as Luke was in remission to get some of his friends over and let him have a bit of fun. So tonight, 8 of his good friends came over for pizza, x-box and playing a board game - risk - that they all seem to like. Amy's having a sleep over at her cousins, Murray went to watch the football at his Dad's and I've been in the bedroom watching a movie! It's good to see him laughing and having fun.
Three of his friends turned up with their heads shaved. They took part in the Shave at Tuggeranong College. They all look great - bit different to the long hair I'm used to seeing on them.
Some of Luke's other friends - who are part of "Keeping the Faith" team are having their shave on Sunday. Whilst Sue Baker and Tim - actually fall under the "Finance Social Club Team" are participating in the shave next Friday the 19th.
Tomorrow we are back to the hospital for an injection and we might head to the movies. We're going to make the most of Luke's good health while we can.
At the moment his levels are:
Haemaglobin 105 / White Cell Count 16.4 / Platelets 147 / Neutrophils 13.98.
After hospital we decided to go via Luke's college to get his timetable. While he is good we thought he could try and attend a few classes next week to see what they are up to. It was good to see him talking to all of his friends during their recess break.
He asked if he could go for a driving lesson in his car today. For those who don't know, just before Xmas Luke bought a Nissan 300zx(or rather part bought - we always had the intention of going halves with him and although he's put some money towards it, plans have changed a bit now and I think we'll be waiting a long time for the rest!) It really wasn't my first choice of a car for a learner however it is a great looking car for a 20 year old car - it's a bright red sports car and it just happened to be an exceptional buy and too good an opportunity to pass by.
He was a bit rusty from not having driven for quite a while but he enjoyed himself.
We went this afternoon to view the "Lanyon Loonies" at the pharmacy participating in the Greatest shave for the Leukaemia Foundation. Well done to Allison, Jayne, Suzi and Scott for their bravery. They looked fantastic!
We decided as Luke was in remission to get some of his friends over and let him have a bit of fun. So tonight, 8 of his good friends came over for pizza, x-box and playing a board game - risk - that they all seem to like. Amy's having a sleep over at her cousins, Murray went to watch the football at his Dad's and I've been in the bedroom watching a movie! It's good to see him laughing and having fun.
Three of his friends turned up with their heads shaved. They took part in the Shave at Tuggeranong College. They all look great - bit different to the long hair I'm used to seeing on them.
Some of Luke's other friends - who are part of "Keeping the Faith" team are having their shave on Sunday. Whilst Sue Baker and Tim - actually fall under the "Finance Social Club Team" are participating in the shave next Friday the 19th.
Tomorrow we are back to the hospital for an injection and we might head to the movies. We're going to make the most of Luke's good health while we can.
Wednesday 10th March 2010
Yeah!!!! Good news. Luke is in remission.
The interim report we were given a copy of today says: "Normocellular bone marrow. Features are consistent with remission of the known Acute Lymphoblastic Leukaemia and with an excellent response to recent treatment. Note normal karyotype. No cytogenetic abnormality detected."
Luke also had a follow up CT scan last week. The results of this showed that his lymph nodes have improved significantly. The lymph node under the armpit has decreased from 18mm to 7mm. His hepatosplenomegaly (which is enlargement of the liver and spleen) has also significantly improved. The liver now measures 17cm and the spleen 12cm reduced from 21 and 20cm respectively. Also something that I didn't know until his discharge papers turned up at home yesterday, was that his kidneys had lesions/multiple large soft tissue deposits on both kidneys. However on the latest test these had significantly reduced in number and size.
So good news all round at this stage. Whilst this is the best outcome possible at this point there is still a long way to go. The problem now will be keeping him in remission. We are now back in hospital today to start the 2nd round of chemo treatment - consolidation - which will be a 9 week program. We have not been able to see the specialist today and my main concern was whether we should be starting chemo now or waiting till after our appointment in Sydney on the 25th March with the stem cell transplant specialist. Unfortunately I didn't get this question totally confirmed but both the resident and intern agreed that Dipti was going to contact Sydney and that she confirmed yesterday afternoon that she wanted chemo to commence today.
So here we are - back in our old room 7 for old times sakes. We are not sure whether Luke will only need to stay overnight or for 2 nights depending on how long things take. One of the drugs he is on today is quite strong and he needs to have 3 bags of saline to flush through his system (these take about 8 hours each to run through).
For anyone interested the consolidation phase of chemo will include the following drugs: cyclophosphamide, cytarabine, mercaptopurine, methotrexate, L-asparaginase and vincristine.
This will mean between 4-5 visits to the hospital per week to receive the chemo.
