We've had a good few days at home. Luke is enjoying the freedom of the house. The nurse is coming each day generally around 11am. They do his obs and take blood and phone through his blood results around 4.30pm. Today we had a slight hiccup as Tony couldn't get blood to flow through the central line. He flushed it a few times and said that cells can sometimes congregate internally around the central line and block the line. He had him standing up with his arm out and finally blood started to flow.
When Tony called through the results he said that Luke's fibrogen levels were getting on the low side and that if the level dropped to 1.0 next time round we would need to go into hospital to get the 10 bags of cryoprecipitate.
Luke's results over the last few days are:
25/2 Haemaglobin 116 / White Cell Count 2.1 / Platelets 256 / Neutrophils 1.2
26/2 Haemaglobin 110 / White Cell Count 2.2 / Platelets 243 / Neutrophils 1.8
Someone asked me again the other day what a normal males levels should be so just as a recap:
Haemaglobin 130 -170 / White Cell Count 3.7 - 11 / Platelets 150 - 400 and Neutrophils 2 - 7.5.
As you will see his levels are much higher than they were originally especially the platelets which got as low as 12 and neutrophils which got as low as 0.05. As he has just about finished this chemo round you would expect his blood levels to pick up again.
We ended up taking Luke out quickly this afternoon to buy a bed for him. We had an idea which bed frame we were getting but needed him to try out the mattresses. Sure enough the one's Murray and I had tested were too hard for him. So he's ended up with some whiz bang 7 zone plush mattress! I am really amazed at how easily he is bruising by just lying in bed at night or crossing his ankles while on the recliner.
Well all of Luke's watching cooking shows in hospital (and prior to that really) has finally paid off. Luke made a nice banana cake last night and this evening he made us a really nice pasta dish with chicken, bacon, broccoli, zucchini, herbs in a creamy sauce. I'm impressed! Mind you I'm being the master chef's apprentice doing all the cutting and preparation. Luke's excuse is that he shouldn't cut himself due to his bloods reduced ability to clot. But hey, I won't knock it if he wants to keep on cooking!!!
Luke's hair has been steadily falling out over the past week. His hair was so thick before and it really had thinned out considerably. The fringe that he used to spike up, he recently started patting down to try and hide the thinning. It didn't help that he was due for a haircut anyway so the bits that were falling out were quite long and noticeable. So tonight his Aunty Natty came around and gave him a Number 3 shave all over. It looks pretty good but quite thin. There are no major patches at present as it seems to be an all over thinning.
We have been hearing of quite a lot of people who are going to participate in the Leukaemia Foundations Shave for a cure. It really is a fabulous organisation and the support they give to patients and their carers is amazing. The foundation also funds leading research into better treatments and cures for leukaemias, lymphomas, myeloma and related blood disorders. In one of the next few blogs I will do a bit of advertising for their cause and give you the names of people/teams who are taking part and advise how you might be able to sponsor them. If you are taking part and you don't think I know about it yet please let me know via email so that I can include your details.
Wednesday 24th February 2010
We are all very excited - especially Luke - he is home!!
It will be so nice for him to wander around the house and do things by himself.
Driving home he commented how bright it was - he really hasn't been in sunlight for over four weeks (other than two visits to the courtyard). It's also nice to get fresh air!
Luke is in a good place at the moment - he looks quite well even though he has lost heaps of weight and is quite pale and certainly bruises easily. He slept on his side last night and has two bruised knees where they obviously rubbed.
His next chemo treatment is on Monday for a lumbar puncture. Luke has been released home as an In-patient service of the hospital operated by the Oncology Outreach Service (OOS).Part of being allowed home is that he requires 24 hour care from us and an oncology registered nurse will be coming for a home visit daily at this stage. We need to take Luke to the hospital for scheduled treatments such as the lumbar puncture/bone marrow biopsy and any chemo treatments in the future that cannot be administered in the home.
We found out today that Luke will have his bone marrow biopsy on the 11th March.
As I said before, we really won't know how this round of chemo has gone until the results come back from the biopsy.
Luke currently is not neutropenic so we don't have to be strict with his diet although we will continue to be cautious as his levels fluctuate so quickly.
He has said he is happy to have visitors now that we are home however it might be best to give us a quick call at home 62946172 to confirm that he's okay at the time.
I mentioned Luke was craving a Saigon Roll so when we were discharged at 1pm he made us drive to Tuggeranong to get one for him. I must say I was extremely lucky to get one as when I arrived in the queue (2 people in front of me) the lady making the food started waving at me saying they had sold out. As I started to turn in disappointment the lady in the queue in front of me declared that she didn't have enough money on her and that I could have the last roll. I couldn't believe my luck. Luke would have killed me if I turned up to the car without one!!!
For the record his blood levels are:
23/2 Haemaglobin 109 / White Cell Count 2.6 / Platelets 299 / Neutrophils 1.5
24/2 Haemaglobin 106 / White Cell Count 2.1 / Platelets 252 / Neutrophils 1.29
Leaving the hospital today, although exciting, was a bit scary as we have been armed with a bag full of Luke's drugs with a time schedule of when he needs them. I'm also concerned that most days Luke seemed to have some other sort of drug to counteract something that was wrong with his blood levels. I have been assured that when the nurse takes Luke's blood for the day we will receive a phone call that afternoon with his levels and they will tell us if we need to take him in to get any treatments such as cyroprecipitate or protein fixers etc.
I can't believe how much "stuff" we had at hospital that needed coming home. I took about 4 full bags home yesterday and we ended up with just as many today along with pillows and balloons!
I'm looking forward to our first night at home together again.
It will be so nice for him to wander around the house and do things by himself.
Driving home he commented how bright it was - he really hasn't been in sunlight for over four weeks (other than two visits to the courtyard). It's also nice to get fresh air!
Luke is in a good place at the moment - he looks quite well even though he has lost heaps of weight and is quite pale and certainly bruises easily. He slept on his side last night and has two bruised knees where they obviously rubbed.
His next chemo treatment is on Monday for a lumbar puncture. Luke has been released home as an In-patient service of the hospital operated by the Oncology Outreach Service (OOS).Part of being allowed home is that he requires 24 hour care from us and an oncology registered nurse will be coming for a home visit daily at this stage. We need to take Luke to the hospital for scheduled treatments such as the lumbar puncture/bone marrow biopsy and any chemo treatments in the future that cannot be administered in the home.
We found out today that Luke will have his bone marrow biopsy on the 11th March.
As I said before, we really won't know how this round of chemo has gone until the results come back from the biopsy.
Luke currently is not neutropenic so we don't have to be strict with his diet although we will continue to be cautious as his levels fluctuate so quickly.
He has said he is happy to have visitors now that we are home however it might be best to give us a quick call at home 62946172 to confirm that he's okay at the time.
I mentioned Luke was craving a Saigon Roll so when we were discharged at 1pm he made us drive to Tuggeranong to get one for him. I must say I was extremely lucky to get one as when I arrived in the queue (2 people in front of me) the lady making the food started waving at me saying they had sold out. As I started to turn in disappointment the lady in the queue in front of me declared that she didn't have enough money on her and that I could have the last roll. I couldn't believe my luck. Luke would have killed me if I turned up to the car without one!!!
For the record his blood levels are:
23/2 Haemaglobin 109 / White Cell Count 2.6 / Platelets 299 / Neutrophils 1.5
24/2 Haemaglobin 106 / White Cell Count 2.1 / Platelets 252 / Neutrophils 1.29
Leaving the hospital today, although exciting, was a bit scary as we have been armed with a bag full of Luke's drugs with a time schedule of when he needs them. I'm also concerned that most days Luke seemed to have some other sort of drug to counteract something that was wrong with his blood levels. I have been assured that when the nurse takes Luke's blood for the day we will receive a phone call that afternoon with his levels and they will tell us if we need to take him in to get any treatments such as cyroprecipitate or protein fixers etc.
I can't believe how much "stuff" we had at hospital that needed coming home. I took about 4 full bags home yesterday and we ended up with just as many today along with pillows and balloons!
I'm looking forward to our first night at home together again.
Monday 22nd February 2010
Well after the doom and gloom news we had on Saturday we had some good news today. Luke will be able to come home on Wednesday. Yeah!!!! He has his last chemo via his central line tomorrow. He then has to go back in next Monday to have the last treatment on this induction chemo phase. That will be a lumbar puncture and chemo injected into the spinal fluid. He did wonder what he was going to do in hospital for the days in between treatments. So he was really excited that he will be able to come home.
As I mentioned before, after the last treatment he will then have to wait 1 to 1.5 weeks for his bloods to do their own thing and then go in for a bone marrow biopsy to check if he has achieved remission. So we really won't know much until then.
I've been feeling a bit off since yesterday. A bit of a sore throat that I don't know if it will develop into a cough, or if it is just a mixture of hospital air conditioning, emotional stress or being overtired. What ever it is, Murray and Luke have banned me from the hospital as we can't risk him getting an infection. So I've been in contact constantly through the day on the mobile. It was my night on tonight so Murray will be doing a double shift! In the meantime I'm dosing up on strepsils and drinking lemsips just in case.
Amy didn't go to school today, she is looking a bit run down and we decided last night that we were going to take the phones off the hook and have a catch up on sleep this morning. Certainly felt a bit more refreshed.
We are currently at Heidi & Nev's celebrating Mary's 10th birthday. Had a lovely dinner and the cake looks great!
We went out late this afternoon and bought a new laptop. Luke has been madly researching them over the past few days on the old laptop in the hospital.(Certainly kept him entertained and gave him something to do). Luke has decided he would like to try and keep up with some school work online as he's in Year 12. We needed something with a stronger processor to cope with his IT classes, such as CAD and programming, especially if we do end up in Sydney for 3 months.
We have also decided to get a new Queen size bed for Luke. He currently has a king single bed but he is so tall and really needs to have the space to move around in bed. He was also complaining when he was sick at home for the week before we went to hospital that he could feel springs.(I don't know how as his mattress isn't that old). If we do this we should probably do a mini makeover of his room to make things fit, including new paint job as he's getting a bit old for the bright blue he currently has. So we have our work cut out for us in the next few weeks if that goes ahead.
