Great news - Luke is still in remission after the last cycle of chemo.
It's great to know that he is responding so well to the treatment. One of the bone marrow samples went to Sydney where they test for minute traces of leukaemia. Apparently this was all clear. The only test they do not have a result of is a cryogenetics test. This is to see if there are any abnormal chromosones that have returned. This will take a bit longer to get the results of but all indications are that it should also be clear.
So today Luke started the next round of chemo. This cycle will go for 7 weeks. He was due to have a lumbar puncture at 12.30.He has the lumbar punctures under xray now as they had trouble last time due to scar tissue build up. The xray guides them to the correct place in the spine. Murray and Luke got there at 11.45 and when it was time to go down to imaging the chemo drug needed to inject in his spine wasn't ready so they missed that appointment slot. They sat around waiting for a timeslot to become available but later in the afternoon the xray machine broke down. There was then talk that they would do the lumbar puncture manually on the ward as per the early days - but they decided against it. So the plan at this stage is that the lumbar puncture is now booked for 9.30am tomorrow morning under xray (assuming they have fixed the machine!!). The boys ended up walking in the door at 6.30pm as they then had to wait around for his normal chemo drugs via his central line. He is getting vincristine and methotrexate.
I've just remember on the last blog there was mention that we were moving to ward 14A and that posed problems with blood tests and chemo on weekends. As it turned out when we saw the doctor last Thursday she said the decision had gone full circle and that we would be staying on ward 14B in room 22 for chemo and under OOS (Oncology Outreach service). It apparently was too hard to work out the logistics of Luke's protocol around Monday to Friday hours. So it was best to keep him where he was and with what was working.
Time to get to bed .... I'll update you next week.
Wednesday 26th May 2010
Luke had the bone marrow biopsy on Monday and all went smoothly. We probably won't know the results of whether he is still in remission till later in the week/early next week.
Although Luke has been at home since 24 February we have still be classed as an in-patient of ward 14B and fall under OOS (Oncology Outreach service). Therefore we would go into the hospital regularly for chemo treatments and on the days that we didn't need to go into the hospital for treatment, a nurse would come out to our home to take Luke's blood samples.
There is talk that Luke will be discharged tomorrow. Chemo is due to recommence again next Monday 31st May. He will be on an Interim Maintenance I plan for 7 weeks.
There is also talk that for this round of chemo, Luke will be treated as an out-patient and receive treatment in ward 14A. This means we will still go into the hospital for chemo. What will change is the taking of blood. They have initially said that they do not like to take blood on the 14A ward so we would need to go to pathology for blood samples. However in pathology they can't take his blood from his hickmans central line - they would need to jab him in the arm. This doesn't make much sense as he has a fully functioning central line that blood can be taken from rather than turning his arm into a multitude of pin pricks, especially as the majority of times he needs daily bloods. So I will have to discuss this further with the doctors when we go in tomorrow. The only other difference with going to 14A as an out patient is that we will need to pay for Luke's prescription drugs such as his anti fungal and anti viral tablets that he takes daily. Previously these have all been supplied.
Luke has had a good week as his blood levels have all improved considerable and he has a bit more energy and colour. We are making the most of the time that he is out of neutropenia. He has had friends over and we've been out to dinner and the movies. The boys went and saw Ironman 2 and Amy and I went to see When in Rome.
Although Luke has been well enough to go to school this week, we figure there is not much point as he is a term behind the others. It is best for Luke to stay home and make the most of the times when he is well to catch up on the work he has missed. He has been doing a bit of school work (mainly 3D animation which he enjoys!!) I'm hoping he can get the English essay done by the end of this week and then start of some other assessment items.
Amy has been off school sick for the past few days with a bad headache. It seems to be better now.
I had a good day at work yesterday as I found out I had received the promotion up to the next level in the public service. So all the heartache of getting my application in during early March was worthwhile, even though it was the last thing I wanted to do at the time. I must say a big thank you to Mandy, my manager. Without her guidance and support over the last 3 months and especially encouraging me with my application I wouldn't have gotten this result. While I'm at it, I need to say a big thank you to my L&D team and everyone else at work for their continued support. It really makes it enjoyable to go to work and it takes my mind off things for the few days that I am at work.