Luke's had a few good days at home and has had a bit more energy. It was my birthday yesterday and the four of us went out to dinner. Murray and I discovered a Malaysian restaurant at the Garran shops that was really yummy - so we went there. Had a really nice meal.
The day before we'd had all the family over for lunch. Luke and I had a cook up in the kitchen and we all had a good day.
The interim report we were given a copy of today says: "Normocellular bone marrow. Features are consistent with remission of the known Acute Lymphoblastic Leukaemia and with an excellent response to recent treatment. Note normal karyotype. No cytogenetic abnormality detected."
Luke also had a follow up CT scan last week. The results of this showed that his lymph nodes have improved significantly. The lymph node under the armpit has decreased from 18mm to 7mm. His hepatosplenomegaly (which is enlargement of the liver and spleen) has also significantly improved. The liver now measures 17cm and the spleen 12cm reduced from 21 and 20cm respectively. Also something that I didn't know until his discharge papers turned up at home yesterday, was that his kidneys had lesions/multiple large soft tissue deposits on both kidneys. However on the latest test these had significantly reduced in number and size.
So good news all round at this stage. Whilst this is the best outcome possible at this point there is still a long way to go. The problem now will be keeping him in remission. We are now back in hospital today to start the 2nd round of chemo treatment - consolidation - which will be a 9 week program. We have not been able to see the specialist today and my main concern was whether we should be starting chemo now or waiting till after our appointment in Sydney on the 25th March with the stem cell transplant specialist. Unfortunately I didn't get this question totally confirmed but both the resident and intern agreed that Dipti was going to contact Sydney and that she confirmed yesterday afternoon that she wanted chemo to commence today.
So here we are - back in our old room 7 for old times sakes. We are not sure whether Luke will only need to stay overnight or for 2 nights depending on how long things take. One of the drugs he is on today is quite strong and he needs to have 3 bags of saline to flush through his system (these take about 8 hours each to run through).
For anyone interested the consolidation phase of chemo will include the following drugs: cyclophosphamide, cytarabine, mercaptopurine, methotrexate, L-asparaginase and vincristine.
This will mean between 4-5 visits to the hospital per week to receive the chemo.
Luke's had a few good days at home and has had a bit more energy. It was my birthday yesterday and the four of us went out to dinner. Murray and I discovered a Malaysian restaurant at the Garran shops that was really yummy - so we went there. Had a really nice meal.
The day before we'd had all the family over for lunch. Luke and I had a cook up in the kitchen and we all had a good day.
Friday 5th March 2010
Just a quick update of where we are up to.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.
He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.
Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.
I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.
So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!
We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!
Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.
He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.
Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.
I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.
So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!
We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!
Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.
Wednesday 3rd March 2010
This blog entry is to publicise the fundraising event that is taking place for The Leukamia foundation during the period 11-13 March. The Leukaemia foundation is the only only national not-for-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. In the short time we have been involved with leukaemia, the foundation has certainly been of assistance to us by way of educating us in the disease and providing lots of information via booklets.
A lot of people have been asking how they can support Luke. I know I've suggested donating blood in the past. It is amazing how many blood products Luke has already needed to get through the first 5 weeks and I'm sure he'll need many more.
However another way to show your support would be to donate to the Leukaemia Foundation's Worlds Greatest Shave fundraising event. Money raised helps support families - especially those in country areas who do not have immediate access to hospitals that treat cancer. We are lucky we are in Canberra however in our case if we do have to go to Westmead hospital for an extended stay, the Leukaemia Foundation provides the accommodation.
They also fund leading research into better treatments and cures for leukaemias.
I know of a few teams that are going to take part in the World's Greatest Shave and I'd like to share their details with you in case you would like to direct a donation to them via the website.
1) Lanyon Loonies - this team is made up of staff members from Lanyon Pharmacy where Luke worked after school and on weekends. The brave team who are going to shave consist of Allison Browne, Jayne Gibson, Alex Smith, Suzi Hughes and Scott Mulholland.
2) Keep the Faith - this team consists of friends of Luke's - the team includes Daniel Sims, Tim Sandeman and Ned Lawson.
3) Canberra Grammar School - Jack Lattimore a friend of Luke's attends this school and the school will be participating in Shave for a cure.
4) Lake Tuggeranong College - where Luke attends. I cannot see them listed on the website as a team however I do know from one of the teachers that a fundraising event will be taking place. So if you go to the college you may want to show your support on the day.
