Well 3 sleeps till Christmas and we're looking forward to having a bit of a break from work and hospital and most importantly spending time with the family.
It's hard to imagine it's already nearly 11 months since Luke was first diagnosed with leukaemia. As a quick update on Luke’s journey - he has endured 5 cycles of intensive chemotherapy lasting about 8 weeks each. He has one more intensive cycle starting 3 January and this will take us through till the end of February. We can see a glimmer of light at the end of the tunnel; however he still has a long way to go with maintenance chemo till around May 2013. So far so good as Luke has been achieving remission at the end of each cycle, so that’s all we can ask. Even though he’s had lots of lows, he has had some good times during the year, such as getting his drivers licence, being able to drive his sporty Nissan 300ZX, turning 18, and getting through Year 12 successfully.
It was great to see Luke graduate last Wednesday. He put in a lot of effort to do the work set for him. As mentioned earlier in the year, Luke was unable to sit the AST tests at school as he was neutropenic, so he was given an exemption. His ATAR score (or university entrance score) was worked out pro-rata based on the work he did in Year 11 and 12. He achieved an ATAR of 87.95, so that was an amazing effort and we are really proud of him.
He has just heard that he's been accepted into the University of Canberra to undertake a Bachelor of Information Technology. So that's really exciting to know what the future holds for him. This was an early round placement due to the Principal's recommendation application that was submitted by his college. However, given Luke's ATAR score he would have gotten into university based on his own work. Luke and I went to the university today to talk to the course convener to get an idea about whether he would be able to manage full time study and discuss the possibility that he would be neutropenic during the first few weeks of uni. He was very helpful and we've devised a plan for first semester that should see him having easier units that he can manage without having to go into uni for lectures and tutorials. So hopefully all goes well.
I'd just like to take this opportunity to thank everyone for their support and understanding throughout the year. We really appreciate it.
If there’s anything this journey has taught me it’s not to take anything for granted and to treasure every moment with your family. So on that note – I wish you and your family a very safe and happy Christmas and a prosperous and healthy New Year.
I'll be in touch in the New Year.
Monday 1st December 2010
Not long until Christmas - and unfortunately I'm not organised at all!
We finally have a completed kitchen and it's great. We are really happy with it all. I've finished painting the kitchen as well as the skirting boards so now I can sit back and admire it all.
Luke is going well. He has finished all his school work and no longer has me to nag him about getting his work finished. Nothing like doing a terms work of maths in a day and sitting the test!! Don't know how he did it but at least it's all done now.
His Year 12 Graduation ceremony will be on the 15th December. Hopefully he remains well and won't slip into neutropenia so that he can get to the ceremony. He will finish this cycle of chemo next Wednesday. We then see the specialist on Thursday to see how long of a break he will have before starting his last 8 week intensive chemo cycle. Hopefully they will give him a good 3 week break and let him have Xmas off. All being well the last cycle should finish by the end of February next year. We also need to see with the specialist how the maintenance chemo works after that. We know he will need maintenance chemo for at least 2 years and each cycles runs for 12 weeks however we don't know how much of a gap between cycles he gets.
Likewise we will need to see if he is going to have a bone marrow biopsy at the end of this cycle to see if he is still in remission. So at the moment Luke is tracking well and apart from not having a great deal of energy and feeling "off" somedays, this cycle is going without incident (other than his initial hives which seem to have settled down - he has been taking anti-histamines.
Amy decided she wanted to get a job to get some money to buy all the clothes that she keeps "needing". She started her first shift at Donut King at the Tuggeranong Hyperdome. She was a bit anxious at first, especially about the uniform that really isn't that flattering. However when I picked her up last night she had a big smile and enjoyed herself. So it will be good for her to have her own money coming in.
Murray's Mum, Ann, had her 70th birthday party last Saturday. A great night was had by all. I've attached a photo of Ann and Ross with all the grandkids.
Hopefully I'll update in a few weeks before Xmas, about the graduation and what the specialist has said.
We finally have a completed kitchen and it's great. We are really happy with it all. I've finished painting the kitchen as well as the skirting boards so now I can sit back and admire it all.
Luke is going well. He has finished all his school work and no longer has me to nag him about getting his work finished. Nothing like doing a terms work of maths in a day and sitting the test!! Don't know how he did it but at least it's all done now.
His Year 12 Graduation ceremony will be on the 15th December. Hopefully he remains well and won't slip into neutropenia so that he can get to the ceremony. He will finish this cycle of chemo next Wednesday. We then see the specialist on Thursday to see how long of a break he will have before starting his last 8 week intensive chemo cycle. Hopefully they will give him a good 3 week break and let him have Xmas off. All being well the last cycle should finish by the end of February next year. We also need to see with the specialist how the maintenance chemo works after that. We know he will need maintenance chemo for at least 2 years and each cycles runs for 12 weeks however we don't know how much of a gap between cycles he gets.
Likewise we will need to see if he is going to have a bone marrow biopsy at the end of this cycle to see if he is still in remission. So at the moment Luke is tracking well and apart from not having a great deal of energy and feeling "off" somedays, this cycle is going without incident (other than his initial hives which seem to have settled down - he has been taking anti-histamines.
Amy decided she wanted to get a job to get some money to buy all the clothes that she keeps "needing". She started her first shift at Donut King at the Tuggeranong Hyperdome. She was a bit anxious at first, especially about the uniform that really isn't that flattering. However when I picked her up last night she had a big smile and enjoyed herself. So it will be good for her to have her own money coming in.
Murray's Mum, Ann, had her 70th birthday party last Saturday. A great night was had by all. I've attached a photo of Ann and Ross with all the grandkids.
Hopefully I'll update in a few weeks before Xmas, about the graduation and what the specialist has said.
Friday 12th November 2010
Where is the time going to? I can't believe Xmas is just around the corner.
Luke is going well on this cycle of chemo although we did hit a speed bump early on.
He started chemo on the 28th Oct and by the 29th he had what we thought were a few mosquito bites on his arms and legs.(this was quite feasible as we've had the doors open in the house non stop while we've been renovating). On the Sunday 31st he went in for his next injection of Asparaginase and he seemed to have more spots all over him but they disappeared after an hour of so of getting up in the morning. They gave him a cortisone injection to ease the spots. By Tuesday/Wednesday the spots were turning more into a full blown rash or hives. It was a definite allergic reaction. When we went in on Wednesday 3rd for his next injection of Asparaginase they decided that he was having a reaction to Asparaginase. We couldn't understand why he would suddenly develop a resistance to this drug as he has probably had 50 of these injections over the past 9 months. Apparently this can happen. The interesting thing is that there has been another young male (21 years old) who has just been diagnosed with the same ALL leukaemia as Luke. He has just started having Asparaginase and reacted straight away with a more severe allergic reaction. You would have to think it would have something to do with the batch??
They are going to try and get PEG Asparaginase (1 injection vs the 5 equivalent Luke currently has) however this comes from Germany and needs approval through the Therapeutic Goods Association in Australia so this will take time to be approved.
In the meantime they are treating the reaction with steroids and antihistamines. It seems to stop the hives however the steroids are making him eat more!!
Luke is sick of me nagging about his school work. He only has a few weeks left before the teachers will basically close off the results for the year. He needs to finish his Maths and English to obtain prorata marks and finish year 12. I'm sure he'll get it done in time but it still makes me worry and nag!
The kitchen is all finished. I painted the ceiling and walls in the kitchen area. the only problem we have is the lack of a cooktop! We bought a new Electrolux induction cooktop that was basically dead on arrival. We've had lots of going backward and forward between Electrolux who say as it was installed it falls under warranty and needed repairing by Maynor and Cochrane (the agents in Canberra). We have been arguing that it is a new product that we paid a lot for and it hasn't been used so we wanted a new one not a repaired one. In the end Liz, the manager from the Good Guys at Tuggeranong where we bought it from (we know Liz and Julian Barrington from Luke's cricket days) stepped in and spoke to the Electrolux sales rep who approved a new cooktop for us.
It's been 2 weeks since this was approved and I chased Electrolux yesterday to see where the cooktop was. I was advised they were on back order from Germany and would arrive on 20th December!!! As you can imagine I was not impressed. Customer care spoke to sales who said they have escalated our issue and that it would still be at least 2 to 3 weeks before we could get one. I said surely there must be a retailer that has one in stock and they said to contact Good Guys to see and if so they could do some sort of deal. I contacted Liz and she called while I was out yesterday and told Luke she might have a solution for us. I've tried to call her this morning and I'm just waiting for her to call back. As I'm typing this, I've just taken a phone call from Maynor and Cochrane who have said they have a cooktop for us to install on Monday... so Liz must have worked some magic for us. It just goes to show you need someone with pull to make things happen otherwise as a little individual you have no say what so ever. I would therefore recommend Good Guys Tuggeranong to everyone.
I've posted a photo of our semi-finished kitchen as a few people have been asking what it looks like.
Amy was very excited on Wednesday - she had her braces taken off. She had a day of freedom with a beautiful smile until she had the retainers fit yesterday. She has day ones (clear plastic) to wear for 1 year and night ones (like clip on plates) to wear for 2 years. Unfortunately the happiness disappeared for a while as she had a lisp and her teeth were hurting last night. Apparently it takes a few days for your tongue to reposition itself with the plates in and this affects your speech. Other than that problem which I'm sure will improve her teeth look fabulous.
A quick update on Mum's situation with the catheter. She still has it in place but seems to be getting used to the bag. She went to see the specialist on Monday (ended up getting a private appointment to get in sooner than the Sep 2011 appointment she originally got given). He looked at all of her test results and scans and the only thing he can see is a slight thickening on one side of the bladder. He said in the next few weeks he would book her into hospital and have an exploratory look around. Hopefully he can find the problem and be able to fix it. In the meantime he has placed her on some tablets males take for prostrate problems, in the hope it will relax the muscles and spasms.
That's all our news for now. I'll post a blog again in a few weeks.
Luke is going well on this cycle of chemo although we did hit a speed bump early on.
He started chemo on the 28th Oct and by the 29th he had what we thought were a few mosquito bites on his arms and legs.(this was quite feasible as we've had the doors open in the house non stop while we've been renovating). On the Sunday 31st he went in for his next injection of Asparaginase and he seemed to have more spots all over him but they disappeared after an hour of so of getting up in the morning. They gave him a cortisone injection to ease the spots. By Tuesday/Wednesday the spots were turning more into a full blown rash or hives. It was a definite allergic reaction. When we went in on Wednesday 3rd for his next injection of Asparaginase they decided that he was having a reaction to Asparaginase. We couldn't understand why he would suddenly develop a resistance to this drug as he has probably had 50 of these injections over the past 9 months. Apparently this can happen. The interesting thing is that there has been another young male (21 years old) who has just been diagnosed with the same ALL leukaemia as Luke. He has just started having Asparaginase and reacted straight away with a more severe allergic reaction. You would have to think it would have something to do with the batch??