Luke's blood levels over the past few days are:
21/2 Haemaglobin 105 / White Cell Count 1.9 / Platelets 219 / Neutrophils 0.62
22/2 Haemaglobin 101 / White Cell Count 2.3 / Platelets 258 / Neutrophils 1.06
Luke's platelets have gone through the roof - the nurse joked they might need to take some back soon! This is the first time in a few weeks that Luke hasn't been Neutropenic. Officially this is when neutrophils are .50 and under but in his case they've said under 1.0. He's really hoping this stays that way as he is craving a saigon roll from the Asian Hub!! His friends will know what that is.
I'd imagine with his last dose of chemo this will drop though and he will have to watch what he is eating.
As I mentioned before, after the last treatment he will then have to wait 1 to 1.5 weeks for his bloods to do their own thing and then go in for a bone marrow biopsy to check if he has achieved remission. So we really won't know much until then.
I've been feeling a bit off since yesterday. A bit of a sore throat that I don't know if it will develop into a cough, or if it is just a mixture of hospital air conditioning, emotional stress or being overtired. What ever it is, Murray and Luke have banned me from the hospital as we can't risk him getting an infection. So I've been in contact constantly through the day on the mobile. It was my night on tonight so Murray will be doing a double shift! In the meantime I'm dosing up on strepsils and drinking lemsips just in case.
Amy didn't go to school today, she is looking a bit run down and we decided last night that we were going to take the phones off the hook and have a catch up on sleep this morning. Certainly felt a bit more refreshed.
We are currently at Heidi & Nev's celebrating Mary's 10th birthday. Had a lovely dinner and the cake looks great!
We went out late this afternoon and bought a new laptop. Luke has been madly researching them over the past few days on the old laptop in the hospital.(Certainly kept him entertained and gave him something to do). Luke has decided he would like to try and keep up with some school work online as he's in Year 12. We needed something with a stronger processor to cope with his IT classes, such as CAD and programming, especially if we do end up in Sydney for 3 months.
We have also decided to get a new Queen size bed for Luke. He currently has a king single bed but he is so tall and really needs to have the space to move around in bed. He was also complaining when he was sick at home for the week before we went to hospital that he could feel springs.(I don't know how as his mattress isn't that old). If we do this we should probably do a mini makeover of his room to make things fit, including new paint job as he's getting a bit old for the bright blue he currently has. So we have our work cut out for us in the next few weeks if that goes ahead.
Luke's blood levels over the past few days are:
21/2 Haemaglobin 105 / White Cell Count 1.9 / Platelets 219 / Neutrophils 0.62
22/2 Haemaglobin 101 / White Cell Count 2.3 / Platelets 258 / Neutrophils 1.06
Luke's platelets have gone through the roof - the nurse joked they might need to take some back soon! This is the first time in a few weeks that Luke hasn't been Neutropenic. Officially this is when neutrophils are .50 and under but in his case they've said under 1.0. He's really hoping this stays that way as he is craving a saigon roll from the Asian Hub!! His friends will know what that is.
I'd imagine with his last dose of chemo this will drop though and he will have to watch what he is eating.
Saturday 20th February 2010
Well we had our talk with the Doctor and although I'm glad we got some answers I don't think I was really ready for the responses.
We knew the diagnosis was Acute Lymphoblastic Leukaemia. We asked why Luke was on a high risk protocol and basically he is a high risk case. The reason he is high risk is a combination of his age, gender and most importantly in his case he has abnormal chromosones. (Murray is blaming mutant Airey cells - I think it's all the Elton's fault!!) In all seriousness though we were not aware he had abnormal chromosones and this makes his subtype of leukaemia rarer and puts him at a higher risk. On further reading just now it says that chromosomal changes are only found in leukaemic cells. They are not usually passed down from parent to child (inherited). Instead they tend to be acquired over time. (Don't ask me how that happens - it's times like this I wished I'd paid more attention in biology).
Luke is on a very intensive chemotherapy protocol for about 9 months and then he will go into a maintenance chemo (not as intensive) that could last anywhere from 2 to 3 years. That also was something we weren't aware of.
Luke's currently on a 4 week induction chemotherapy. This will take us to 1 March. The aim is to get Luke into remission. The doctor is very positive based on his blood results so far that this will be achieved. The problem however is keeping him in remission. The abnormal chromosomes will make this harder to achieve.
We will be going home and have 1 to 1.5 weeks before he comes back in for a bone marrow biopsy. This will be the most accurate way of knowing if he has reached remission.
We are going to Westmead Hospital on 25th March to meet the specialists at the Bone Marrow Transplant Service. They will advise whether a stem cell transplant is a viable option for Luke. We are lead to believe it would be a good option as his cells will be wiped out prior to the procedure and new stem cells transplanted. This should get rid of the abnormal chromosones. This will all depend on the results of the bone marrow biopsy, if Amy is a match and when he can fit this in around his chemo schedule. If Amy isn't a match they will need to search for a donor which will take time. There are however risks associated with a transplant but this will all get answered when we see the specialist. What did hit us hard though is that if he does have the stem cell transplant it will mean up to 3 months at Westmead!! (For those people overseas Westmead is a suburb of Sydney - over 3.5 hours away from our house). The Leukaemia Foundation have told us they have 2 bedroom apartments they provide for families that need to stay for extended stays. If this does eventuate it will mean a lot of travelling as Murray and I share looking after Luke and trying to keep Amy in as normal a situation as possible.
So we are a bit shell shocked again today but we just have to take it day by day and stay positive.
Luke has had a better day today - not as lightheaded. His blood pressure has been around 120/40. His blood sugar is also okay. He has had 10 bags of cryoprecipitate for clotting and is currently getting 2 units of blood as his levels have dropped again and looking very pale.
Blood levels today are:
Haemaglobin 80 / White Cell Count 0.9 / Platelets 164 / Neutrophils 0.24.
We knew the diagnosis was Acute Lymphoblastic Leukaemia. We asked why Luke was on a high risk protocol and basically he is a high risk case. The reason he is high risk is a combination of his age, gender and most importantly in his case he has abnormal chromosones. (Murray is blaming mutant Airey cells - I think it's all the Elton's fault!!) In all seriousness though we were not aware he had abnormal chromosones and this makes his subtype of leukaemia rarer and puts him at a higher risk. On further reading just now it says that chromosomal changes are only found in leukaemic cells. They are not usually passed down from parent to child (inherited). Instead they tend to be acquired over time. (Don't ask me how that happens - it's times like this I wished I'd paid more attention in biology).
Luke is on a very intensive chemotherapy protocol for about 9 months and then he will go into a maintenance chemo (not as intensive) that could last anywhere from 2 to 3 years. That also was something we weren't aware of.
Luke's currently on a 4 week induction chemotherapy. This will take us to 1 March. The aim is to get Luke into remission. The doctor is very positive based on his blood results so far that this will be achieved. The problem however is keeping him in remission. The abnormal chromosomes will make this harder to achieve.
We will be going home and have 1 to 1.5 weeks before he comes back in for a bone marrow biopsy. This will be the most accurate way of knowing if he has reached remission.
We are going to Westmead Hospital on 25th March to meet the specialists at the Bone Marrow Transplant Service. They will advise whether a stem cell transplant is a viable option for Luke. We are lead to believe it would be a good option as his cells will be wiped out prior to the procedure and new stem cells transplanted. This should get rid of the abnormal chromosones. This will all depend on the results of the bone marrow biopsy, if Amy is a match and when he can fit this in around his chemo schedule. If Amy isn't a match they will need to search for a donor which will take time. There are however risks associated with a transplant but this will all get answered when we see the specialist. What did hit us hard though is that if he does have the stem cell transplant it will mean up to 3 months at Westmead!! (For those people overseas Westmead is a suburb of Sydney - over 3.5 hours away from our house). The Leukaemia Foundation have told us they have 2 bedroom apartments they provide for families that need to stay for extended stays. If this does eventuate it will mean a lot of travelling as Murray and I share looking after Luke and trying to keep Amy in as normal a situation as possible.
So we are a bit shell shocked again today but we just have to take it day by day and stay positive.
Luke has had a better day today - not as lightheaded. His blood pressure has been around 120/40. His blood sugar is also okay. He has had 10 bags of cryoprecipitate for clotting and is currently getting 2 units of blood as his levels have dropped again and looking very pale.
Blood levels today are:
Haemaglobin 80 / White Cell Count 0.9 / Platelets 164 / Neutrophils 0.24.
Friday 19th February 2010
I've had a few people asking what happened to Thursday's blog? Well there were 2 reasons for not posting an entry. The first was that we needed to recharge the wireless modem on the laptop in the hospital and Murray needed to sort something out with it so he took it home. I therefore didn't have the laptop to do a new posting when I sat down that night. The other reason is that I may need to cut back to every few days depending on what's going on. So don't stress if I skip a day here and there. It just means nothing has really happened so not much to report - that's a good thing!
So what's been happening. Yesterday (Thursday 18th) Luke had a good day. He had a day off from any chemo and a few close friends came in to visit.
Today has been a bit of a different story. Luke has been feeling extremely lightheaded. His blood pressure at 10.30 this morning was 120/20 sat down. The nurse came back in after 20 minutes and said the doctor wanted a reading with him standing up it was 70/30 and he felt like he was going to black out. The doctor has put him back on the drip to push some fluids through him. It is now 8.30pm as I type this and he is onto his 2nd bag of fluids. His blood pressure this afternoon sat down was
120/43. They have also put some sexy white stockings (compression socks) on Luke's legs to assist blood flow and stop any clotting.
Generally his blood sugar levels have settled a bit. They are still low in the morning but he is sitting around 8 in the evening.
He had his "bee sting" chemo today and has another day off treatment tomorrow.