I'm sure Murray feels the same gratitude towards everyone at his work.
It was Luke's cousin, Emma's, 13th birthday today. So we went over to her place for a lovely dinner. It is also Luke's oldest cousin, Matthew's, 18th birthday this Friday 28th May. Matthew is the oldest child in the Airey family. I have no idea where the years go. Matthew lives in Umina, Gosford - about 4-5 hours from Canberra, so unfortunately we won't get to catch up with him. He knows we are thinking of him though and wish him a very happy birthday!
I will keep you posted as to what happens with discussions with the doctors about this next round of chemo, and his bone marrow biopsy results next week.
Although Luke has been at home since 24 February we have still be classed as an in-patient of ward 14B and fall under OOS (Oncology Outreach service). Therefore we would go into the hospital regularly for chemo treatments and on the days that we didn't need to go into the hospital for treatment, a nurse would come out to our home to take Luke's blood samples.
There is talk that Luke will be discharged tomorrow. Chemo is due to recommence again next Monday 31st May. He will be on an Interim Maintenance I plan for 7 weeks.
There is also talk that for this round of chemo, Luke will be treated as an out-patient and receive treatment in ward 14A. This means we will still go into the hospital for chemo. What will change is the taking of blood. They have initially said that they do not like to take blood on the 14A ward so we would need to go to pathology for blood samples. However in pathology they can't take his blood from his hickmans central line - they would need to jab him in the arm. This doesn't make much sense as he has a fully functioning central line that blood can be taken from rather than turning his arm into a multitude of pin pricks, especially as the majority of times he needs daily bloods. So I will have to discuss this further with the doctors when we go in tomorrow. The only other difference with going to 14A as an out patient is that we will need to pay for Luke's prescription drugs such as his anti fungal and anti viral tablets that he takes daily. Previously these have all been supplied.
Luke has had a good week as his blood levels have all improved considerable and he has a bit more energy and colour. We are making the most of the time that he is out of neutropenia. He has had friends over and we've been out to dinner and the movies. The boys went and saw Ironman 2 and Amy and I went to see When in Rome.
Although Luke has been well enough to go to school this week, we figure there is not much point as he is a term behind the others. It is best for Luke to stay home and make the most of the times when he is well to catch up on the work he has missed. He has been doing a bit of school work (mainly 3D animation which he enjoys!!) I'm hoping he can get the English essay done by the end of this week and then start of some other assessment items.
Amy has been off school sick for the past few days with a bad headache. It seems to be better now.
I had a good day at work yesterday as I found out I had received the promotion up to the next level in the public service. So all the heartache of getting my application in during early March was worthwhile, even though it was the last thing I wanted to do at the time. I must say a big thank you to Mandy, my manager. Without her guidance and support over the last 3 months and especially encouraging me with my application I wouldn't have gotten this result. While I'm at it, I need to say a big thank you to my L&D team and everyone else at work for their continued support. It really makes it enjoyable to go to work and it takes my mind off things for the few days that I am at work.
I'm sure Murray feels the same gratitude towards everyone at his work.
It was Luke's cousin, Emma's, 13th birthday today. So we went over to her place for a lovely dinner. It is also Luke's oldest cousin, Matthew's, 18th birthday this Friday 28th May. Matthew is the oldest child in the Airey family. I have no idea where the years go. Matthew lives in Umina, Gosford - about 4-5 hours from Canberra, so unfortunately we won't get to catch up with him. He knows we are thinking of him though and wish him a very happy birthday!
I will keep you posted as to what happens with discussions with the doctors about this next round of chemo, and his bone marrow biopsy results next week.
Monday 17th May 2010
A very quick update to let you know that the bone marrow biopsy that was scheduled for today has been postponed. Luke's blood levels have not recovered quickly enough to warrant the biopsy today so they are allowing a bit more time. Luke is still neutropenic. I worked out the other day that Luke has been neutropenic for 75 days out of 108 days since he was diagnosed. Breaking that down even further: that's 30 days confined to the hospital upon diagnosis with 19 of those days in neutropenia, followed by 78 days at home with 44 days of hospital visits for various treatments; 56 of those days were in neutropenia! (Neutropenia means he is prone to pick up infections easily and not allowed in public places and needs to watch what he eats - for example: no salads or fresh vegetables - they need to be cooked thoroughly)
The biopsy will now be held on Monday 24th May. We should have the results about 3 days later.