They are going to try and get PEG Asparaginase (1 injection vs the 5 equivalent Luke currently has) however this comes from Germany and needs approval through the Therapeutic Goods Association in Australia so this will take time to be approved.
In the meantime they are treating the reaction with steroids and antihistamines. It seems to stop the hives however the steroids are making him eat more!!
Luke is sick of me nagging about his school work. He only has a few weeks left before the teachers will basically close off the results for the year. He needs to finish his Maths and English to obtain prorata marks and finish year 12. I'm sure he'll get it done in time but it still makes me worry and nag!
The kitchen is all finished. I painted the ceiling and walls in the kitchen area. the only problem we have is the lack of a cooktop! We bought a new Electrolux induction cooktop that was basically dead on arrival. We've had lots of going backward and forward between Electrolux who say as it was installed it falls under warranty and needed repairing by Maynor and Cochrane (the agents in Canberra). We have been arguing that it is a new product that we paid a lot for and it hasn't been used so we wanted a new one not a repaired one. In the end Liz, the manager from the Good Guys at Tuggeranong where we bought it from (we know Liz and Julian Barrington from Luke's cricket days) stepped in and spoke to the Electrolux sales rep who approved a new cooktop for us.
It's been 2 weeks since this was approved and I chased Electrolux yesterday to see where the cooktop was. I was advised they were on back order from Germany and would arrive on 20th December!!! As you can imagine I was not impressed. Customer care spoke to sales who said they have escalated our issue and that it would still be at least 2 to 3 weeks before we could get one. I said surely there must be a retailer that has one in stock and they said to contact Good Guys to see and if so they could do some sort of deal. I contacted Liz and she called while I was out yesterday and told Luke she might have a solution for us. I've tried to call her this morning and I'm just waiting for her to call back. As I'm typing this, I've just taken a phone call from Maynor and Cochrane who have said they have a cooktop for us to install on Monday... so Liz must have worked some magic for us. It just goes to show you need someone with pull to make things happen otherwise as a little individual you have no say what so ever. I would therefore recommend Good Guys Tuggeranong to everyone.
I've posted a photo of our semi-finished kitchen as a few people have been asking what it looks like.
Amy was very excited on Wednesday - she had her braces taken off. She had a day of freedom with a beautiful smile until she had the retainers fit yesterday. She has day ones (clear plastic) to wear for 1 year and night ones (like clip on plates) to wear for 2 years. Unfortunately the happiness disappeared for a while as she had a lisp and her teeth were hurting last night. Apparently it takes a few days for your tongue to reposition itself with the plates in and this affects your speech. Other than that problem which I'm sure will improve her teeth look fabulous.
A quick update on Mum's situation with the catheter. She still has it in place but seems to be getting used to the bag. She went to see the specialist on Monday (ended up getting a private appointment to get in sooner than the Sep 2011 appointment she originally got given). He looked at all of her test results and scans and the only thing he can see is a slight thickening on one side of the bladder. He said in the next few weeks he would book her into hospital and have an exploratory look around. Hopefully he can find the problem and be able to fix it. In the meantime he has placed her on some tablets males take for prostrate problems, in the hope it will relax the muscles and spasms.
That's all our news for now. I'll post a blog again in a few weeks.
Friday 29th October 2010
Luke is officially an adult! He turned 18 yesterday.
It's hard to imagine where the years have gone to but as I keep telling him, he'll always be my baby boy. It's been a tough year for him so it was nice to be able to celebrate his 18th with family and friends. As we knew chemo was starting around his birthday we decided to have his party last Saturday. He had a fabulous time. The first party was a lunchtime/afternoon BBQ with family. The second followed straight afterwards at 5pm, 15 boys + 1 girl (she’s one of the boy’s) came over for an X-Box LAN party. We had 4 TV’s set up in the lounge and family room and they were connected to a switchboard that allowed them to all verse each other. The party ended up around 2.30am so they all had a great time.
We went and saw the specialist on Wednesday and he was confident enough that Luke's blood test results are all going well that he said Luke did not have to have a bone marrow biopsy. We have been put under the care of Dr James D'Rozario now as Dipti has been off for a few months now. It would seem that she is not well herself so hopefully all is okay with her.
Unfortunately Luke started chemo today and we ended up having 9 hours at the hospital!! Not much fun on your birthday!! I took a cake in for the nurses so that they could have afternoon tea and sing Happy Birthday to him. As we didn’t leave the hospital till 6.30pm, Murray and Amy came into Woden and we had dinner out.
Luke is on an Interim Maintenance II cycle for 8 weeks. We are hoping like the last maintenance cycle that this one won't be too bad on him.
Murray and I can't believe that our 5 weeks leave is almost up. We need to go back to work for a holiday. The flooring seemed to take forever and has been hard work but so worthwhile. The kitchen looks great. The finishing touches by the electrician and kitchen company are being completed today. That will then just leave me to do the painting of the new skirting boards around the new flooring and the kitchen ceiling. I’ve already painted the family room and a new front door. Shame I’m already sick of the painting because there is still quite a bit to do. I’ve decided to slowly paint through on my days off rather than bust a boiler trying to get it done in the next few days. I'll post a photo of the kitchen once it's all finished.
We did get up to Sydney a few weekends ago. It was good to get away but quite tiring for everyone - Luke especially due to all the walking.
The boys really enjoyed the Motor show and Luke filled the memory card on the camera full of car photos! Amy and I really enjoyed Fame. We had a nice dinner at an Italian restaurant around Darling Harbour then headed back to the apartment. The next day Amy and I shopped while the boys went to the movies.
Luke is still trying to do some schoolwork as he feels up to it. He's under the pump to try and get some assessment items completed in the next few weeks. Hopefully I'll update the blog in a few weeks.
It's hard to imagine where the years have gone to but as I keep telling him, he'll always be my baby boy. It's been a tough year for him so it was nice to be able to celebrate his 18th with family and friends. As we knew chemo was starting around his birthday we decided to have his party last Saturday. He had a fabulous time. The first party was a lunchtime/afternoon BBQ with family. The second followed straight afterwards at 5pm, 15 boys + 1 girl (she’s one of the boy’s) came over for an X-Box LAN party. We had 4 TV’s set up in the lounge and family room and they were connected to a switchboard that allowed them to all verse each other. The party ended up around 2.30am so they all had a great time.
We went and saw the specialist on Wednesday and he was confident enough that Luke's blood test results are all going well that he said Luke did not have to have a bone marrow biopsy. We have been put under the care of Dr James D'Rozario now as Dipti has been off for a few months now. It would seem that she is not well herself so hopefully all is okay with her.
Unfortunately Luke started chemo today and we ended up having 9 hours at the hospital!! Not much fun on your birthday!! I took a cake in for the nurses so that they could have afternoon tea and sing Happy Birthday to him. As we didn’t leave the hospital till 6.30pm, Murray and Amy came into Woden and we had dinner out.
Luke is on an Interim Maintenance II cycle for 8 weeks. We are hoping like the last maintenance cycle that this one won't be too bad on him.
Murray and I can't believe that our 5 weeks leave is almost up. We need to go back to work for a holiday. The flooring seemed to take forever and has been hard work but so worthwhile. The kitchen looks great. The finishing touches by the electrician and kitchen company are being completed today. That will then just leave me to do the painting of the new skirting boards around the new flooring and the kitchen ceiling. I’ve already painted the family room and a new front door. Shame I’m already sick of the painting because there is still quite a bit to do. I’ve decided to slowly paint through on my days off rather than bust a boiler trying to get it done in the next few days. I'll post a photo of the kitchen once it's all finished.
We did get up to Sydney a few weekends ago. It was good to get away but quite tiring for everyone - Luke especially due to all the walking.
The boys really enjoyed the Motor show and Luke filled the memory card on the camera full of car photos! Amy and I really enjoyed Fame. We had a nice dinner at an Italian restaurant around Darling Harbour then headed back to the apartment. The next day Amy and I shopped while the boys went to the movies.
Luke is still trying to do some schoolwork as he feels up to it. He's under the pump to try and get some assessment items completed in the next few weeks. Hopefully I'll update the blog in a few weeks.
Tuesday 5th October, 2010
I know it's been 3 weeks since my last blog. Sorry about that. We've been extremely busy with all sorts of things.
Oh my God - what have we done!! The kitchen renovation is in full swing. Murray and I started our 5 weeks leave on Wed 22 September. In the past 2 weeks we have packed up the kitchen and set up a temporary kitchen in the study and had a garage sale to get rid of some items and junk. We have about 50 square metres of flooring to replace. Murray has used the hammer drill to pull up the tiles from the floor. He did this over 3 days in shifts of a 3 or so hours a time. What a job!! however if we thought that was bad, we needed to then hire a concrete grinder to get rid of the glue and tile residue. What a mess - we had concrete dust billowing out of the house, it looked like it was on fire! At times Murray and I couldn't see a thing in the house. The machine was hooked up to a vacuum cleaner however it really didn't seem to do that much to help clean up. It took days to clean up all the dust. I had to sugar soap all the walls and the floor has been swept, vacuumed and mopped countless times.
The kitchen got ripped out this morning. They had given us till next Monday to lay the new floating laminate floor however we have since discovered that we cannot lay this under the island bench as planned. So we will need to wait until the cabinets go in to lay the floor. That's okay because I need to paint the family room in the meantime. Hopefully in the long run all this hard work will be worthwhile.
Luke recovered from the chemo overdose. Chemo ended up being on hold for 2 weeks and he recommenced the cycle on 20th Sept. The doctors decided to ditch the 2nd lot of cytarabine as he'd already had this. He hasn't been doing that much as he has been feeling really tired and lethargic, after walking 50m he feels like he's run a marathon. He's been neutropenic however his bloods have been hanging in there and he hasn't needed any more transfusions. With all of the work going on at home, he has spent the past 5 nights staying at his Aunty's house to avoid all of the dust. He had the house to himself as Heidi and the family went to the coast for a little mini break during the school holidays. We've been ringing up to see how he's going and he's been coming home to see the nurse to give blood samples and to eat and get supplies. Amy also has ended up staying at her other Aunty's house (Nat) and spending time with her cousin Emma. They have both come back home today.