Blood levels are:
18/2 Haemaglobin 87 / White Cell Count 0.8 / Platelets 112 / Neutrophils 0.22
19/2 Haemaglobin 88 / White Cell Count 0.9 / Platelets 140 / Neutrophils 0.26
Murray and I are hoping to speak to Luke's doctor tomorrow morning. We have lot's of questions for her. We had hoped to see her this morning but she didn't come in today. Somehow when she came in on Tuesday & Wednesday for her quick 5 minute visit, Murray or I had slipped out to either cook Luke a snack or go for a walk or something. She chatted to Luke on both occasions and said that after this 28 day induction chemo finishing around 1 March we would be going home for 1 - 1.5 weeks to let Luke's cells do their own thing - before Luke would have a bone marrow biopsy. She also said she had referred his case up to Westmead Hospital (originally I thought it was Royal North Shore) and that a stem cell transplant would happen at some stage!
Luke also heard this afternoon from the haematology co-ordinator that he has an appointment at Westmead Hospital on the 25th March. Again Murray was out of the room - we have such good timing!! So we have no idea if this is a hello kind of meeting or if something is happening with the stem cell at this time. Amy's results won't be back till next week sometime.
I know Luke is the patient and the doctor has every right to talk to him however you would think that as he is still under 18 they would wait for a parent to be present before giving him this sort of information.
So we really have no idea what is going on and hope to have some more information to share tomorrow.
So what's been happening. Yesterday (Thursday 18th) Luke had a good day. He had a day off from any chemo and a few close friends came in to visit.
Today has been a bit of a different story. Luke has been feeling extremely lightheaded. His blood pressure at 10.30 this morning was 120/20 sat down. The nurse came back in after 20 minutes and said the doctor wanted a reading with him standing up it was 70/30 and he felt like he was going to black out. The doctor has put him back on the drip to push some fluids through him. It is now 8.30pm as I type this and he is onto his 2nd bag of fluids. His blood pressure this afternoon sat down was
120/43. They have also put some sexy white stockings (compression socks) on Luke's legs to assist blood flow and stop any clotting.
Generally his blood sugar levels have settled a bit. They are still low in the morning but he is sitting around 8 in the evening.
He had his "bee sting" chemo today and has another day off treatment tomorrow.
Blood levels are:
18/2 Haemaglobin 87 / White Cell Count 0.8 / Platelets 112 / Neutrophils 0.22
19/2 Haemaglobin 88 / White Cell Count 0.9 / Platelets 140 / Neutrophils 0.26
Murray and I are hoping to speak to Luke's doctor tomorrow morning. We have lot's of questions for her. We had hoped to see her this morning but she didn't come in today. Somehow when she came in on Tuesday & Wednesday for her quick 5 minute visit, Murray or I had slipped out to either cook Luke a snack or go for a walk or something. She chatted to Luke on both occasions and said that after this 28 day induction chemo finishing around 1 March we would be going home for 1 - 1.5 weeks to let Luke's cells do their own thing - before Luke would have a bone marrow biopsy. She also said she had referred his case up to Westmead Hospital (originally I thought it was Royal North Shore) and that a stem cell transplant would happen at some stage!
Luke also heard this afternoon from the haematology co-ordinator that he has an appointment at Westmead Hospital on the 25th March. Again Murray was out of the room - we have such good timing!! So we have no idea if this is a hello kind of meeting or if something is happening with the stem cell at this time. Amy's results won't be back till next week sometime.
I know Luke is the patient and the doctor has every right to talk to him however you would think that as he is still under 18 they would wait for a parent to be present before giving him this sort of information.
So we really have no idea what is going on and hope to have some more information to share tomorrow.
Wednesday 17th February 2010
Luke had a pretty good night however he did get woken up at 3am to get blood taken. They need to test it 12 hours after the protein injection. Don't you think the nurses could have timed it a bit better and given him the injection at say 10am so that he could be re-tested at 10pm???? Just a thought!!!!
Luke's blood sugar is good today 5.8 so it would appear that the reduction in the steroid dose has helped. His weight is staying steady at 79.5kg.
His blood levels today are:
Haemaglobin 87 / White Cell Count 0.8 /Platelets 110 /Neutrophils 0.13.
The other day he was close to needing a blood transfusion so it is great to see his body seems to be increasing the haemaglobin and platelets by itself.
He had his "bee sting" chemo today - he had the choice of having it early or later in the day and decided he prefers it later.
He also had 10 bags of cryoprecipitate for blood clotting.
I made him scrambled eggs for breakfast this morning and he was full all morning - so maybe that's how we can fill him up.
Amy and I had an appointment this afternoon with the psychologist. We missed her last week when she came and visited the boys and they told her "you're seeing the wrong person - Mum's the one who needs help!!" We had a nice chat and I'm glad to say I wasn't committed to the psych ward - just yet anyway!!
Murray and I also had an education session with the haematology co-ordinator. She explained some things in simple language and that helped fill in a few blanks for us.
Now we just need to talk to the DR to fill in a few other questions that we have.
Luke's blood sugar is good today 5.8 so it would appear that the reduction in the steroid dose has helped. His weight is staying steady at 79.5kg.
His blood levels today are:
Haemaglobin 87 / White Cell Count 0.8 /Platelets 110 /Neutrophils 0.13.
The other day he was close to needing a blood transfusion so it is great to see his body seems to be increasing the haemaglobin and platelets by itself.
He had his "bee sting" chemo today - he had the choice of having it early or later in the day and decided he prefers it later.
He also had 10 bags of cryoprecipitate for blood clotting.
I made him scrambled eggs for breakfast this morning and he was full all morning - so maybe that's how we can fill him up.
Amy and I had an appointment this afternoon with the psychologist. We missed her last week when she came and visited the boys and they told her "you're seeing the wrong person - Mum's the one who needs help!!" We had a nice chat and I'm glad to say I wasn't committed to the psych ward - just yet anyway!!
Murray and I also had an education session with the haematology co-ordinator. She explained some things in simple language and that helped fill in a few blanks for us.
Now we just need to talk to the DR to fill in a few other questions that we have.
Tuesday 16th February 2010
Luke had a 2am wake up again for his blood sugar check. It was 3 so he had to pop the jelly beans again. They've just check it again now at 9.30pm and his level was 5.8. So all is good.
Luke has his two doses of chemo via the central line this morning. Unfortunately we couldn't get Luke up and about today even for a shower as he was feeling really lightheaded and a dull pain in his head. So he's had a lazy day watching TV and eating non stop. Both grandparents turned up at lunchtime and after his hospital lunch and a toasty cheese sandwich he was still pleading with us for more food!! I really don't know where it is fitting!!! His weight today was 79.1.
His blood levels were:
Haemaglobin 86 / White Cell count 1.0 / Platelets 85 / Neutrophils 0.12
Somehow his own red blood and platelets increased themselves from yesterday so he didn't need a blood transfusion. I have no idea how these levels can change so much from day to day!
One reading they did pick up was low was a type of protein in the blood. So he had to have an injection of something today to fix it.
Luke and I have been sat watching Top Gear tonight and having a good old laugh at them - they are absolute idiots but great entertainment.
I must make mention again of all the wonderful people who are taking part in shave for a cure in March. I've just heard that two more of Luke's friends are taking part. Daniel and Tim. I mentioned the other day Jack and Canberra Grammar and also Alison at Lanyon Pharmacy. I must say though it feels a bit odd/funny at the moment that all these people are willing to loose their hair and at this stage Luke has not lost any and is still not feeling any ill effects from the chemo. I've got everything crossed that this remains the same for the next few weeks for Luke but at the same time we feel guilty for those brave people if Luke doesn't loose his hair. It's not too late to pull out yet!!!
Luke has his two doses of chemo via the central line this morning. Unfortunately we couldn't get Luke up and about today even for a shower as he was feeling really lightheaded and a dull pain in his head. So he's had a lazy day watching TV and eating non stop. Both grandparents turned up at lunchtime and after his hospital lunch and a toasty cheese sandwich he was still pleading with us for more food!! I really don't know where it is fitting!!! His weight today was 79.1.
His blood levels were:
Haemaglobin 86 / White Cell count 1.0 / Platelets 85 / Neutrophils 0.12
Somehow his own red blood and platelets increased themselves from yesterday so he didn't need a blood transfusion. I have no idea how these levels can change so much from day to day!
One reading they did pick up was low was a type of protein in the blood. So he had to have an injection of something today to fix it.
Luke and I have been sat watching Top Gear tonight and having a good old laugh at them - they are absolute idiots but great entertainment.
I must make mention again of all the wonderful people who are taking part in shave for a cure in March. I've just heard that two more of Luke's friends are taking part. Daniel and Tim. I mentioned the other day Jack and Canberra Grammar and also Alison at Lanyon Pharmacy. I must say though it feels a bit odd/funny at the moment that all these people are willing to loose their hair and at this stage Luke has not lost any and is still not feeling any ill effects from the chemo. I've got everything crossed that this remains the same for the next few weeks for Luke but at the same time we feel guilty for those brave people if Luke doesn't loose his hair. It's not too late to pull out yet!!!
Monday 15th February 2010
Luke is getting really used to the disjointed sleep. He got woken up at 2.30am with the nurse wanting to check Luke's blood sugar level. It was 3 which is very low. Should be I believe between 5-7. So the nurse asked him to have a cup of juice or choc or lollies. I ended up grabbing about 5 jelly beans for him. Not quite what you expect to eat at 2.30 in the morning. The gang at the pharmacy where Luke works will get a laugh at this as he was always buying the pharmacy jelly beans!!
They tested his blood sugar again at 11am and it was 5.9 - so that was good. It normally climbs by the end of the day so we'll see how it goes.
He had a day off from chemo today but had to go and have a chest x-ray. He has this once a week. We had a visit from the dietician today and we went through a long list of questions with her about what he can and can't eat when he is neutropenic. He has been neutropenic for 6 days now - we know he is neutropenic when his neutrophil level drops below .50 - This means he is more prone to pick up infections from other people and really needs to stay within the limits of what he can/can't eat to avoid picking up salmonella poisoning.