His next round of chemo will probably start on Monday 31st May. This will be a 7 week Interim Maintenance chemo.
Although Luke's bloods haven't recovered totally he certainly has got some colour back and feeling a lot better. He must be feeling better because he's annoying his sister again!!!
It's nice for him to have a bit of a longer break as it will give him chance to do a bit of school work and catch up with friends.
I'll update you all again next week after the bone marrow biopsy.
The biopsy will now be held on Monday 24th May. We should have the results about 3 days later.
His next round of chemo will probably start on Monday 31st May. This will be a 7 week Interim Maintenance chemo.
Although Luke's bloods haven't recovered totally he certainly has got some colour back and feeling a lot better. He must be feeling better because he's annoying his sister again!!!
It's nice for him to have a bit of a longer break as it will give him chance to do a bit of school work and catch up with friends.
I'll update you all again next week after the bone marrow biopsy.
Friday 7th May 2010
Yay!!!!! Luke finished this round of chemo on Wednesday.
During the week he had to have another blood transfusion and an anti-thrombin injection to stop clotting. His blood levels still aren't recovering yet by themselves and he is still neutropenic. It's now been 25 days that he has been prone to infection and when it's best for him to avoid public places.
So now we just need to wait for his blood levels to recover from the chemo. They should start going up soon. The nurse will continue to come daily and take blood samples. He is booked in for a bone marrow biopsy on Monday 17th May and we should get results by the end of that week as to if he has remained in remission. That's the plan. He should then start chemo about 7 - 10 days after the bone marrow biopsy. So all up we are hoping for a nice 2-3 week break from chemo.
Murray and I went to Luke's college today to discuss what is happening with Luke's schooling. He finds it hard to concentrate for long periods and feels really weak. He told me the other day, even though he looks okayish on the outside he feels like an 80 year old on the inside. (I'm sure he doesn't mean any disrespect to anyone near that age but I think it's a good illustration of how he feels).
He has been dabbling in bits and pieces and is ready to do some assessment items. He still hasn't looked at Maths though (don't blame him) so we are planning on getting a tutor to assist him with that. At this stage as all of his subjects are semester subjects he will need to complete at least half the assessment items to get a pro-rata mark. The college has been great and very supportive so we are hopeful that Luke will be able to get through Year 12 okay.
So as there will be nothing to report possibly for a few weeks - I think I'll also have a break from blogging. I'll let you know the outcome of the bone marrow biopsy when we find out.
Happy Mother's Day for Sunday to all the Mum's out there.
During the week he had to have another blood transfusion and an anti-thrombin injection to stop clotting. His blood levels still aren't recovering yet by themselves and he is still neutropenic. It's now been 25 days that he has been prone to infection and when it's best for him to avoid public places.
So now we just need to wait for his blood levels to recover from the chemo. They should start going up soon. The nurse will continue to come daily and take blood samples. He is booked in for a bone marrow biopsy on Monday 17th May and we should get results by the end of that week as to if he has remained in remission. That's the plan. He should then start chemo about 7 - 10 days after the bone marrow biopsy. So all up we are hoping for a nice 2-3 week break from chemo.
Murray and I went to Luke's college today to discuss what is happening with Luke's schooling. He finds it hard to concentrate for long periods and feels really weak. He told me the other day, even though he looks okayish on the outside he feels like an 80 year old on the inside. (I'm sure he doesn't mean any disrespect to anyone near that age but I think it's a good illustration of how he feels).
He has been dabbling in bits and pieces and is ready to do some assessment items. He still hasn't looked at Maths though (don't blame him) so we are planning on getting a tutor to assist him with that. At this stage as all of his subjects are semester subjects he will need to complete at least half the assessment items to get a pro-rata mark. The college has been great and very supportive so we are hopeful that Luke will be able to get through Year 12 okay.
So as there will be nothing to report possibly for a few weeks - I think I'll also have a break from blogging. I'll let you know the outcome of the bone marrow biopsy when we find out.
Happy Mother's Day for Sunday to all the Mum's out there.
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