Luke finished this cycle of chemo on Saturday. Luke and Murray went in to see the specialist today and find out what the plan is from here. He now gets to have a 3 week break before going back to the specialist to see whether he needs to have a bone marrow biopsy and when he will be starting the next maintenance chemo cycle. At this stage it could start up again around his 18th birthday on the 28th October. That's a bit mean however he will at least get a good break. Hopefully his bloods will recover in the next week and he'll no longer be neutropenic and be able to get out and about. I need to start thinking about what we are going to do for his 18th. He'll probably do something with his friends and something separate for the family. As mentioned in the last blog we are planning on going up to Sydney on the 16th October for the Motor Show and Fame. So all being well Luke will be okay by then and we'll have a nice time away.
Mum is till connected to the catheter. Unfortunately when they tried again it still didn't work and they discovered she actually still had a very bad infection. So she has been back on antibiotics to clear that and the doctor is trying to get her in to a urologist to try and get to the bottom of the problem. She is however much better than she had been.
I'll probably not blog for another 3 weeks as Luke will not have any treatment for a while.
Oh my God - what have we done!! The kitchen renovation is in full swing. Murray and I started our 5 weeks leave on Wed 22 September. In the past 2 weeks we have packed up the kitchen and set up a temporary kitchen in the study and had a garage sale to get rid of some items and junk. We have about 50 square metres of flooring to replace. Murray has used the hammer drill to pull up the tiles from the floor. He did this over 3 days in shifts of a 3 or so hours a time. What a job!! however if we thought that was bad, we needed to then hire a concrete grinder to get rid of the glue and tile residue. What a mess - we had concrete dust billowing out of the house, it looked like it was on fire! At times Murray and I couldn't see a thing in the house. The machine was hooked up to a vacuum cleaner however it really didn't seem to do that much to help clean up. It took days to clean up all the dust. I had to sugar soap all the walls and the floor has been swept, vacuumed and mopped countless times.
The kitchen got ripped out this morning. They had given us till next Monday to lay the new floating laminate floor however we have since discovered that we cannot lay this under the island bench as planned. So we will need to wait until the cabinets go in to lay the floor. That's okay because I need to paint the family room in the meantime. Hopefully in the long run all this hard work will be worthwhile.
Luke recovered from the chemo overdose. Chemo ended up being on hold for 2 weeks and he recommenced the cycle on 20th Sept. The doctors decided to ditch the 2nd lot of cytarabine as he'd already had this. He hasn't been doing that much as he has been feeling really tired and lethargic, after walking 50m he feels like he's run a marathon. He's been neutropenic however his bloods have been hanging in there and he hasn't needed any more transfusions. With all of the work going on at home, he has spent the past 5 nights staying at his Aunty's house to avoid all of the dust. He had the house to himself as Heidi and the family went to the coast for a little mini break during the school holidays. We've been ringing up to see how he's going and he's been coming home to see the nurse to give blood samples and to eat and get supplies. Amy also has ended up staying at her other Aunty's house (Nat) and spending time with her cousin Emma. They have both come back home today.
Luke finished this cycle of chemo on Saturday. Luke and Murray went in to see the specialist today and find out what the plan is from here. He now gets to have a 3 week break before going back to the specialist to see whether he needs to have a bone marrow biopsy and when he will be starting the next maintenance chemo cycle. At this stage it could start up again around his 18th birthday on the 28th October. That's a bit mean however he will at least get a good break. Hopefully his bloods will recover in the next week and he'll no longer be neutropenic and be able to get out and about. I need to start thinking about what we are going to do for his 18th. He'll probably do something with his friends and something separate for the family. As mentioned in the last blog we are planning on going up to Sydney on the 16th October for the Motor Show and Fame. So all being well Luke will be okay by then and we'll have a nice time away.
Mum is till connected to the catheter. Unfortunately when they tried again it still didn't work and they discovered she actually still had a very bad infection. So she has been back on antibiotics to clear that and the doctor is trying to get her in to a urologist to try and get to the bottom of the problem. She is however much better than she had been.
I'll probably not blog for another 3 weeks as Luke will not have any treatment for a while.
Thursday 16th September, 2010
Well Luke has had a rough week. His chemo was on hold as his neutrophils were too low to continue cytarabine. On Thursday 9th Sep, Luke was given a PEG injection to increase his neutrophils. This seemed to work within a few days. We found out that this injection costs about $5000 - $6000 so obviously it is not something that is given all the time (this is covered as Luke is still technically an in patient of the hospital). On Friday 10th Luke's lumbar puncture still went ahead as planned. We were told his chemo would start again on Saturday. When Saturday came we were once again told chemo was on hold as his haemaglobin and platelets were too low. On Sunday Luke needed 2 x blood transfusions. So that took 6 hours by the time they cross matched his blood.
Monday was a bit of a nightmare day for Luke and Murray. Over the weekend, there had been talk about a problem with pharmacy and a stocktake of chemo they had done. The doctors confirmed that they are 90% sure that Luke was overdosed on chemo. When he had cytarabine back on Thursday 2nd September it would appear that instead of the 160mg over 4 days he was given 800mg over 4 days instead. He is okay, however the overdose would explain the problems that are occurring with Luke's bloods and immune system going so haywire. It appears that the higher dosage is used in paediatric protocols, so as Luke is relatively young they seem to think this is why he has coped alright with the mix up. The doctors are monitoring Luke's blood levels and his chemo is currently on hold till these build up to an acceptable level.
The boys started the day at 9am at the hospital to see the doctors and ended up leaving at around 6pm after much discussion throughout the day between doctors, nurses and pharmacy and another 2 x blood transfusions. So it turned out to be a very long, stressful day for them.
So at this stage chemo is still on hold and his bloods are slowly picking up, chemo will probably start back up on Monday. I'm starting to stress out a bit about the delay in the chemo. Only a few days before all of the dramas, I went ahead and booked tickets for the boys to go to the Motor Show in Sydney on the 16th October. We decided that Amy & I would go to see Fame the musical and I've booked a nights accommodation. This date worked out well and fell at a time when he would have had 3 weeks between chemos. The problem is the longer this delay keeps happening now, the more chance that he will either just have finished chemo and probably be neutropenic or he'll still be on treatment. The boys have a week to play with as the motor show is on till the 24th October, however Amy and I are locked in with our show dates. So worst case scenario is that Amy and I will have to go up by ourselves and the boys may miss out of the motor show!! It just goes to show, I shouldn't plan things too far in advance because you never know what's going to happen!
Mum unfortunately still has the catheter. The good news over the last few days after ultrasounds, CT scans and blood tests is that everything appears normal. There are no masses or cancers etc showing anywhere in the abdomen that could have caused problems. She went to the doctors today and they have agreed that next Wednesday they will try again to remove the catheter.So hopefully it works this time around. I guess that just leaves whether the parkinson's is causing any problems.
I cannot believe Mum & Dad's kitchen is just about done!! They ripped it out on Monday and installed the cabinets that afternoon. The finishing touches to the cabinets happened on Tuesday/Wednesday with handles etc. The plasterer came today and patched up all the bits and pieces (they had to put up new gyprock where the tiles on the walls had been glued on a bit too well!!)
I went over this afternoon to show Amy the kitchen and stayed to clean the cupboards/drawers and start finding a home for all their stuff. It really looks great. Being white the kitchen looks much bigger than the old wood kitchen. Hopefully they will have much greater access to everything now.
We have decided to go ahead with the same company, Caliber Kitchens. So hopefully work will start on our kitchen in 4 weeks. Our problem at the moment is trying to finalise colours in the kitchen as well as floorboard colours to go through the entry, kitchen, family room and hallway. Unfortunately everyone has a differing opinion!
I'll update when there is any further news.
Monday was a bit of a nightmare day for Luke and Murray. Over the weekend, there had been talk about a problem with pharmacy and a stocktake of chemo they had done. The doctors confirmed that they are 90% sure that Luke was overdosed on chemo. When he had cytarabine back on Thursday 2nd September it would appear that instead of the 160mg over 4 days he was given 800mg over 4 days instead. He is okay, however the overdose would explain the problems that are occurring with Luke's bloods and immune system going so haywire. It appears that the higher dosage is used in paediatric protocols, so as Luke is relatively young they seem to think this is why he has coped alright with the mix up. The doctors are monitoring Luke's blood levels and his chemo is currently on hold till these build up to an acceptable level.
The boys started the day at 9am at the hospital to see the doctors and ended up leaving at around 6pm after much discussion throughout the day between doctors, nurses and pharmacy and another 2 x blood transfusions. So it turned out to be a very long, stressful day for them.
So at this stage chemo is still on hold and his bloods are slowly picking up, chemo will probably start back up on Monday. I'm starting to stress out a bit about the delay in the chemo. Only a few days before all of the dramas, I went ahead and booked tickets for the boys to go to the Motor Show in Sydney on the 16th October. We decided that Amy & I would go to see Fame the musical and I've booked a nights accommodation. This date worked out well and fell at a time when he would have had 3 weeks between chemos. The problem is the longer this delay keeps happening now, the more chance that he will either just have finished chemo and probably be neutropenic or he'll still be on treatment. The boys have a week to play with as the motor show is on till the 24th October, however Amy and I are locked in with our show dates. So worst case scenario is that Amy and I will have to go up by ourselves and the boys may miss out of the motor show!! It just goes to show, I shouldn't plan things too far in advance because you never know what's going to happen!
Mum unfortunately still has the catheter. The good news over the last few days after ultrasounds, CT scans and blood tests is that everything appears normal. There are no masses or cancers etc showing anywhere in the abdomen that could have caused problems. She went to the doctors today and they have agreed that next Wednesday they will try again to remove the catheter.So hopefully it works this time around. I guess that just leaves whether the parkinson's is causing any problems.
I cannot believe Mum & Dad's kitchen is just about done!! They ripped it out on Monday and installed the cabinets that afternoon. The finishing touches to the cabinets happened on Tuesday/Wednesday with handles etc. The plasterer came today and patched up all the bits and pieces (they had to put up new gyprock where the tiles on the walls had been glued on a bit too well!!)
I went over this afternoon to show Amy the kitchen and stayed to clean the cupboards/drawers and start finding a home for all their stuff. It really looks great. Being white the kitchen looks much bigger than the old wood kitchen. Hopefully they will have much greater access to everything now.