His levels today were:
Haemaglobin 80 /White Cell Count 0.8 / Platelets 58 / Neutrophils 0.05
Murray and I went for a meeting at Lake Tuggeranong College today to discuss the options available for Luke. They were very understanding and informative and said they would do whatever they could for Luke. We have asked for his individual teachers to contact us with options of being able to do his work online at times when he will be unable to attend college (at this point we have no idea how often this will be) - so we will wait and see what happens.
Luke also had a visit from the physio. They suggested Luke visit the gym downstairs (if he ventures out of the acute care ward while he is neutropenic he needs to wear a mask) so he wasn't too keen on the idea. There is an exercise bike on the ward so we may have to get him on that. She suggested that he needs to get up and walking around and exercising. He must have listened to her because when Murray and I came back from the college he had managed to walk down to the kitchen at the other end of the main ward (with his mask on) to cook himself a wokka(noodle) box in the microwave. It's amazing how food can motivate you to do something!!
They tested his blood sugar again at 11am and it was 5.9 - so that was good. It normally climbs by the end of the day so we'll see how it goes.
He had a day off from chemo today but had to go and have a chest x-ray. He has this once a week. We had a visit from the dietician today and we went through a long list of questions with her about what he can and can't eat when he is neutropenic. He has been neutropenic for 6 days now - we know he is neutropenic when his neutrophil level drops below .50 - This means he is more prone to pick up infections from other people and really needs to stay within the limits of what he can/can't eat to avoid picking up salmonella poisoning.
His levels today were:
Haemaglobin 80 /White Cell Count 0.8 / Platelets 58 / Neutrophils 0.05
Murray and I went for a meeting at Lake Tuggeranong College today to discuss the options available for Luke. They were very understanding and informative and said they would do whatever they could for Luke. We have asked for his individual teachers to contact us with options of being able to do his work online at times when he will be unable to attend college (at this point we have no idea how often this will be) - so we will wait and see what happens.
Luke also had a visit from the physio. They suggested Luke visit the gym downstairs (if he ventures out of the acute care ward while he is neutropenic he needs to wear a mask) so he wasn't too keen on the idea. There is an exercise bike on the ward so we may have to get him on that. She suggested that he needs to get up and walking around and exercising. He must have listened to her because when Murray and I came back from the college he had managed to walk down to the kitchen at the other end of the main ward (with his mask on) to cook himself a wokka(noodle) box in the microwave. It's amazing how food can motivate you to do something!!
Sunday 14th February 2010
Luke sat watching Star Wars last night and after falling asleep got woken up at 12.30 and 2am for observations. It was a nurse that hasn't worked night shift before and she turned the light on to do everything. Luke wasn't too impressed. The fire alarm went off again this morning at 5.30am but only for a minute this time. Blood wasn't taken till 7am with the morning obs.
They are a little concerned about his blood sugar levels. This morning they were 2.9 then 10 at 10.30am. By the evening they generally climb again. A normal blood sugar is around 5 - 7.5. We are pretty sure this is to do with the steroids he is taking but they are still looking carefully into this.
We spent the morning watching the winter Olympics.
His weight today was 79.0 so climbing slowly.
He had his "bee sting" injection just as Grandma & Granddad turned up with lunch. He ate his hospital lunch and a toasty sandwich. This afternoon he had 10 bags of cryoprecipitate for clotting as obviously this level was down again.
Blood levels today:
Haemaglobin 83 / White Cell Count 0.8 / Platelets 48 / Neutrophils 0.13
Nanny bought in our dinner tonight and Luke ended up having some yummy scones, jam and cream for his dessert. We are now settling down for a night of TV.
They are a little concerned about his blood sugar levels. This morning they were 2.9 then 10 at 10.30am. By the evening they generally climb again. A normal blood sugar is around 5 - 7.5. We are pretty sure this is to do with the steroids he is taking but they are still looking carefully into this.
We spent the morning watching the winter Olympics.
His weight today was 79.0 so climbing slowly.
He had his "bee sting" injection just as Grandma & Granddad turned up with lunch. He ate his hospital lunch and a toasty sandwich. This afternoon he had 10 bags of cryoprecipitate for clotting as obviously this level was down again.
Blood levels today:
Haemaglobin 83 / White Cell Count 0.8 / Platelets 48 / Neutrophils 0.13
Nanny bought in our dinner tonight and Luke ended up having some yummy scones, jam and cream for his dessert. We are now settling down for a night of TV.
Saturday 13th February 2010
Well Murray, Amy and I ended up going out for dinner last night and Luke convinced us to go home for a decent nights sleep while he was feeling okay and not having any treatment. Shame it didn't work as Murray and I didn't have a very good sleep and had the weirdest dreams all centred around looking after Luke - we ended up having a nice little conversation!!! Luke on the other hand seemed to have a lovely peaceful night with no one to nag him. Murray went in first thing this morning.
I really don't have much to report. Luke had a day without chemo today and ate all day long. I really don't know where he is putting it. He had cereal and vegemite on bread this morning. Lunch consisted of pizza and scrambled eggs (strange combination I know but on the hospital menu he wasn't sure what the pizza would turn out to be so he thought he'd better put in a special order of scrambled eggs from a special neutropenic list he's been supplied) / then Nanny brought in Salmon mornay and baked potato and a bread roll. His afternoon snack was hot chips from the cafeteria that Murray went and asked to be freshly cooked (as hot food has to be hot - not sat festering in a tray). Then dinner was roast pork, potato and vegies followed by a Wokka noodle box (that he has mad cravings for at the moment).
He is putting weight back on and is currently 79.1kg.
Luke started watching the Winter Olympics - opening ceremony. I guess that will be one benefit of sitting in front of a hospital TV during the day!!
His blood levels are:
Haemaglobin 94 / White Cell count 0.9 / Platelets 53 and Neutrophils the weekend staff didn't count.
I really don't have much to report. Luke had a day without chemo today and ate all day long. I really don't know where he is putting it. He had cereal and vegemite on bread this morning. Lunch consisted of pizza and scrambled eggs (strange combination I know but on the hospital menu he wasn't sure what the pizza would turn out to be so he thought he'd better put in a special order of scrambled eggs from a special neutropenic list he's been supplied) / then Nanny brought in Salmon mornay and baked potato and a bread roll. His afternoon snack was hot chips from the cafeteria that Murray went and asked to be freshly cooked (as hot food has to be hot - not sat festering in a tray). Then dinner was roast pork, potato and vegies followed by a Wokka noodle box (that he has mad cravings for at the moment).
He is putting weight back on and is currently 79.1kg.
Luke started watching the Winter Olympics - opening ceremony. I guess that will be one benefit of sitting in front of a hospital TV during the day!!
His blood levels are:
Haemaglobin 94 / White Cell count 0.9 / Platelets 53 and Neutrophils the weekend staff didn't count.
Friday 12th February 2010
Luke and Murray had a bit of a disjointed night with Luke having to have blood taken at 1am. This was a blood test that was needed 12 hours after the injection to treat the protein in the blood. He had another usual blood test at 6am. The doctor came in this morning and said that the test showed an abnormal result that could have been caused by contamination in the line (the stuff they use to clean the central line) and this could have affected the results. They took more blood at around 11am. I've just spoken to the intern and he said this test came back fine. However it did show that the fibrinogen level was on the low side again and they will give him 10 more bags of cryoprecipitate tonight (clotting agent).
The other problem I mentioned is that Luke's blood sugar level was 19 yesterday. It was 3 this morning and they just checked again at 5pm and it was 16. So it must be the prednisolone causing the problem. Not quite sure what they are going to do about this at the moment.
Luke continues to say he is lightheaded when he stands up. They have taken his blood pressure a few times lying down then standing up and it the range immediately changes by 30 and his pulse is racing. They are going to keep their eye on this.
His appetite is going strong and he put on a kilo today 78.4kg.
Luke had his "bee sting" injection at around 4pm. He must be getting used to it because it's not being as painful.
Blood levels today - not much change from yesterday:
Haemaglobin - 98 / White Cell Count - 0.8 / Platelets 48 / Neutrophils 0.31
Not sure if I mentioned earlier but Luke has had a blocked left ear for about 5 days. They had been trying to soften any wax with olive oil. They decided to call in an ear specialist today and he suctioned out the wax. He ended up having quite a bit of wax in both ears. He can hear us now - and I thought it was just selective hearing!!!
Murray, Amy and I are thinking of heading off for a dinner out somewhere tonight - once we get Luke settled after his dinner. Depending on how he is going we may all end up going home for a good nights sleep in our own bed and one of us will come back first thing in the morning.
The other problem I mentioned is that Luke's blood sugar level was 19 yesterday. It was 3 this morning and they just checked again at 5pm and it was 16. So it must be the prednisolone causing the problem. Not quite sure what they are going to do about this at the moment.
Luke continues to say he is lightheaded when he stands up. They have taken his blood pressure a few times lying down then standing up and it the range immediately changes by 30 and his pulse is racing. They are going to keep their eye on this.
His appetite is going strong and he put on a kilo today 78.4kg.
Luke had his "bee sting" injection at around 4pm. He must be getting used to it because it's not being as painful.
Blood levels today - not much change from yesterday:
Haemaglobin - 98 / White Cell Count - 0.8 / Platelets 48 / Neutrophils 0.31
Not sure if I mentioned earlier but Luke has had a blocked left ear for about 5 days. They had been trying to soften any wax with olive oil. They decided to call in an ear specialist today and he suctioned out the wax. He ended up having quite a bit of wax in both ears. He can hear us now - and I thought it was just selective hearing!!!
Murray, Amy and I are thinking of heading off for a dinner out somewhere tonight - once we get Luke settled after his dinner. Depending on how he is going we may all end up going home for a good nights sleep in our own bed and one of us will come back first thing in the morning.