5) Individuals - Tim Baker & his mum, Sue Baker are intending on colouring for a cure. Tim and Luke spent many years together playing cricket for the Junior Tuggeranong Vikings Cricket Club. Again I can't see them listed on the website but if you'd like to support them, I'm sure for all those TVCC people out there, you could contact either Des Baker or Billy Thomson.
I have included the link on the blog to the website. worldsgreatestshave.com
Once on the main page go down to the bottom to a heading sponsor a shaver.
Then search for the team or individuals name. Follow the prompts for your donation - you can remain anonymous if you prefer by ticking the applicable boxes.
All donations are tax deductible.
I really respect everyone taking part in this fundraising. They are braver than me! Luke really appreciates all of the support people have shown in taking part in this event. For your information, Luke's hair is slowly falling out - he has had it shaved shorter all over so that the bits of hair coming out aren't as noticeable. So he totally understands what it means to lose your hair and how brave you are all being. A big thank you to all of you.
A lot of people have been asking how they can support Luke. I know I've suggested donating blood in the past. It is amazing how many blood products Luke has already needed to get through the first 5 weeks and I'm sure he'll need many more.
However another way to show your support would be to donate to the Leukaemia Foundation's Worlds Greatest Shave fundraising event. Money raised helps support families - especially those in country areas who do not have immediate access to hospitals that treat cancer. We are lucky we are in Canberra however in our case if we do have to go to Westmead hospital for an extended stay, the Leukaemia Foundation provides the accommodation.
They also fund leading research into better treatments and cures for leukaemias.
I know of a few teams that are going to take part in the World's Greatest Shave and I'd like to share their details with you in case you would like to direct a donation to them via the website.
1) Lanyon Loonies - this team is made up of staff members from Lanyon Pharmacy where Luke worked after school and on weekends. The brave team who are going to shave consist of Allison Browne, Jayne Gibson, Alex Smith, Suzi Hughes and Scott Mulholland.
2) Keep the Faith - this team consists of friends of Luke's - the team includes Daniel Sims, Tim Sandeman and Ned Lawson.
3) Canberra Grammar School - Jack Lattimore a friend of Luke's attends this school and the school will be participating in Shave for a cure.
4) Lake Tuggeranong College - where Luke attends. I cannot see them listed on the website as a team however I do know from one of the teachers that a fundraising event will be taking place. So if you go to the college you may want to show your support on the day.
5) Individuals - Tim Baker & his mum, Sue Baker are intending on colouring for a cure. Tim and Luke spent many years together playing cricket for the Junior Tuggeranong Vikings Cricket Club. Again I can't see them listed on the website but if you'd like to support them, I'm sure for all those TVCC people out there, you could contact either Des Baker or Billy Thomson.
I have included the link on the blog to the website. worldsgreatestshave.com
Once on the main page go down to the bottom to a heading sponsor a shaver.
Then search for the team or individuals name. Follow the prompts for your donation - you can remain anonymous if you prefer by ticking the applicable boxes.
All donations are tax deductible.
I really respect everyone taking part in this fundraising. They are braver than me! Luke really appreciates all of the support people have shown in taking part in this event. For your information, Luke's hair is slowly falling out - he has had it shaved shorter all over so that the bits of hair coming out aren't as noticeable. So he totally understands what it means to lose your hair and how brave you are all being. A big thank you to all of you.
Tuesday 2nd March 2010
Okay so I've missed a few nights! Sorry about that. I've been busy doing an application for a round of positions at work - not something I really wanted to do given our situation but thought I shouldn't let the opportunity pass me by.
I've also been playing apprentice to the "masterchef". He cooked a lovely stuffed chicken breast wrapped in prosciutto and roast veges. The stuffing was a Philadelphia cream cheese/basil/pine nut/Parmesan cheese. Very yummy!
His Nan, Aunty Nat and Aunty Heidi bought a white chefs shirt (don't know the official term) for the budding chef!!
Murray and I have been playing decorators and cleaners today! Luke's new mattress arrived and we needed to clear out his old bed and also took the opportunity to clean out all of his drawers /storage boxes and wardrobe. What a lot of rubbish! I thought I was a hoarder - but I've got nothing on him! His new bed looks great - a white fake look leather bedhead and base. With all the new linen it really brightens up his room.
Luke had the nurse coming each day to take blood and they still have been having trouble getting it out of the central line straight away. It seems to be taking quite a few saline flushes. Luke went into hospital yesterday to have his last day of chemo treatment for the induction phase. It was a lumbar puncture to check the spinal fluid and then chemo injected into the spinal fluid. It was great to have the first round of treatment finished. Yeah!!