We have decided to go ahead with the same company, Caliber Kitchens. So hopefully work will start on our kitchen in 4 weeks. Our problem at the moment is trying to finalise colours in the kitchen as well as floorboard colours to go through the entry, kitchen, family room and hallway. Unfortunately everyone has a differing opinion!
I'll update when there is any further news.
Wednesday 8th September, 2010
Well it's been a very up and down few weeks not only for Luke but for poor Mum.
She had a bladder infection that was being treated by antibiotics. However by Thursday 26th August she was in absolute agony as she hadn't been able to pass urine for quite a while. She went and saw the doctor at 6pm and got sent to the emergency department at the hospital. Mum & Dad waited from 7pm till 11.40pm to get seen to. They put a catheter in and got over 2 litres of urine. She certainly felt instant relief.
By 3am they were ready to let her go however being so cold at that time of the morning and taking into account her age they decided to keep her in overnight and said Dad could go home and get some rest and come back and pick her up at 9am. He didn't sleep at all and went back in, only to find when I called at 11am they were still there. I decided to go into the hospital and let Dad go home and get some sleep. The doctors decided to do an ultrasound and that meant clamping off the catheter and drinking lots of water. We had hoped that when she came back she would be let go at 5pm however the doctors said her output was too much. Mum was getting very frustrated at this point and kept saying you made me drink bottles of water before the ultrasound!
Once again they decided they wanted to keep her overnight to make sure things settled down. So I left about 7pm and Dad went to pick her up the next day.
She came home and within a day had gastro. She felt horrible for about 3 days and to top it all off Dad caught the gastro bug and was throwing up as well as gastric for the next few days. It turns out there was an outbreak of gastro at The Canberra Hospital and a ward was shut down (it was where Mum was). Mum & Dad didn't want me to go over and help in case I picked anything up and passed it on to Luke. So the poor things struggled along by themselves for about a week. I kept passing supplies through the door.
The community nurses attempted to remove the catheter last Wednesday but unfortunately she was unable to pass urine and they put the catheter back in. She is finding this really frustrating as she has to have a bag to carry around with her and it's a bit hard to wear trousers with the bag. Unfortunately more bad news today - they gave her another week with the catheter to try and get the muscles to settle down and stop clamping shut. Unfortunately once again she had no success is going to the toilet naturally so this afternoon the catheter was re-inserted. She will go to the doctors tomorrow to see what can be done from here. There is some thought that maybe Mum's parkinson's tablets are causing the problem. So hopefully they can get to the bottom of the problem and come up with a solution.
Luke has been feeling a bit out of it the past few weeks. He started chemo again last Wednesday after being put on hold for a week. He has been taking chemo tablets daily and going in for an injection of Cytarabine from last Wednesday to Sunday. We went in on Monday to see Dipti however we don't quite know what the problem is however she has extended her leave until October. So we have another month without Luke's specialist. Raj, Luke's resident doctor has been really good and will look after him for the next month with consultation through one of the other haematologist specialists. Luke was due to have another 5 day round of Cytarabine starting tomorrow however his immune system has plummeted in the last few days and a decision was made today to postpone this till Monday. His neutrophils have dropped to 0.4 so he is neutropenic and as mentioned his immune system is very low. He was also due to have a lumbar puncture with chemo inserted into the spine tomorrow however there was a problem booking this in with imaging (he has this done under x-ray) so this has been pushed back to Friday.
The other weekend Murray and I went along to the University open days. Luke was neutropenic so he couldn't go out in such a public place. It was quite interested walking around all the stalls. We sat in and listened to a few talks at University of Canberra and Australian National University. Luke will be trying to do a Bachelor of Information Technology. He loves his computers and would like to continue in this field. We have been extremely lucky with his college helping him out. He has received an exemption from sitting the AST exams (these are taking place this week) and go towards their university entry score. By having an exemption Luke's university entry score will be worked out based on his Year 11 and 12 work. The college is also assisting Luke by applying to gain entry to University of Canberra via a principal's recommendation. This means that the principal can put forward students that he feels would benefit going to university that might not get such a good score via exams for various reasons. We have put in Luke's university applications that are due by the end of September and have put the principal's recommendation course as his first preference. He is then applying for other preferences based on the university score he will achieve. So hopefully he get's into some sort of IT course as he should be able to manage this next year being on maintenance chemo.
Murray and I have been busy planning our new kitchen. We are just about sorted and hope in the next few days to get the final plan and quote and get things underway. We have both got 5 weeks off from the end of September and all of October off. This time will be used to pull up the old tiles through the main part of the house and probably put floating laminated timber floorboards down instead. I also have quite a bit of painting to do and of course we hope the kitchen will go in during this time.
Mum and Dad have beat us to it and will be getting their new kitchen installed from next Monday. Murray and I will go over on Saturday and pack up everything in readiness. It will be great for them to have the new kitchen as they just cannot bend down to get into the back of cupboards any longer and will have better access via drawers.
Better sign off and get to bed. I'll be in touch when we have any further news.
She had a bladder infection that was being treated by antibiotics. However by Thursday 26th August she was in absolute agony as she hadn't been able to pass urine for quite a while. She went and saw the doctor at 6pm and got sent to the emergency department at the hospital. Mum & Dad waited from 7pm till 11.40pm to get seen to. They put a catheter in and got over 2 litres of urine. She certainly felt instant relief.
By 3am they were ready to let her go however being so cold at that time of the morning and taking into account her age they decided to keep her in overnight and said Dad could go home and get some rest and come back and pick her up at 9am. He didn't sleep at all and went back in, only to find when I called at 11am they were still there. I decided to go into the hospital and let Dad go home and get some sleep. The doctors decided to do an ultrasound and that meant clamping off the catheter and drinking lots of water. We had hoped that when she came back she would be let go at 5pm however the doctors said her output was too much. Mum was getting very frustrated at this point and kept saying you made me drink bottles of water before the ultrasound!
Once again they decided they wanted to keep her overnight to make sure things settled down. So I left about 7pm and Dad went to pick her up the next day.
She came home and within a day had gastro. She felt horrible for about 3 days and to top it all off Dad caught the gastro bug and was throwing up as well as gastric for the next few days. It turns out there was an outbreak of gastro at The Canberra Hospital and a ward was shut down (it was where Mum was). Mum & Dad didn't want me to go over and help in case I picked anything up and passed it on to Luke. So the poor things struggled along by themselves for about a week. I kept passing supplies through the door.
The community nurses attempted to remove the catheter last Wednesday but unfortunately she was unable to pass urine and they put the catheter back in. She is finding this really frustrating as she has to have a bag to carry around with her and it's a bit hard to wear trousers with the bag. Unfortunately more bad news today - they gave her another week with the catheter to try and get the muscles to settle down and stop clamping shut. Unfortunately once again she had no success is going to the toilet naturally so this afternoon the catheter was re-inserted. She will go to the doctors tomorrow to see what can be done from here. There is some thought that maybe Mum's parkinson's tablets are causing the problem. So hopefully they can get to the bottom of the problem and come up with a solution.
Luke has been feeling a bit out of it the past few weeks. He started chemo again last Wednesday after being put on hold for a week. He has been taking chemo tablets daily and going in for an injection of Cytarabine from last Wednesday to Sunday. We went in on Monday to see Dipti however we don't quite know what the problem is however she has extended her leave until October. So we have another month without Luke's specialist. Raj, Luke's resident doctor has been really good and will look after him for the next month with consultation through one of the other haematologist specialists. Luke was due to have another 5 day round of Cytarabine starting tomorrow however his immune system has plummeted in the last few days and a decision was made today to postpone this till Monday. His neutrophils have dropped to 0.4 so he is neutropenic and as mentioned his immune system is very low. He was also due to have a lumbar puncture with chemo inserted into the spine tomorrow however there was a problem booking this in with imaging (he has this done under x-ray) so this has been pushed back to Friday.
The other weekend Murray and I went along to the University open days. Luke was neutropenic so he couldn't go out in such a public place. It was quite interested walking around all the stalls. We sat in and listened to a few talks at University of Canberra and Australian National University. Luke will be trying to do a Bachelor of Information Technology. He loves his computers and would like to continue in this field. We have been extremely lucky with his college helping him out. He has received an exemption from sitting the AST exams (these are taking place this week) and go towards their university entry score. By having an exemption Luke's university entry score will be worked out based on his Year 11 and 12 work. The college is also assisting Luke by applying to gain entry to University of Canberra via a principal's recommendation. This means that the principal can put forward students that he feels would benefit going to university that might not get such a good score via exams for various reasons. We have put in Luke's university applications that are due by the end of September and have put the principal's recommendation course as his first preference. He is then applying for other preferences based on the university score he will achieve. So hopefully he get's into some sort of IT course as he should be able to manage this next year being on maintenance chemo.
Murray and I have been busy planning our new kitchen. We are just about sorted and hope in the next few days to get the final plan and quote and get things underway. We have both got 5 weeks off from the end of September and all of October off. This time will be used to pull up the old tiles through the main part of the house and probably put floating laminated timber floorboards down instead. I also have quite a bit of painting to do and of course we hope the kitchen will go in during this time.
Mum and Dad have beat us to it and will be getting their new kitchen installed from next Monday. Murray and I will go over on Saturday and pack up everything in readiness. It will be great for them to have the new kitchen as they just cannot bend down to get into the back of cupboards any longer and will have better access via drawers.
Better sign off and get to bed. I'll be in touch when we have any further news.
Thursday 26 August 2010
Luke's had a bit of a set back. We went in yesterday to start the next phase of chemo – reconsolidation. He had a lumbar puncture and while lying on his back for the required 2 hours we thought he would start up chemo. He is neutropenic at the moment and they have decided his immune system needs to be stronger before they recommence chemo. So it has been postponed till next Wednesday.
It’s a bit difficult at the moment with him being neutropenic and prone to infection. Amy lost her voice on the weekend and her nose started running yesterday, so she has a collection of tissues and a very red nose!
We think Heidi (Murray’s sister) has pneumonia along with cousins also having colds or sinus symptoms. So we need to try and keep him as isolated as possible.
We went in this morning for our usual visit with Luke's specialist, however she is off sick and no-one called to tell us not to bother coming in. So that was a bit of a wasted trip. While Luke is neutropenic if we don't have anything scheduled in the hospital a nurse comes out daily to get a blood sample. This is how they test his blood levels and immune system.
So we'll have fairly quiet week while we all recover!