Thursday 11th February 2010
Luke and I had a very disruptive night's sleep last night. The normal time that Luke seems to be getting to sleep is around 11.30pm. I've tried coaxing him to get to sleep earlier and that he must be tired but he says he isn't. Admittedly the nurse didn't wake him up to take his temperature at the normal 2am which was a godsend however the fire alarm went off at 4.45am and sounded for about 10 minutes. Very loud!! It turned out to be a false alarm in the radiation and oncology area downstairs. Then he had his usual 6am blood taking and 7.30am breakfast and tablet run at 8am.
Luke had a day off from chemo which was great. However he did not escape getting pumped with drugs. It seems that a blood test showed the protein in his blood to be sitting at 80. When he came in his level was 120. Dr Dipti came around and said that they would start treating this now as if the level drops below 60 he has a high risk of developing blood clots that can travel around the body and obviously what we don't want is a clot developing in or going to the brain.
The other problem he has at the moment is his sugar levels are at 19. I can't remember what a normal level should be (I know it was something with a single digit) so they are concerned about that and if it doesn't settle down he will need to have insulin. He has been having a few lollies and quite a bit of apple juice so we'll try and limit this to see if it has any impact. They have said that the prednisone (cortico steroids) that he is on do cause your blood sugar to increase and they have decided to decrease this daily dosage a bit.
Blood levels for today:
haemoglobin 100 /white cell count 0.8 /platelets 46 /neutrophils 0.30
He is still eating well and his weight has remained stable. However he is getting really light headed and is very weak when he walks to the toilet and shower. We have been trying to get him walking around but he hates the masks he has to wear when he leaves the acute ward (due to him being neutropenic - subject to picking up infections). We need to get him up and moving so that his muscles don't deteriorate too much as well as to avoid blood clots. Having said all of this he actually looks pretty good in himself - nowhere near as pale as he was a week ago.
I think I've hit the wall today as I am really tired and feeling a bit off - so I stayed clear of Luke this afternoon/evening when Amy and I delivered Murray's dinner. I'm about to go and have a soak in the bath and have an early night.
Luke had a day off from chemo which was great. However he did not escape getting pumped with drugs. It seems that a blood test showed the protein in his blood to be sitting at 80. When he came in his level was 120. Dr Dipti came around and said that they would start treating this now as if the level drops below 60 he has a high risk of developing blood clots that can travel around the body and obviously what we don't want is a clot developing in or going to the brain.
The other problem he has at the moment is his sugar levels are at 19. I can't remember what a normal level should be (I know it was something with a single digit) so they are concerned about that and if it doesn't settle down he will need to have insulin. He has been having a few lollies and quite a bit of apple juice so we'll try and limit this to see if it has any impact. They have said that the prednisone (cortico steroids) that he is on do cause your blood sugar to increase and they have decided to decrease this daily dosage a bit.
Blood levels for today:
haemoglobin 100 /white cell count 0.8 /platelets 46 /neutrophils 0.30
He is still eating well and his weight has remained stable. However he is getting really light headed and is very weak when he walks to the toilet and shower. We have been trying to get him walking around but he hates the masks he has to wear when he leaves the acute ward (due to him being neutropenic - subject to picking up infections). We need to get him up and moving so that his muscles don't deteriorate too much as well as to avoid blood clots. Having said all of this he actually looks pretty good in himself - nowhere near as pale as he was a week ago.
I think I've hit the wall today as I am really tired and feeling a bit off - so I stayed clear of Luke this afternoon/evening when Amy and I delivered Murray's dinner. I'm about to go and have a soak in the bath and have an early night.
Wednesday 10th February 2010
Well I’m having trouble with the internet connections at hospital tonight – can’t seem to stay on the blog without it dropping out. So I'll make this quick while I have a connection.
Not much to report today. Luke had a good day – eating plenty. Luke had 10 further bags of cryoprecipitate today – to help with clotting. He then had his “bee sting” injection of chemo into his backside around 5.30pm this afternoon. He must be getting used to it because it isn’t hurting as much or as long. Luke thinks this depends on how slowly the nurses inject it – the slower the better.
Not much else happened today. Luke has spent the afternoon watching cooking shows. He loves watching them – always has. Shame he never had any inclination to cook any of the creations at home!!!
Lukes’ blood levels today were:
Haemaglobin 103 / White Cell Count 0.9 / Platelets 40 / Neutrophils 0.45. He has dipped into being neutropenic today (under .50) so he needs to pay particular attention to what he’s eating and he is more prone to pick up infections from any visitors if they are unwell.
A few people have asked when Amy’s blood test results will come back to see if she is a match. I asked today and got told it would be 2 weeks as they do quite intensive testing on the blood in Sydney.
Not much to report today. Luke had a good day – eating plenty. Luke had 10 further bags of cryoprecipitate today – to help with clotting. He then had his “bee sting” injection of chemo into his backside around 5.30pm this afternoon. He must be getting used to it because it isn’t hurting as much or as long. Luke thinks this depends on how slowly the nurses inject it – the slower the better.
Not much else happened today. Luke has spent the afternoon watching cooking shows. He loves watching them – always has. Shame he never had any inclination to cook any of the creations at home!!!
Lukes’ blood levels today were:
Haemaglobin 103 / White Cell Count 0.9 / Platelets 40 / Neutrophils 0.45. He has dipped into being neutropenic today (under .50) so he needs to pay particular attention to what he’s eating and he is more prone to pick up infections from any visitors if they are unwell.
A few people have asked when Amy’s blood test results will come back to see if she is a match. I asked today and got told it would be 2 weeks as they do quite intensive testing on the blood in Sydney.
Tuesday 9th February 2010
Luke had chemo today which involved 2 drugs being dispensed through his central line. All went well. If you could pick a chemo treatment this would have to be the best day of drug taking - no pills or needles.
Having said no pills - he still had his usual large dose of steroids etc.
Luke has amazed us with the amount of food he is eating! He seems to be craving salt. Today he ate 4 pieces of toast for breakfast / snitzel and veg was the hospital lunch and a cheesymite scroll from Bakers Delight / Dinner -he wasn't keen on the hospital Soy Honey Chicken so he asked for a Wokka noodle box which he devoured followed by a huge plate of meat casserole, mashed potatoes and vegies that Grandma had made for our dinner. Not to mention the endless amount of cheese and biscuits he is eating as snacks / chocolate mooves / apple icy cups.
The dietician visited today and said if he wants to eat let him eat. She said a normal healthy boy of his age and original weight required 11400 kilojoules a day / 3000 calories. Luke thought that as he was eating well he didn't need to have the supplementary Ensure drink however she advised as he has lost a lot of weight he should be having 1 or 2 a day.
Can't remember if I mentioned that Luke had 2 blood transfusions yesterday evening. They had said that if his levels got around 80 that they would boost him up.
He also had a bag of platelets and today had a further 10 bags of cryopresipitate.
I got told off today for not listed Luke's blood levels yesterday so here they both are:
Haemaglobin White Cell Count Platelets Neutrophils
8/2 81 1.2 25 0.53
9/2 114 2.0 52 1.06
Although such wild fluctuations they are all to be expected.
It's lovely to read that some people are going in to donate blood. A special mention to Mary-Anne our neighbour who has the same A RhD Negative blood type - thankyou for your kind words.
It really is such a wonderful gift to give someone and your donation could save up to 3 lives. I would donate if I could but unfortunately I have a heart problem (mitral valve regurgitation) and the Red Cross rejected me when I tried a few years ago!
Also amazing is Alison - one of the full time staff members at Lanyon Pharmacy where Luke worked casually. She will be participating in Shave for a cure in March. I'll have to double check the date in March on the poster at the pharmacy. I'm sure any donations to her cause would be greatly appreciated.
Having said no pills - he still had his usual large dose of steroids etc.
Luke has amazed us with the amount of food he is eating! He seems to be craving salt. Today he ate 4 pieces of toast for breakfast / snitzel and veg was the hospital lunch and a cheesymite scroll from Bakers Delight / Dinner -he wasn't keen on the hospital Soy Honey Chicken so he asked for a Wokka noodle box which he devoured followed by a huge plate of meat casserole, mashed potatoes and vegies that Grandma had made for our dinner. Not to mention the endless amount of cheese and biscuits he is eating as snacks / chocolate mooves / apple icy cups.
The dietician visited today and said if he wants to eat let him eat. She said a normal healthy boy of his age and original weight required 11400 kilojoules a day / 3000 calories. Luke thought that as he was eating well he didn't need to have the supplementary Ensure drink however she advised as he has lost a lot of weight he should be having 1 or 2 a day.
Can't remember if I mentioned that Luke had 2 blood transfusions yesterday evening. They had said that if his levels got around 80 that they would boost him up.
He also had a bag of platelets and today had a further 10 bags of cryopresipitate.
I got told off today for not listed Luke's blood levels yesterday so here they both are:
Haemaglobin White Cell Count Platelets Neutrophils
8/2 81 1.2 25 0.53
9/2 114 2.0 52 1.06
Although such wild fluctuations they are all to be expected.
It's lovely to read that some people are going in to donate blood. A special mention to Mary-Anne our neighbour who has the same A RhD Negative blood type - thankyou for your kind words.
It really is such a wonderful gift to give someone and your donation could save up to 3 lives. I would donate if I could but unfortunately I have a heart problem (mitral valve regurgitation) and the Red Cross rejected me when I tried a few years ago!
Also amazing is Alison - one of the full time staff members at Lanyon Pharmacy where Luke worked casually. She will be participating in Shave for a cure in March. I'll have to double check the date in March on the poster at the pharmacy. I'm sure any donations to her cause would be greatly appreciated.
Monday 8th February 2010
Luke had a false start this morning and got told his lumbar puncture was going to be at 8am. The nurse soon came back and said she got it wrong and it would be in the afternoon. It turned out to be at 4pm. I'm sure I've said this before but can't remember - the reason he has lumbar punctures is to take a sample of the spinal fluid and at the same time they inject chemo to make sure there are no traces of leukaemia cells in the spinal cord that can affect the brain. I got a little concerned when the intern was having a go and couldn't seem to find the right spot. I know everyone has to start somewhere but preferably not on my boy. He tried for quite a while and the resident ended up jumping in to do the procedure.