Luke's blood results for the last few days are:
27/2 Haemaglobin 107 / White Cell Count 3.1 / Platelets 220 / Neutrophils 2.58
28/2 Haemaglobin 100 / White Cell Count 2.5 / Platelets 213 / Neutrophils 1.5
1/3 Haemaglobin 97 / White Cell Count 4.2 / Platelets 237 / Neutrophils 3.20
As he has finished chemo the nurse was going to drop back to getting bloods every 2 days - hence no blood results today.
Originally we were told that Luke's bone marrow biopsy was going to be on the 11th March with probably about 3 weeks break from chemo. We then found out the biopsy would be this Thursday instead. Only to have a call from one of the doctors today to say that they wanted to do the biopsy tomorrow instead followed by a CAT scan on Thursday. The results of the biopsy will probably take about 3 - 4 days so we won't know until then if he has achieved remission. So it will be a long weekend waiting anxiously!! They then want to start the next round of chemo next Wednesday, which is a 9 week consolidation chemo phase. So unfortunately for Luke there won't be much of a break. At this stage we are still scheduled to go to Sydney on the 25th March but we are concerned that he will be about 14 days into his chemo and probably quite neutropenic. So they are looking into that a bit further at the moment.
As we came back out of hospital last week Murray and I needed to sit down and work out what we were going to do about work. We can't believe that we lost February and it's been 5 weeks since we found out Luke has leukaemia.
Obviously Murray and I would like to share the care of Luke through the week so I ended up dropping my part time hours back to 2 days per week (Mon/Tue) and Murray will work the other 3 days(Wed - Fri). So Murray starts back at work tomorrow morning and I'll be starting next week. Obviously this will need to remain flexible depending on what's around the corner. We know it's going to be a long road and we are lucky that both our workplaces have been so flexible for us.
I've also been playing apprentice to the "masterchef". He cooked a lovely stuffed chicken breast wrapped in prosciutto and roast veges. The stuffing was a Philadelphia cream cheese/basil/pine nut/Parmesan cheese. Very yummy!
His Nan, Aunty Nat and Aunty Heidi bought a white chefs shirt (don't know the official term) for the budding chef!!
Murray and I have been playing decorators and cleaners today! Luke's new mattress arrived and we needed to clear out his old bed and also took the opportunity to clean out all of his drawers /storage boxes and wardrobe. What a lot of rubbish! I thought I was a hoarder - but I've got nothing on him! His new bed looks great - a white fake look leather bedhead and base. With all the new linen it really brightens up his room.
Luke had the nurse coming each day to take blood and they still have been having trouble getting it out of the central line straight away. It seems to be taking quite a few saline flushes. Luke went into hospital yesterday to have his last day of chemo treatment for the induction phase. It was a lumbar puncture to check the spinal fluid and then chemo injected into the spinal fluid. It was great to have the first round of treatment finished. Yeah!!
Luke's blood results for the last few days are:
27/2 Haemaglobin 107 / White Cell Count 3.1 / Platelets 220 / Neutrophils 2.58
28/2 Haemaglobin 100 / White Cell Count 2.5 / Platelets 213 / Neutrophils 1.5
1/3 Haemaglobin 97 / White Cell Count 4.2 / Platelets 237 / Neutrophils 3.20
As he has finished chemo the nurse was going to drop back to getting bloods every 2 days - hence no blood results today.
Originally we were told that Luke's bone marrow biopsy was going to be on the 11th March with probably about 3 weeks break from chemo. We then found out the biopsy would be this Thursday instead. Only to have a call from one of the doctors today to say that they wanted to do the biopsy tomorrow instead followed by a CAT scan on Thursday. The results of the biopsy will probably take about 3 - 4 days so we won't know until then if he has achieved remission. So it will be a long weekend waiting anxiously!! They then want to start the next round of chemo next Wednesday, which is a 9 week consolidation chemo phase. So unfortunately for Luke there won't be much of a break. At this stage we are still scheduled to go to Sydney on the 25th March but we are concerned that he will be about 14 days into his chemo and probably quite neutropenic. So they are looking into that a bit further at the moment.
As we came back out of hospital last week Murray and I needed to sit down and work out what we were going to do about work. We can't believe that we lost February and it's been 5 weeks since we found out Luke has leukaemia.
Obviously Murray and I would like to share the care of Luke through the week so I ended up dropping my part time hours back to 2 days per week (Mon/Tue) and Murray will work the other 3 days(Wed - Fri). So Murray starts back at work tomorrow morning and I'll be starting next week. Obviously this will need to remain flexible depending on what's around the corner. We know it's going to be a long road and we are lucky that both our workplaces have been so flexible for us.
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