It’s a bit difficult at the moment with him being neutropenic and prone to infection. Amy lost her voice on the weekend and her nose started running yesterday, so she has a collection of tissues and a very red nose!
We think Heidi (Murray’s sister) has pneumonia along with cousins also having colds or sinus symptoms. So we need to try and keep him as isolated as possible.
We went in this morning for our usual visit with Luke's specialist, however she is off sick and no-one called to tell us not to bother coming in. So that was a bit of a wasted trip. While Luke is neutropenic if we don't have anything scheduled in the hospital a nurse comes out daily to get a blood sample. This is how they test his blood levels and immune system.
So we'll have fairly quiet week while we all recover!
Friday 20th August, 2010
Luke has had a few weeks with very little hospital visits which has been nice.
He hasn't had any chemo since Thursday 12th August. He has however had to take steroid tablets for a week, which has shown an increased appetite - eating non stop like the last time he was on steroids and gaining a moon face again. He did appear to get a bright red rash or pimples all over his face/arms/back. The doctors have said they think it was a reaction to the last dose of blood products for antithrombin III. The rash seems to be not as angry now but still there. Hopefully it will fade in the next few weeks.
He seemed to be going really well and getting out and about, doing a bit of schoolwork but when he finished taking the steroids(Dexamethasone) this Tuesday he has gone downhill. He actually has till next Wednesday 25th without any chemo or tablets - this is sort of a mini break between the re-induction and re-consolidation phase. We think he must be suffering withdrawals from the steroid because his joints, especially his knees are in agony. Whilst he was on the steroids he was waking up at 6.30am every day (which is very unusual for him). Now that he's stopped taking them he is in so much pain he can't really sleep at all during the night. On Wednesday night he came down to us several times during the night saying he was in agony - he took a range of pain killers. Last night wasn't much better - he takes a strong pain killer that is supposed to last 4 hours but it takes about 20 mins to kick in and then he gets about 2 hours relief before he was getting woken up in pain again and needed to wait till he could take another tablet. I've checked with the hospital and we can up his dosage so hopefully tonight will be better for him and he gets some sleep. I keep trying to get him to have a rest during the day but he reckons he can't sleep.
We also found out yesterday that he has just become neutropenic. It seems strange as he hasn't had chemo for a while but I guess everything is catching up with him. So he won't be able to go out to public places for a while just in case he picks up an infection. His hair has started falling out again which is a shame because it had grown back quite well. Once again it isn't all falling out but getting quite thin in coverage. It was enough to make him pull out a hat yesterday when we went to the hospital to see Dipti so it must be worrying him.
They have been having trouble getting blood out of his central line for the past week so yesterday they decided to urakinase the line - which means injecting a protein which breaks up the blood clots that may have formed over the entry point. The nurse explained it like putting draino in the sink to clear the drains!!
He had this done once before in March. It seemed to work and they could get blood from each line afterwards. Hopefully it doesn't reblock again.
It was Murray and my 21st wedding anniversary last Thursday 12th August. As Luke was fine at that stage with no treatment happening we decided that we would head away to Bowral for a break on the Friday night. We decided Luke was old enough to look after Amy and she was old enough to look after him! They had all the family checking up on them over the 2 days also. As it turned out they had a good old time with Luke making a gourmet meal for them both on Friday night followed by bacon and eggs the next morning. We came home to a clean house (very surprising and much appreciated) and lots of shopping dockets for reimbursement for all that they'd bought! Murray and I had a fabulous time just relaxing and wandering around Moss Vale, Bowral, Mittagong and Berrima. We got home Saturday evening with some beautiful fresh bread from Berrima for soup for dinner.
That's about all our news at present. I'll update in a few weeks unless there is any other news in the meantime.
He hasn't had any chemo since Thursday 12th August. He has however had to take steroid tablets for a week, which has shown an increased appetite - eating non stop like the last time he was on steroids and gaining a moon face again. He did appear to get a bright red rash or pimples all over his face/arms/back. The doctors have said they think it was a reaction to the last dose of blood products for antithrombin III. The rash seems to be not as angry now but still there. Hopefully it will fade in the next few weeks.
He seemed to be going really well and getting out and about, doing a bit of schoolwork but when he finished taking the steroids(Dexamethasone) this Tuesday he has gone downhill. He actually has till next Wednesday 25th without any chemo or tablets - this is sort of a mini break between the re-induction and re-consolidation phase. We think he must be suffering withdrawals from the steroid because his joints, especially his knees are in agony. Whilst he was on the steroids he was waking up at 6.30am every day (which is very unusual for him). Now that he's stopped taking them he is in so much pain he can't really sleep at all during the night. On Wednesday night he came down to us several times during the night saying he was in agony - he took a range of pain killers. Last night wasn't much better - he takes a strong pain killer that is supposed to last 4 hours but it takes about 20 mins to kick in and then he gets about 2 hours relief before he was getting woken up in pain again and needed to wait till he could take another tablet. I've checked with the hospital and we can up his dosage so hopefully tonight will be better for him and he gets some sleep. I keep trying to get him to have a rest during the day but he reckons he can't sleep.
We also found out yesterday that he has just become neutropenic. It seems strange as he hasn't had chemo for a while but I guess everything is catching up with him. So he won't be able to go out to public places for a while just in case he picks up an infection. His hair has started falling out again which is a shame because it had grown back quite well. Once again it isn't all falling out but getting quite thin in coverage. It was enough to make him pull out a hat yesterday when we went to the hospital to see Dipti so it must be worrying him.
They have been having trouble getting blood out of his central line for the past week so yesterday they decided to urakinase the line - which means injecting a protein which breaks up the blood clots that may have formed over the entry point. The nurse explained it like putting draino in the sink to clear the drains!!
He had this done once before in March. It seemed to work and they could get blood from each line afterwards. Hopefully it doesn't reblock again.
It was Murray and my 21st wedding anniversary last Thursday 12th August. As Luke was fine at that stage with no treatment happening we decided that we would head away to Bowral for a break on the Friday night. We decided Luke was old enough to look after Amy and she was old enough to look after him! They had all the family checking up on them over the 2 days also. As it turned out they had a good old time with Luke making a gourmet meal for them both on Friday night followed by bacon and eggs the next morning. We came home to a clean house (very surprising and much appreciated) and lots of shopping dockets for reimbursement for all that they'd bought! Murray and I had a fabulous time just relaxing and wandering around Moss Vale, Bowral, Mittagong and Berrima. We got home Saturday evening with some beautiful fresh bread from Berrima for soup for dinner.
That's about all our news at present. I'll update in a few weeks unless there is any other news in the meantime.
Friday 6th August, 2010
Congratulations to Luke!!!! He got his drivers licence today and now has the freedom to roam as he pleases. Although being a Mum, that does scare me just a little!!!!
It's so great to see him achieve something he's wanted for a while. He's been taking lessons with a driving instructor for the past 4 weeks (about 2 lessons a week). In the ACT the driving instructor marks off competencies and do two mini driving reviews followed by a final drive.
I've attached a photo of Luke's car for those who haven't seen it. Last November Murray and I saw this Nissan 300ZX down at the local shops - we had seen it about a month earlier in the same place and had assumed it had sold. We knew Luke wanted some sort of sporty car and when we found out it was in his price range we took a look. He also wanted to learn to drive a manual car and we only have an automatic.
It turned out the guy selling it was about to move houses and did not have space for his 3 cars, plus his wife was trying to get him to sell his mid life crisis car!!!
It's 20 years old however it looks really good and only had 150,000km on it. It drives really well and is a 2 seater, 3 litre, non turbo car. So although it looks and sounds really sporty, I take comfort in the fact that it isn't a turbo car and he can only have 1 other person in the car. The car cost $5000 and it really looks as if it should cost a lot more. Someone Murray knew through work has had 6 x 300ZX's over the years and he said we should have paid at least $8000 for it.
It's so nice to see Luke happy and I know he is going to look after his pride and joy and enjoy driving it. Luke is starting to feel the effects of the chemo. He's getting tired throughout the day quickly and having trouble concentrating for long periods of time on any schoolwork. I dare say his blood levels will start dropping soon and he'll be neutropenic, so he'd better make the most of his time out in the car while he can!! We've had every day this week at hospital. The one day we thought we would have off, we had a call that his fibrinogen level was low so we had to go in and get some cryoprecipitate (a blood product that helps with clotting).
It's so great to see him achieve something he's wanted for a while. He's been taking lessons with a driving instructor for the past 4 weeks (about 2 lessons a week). In the ACT the driving instructor marks off competencies and do two mini driving reviews followed by a final drive.
I've attached a photo of Luke's car for those who haven't seen it. Last November Murray and I saw this Nissan 300ZX down at the local shops - we had seen it about a month earlier in the same place and had assumed it had sold. We knew Luke wanted some sort of sporty car and when we found out it was in his price range we took a look. He also wanted to learn to drive a manual car and we only have an automatic.
It turned out the guy selling it was about to move houses and did not have space for his 3 cars, plus his wife was trying to get him to sell his mid life crisis car!!!
It's 20 years old however it looks really good and only had 150,000km on it. It drives really well and is a 2 seater, 3 litre, non turbo car. So although it looks and sounds really sporty, I take comfort in the fact that it isn't a turbo car and he can only have 1 other person in the car. The car cost $5000 and it really looks as if it should cost a lot more. Someone Murray knew through work has had 6 x 300ZX's over the years and he said we should have paid at least $8000 for it.
It's so nice to see Luke happy and I know he is going to look after his pride and joy and enjoy driving it. Luke is starting to feel the effects of the chemo. He's getting tired throughout the day quickly and having trouble concentrating for long periods of time on any schoolwork. I dare say his blood levels will start dropping soon and he'll be neutropenic, so he'd better make the most of his time out in the car while he can!! We've had every day this week at hospital. The one day we thought we would have off, we had a call that his fibrinogen level was low so we had to go in and get some cryoprecipitate (a blood product that helps with clotting).
Thursday 29th July, 2010
Great news again, Luke is still in remission. It is a very uplifting to know that after 3 cycles of chemo he is still keeping this disease at bay. It's hard to imagine that this all started 6 months ago. After having our world turned upside down, we have all had to adapt and I can truly say we have now settled into our new life of juggling hospital visits, work and life in general. Luke's still got a lot ahead of him. The next 6 months of intensive chemo are going to knock him around, he'll have good days and bad days.