It's good to see Luke's on the ball. A nurse that we haven't seen before brought in his medicine this morning and Luke commented that there were only 4 steroid tablets instead of 8. She went away and checked and then came back and said "good thing you checked". So he got his correct dose in the end.
Luke also had a chest x-ray today - he was told he will get one of these once a week just to make sure there is no infection.
I had to pick up Amy from school at lunchtime today. She had to come to the hospital and have some blood taken for testing that will be sent up to Sydney. The doctors want to see if Amy would be a possible stem cell transplant donor for Luke. I'm not sure how long the test results take to come back. Amy has said she will do anything for Luke to help him get better however she hates needles and said if anything goes ahead she will need to be knocked out!!
Luke has just had the dressing changed on his central line site. It's a good thing he doesn't have a hairy chest! Mind you I can still see in his face that it would be like having a wax done!
I was talking with Luke yesterday about "stuff" and said to him that he hasn't read anything about his leukaemia or asked any questions whereas I'm trying to find out everything I can. He put things into perspective for me and said "We know what I have, the doctors have told us how they are going to treat it and they know what they are doing, so we've just got to accept it and get on with it."
I think this speaks volumes about Luke's character and it gives me great confidence that he will have the strength and determination to fight this.
I just want to make special mention of Luke's old Tuggeranong cricket team. Luke played with them for 5 years and most of the team stayed together over the years. Billy and Des have passed on details of Luke's situation to his old team mates and we/Luke really appreciate the messages of support he has received.
It's good to see Luke's on the ball. A nurse that we haven't seen before brought in his medicine this morning and Luke commented that there were only 4 steroid tablets instead of 8. She went away and checked and then came back and said "good thing you checked". So he got his correct dose in the end.
Luke also had a chest x-ray today - he was told he will get one of these once a week just to make sure there is no infection.
I had to pick up Amy from school at lunchtime today. She had to come to the hospital and have some blood taken for testing that will be sent up to Sydney. The doctors want to see if Amy would be a possible stem cell transplant donor for Luke. I'm not sure how long the test results take to come back. Amy has said she will do anything for Luke to help him get better however she hates needles and said if anything goes ahead she will need to be knocked out!!
Luke has just had the dressing changed on his central line site. It's a good thing he doesn't have a hairy chest! Mind you I can still see in his face that it would be like having a wax done!
I was talking with Luke yesterday about "stuff" and said to him that he hasn't read anything about his leukaemia or asked any questions whereas I'm trying to find out everything I can. He put things into perspective for me and said "We know what I have, the doctors have told us how they are going to treat it and they know what they are doing, so we've just got to accept it and get on with it."
I think this speaks volumes about Luke's character and it gives me great confidence that he will have the strength and determination to fight this.
I just want to make special mention of Luke's old Tuggeranong cricket team. Luke played with them for 5 years and most of the team stayed together over the years. Billy and Des have passed on details of Luke's situation to his old team mates and we/Luke really appreciate the messages of support he has received.
Sunday 7th February 2010
Luke ended up watching Star Wars last night till 12.15am. We went straight to sleep and he got interrupted for his temperature at 2am and then at 6am the nurses barged in and said "good morning Luke - time for blood!" He seriously thought about telling them where to go! We then went straight back to sleep and got woken up at 7.45am with the breakfast tray coming in and his oxycontin tablet (which is his 12 hour slow release pain killer).
Not long after that 20 tablets turned up. It turned out that he had to go back to the 8 tablet dose of prednisone (cortico steroids) instead of getting Dexamethazone via the central line. When I queried why I was told that the prednisone was the official protocol drug and they were just giving him a break from the tablets. He says they taste really rotten so he has devised a way to take a mouthful of apple juice, throw in the tablet and quickly take some more apple juice to swallow it down with - this seemed to work quite well this morning. The other tablets were the regular anti fungal, anti viral, antibiotics, panadol and some sort of sodium bicarbonate tablets to treat the acidity in his urine.
He's eating really well at the moment and keeps asking for more snacks in between meals. Having said that he got weighed today and he has still lost weight - currently 77.5kg.
His morning blood tests came back with levels of:
Haemaglobin 87 / White Cell Count 1.0 / Platelets 28 / Neutrophils 0.80. All down from yesterday. They came in around 11am and said that he needed 10 bags of cryoprecipitate. This is to treat fibrinogen deficiency (clotting agent). Cryoprecipitate is harvested from plasma.
Grandma & Grandad brought in lunch today as Luke had a craving for a crunchy bacon butty (sandwich for those who are not up with English sayings!!)
So we reheated the bacon for him and he devoured it in seconds then asked for the bacon scraps after we had eaten our lunch!
Amy and I left the boys for the afternoon and when we got home I had a call from Murray saying Luke had just received a "bee sting" - L-Asparaginase injection. We had diarised his chemo days off his protocol document and thought he had the weekend off but they assured us they were showing this injection as today. So we will have to check with Dr Dipti that we have been given a copy of the right protocol. He had a nurse who administered this injection nice and slowly and it didn't hurt as much.
I believe he has a lumbar puncture tomorrow however we need to check the details with the Dr.
Not long after that 20 tablets turned up. It turned out that he had to go back to the 8 tablet dose of prednisone (cortico steroids) instead of getting Dexamethazone via the central line. When I queried why I was told that the prednisone was the official protocol drug and they were just giving him a break from the tablets. He says they taste really rotten so he has devised a way to take a mouthful of apple juice, throw in the tablet and quickly take some more apple juice to swallow it down with - this seemed to work quite well this morning. The other tablets were the regular anti fungal, anti viral, antibiotics, panadol and some sort of sodium bicarbonate tablets to treat the acidity in his urine.
He's eating really well at the moment and keeps asking for more snacks in between meals. Having said that he got weighed today and he has still lost weight - currently 77.5kg.
His morning blood tests came back with levels of:
Haemaglobin 87 / White Cell Count 1.0 / Platelets 28 / Neutrophils 0.80. All down from yesterday. They came in around 11am and said that he needed 10 bags of cryoprecipitate. This is to treat fibrinogen deficiency (clotting agent). Cryoprecipitate is harvested from plasma.
Grandma & Grandad brought in lunch today as Luke had a craving for a crunchy bacon butty (sandwich for those who are not up with English sayings!!)
So we reheated the bacon for him and he devoured it in seconds then asked for the bacon scraps after we had eaten our lunch!
Amy and I left the boys for the afternoon and when we got home I had a call from Murray saying Luke had just received a "bee sting" - L-Asparaginase injection. We had diarised his chemo days off his protocol document and thought he had the weekend off but they assured us they were showing this injection as today. So we will have to check with Dr Dipti that we have been given a copy of the right protocol. He had a nurse who administered this injection nice and slowly and it didn't hurt as much.
I believe he has a lumbar puncture tomorrow however we need to check the details with the Dr.
Saturday 6th February 2010
Luke and Murray had an uneventful night sleeping for about 6 hours. Amy and I also had a nice sleep in this morning.
They haven't given Luke any Maxalon for nausea today and he feels great and boy has he got his appetite back with a vengeance today!!! He ate all his breakfast/lunch / snacks and dinner. He then had about 3 pieces of homemade pizza that his Aunty Nat had made. He loved it!
His weight this morning was 79.5kg so he's put on nearly a kilo in a day. I'm interested in seeing the scales tomorrow after all this food. His appetite coming back is due to a combination of factors: steroids should be increasing his appetite, haemaglobin increasing, he doesn't have chemo today and tomorrow and currently doesn't need nausea medication.
His blood levels are really good today also.
Haemaglobin - 96 / White Cell Count 1.7 / Platelets 35 / Neutrophils 1.20.
As you will see things will continue going on a bit of a roller coaster with levels moving up and down daily. The good thing about these readings is that his neutrophils are up so he is not in the true danger zone of being susceptible to infections.
Luke has been on the drip since he came in and everytime he needs to go to the loo he needs to be unplugged and his machine wheeled behind him. As he is drinking heaps himself now, they decided to take him off the drip. Luke was really excited this afternoon when he could get off the bed and go to the loo himself without having to ask to be unplugged. Lets hope good days like this outway the bad days.
They haven't given Luke any Maxalon for nausea today and he feels great and boy has he got his appetite back with a vengeance today!!! He ate all his breakfast/lunch / snacks and dinner. He then had about 3 pieces of homemade pizza that his Aunty Nat had made. He loved it!
His weight this morning was 79.5kg so he's put on nearly a kilo in a day. I'm interested in seeing the scales tomorrow after all this food. His appetite coming back is due to a combination of factors: steroids should be increasing his appetite, haemaglobin increasing, he doesn't have chemo today and tomorrow and currently doesn't need nausea medication.
His blood levels are really good today also.
Haemaglobin - 96 / White Cell Count 1.7 / Platelets 35 / Neutrophils 1.20.
As you will see things will continue going on a bit of a roller coaster with levels moving up and down daily. The good thing about these readings is that his neutrophils are up so he is not in the true danger zone of being susceptible to infections.
Luke has been on the drip since he came in and everytime he needs to go to the loo he needs to be unplugged and his machine wheeled behind him. As he is drinking heaps himself now, they decided to take him off the drip. Luke was really excited this afternoon when he could get off the bed and go to the loo himself without having to ask to be unplugged. Lets hope good days like this outway the bad days.
Friday 5th February 2010
Well what a wonderful sleep Luke and I had last night. 7.5 hours straight without interuption from the nurses. :) We both woke up at 7am and looked at each other and asked if either of us had been woken up by the nurse but it would appear we were both comatosed.
He woke up feeling good. Breakfast hadn't arrived yet and he asked for toast so I went and made some for him. He got through 1 piece and then got given his daily dose of maxolon - which is an anti nausea drug. Straight away he started feeling nauseous!
So the doctors have now decided to change drugs for nausea.
After breakfast he got all dopey again and ended up sleeping on and off for the morning.
Amy called from school with a headache that she'd had from last night. So Murray went and got her and brought her in (after checking her temperature to make sure she wasn't that sick!) Murray also picked up the families new phones. I'll shortly send out a group email with the details and you will find the new numbers listed on the side of this blog under contact details.
The phones caused a welcome distraction for everyone and Luke sat setting up his ring tone etc. while we ducked out for lunch.
All day the nurse had been threatening Luke with a sponge bath if he didn't get up and have a shower so she set a deadline of 3pm. Cutting it quite fine he finally had his shower at 3.30pm.
At around 5pm Luke had his "bee sting" injection in the butt. He had a nice nurse doing it this time and she was a lot slower injecting the chemo. He did still rate this at about 10 (instead of 20) on the pain scale and the pain lasted for about an hour.
His blood counts were really good today
Haemaglobin 91 / White Cell Count 1.0 / Platelets 32 / Neutrophils 0.74
He has continued to lose weight - currently down to 78.3kg.
Support still continues to come in from everyone. Thank you.
Something I could suggest for those interested is to go and donate blood. :)
I did not realise how many blood products Luke would/will need. However going through this process makes you realise how precious blood is, especially the platelets. Luke has already had about 5 bags of platelets.
For anyone interested Luke's blood type is A Rh D Negative. I've just looked on the Red Cross site and it shows that only 7% of Australians have this blood type. Amy and I are also this blood type. Obviously Luke would not receive your blood directly however it would save so many other lives.
He woke up feeling good. Breakfast hadn't arrived yet and he asked for toast so I went and made some for him. He got through 1 piece and then got given his daily dose of maxolon - which is an anti nausea drug. Straight away he started feeling nauseous!
So the doctors have now decided to change drugs for nausea.
After breakfast he got all dopey again and ended up sleeping on and off for the morning.
Amy called from school with a headache that she'd had from last night. So Murray went and got her and brought her in (after checking her temperature to make sure she wasn't that sick!) Murray also picked up the families new phones. I'll shortly send out a group email with the details and you will find the new numbers listed on the side of this blog under contact details.
The phones caused a welcome distraction for everyone and Luke sat setting up his ring tone etc. while we ducked out for lunch.
All day the nurse had been threatening Luke with a sponge bath if he didn't get up and have a shower so she set a deadline of 3pm. Cutting it quite fine he finally had his shower at 3.30pm.
At around 5pm Luke had his "bee sting" injection in the butt. He had a nice nurse doing it this time and she was a lot slower injecting the chemo. He did still rate this at about 10 (instead of 20) on the pain scale and the pain lasted for about an hour.
His blood counts were really good today
Haemaglobin 91 / White Cell Count 1.0 / Platelets 32 / Neutrophils 0.74
He has continued to lose weight - currently down to 78.3kg.
Support still continues to come in from everyone. Thank you.
Something I could suggest for those interested is to go and donate blood. :)
I did not realise how many blood products Luke would/will need. However going through this process makes you realise how precious blood is, especially the platelets. Luke has already had about 5 bags of platelets.
For anyone interested Luke's blood type is A Rh D Negative. I've just looked on the Red Cross site and it shows that only 7% of Australians have this blood type. Amy and I are also this blood type. Obviously Luke would not receive your blood directly however it would save so many other lives.
Thursday 4th February 2010
I’ve come in for the afternoon/evening shift and the mobile broadband isn’t working so Murray is going home to download this onto the blog for me.
Luke had a really good day today – he’s the best I’ve seen him in a while. He started the day very nauseous and dreaded the thought of his daily steroids (8 tablets) and the other 5 various tables. Dr Dipti came and decided he wasn’t coping too well with taking all the tablets so decided to give him the steroid Dexamethazone through his central line rather than make him have the Prednisone tablets. Apparently they are very similar.
Not sure if this is a temporary measure however the nurse said she was so pleased they decided to change.
He is a bit sore in the back/tailbone – I’m sure a mixture of lying on his back and injection yesterday and lumbar puncture. They’ve given him a soft padded mattress to go on top of the main mattress and this has made him a bit more comfortable.
Tomorrow he has another injection into the backside. So I don’t think he’s looking forward to that.
Blood levels – I forgot yesterday’s so here they both are
3/2 Haemaglobin 94 / White Cell Count 1.1 / Platlets 22 / Neutrophils 0.74
4/2 Haemaglobin 86 / White Cell Count 0.9 / Platelets 33 / Neutrophils 0.66
You will notice Luke’s platelets have gone up – he received a bag of platelets late last night. The nurse mentioned that if the Haemaglobin gets below 80 then he’ll have another blood transfusion.
I got told off by Murray and Luke that I told everyone the wrong names for the drink he likes in yesterday’s blog. It is actually called Ensure which is like Sustagen, not Endure like the cereal Sustain which I wrote last night!!! Sorry I didn’t have the sheet with me last night.
Our new mobile phones still haven’t arrived yet so Amy is very unhappy along with me :o( Hopefully they’ll turn up tomorrow.
I went into work today to see everyone and fill out the necessary forms for leave. At this stage I’m off until early – mid April and will reassess the situation then. It was good to see everyone but I still managed to have a bit of a breakdown (apologies to everyone for that). What I would have liked to say to all of you is thank you so much for all of your support. Knowing that I have such a supportive workplace and work colleagues (friends) makes it easier to cope with what lies ahead.
Well I’d better sign off so that Murray can take the thumb drive home and download this onto the blog. Chris.xx
Luke had a really good day today – he’s the best I’ve seen him in a while. He started the day very nauseous and dreaded the thought of his daily steroids (8 tablets) and the other 5 various tables. Dr Dipti came and decided he wasn’t coping too well with taking all the tablets so decided to give him the steroid Dexamethazone through his central line rather than make him have the Prednisone tablets. Apparently they are very similar.
Not sure if this is a temporary measure however the nurse said she was so pleased they decided to change.
He is a bit sore in the back/tailbone – I’m sure a mixture of lying on his back and injection yesterday and lumbar puncture. They’ve given him a soft padded mattress to go on top of the main mattress and this has made him a bit more comfortable.
Tomorrow he has another injection into the backside. So I don’t think he’s looking forward to that.
Blood levels – I forgot yesterday’s so here they both are
3/2 Haemaglobin 94 / White Cell Count 1.1 / Platlets 22 / Neutrophils 0.74
4/2 Haemaglobin 86 / White Cell Count 0.9 / Platelets 33 / Neutrophils 0.66
You will notice Luke’s platelets have gone up – he received a bag of platelets late last night. The nurse mentioned that if the Haemaglobin gets below 80 then he’ll have another blood transfusion.
I got told off by Murray and Luke that I told everyone the wrong names for the drink he likes in yesterday’s blog. It is actually called Ensure which is like Sustagen, not Endure like the cereal Sustain which I wrote last night!!! Sorry I didn’t have the sheet with me last night.
Our new mobile phones still haven’t arrived yet so Amy is very unhappy along with me :o( Hopefully they’ll turn up tomorrow.
I went into work today to see everyone and fill out the necessary forms for leave. At this stage I’m off until early – mid April and will reassess the situation then. It was good to see everyone but I still managed to have a bit of a breakdown (apologies to everyone for that). What I would have liked to say to all of you is thank you so much for all of your support. Knowing that I have such a supportive workplace and work colleagues (friends) makes it easier to cope with what lies ahead.
Well I’d better sign off so that Murray can take the thumb drive home and download this onto the blog. Chris.xx
Wednesday 3rd February 2010
I'm running a bit late with the blog entry tonight. It's now 9pm and I've just walked in the door at home from taking Amy in this afternoon and having dinner with Murray (lovely lasagne from Luke's aunty Nat).
As I mentioned last night Luke got a temperature of 38 degrees. As soon as they reach this level they follow protocol and give antibiotics via the drip every 4 hours for 48 hours. They had the on call doctor come and they wanted to do blood cultures to see if any infection was growing. This means having blood taken from two different parts of the body (some out of his central line and some out of his vein).
As it turned out within about 90 minutes his temperature was back down to 37 degrees but they still have to continue the antibiotics.
Luke probably started to settle down to sleep around 10pm last night and then woke at 2.30am / 5am and then 7am - that is around the drip machine beeping when it's running low and nurses sticking their head in for various other things. So he and Murray or I get quite disjointed sleep.
This morning he started eating a weetbix and got presented with his 8 steroid tablets for the day and a mixture of 5 other daily tablets. Unfortunately breakfast and the tablets didn't stay down and he had to take the dosage again around lunch time. He was booked in for a test at 9am and they decided to pick him up at 8.15am and take him down for a chest xray first. He then had a gamma ray snapshot of his heart. This involved injecting a trace element into his body that would attach to the red blood cells. After about half an hour they then inject a bit of radiation that attaches to the trace element/red blood cells and take images of his heart. These are base line indicators for them to compare down the track whether his heart is coping okay with the chemo.
We arrived back on the ward around 10.30am and he was still feeling really nauseous. Murray arrived around 11.30am and bought a cheesymite scroll in for his lunch from Bakers Delight. He managed to eat a bit of this to get his steroid tablets down with.
He then had a shower and decided to head into the courtyard for a bit of fresh air.
I then went to our own doctor (on Murray's continual pushing) to get my blood pressure checked as I was diagnosed with high blood pressure a few months before Xmas. It was fine but she was worried that I'm not sleeping too well so I now have a sleeping tablet to take when I'm on my night at home.
While I was away the Dietician came in and had a talk to the boys about the special diet he will need to have while he is neutropenic. She showed them a drink he can have called Endure. It's a chocolate milk drink that gives you energy - like Sustain. He had this and really enjoyed it and it seemed to fill him up! So now we will be making sure this gets ordered each day for him.