Luke started chemo yesterday. He had a lumbar puncture under x-ray. he also has Methotrexate injected into his spinal fluid at the same time to kill any traces in the spine going to the brain. We had a 10am appointment and as often is the norm, things were running late. So he didn't go down to x-ray till 12. He then should lie on his back for 4 hours after the procedure but he generally feels okay and we left after about 3 hours. During his time waiting on his back he had his other 2 chemos for the day via the central line, Vincristine and Doxorubicin.
He's back on steroids for this cycle, Dexamethasone. This is a different steroid from the one he took during his first cycle. So it will be interesting to see if he gets the moon face and the outrageous appetite he did before! The other chemo drug he will have this cycle is L-Asparaginase. This is the one in the backside that he says feels like an extremely painful bee sting.
He's feeling a bit yuck today. He always does when he starts back on chemo after having a nice break.
I'll update you probably in a few weeks unless there is something else to tell in the meantime.
Luke started chemo yesterday. He had a lumbar puncture under x-ray. he also has Methotrexate injected into his spinal fluid at the same time to kill any traces in the spine going to the brain. We had a 10am appointment and as often is the norm, things were running late. So he didn't go down to x-ray till 12. He then should lie on his back for 4 hours after the procedure but he generally feels okay and we left after about 3 hours. During his time waiting on his back he had his other 2 chemos for the day via the central line, Vincristine and Doxorubicin.
He's back on steroids for this cycle, Dexamethasone. This is a different steroid from the one he took during his first cycle. So it will be interesting to see if he gets the moon face and the outrageous appetite he did before! The other chemo drug he will have this cycle is L-Asparaginase. This is the one in the backside that he says feels like an extremely painful bee sting.
He's feeling a bit yuck today. He always does when he starts back on chemo after having a nice break.
I'll update you probably in a few weeks unless there is something else to tell in the meantime.
Thursday 22nd July 2010
Okay - I know it's been an awfully long time between blogs. That's because we've all been in such a good place at the moment. Luke finished his interim maintenance chemo on the 10th July. This cycle was really kind to him. He was not neutropenic at all and his blood levels didn't drop under levels that required any red blood transfusions or platelets. He did need some blood products, anti thrombin III (this stops clots going to the brain) and cryoprecipitate (to stop bleeding).
We had a few funny situations when Luke was on increased levels of Methotrexate via the IV. To keep your kidneys working properly and to flush out the toxic waste, you are given some folinic acid tablets that need to be taken every 6 hours. I left it to Luke to set his alarm to remind him when his tablets were due. He took his 7am dose correctly, then his 1pm was taken at 2.30pm. When the tablet was due at 7pm, Luke sheepishly came out at 9.30pm and said he'd forgotten to take it. I got really cranky and called the hospital to make sure all would be okay. They said it was fine but to take the next one at 1.30am. So after testing his alarm on the phone several times we all went to bed. I was awoken by Luke at 6am in a panic saying he hadn't taken his tablet at 1.30am!!! I was livid, telling him off and saying I couldn't do everything for him all the time - that he had to take responsibility for these things some time. He took a tablet then. When we were able to call OOS, they laughed and said to come in with the tablets and they'd test his levels to make sure all the methotrexate was out of his system. As Luke and I were about to get into the lift at the hospital, he turned to me and said "wouldn't it be funny if I actually did wake up at 1.30am and took the tablet and didn't remember". He then asked if I had checked how many pills were left in the bottle. We were prescribed 8 tablets and there were 3 left and we had accounted for 4 doses that we knew he had taken.
SO sure enough, Luke HAD woken to the alarm, got out of bed to get the tablet and water then went straight back to bed and didn't remember a thing!!!!!!
Luckily for him all of the blood tests came back fine and his mucking up of times didn't affect anything. We certainly had a good laugh over that one.
Luke has certainly been making the most of feeling well. He's been out with friends quite a bit. Talk about big kids - they have all bought nerf guns (plastic toy guns that shoot out foam bullets) and they've been running around shooting each other at night with LED lights on their guns!!!! Luke has been working on Math's work while school holidays have been on and he's just about finished Term 1's work. He seems to be coping quite well with it. We had a parent/teacher night at the college last night. It was good for Luke to catch up with teachers and see what the plan of attack is for this semester. Luke has been taking driving lessons with an instructor with the hope that in the next few weeks he can get his driver's licence and be able to drive himself around whenever he wants! That's a bit scary but he'll enjoy driving his pride and joy.
Amy had a very quiet and lazy school holidays, spending quite a few days in PJ's.
We went to see the latest Twilight movie and her Aunty said she had the books. Amy hates reading however she has not been able to put these books down. She read the first book in 2 days - which is amazing for her. Amy just called me excited that she finally managed to get an elective subject she wanted to do. She was originally put into Advanced Science (which really is not her cup of tea) and she has now gotten into Media and Photography.
I took some flex time off work for the holidays. As we won't be spending money on any holidays in a hurry, we have decided to renovate our kitchen. So much of my time off was spent researching various things. We are going to get some quotes/designs done in the next few weeks and hopefully during the next holidays in Sep/Oct get the kitchen put in. Luke will have just finished the next chemo cycle so it should be good timing. We will also need to replace the flooring throughout the kitchen/family rooms so it will mean time off for Murray and I while we do the floor and painting walls etc.
Luke had a bone marrow biopsy yesterday to see if he is still in remission. We won't know the results till next week. He will then start chemo next Wednesday 28th July. This cycle is called Delayed Intensification. It basically takes us back to the beginning with 4 weeks of reinduction and 4 weeks of reconsolidation. So unfortunately knowing what those cycles were like it is going to be much more intensive than this last cycle and his blood levels will definitely drop. So we are all making the most of the good times we are having at the moment.
We had a few funny situations when Luke was on increased levels of Methotrexate via the IV. To keep your kidneys working properly and to flush out the toxic waste, you are given some folinic acid tablets that need to be taken every 6 hours. I left it to Luke to set his alarm to remind him when his tablets were due. He took his 7am dose correctly, then his 1pm was taken at 2.30pm. When the tablet was due at 7pm, Luke sheepishly came out at 9.30pm and said he'd forgotten to take it. I got really cranky and called the hospital to make sure all would be okay. They said it was fine but to take the next one at 1.30am. So after testing his alarm on the phone several times we all went to bed. I was awoken by Luke at 6am in a panic saying he hadn't taken his tablet at 1.30am!!! I was livid, telling him off and saying I couldn't do everything for him all the time - that he had to take responsibility for these things some time. He took a tablet then. When we were able to call OOS, they laughed and said to come in with the tablets and they'd test his levels to make sure all the methotrexate was out of his system. As Luke and I were about to get into the lift at the hospital, he turned to me and said "wouldn't it be funny if I actually did wake up at 1.30am and took the tablet and didn't remember". He then asked if I had checked how many pills were left in the bottle. We were prescribed 8 tablets and there were 3 left and we had accounted for 4 doses that we knew he had taken.
SO sure enough, Luke HAD woken to the alarm, got out of bed to get the tablet and water then went straight back to bed and didn't remember a thing!!!!!!
Luckily for him all of the blood tests came back fine and his mucking up of times didn't affect anything. We certainly had a good laugh over that one.
Luke has certainly been making the most of feeling well. He's been out with friends quite a bit. Talk about big kids - they have all bought nerf guns (plastic toy guns that shoot out foam bullets) and they've been running around shooting each other at night with LED lights on their guns!!!! Luke has been working on Math's work while school holidays have been on and he's just about finished Term 1's work. He seems to be coping quite well with it. We had a parent/teacher night at the college last night. It was good for Luke to catch up with teachers and see what the plan of attack is for this semester. Luke has been taking driving lessons with an instructor with the hope that in the next few weeks he can get his driver's licence and be able to drive himself around whenever he wants! That's a bit scary but he'll enjoy driving his pride and joy.
Amy had a very quiet and lazy school holidays, spending quite a few days in PJ's.
We went to see the latest Twilight movie and her Aunty said she had the books. Amy hates reading however she has not been able to put these books down. She read the first book in 2 days - which is amazing for her. Amy just called me excited that she finally managed to get an elective subject she wanted to do. She was originally put into Advanced Science (which really is not her cup of tea) and she has now gotten into Media and Photography.
I took some flex time off work for the holidays. As we won't be spending money on any holidays in a hurry, we have decided to renovate our kitchen. So much of my time off was spent researching various things. We are going to get some quotes/designs done in the next few weeks and hopefully during the next holidays in Sep/Oct get the kitchen put in. Luke will have just finished the next chemo cycle so it should be good timing. We will also need to replace the flooring throughout the kitchen/family rooms so it will mean time off for Murray and I while we do the floor and painting walls etc.
Luke had a bone marrow biopsy yesterday to see if he is still in remission. We won't know the results till next week. He will then start chemo next Wednesday 28th July. This cycle is called Delayed Intensification. It basically takes us back to the beginning with 4 weeks of reinduction and 4 weeks of reconsolidation. So unfortunately knowing what those cycles were like it is going to be much more intensive than this last cycle and his blood levels will definitely drop. So we are all making the most of the good times we are having at the moment.
Wednesday 30th June 2010
Well it's been pretty quiet on the home front. Luke's blood levels have remained stable and he hasn't been neutropenic yet, which is a good thing. He is currently on an interim maintenance chemo which seems to be a lot kinder to him. He's certainly been making the most of being able to get out of the house. We've been to the movies a few times. The other weekend, Murray and Luke saw the A-Team while Amy and I went to Shrek 3D. Both movies were good. Then this weekend Luke ditched us to go with his friends to see Toy Story 3 (Murray, Amy and I went to a different session). What a great movie - very funny in places. Luke has also been over to friends places several nights, playing X-Box,a boardgame - Risk, and Poker. Mind you his latest escapade saw him walking in the door at 2am!! He tells me they lost track of time as they were so engrossed in the X-Box tournament they were playing and got a shock when they saw how late it was. I guess when you're 17 and some of your friends are 18, I have to let the strings loose sometime!! He'd just better not do that too often as I laid awake tossing and turning, waiting for the door to open - not good when you have to wake up a few hours later to go to work. Murray naturally heard nothing!!
Luke managed to hand in the assessment item requirements for college for the semester. So at least he has caught up with 3 of his 5 subjects. He didn't manage to get IT Programming done or Maths. He is hoping to catch up with these over the next 3 week break that the college has and into next term.
We are heading into the hospital this afternoon for a big day of chemo. He has 2 drugs via the central line (one of these takes about 2 hours to go through). Then he has a lumbar puncture under x-ray with chemo injected into his spine. This is booked for 4pm so it could be a late evening, as depending on the doctor or nurse you speak to he should lie on his back for 2 to 4 hours after the procedure.
It's Dad's birthday today. HAPPY BIRTHDAY. As chemo will finish so late today we won't be able to go out for dinner. Luke and I are going over for lunch before heading into the hospital. We'll have to do something for Dad on the weekend.
Luke has another injection on Friday followed by a week's break then chemo via the central line on the 10th July. This will then end the current chemo cycle and he'll have a few weeks break before having a bone marrow biopsy. So I probably won't have much to tell in the next few weeks.
The next round of chemo will probably start up again at the beginning of August (dates still to be confirmed). This cycle goes back to the start with a reinduction and reconsolidation phase for 8 weeks. These cycles are very intense so he'll probably be not so good during that period.
I'll be in touch when I next have any news.
Luke managed to hand in the assessment item requirements for college for the semester. So at least he has caught up with 3 of his 5 subjects. He didn't manage to get IT Programming done or Maths. He is hoping to catch up with these over the next 3 week break that the college has and into next term.
We are heading into the hospital this afternoon for a big day of chemo. He has 2 drugs via the central line (one of these takes about 2 hours to go through). Then he has a lumbar puncture under x-ray with chemo injected into his spine. This is booked for 4pm so it could be a late evening, as depending on the doctor or nurse you speak to he should lie on his back for 2 to 4 hours after the procedure.
It's Dad's birthday today. HAPPY BIRTHDAY. As chemo will finish so late today we won't be able to go out for dinner. Luke and I are going over for lunch before heading into the hospital. We'll have to do something for Dad on the weekend.
Luke has another injection on Friday followed by a week's break then chemo via the central line on the 10th July. This will then end the current chemo cycle and he'll have a few weeks break before having a bone marrow biopsy. So I probably won't have much to tell in the next few weeks.
The next round of chemo will probably start up again at the beginning of August (dates still to be confirmed). This cycle goes back to the start with a reinduction and reconsolidation phase for 8 weeks. These cycles are very intense so he'll probably be not so good during that period.
I'll be in touch when I next have any news.
Friday 18th June 2010
I've just had a call from a friend who has reminded me that I haven't done a blog!!!
Luke's had a better end to the week than the start. He was still feeling headachy and sick in the stomach at the end of last week into the long weekend. However he is much better this week and has been eating okay again.
Last weekend was a long weekend and on the Monday, Murray's sister Heidi called and said the family was going go-carting. Luke and Amy thought that would be a bit of fun so off we went also. I watched everyone have a good time - the boy's were all very competitive!!
Luke has been getting stuck into some school assessment items. He's got through quite a bit which is good considering how he had been feeling, and considering he's been catching up.
Luke had chemo on Sunday and has had a mini break. He goes back this Sunday for the next dose and unfortunately it is the drug that we think is making him sick. He hasn't had Methotrexate via the central line before (only injected when he has the lumbar puncture) and unfortunately they keep increasing the dosage as this cycle goes on making it more toxic. He's also got a lumbar puncture next week. So we are back to a busy week and fingers crossed his body is used to the chemo again and he won't get sick.
Everyone else is doing okay. Amy got over her cold and luckily no one else has caught it. Murray went to Brisbane for work on Wednesday and got back late last night. He had a good time although the State of Origin results were not in his favour and he found himself in a foreign land!!!!
Have a good weekend.
Luke's had a better end to the week than the start. He was still feeling headachy and sick in the stomach at the end of last week into the long weekend. However he is much better this week and has been eating okay again.
Last weekend was a long weekend and on the Monday, Murray's sister Heidi called and said the family was going go-carting. Luke and Amy thought that would be a bit of fun so off we went also. I watched everyone have a good time - the boy's were all very competitive!!
Luke has been getting stuck into some school assessment items. He's got through quite a bit which is good considering how he had been feeling, and considering he's been catching up.
Luke had chemo on Sunday and has had a mini break. He goes back this Sunday for the next dose and unfortunately it is the drug that we think is making him sick. He hasn't had Methotrexate via the central line before (only injected when he has the lumbar puncture) and unfortunately they keep increasing the dosage as this cycle goes on making it more toxic. He's also got a lumbar puncture next week. So we are back to a busy week and fingers crossed his body is used to the chemo again and he won't get sick.
Everyone else is doing okay. Amy got over her cold and luckily no one else has caught it. Murray went to Brisbane for work on Wednesday and got back late last night. He had a good time although the State of Origin results were not in his favour and he found himself in a foreign land!!!!
Have a good weekend.
Wednesday 9th June 2010
Sorry I've just realised I haven't done a blog entry since last Monday.
Luke started Interim maintenance chemo last Monday and by Wednesday, after having had such a nice break from chemo, he felt rotten and it hit him pretty hard. It's amazing how the body adapts so quickly to having poison in it.
This time round he is getting a few fuzzy heads. Today he came home from chemo with a throbbing headache and proceeded to throw up before heading to bed for a sleep. It's very unlike Luke to sleep during the day so he obviously needed it.
He's back at the hospital tomorrow for two lots of chemo via the central line. One of the drugs keeps increasing every 10 days in intensity so I'm hoping he handles it okay.
At this stage his blood levels are all fine and just within a normal person's range. I'm sure it won't be too long before these drop.
He has been getting stuck into a bit of school work. He's running out of time to get some assessment items in but hopefully he'll get them finished in time.
Amy has been home sick from Thursday last week to yesterday with a really bad cold. It's been difficult trying to keep her a little isolated from Luke. She's been wearing a mask whenever she's been near him and the can of Glen 20 has been working overtime - much to everyone's hate of the smell of it!!
She was very bored and we borrowed a puzzle from 'the Pears' - our neighbour's up the road. It was a lovely old fashioned Pears soap puzzle. It certainly kept her entertained and she even became obsessive about finishing it!
So far the rest of us have avoided getting sick but time will tell.
I'll update you again some time next week.
Luke started Interim maintenance chemo last Monday and by Wednesday, after having had such a nice break from chemo, he felt rotten and it hit him pretty hard. It's amazing how the body adapts so quickly to having poison in it.
This time round he is getting a few fuzzy heads. Today he came home from chemo with a throbbing headache and proceeded to throw up before heading to bed for a sleep. It's very unlike Luke to sleep during the day so he obviously needed it.
He's back at the hospital tomorrow for two lots of chemo via the central line. One of the drugs keeps increasing every 10 days in intensity so I'm hoping he handles it okay.
At this stage his blood levels are all fine and just within a normal person's range. I'm sure it won't be too long before these drop.
He has been getting stuck into a bit of school work. He's running out of time to get some assessment items in but hopefully he'll get them finished in time.
Amy has been home sick from Thursday last week to yesterday with a really bad cold. It's been difficult trying to keep her a little isolated from Luke. She's been wearing a mask whenever she's been near him and the can of Glen 20 has been working overtime - much to everyone's hate of the smell of it!!
She was very bored and we borrowed a puzzle from 'the Pears' - our neighbour's up the road. It was a lovely old fashioned Pears soap puzzle. It certainly kept her entertained and she even became obsessive about finishing it!
So far the rest of us have avoided getting sick but time will tell.
I'll update you again some time next week.
Monday 31st May 2010
Great news - Luke is still in remission after the last cycle of chemo.
It's great to know that he is responding so well to the treatment. One of the bone marrow samples went to Sydney where they test for minute traces of leukaemia. Apparently this was all clear. The only test they do not have a result of is a cryogenetics test. This is to see if there are any abnormal chromosones that have returned. This will take a bit longer to get the results of but all indications are that it should also be clear.
So today Luke started the next round of chemo. This cycle will go for 7 weeks. He was due to have a lumbar puncture at 12.30.He has the lumbar punctures under xray now as they had trouble last time due to scar tissue build up. The xray guides them to the correct place in the spine. Murray and Luke got there at 11.45 and when it was time to go down to imaging the chemo drug needed to inject in his spine wasn't ready so they missed that appointment slot. They sat around waiting for a timeslot to become available but later in the afternoon the xray machine broke down. There was then talk that they would do the lumbar puncture manually on the ward as per the early days - but they decided against it. So the plan at this stage is that the lumbar puncture is now booked for 9.30am tomorrow morning under xray (assuming they have fixed the machine!!). The boys ended up walking in the door at 6.30pm as they then had to wait around for his normal chemo drugs via his central line. He is getting vincristine and methotrexate.
I've just remember on the last blog there was mention that we were moving to ward 14A and that posed problems with blood tests and chemo on weekends. As it turned out when we saw the doctor last Thursday she said the decision had gone full circle and that we would be staying on ward 14B in room 22 for chemo and under OOS (Oncology Outreach service). It apparently was too hard to work out the logistics of Luke's protocol around Monday to Friday hours. So it was best to keep him where he was and with what was working.
Time to get to bed .... I'll update you next week.
It's great to know that he is responding so well to the treatment. One of the bone marrow samples went to Sydney where they test for minute traces of leukaemia. Apparently this was all clear. The only test they do not have a result of is a cryogenetics test. This is to see if there are any abnormal chromosones that have returned. This will take a bit longer to get the results of but all indications are that it should also be clear.
So today Luke started the next round of chemo. This cycle will go for 7 weeks. He was due to have a lumbar puncture at 12.30.He has the lumbar punctures under xray now as they had trouble last time due to scar tissue build up. The xray guides them to the correct place in the spine. Murray and Luke got there at 11.45 and when it was time to go down to imaging the chemo drug needed to inject in his spine wasn't ready so they missed that appointment slot. They sat around waiting for a timeslot to become available but later in the afternoon the xray machine broke down. There was then talk that they would do the lumbar puncture manually on the ward as per the early days - but they decided against it. So the plan at this stage is that the lumbar puncture is now booked for 9.30am tomorrow morning under xray (assuming they have fixed the machine!!). The boys ended up walking in the door at 6.30pm as they then had to wait around for his normal chemo drugs via his central line. He is getting vincristine and methotrexate.
I've just remember on the last blog there was mention that we were moving to ward 14A and that posed problems with blood tests and chemo on weekends. As it turned out when we saw the doctor last Thursday she said the decision had gone full circle and that we would be staying on ward 14B in room 22 for chemo and under OOS (Oncology Outreach service). It apparently was too hard to work out the logistics of Luke's protocol around Monday to Friday hours. So it was best to keep him where he was and with what was working.
Time to get to bed .... I'll update you next week.