Unfortunately Luke had another chemo treatment this afternoon. This involved an injection into his backside of L-Asparaginase. Luke told me imagine a bee sting and times it by 10 - 20 times. That's what it feels like and the pain lasts for over an hour. He's didn't enjoy this one at all and unfortunately he will have this every 3 days for the next 4 weeks. Good to see that the boys still have their sense of humour - they reckon Luke has 3 pains in the arse now - Me, Amy and the needle!!!
Luke has a day off tomorrow from any treatment or tests (that we know about anyway)- so hopefully he can rest up and build up some strength for the next bee sting that will happen on Friday. (I know that's not 3 days but they started this one on Day 2 and the next one is Day 4 and every 3rd day after that).
Thank you all so much for the continuing emails/messages of support. We have been overwhelmed with offers of help. As I mentioned at this stage we are doing well as we have so much family in Canberra supporting us. If we do need your help down the track with meals etc we know we have lots of people to ask.
As I mentioned last night Luke got a temperature of 38 degrees. As soon as they reach this level they follow protocol and give antibiotics via the drip every 4 hours for 48 hours. They had the on call doctor come and they wanted to do blood cultures to see if any infection was growing. This means having blood taken from two different parts of the body (some out of his central line and some out of his vein).
As it turned out within about 90 minutes his temperature was back down to 37 degrees but they still have to continue the antibiotics.
Luke probably started to settle down to sleep around 10pm last night and then woke at 2.30am / 5am and then 7am - that is around the drip machine beeping when it's running low and nurses sticking their head in for various other things. So he and Murray or I get quite disjointed sleep.
This morning he started eating a weetbix and got presented with his 8 steroid tablets for the day and a mixture of 5 other daily tablets. Unfortunately breakfast and the tablets didn't stay down and he had to take the dosage again around lunch time. He was booked in for a test at 9am and they decided to pick him up at 8.15am and take him down for a chest xray first. He then had a gamma ray snapshot of his heart. This involved injecting a trace element into his body that would attach to the red blood cells. After about half an hour they then inject a bit of radiation that attaches to the trace element/red blood cells and take images of his heart. These are base line indicators for them to compare down the track whether his heart is coping okay with the chemo.
We arrived back on the ward around 10.30am and he was still feeling really nauseous. Murray arrived around 11.30am and bought a cheesymite scroll in for his lunch from Bakers Delight. He managed to eat a bit of this to get his steroid tablets down with.
He then had a shower and decided to head into the courtyard for a bit of fresh air.
I then went to our own doctor (on Murray's continual pushing) to get my blood pressure checked as I was diagnosed with high blood pressure a few months before Xmas. It was fine but she was worried that I'm not sleeping too well so I now have a sleeping tablet to take when I'm on my night at home.
While I was away the Dietician came in and had a talk to the boys about the special diet he will need to have while he is neutropenic. She showed them a drink he can have called Endure. It's a chocolate milk drink that gives you energy - like Sustain. He had this and really enjoyed it and it seemed to fill him up! So now we will be making sure this gets ordered each day for him.
Unfortunately Luke had another chemo treatment this afternoon. This involved an injection into his backside of L-Asparaginase. Luke told me imagine a bee sting and times it by 10 - 20 times. That's what it feels like and the pain lasts for over an hour. He's didn't enjoy this one at all and unfortunately he will have this every 3 days for the next 4 weeks. Good to see that the boys still have their sense of humour - they reckon Luke has 3 pains in the arse now - Me, Amy and the needle!!!
Luke has a day off tomorrow from any treatment or tests (that we know about anyway)- so hopefully he can rest up and build up some strength for the next bee sting that will happen on Friday. (I know that's not 3 days but they started this one on Day 2 and the next one is Day 4 and every 3rd day after that).
Thank you all so much for the continuing emails/messages of support. We have been overwhelmed with offers of help. As I mentioned at this stage we are doing well as we have so much family in Canberra supporting us. If we do need your help down the track with meals etc we know we have lots of people to ask.
Tuesday 2nd February 2010
Good evening all,
I'm typing this at around 8.00pm and I've just realised somehow the timing that is going to the blog is not right. I wondered why people thought I was having a nanny nap yesterday evening when in fact it was around 4pm!
Before I forget Happy Birthday to Nev - Murray has just joined Amy at our brother-in-laws place for his birthday.
Luke is doing okay all things considering. He had a bit of sleep last night. Normal taking of blood and pain relief/anti nausea that they give him at 8am and 8pm.
This morning blood levels better.
Haemaglobin 89 / Platelets 36 (due to all the transfusions)
White Cell Count 1.3 and Neutrophils .57
The neutrophils are the ones that kill fungi and bacteria. When you undergo chemo you neutrophils do drop and this means you are susceptible to infection normally 7 - 9 days after chemo for a period of 2-3 days. Unfortunately as Luke's chemo is going for a 4 week period his neutrophils will be low basically for the whole time. He will be what they call neutropenic.What does that mean? Well it means that Luke is still able to have visitors during this period however extra special precautions need to be taken. (If anyone would like to visit it might be best if you contact us via either my or Luke's mobile - please don't take it personally if we say it's probably not a good idea as we will need to monitor him by the day - he does enjoy the text messages so you can keep them coming any time).
It is vital for his treatment that anyone who thinks they have a sniffle/cough/cold/diarrhoea stays away until they are better. Everyone needs to wash their hands with the handwash hanging on the doors in the wards before and after entering his room. Luke will also go onto a special neutropenic diet. This means the foods to avoid are things such as soft cheeses, cold meat/poultry/fish/eggs (including ham and sausages), undercooked meats, salad (including pasta/rice salads), raw and stir fried vegetables, unpeeled fruits and tap water. Obviously this is to avoid the risk of bugs and infection in the foods.
As Luke has been in bed over the weekend getting blood transfusions he is very weak and stiff from being in the one position. The nurses are saying he has to get moving. Previously he was only walking a few steps away to the toilet and back into bed. So today Grandma and Granddad brought in lunch for Murray and I (Luke was fasting again for a test in the afternoon) so he walked out into the courtyard with a mask on and sat with us. The courtyard is right near the designated patient smoking area and unfortunately the smokers tend to creep over into the courtyard so it can make for an unpleasant experience for us non smokers.
Luke started chemo this afternoon around 3pm. The treatment today was 2 different drugs through his central line - Vincristine and Daunorubicin. All very painless while being administered.
He was due to get a lumbar puncture done at 4pm (which is why he had been fasting all day) but it turned into about 5.30pm. The procedure went well and he had some more chemo into the spinal fluid.
Unfortunately at about 7pm he started getting a temperature 38 degrees and his pulse was a bit high. So they are currently taking blood cultures to check for infection and giving him antibiotics. (It's now 8.30pm)
Luke is really quite weak. He was 89kg when we came in on Monday last week and his weight was 81kg today. So quite a dramatic weight loss program he's signed up for!!!
Hopefully the steroids will help him gain the weight back.
I think I've typed more than enough for today. I'm about to go and hassle Luke to have some food.
I'm typing this at around 8.00pm and I've just realised somehow the timing that is going to the blog is not right. I wondered why people thought I was having a nanny nap yesterday evening when in fact it was around 4pm!
Before I forget Happy Birthday to Nev - Murray has just joined Amy at our brother-in-laws place for his birthday.
Luke is doing okay all things considering. He had a bit of sleep last night. Normal taking of blood and pain relief/anti nausea that they give him at 8am and 8pm.
This morning blood levels better.
Haemaglobin 89 / Platelets 36 (due to all the transfusions)
White Cell Count 1.3 and Neutrophils .57
The neutrophils are the ones that kill fungi and bacteria. When you undergo chemo you neutrophils do drop and this means you are susceptible to infection normally 7 - 9 days after chemo for a period of 2-3 days. Unfortunately as Luke's chemo is going for a 4 week period his neutrophils will be low basically for the whole time. He will be what they call neutropenic.What does that mean? Well it means that Luke is still able to have visitors during this period however extra special precautions need to be taken. (If anyone would like to visit it might be best if you contact us via either my or Luke's mobile - please don't take it personally if we say it's probably not a good idea as we will need to monitor him by the day - he does enjoy the text messages so you can keep them coming any time).
It is vital for his treatment that anyone who thinks they have a sniffle/cough/cold/diarrhoea stays away until they are better. Everyone needs to wash their hands with the handwash hanging on the doors in the wards before and after entering his room. Luke will also go onto a special neutropenic diet. This means the foods to avoid are things such as soft cheeses, cold meat/poultry/fish/eggs (including ham and sausages), undercooked meats, salad (including pasta/rice salads), raw and stir fried vegetables, unpeeled fruits and tap water. Obviously this is to avoid the risk of bugs and infection in the foods.
As Luke has been in bed over the weekend getting blood transfusions he is very weak and stiff from being in the one position. The nurses are saying he has to get moving. Previously he was only walking a few steps away to the toilet and back into bed. So today Grandma and Granddad brought in lunch for Murray and I (Luke was fasting again for a test in the afternoon) so he walked out into the courtyard with a mask on and sat with us. The courtyard is right near the designated patient smoking area and unfortunately the smokers tend to creep over into the courtyard so it can make for an unpleasant experience for us non smokers.
Luke started chemo this afternoon around 3pm. The treatment today was 2 different drugs through his central line - Vincristine and Daunorubicin. All very painless while being administered.
He was due to get a lumbar puncture done at 4pm (which is why he had been fasting all day) but it turned into about 5.30pm. The procedure went well and he had some more chemo into the spinal fluid.
Unfortunately at about 7pm he started getting a temperature 38 degrees and his pulse was a bit high. So they are currently taking blood cultures to check for infection and giving him antibiotics. (It's now 8.30pm)
Luke is really quite weak. He was 89kg when we came in on Monday last week and his weight was 81kg today. So quite a dramatic weight loss program he's signed up for!!!
Hopefully the steroids will help him gain the weight back.
I think I've typed more than enough for today. I'm about to go and hassle Luke to have some food.
Subscribe to:
Posts (Atom)