Wednesday 26th May 2010
Luke had the bone marrow biopsy on Monday and all went smoothly. We probably won't know the results of whether he is still in remission till later in the week/early next week.
Although Luke has been at home since 24 February we have still be classed as an in-patient of ward 14B and fall under OOS (Oncology Outreach service). Therefore we would go into the hospital regularly for chemo treatments and on the days that we didn't need to go into the hospital for treatment, a nurse would come out to our home to take Luke's blood samples.
There is talk that Luke will be discharged tomorrow. Chemo is due to recommence again next Monday 31st May. He will be on an Interim Maintenance I plan for 7 weeks.
There is also talk that for this round of chemo, Luke will be treated as an out-patient and receive treatment in ward 14A. This means we will still go into the hospital for chemo. What will change is the taking of blood. They have initially said that they do not like to take blood on the 14A ward so we would need to go to pathology for blood samples. However in pathology they can't take his blood from his hickmans central line - they would need to jab him in the arm. This doesn't make much sense as he has a fully functioning central line that blood can be taken from rather than turning his arm into a multitude of pin pricks, especially as the majority of times he needs daily bloods. So I will have to discuss this further with the doctors when we go in tomorrow. The only other difference with going to 14A as an out patient is that we will need to pay for Luke's prescription drugs such as his anti fungal and anti viral tablets that he takes daily. Previously these have all been supplied.
Luke has had a good week as his blood levels have all improved considerable and he has a bit more energy and colour. We are making the most of the time that he is out of neutropenia. He has had friends over and we've been out to dinner and the movies. The boys went and saw Ironman 2 and Amy and I went to see When in Rome.
Although Luke has been well enough to go to school this week, we figure there is not much point as he is a term behind the others. It is best for Luke to stay home and make the most of the times when he is well to catch up on the work he has missed. He has been doing a bit of school work (mainly 3D animation which he enjoys!!) I'm hoping he can get the English essay done by the end of this week and then start of some other assessment items.
Amy has been off school sick for the past few days with a bad headache. It seems to be better now.
I had a good day at work yesterday as I found out I had received the promotion up to the next level in the public service. So all the heartache of getting my application in during early March was worthwhile, even though it was the last thing I wanted to do at the time. I must say a big thank you to Mandy, my manager. Without her guidance and support over the last 3 months and especially encouraging me with my application I wouldn't have gotten this result. While I'm at it, I need to say a big thank you to my L&D team and everyone else at work for their continued support. It really makes it enjoyable to go to work and it takes my mind off things for the few days that I am at work.
I'm sure Murray feels the same gratitude towards everyone at his work.
It was Luke's cousin, Emma's, 13th birthday today. So we went over to her place for a lovely dinner. It is also Luke's oldest cousin, Matthew's, 18th birthday this Friday 28th May. Matthew is the oldest child in the Airey family. I have no idea where the years go. Matthew lives in Umina, Gosford - about 4-5 hours from Canberra, so unfortunately we won't get to catch up with him. He knows we are thinking of him though and wish him a very happy birthday!
I will keep you posted as to what happens with discussions with the doctors about this next round of chemo, and his bone marrow biopsy results next week.
Although Luke has been at home since 24 February we have still be classed as an in-patient of ward 14B and fall under OOS (Oncology Outreach service). Therefore we would go into the hospital regularly for chemo treatments and on the days that we didn't need to go into the hospital for treatment, a nurse would come out to our home to take Luke's blood samples.
There is talk that Luke will be discharged tomorrow. Chemo is due to recommence again next Monday 31st May. He will be on an Interim Maintenance I plan for 7 weeks.
There is also talk that for this round of chemo, Luke will be treated as an out-patient and receive treatment in ward 14A. This means we will still go into the hospital for chemo. What will change is the taking of blood. They have initially said that they do not like to take blood on the 14A ward so we would need to go to pathology for blood samples. However in pathology they can't take his blood from his hickmans central line - they would need to jab him in the arm. This doesn't make much sense as he has a fully functioning central line that blood can be taken from rather than turning his arm into a multitude of pin pricks, especially as the majority of times he needs daily bloods. So I will have to discuss this further with the doctors when we go in tomorrow. The only other difference with going to 14A as an out patient is that we will need to pay for Luke's prescription drugs such as his anti fungal and anti viral tablets that he takes daily. Previously these have all been supplied.
Luke has had a good week as his blood levels have all improved considerable and he has a bit more energy and colour. We are making the most of the time that he is out of neutropenia. He has had friends over and we've been out to dinner and the movies. The boys went and saw Ironman 2 and Amy and I went to see When in Rome.
Although Luke has been well enough to go to school this week, we figure there is not much point as he is a term behind the others. It is best for Luke to stay home and make the most of the times when he is well to catch up on the work he has missed. He has been doing a bit of school work (mainly 3D animation which he enjoys!!) I'm hoping he can get the English essay done by the end of this week and then start of some other assessment items.
Amy has been off school sick for the past few days with a bad headache. It seems to be better now.
I had a good day at work yesterday as I found out I had received the promotion up to the next level in the public service. So all the heartache of getting my application in during early March was worthwhile, even though it was the last thing I wanted to do at the time. I must say a big thank you to Mandy, my manager. Without her guidance and support over the last 3 months and especially encouraging me with my application I wouldn't have gotten this result. While I'm at it, I need to say a big thank you to my L&D team and everyone else at work for their continued support. It really makes it enjoyable to go to work and it takes my mind off things for the few days that I am at work.
I'm sure Murray feels the same gratitude towards everyone at his work.
It was Luke's cousin, Emma's, 13th birthday today. So we went over to her place for a lovely dinner. It is also Luke's oldest cousin, Matthew's, 18th birthday this Friday 28th May. Matthew is the oldest child in the Airey family. I have no idea where the years go. Matthew lives in Umina, Gosford - about 4-5 hours from Canberra, so unfortunately we won't get to catch up with him. He knows we are thinking of him though and wish him a very happy birthday!
I will keep you posted as to what happens with discussions with the doctors about this next round of chemo, and his bone marrow biopsy results next week.
Monday 17th May 2010
A very quick update to let you know that the bone marrow biopsy that was scheduled for today has been postponed. Luke's blood levels have not recovered quickly enough to warrant the biopsy today so they are allowing a bit more time. Luke is still neutropenic. I worked out the other day that Luke has been neutropenic for 75 days out of 108 days since he was diagnosed. Breaking that down even further: that's 30 days confined to the hospital upon diagnosis with 19 of those days in neutropenia, followed by 78 days at home with 44 days of hospital visits for various treatments; 56 of those days were in neutropenia! (Neutropenia means he is prone to pick up infections easily and not allowed in public places and needs to watch what he eats - for example: no salads or fresh vegetables - they need to be cooked thoroughly)
The biopsy will now be held on Monday 24th May. We should have the results about 3 days later.
His next round of chemo will probably start on Monday 31st May. This will be a 7 week Interim Maintenance chemo.
Although Luke's bloods haven't recovered totally he certainly has got some colour back and feeling a lot better. He must be feeling better because he's annoying his sister again!!!
It's nice for him to have a bit of a longer break as it will give him chance to do a bit of school work and catch up with friends.
I'll update you all again next week after the bone marrow biopsy.
The biopsy will now be held on Monday 24th May. We should have the results about 3 days later.
His next round of chemo will probably start on Monday 31st May. This will be a 7 week Interim Maintenance chemo.
Although Luke's bloods haven't recovered totally he certainly has got some colour back and feeling a lot better. He must be feeling better because he's annoying his sister again!!!
It's nice for him to have a bit of a longer break as it will give him chance to do a bit of school work and catch up with friends.
I'll update you all again next week after the bone marrow biopsy.
Friday 7th May 2010
Yay!!!!! Luke finished this round of chemo on Wednesday.
During the week he had to have another blood transfusion and an anti-thrombin injection to stop clotting. His blood levels still aren't recovering yet by themselves and he is still neutropenic. It's now been 25 days that he has been prone to infection and when it's best for him to avoid public places.
So now we just need to wait for his blood levels to recover from the chemo. They should start going up soon. The nurse will continue to come daily and take blood samples. He is booked in for a bone marrow biopsy on Monday 17th May and we should get results by the end of that week as to if he has remained in remission. That's the plan. He should then start chemo about 7 - 10 days after the bone marrow biopsy. So all up we are hoping for a nice 2-3 week break from chemo.
Murray and I went to Luke's college today to discuss what is happening with Luke's schooling. He finds it hard to concentrate for long periods and feels really weak. He told me the other day, even though he looks okayish on the outside he feels like an 80 year old on the inside. (I'm sure he doesn't mean any disrespect to anyone near that age but I think it's a good illustration of how he feels).
He has been dabbling in bits and pieces and is ready to do some assessment items. He still hasn't looked at Maths though (don't blame him) so we are planning on getting a tutor to assist him with that. At this stage as all of his subjects are semester subjects he will need to complete at least half the assessment items to get a pro-rata mark. The college has been great and very supportive so we are hopeful that Luke will be able to get through Year 12 okay.
So as there will be nothing to report possibly for a few weeks - I think I'll also have a break from blogging. I'll let you know the outcome of the bone marrow biopsy when we find out.
Happy Mother's Day for Sunday to all the Mum's out there.
During the week he had to have another blood transfusion and an anti-thrombin injection to stop clotting. His blood levels still aren't recovering yet by themselves and he is still neutropenic. It's now been 25 days that he has been prone to infection and when it's best for him to avoid public places.
So now we just need to wait for his blood levels to recover from the chemo. They should start going up soon. The nurse will continue to come daily and take blood samples. He is booked in for a bone marrow biopsy on Monday 17th May and we should get results by the end of that week as to if he has remained in remission. That's the plan. He should then start chemo about 7 - 10 days after the bone marrow biopsy. So all up we are hoping for a nice 2-3 week break from chemo.
Murray and I went to Luke's college today to discuss what is happening with Luke's schooling. He finds it hard to concentrate for long periods and feels really weak. He told me the other day, even though he looks okayish on the outside he feels like an 80 year old on the inside. (I'm sure he doesn't mean any disrespect to anyone near that age but I think it's a good illustration of how he feels).
He has been dabbling in bits and pieces and is ready to do some assessment items. He still hasn't looked at Maths though (don't blame him) so we are planning on getting a tutor to assist him with that. At this stage as all of his subjects are semester subjects he will need to complete at least half the assessment items to get a pro-rata mark. The college has been great and very supportive so we are hopeful that Luke will be able to get through Year 12 okay.
So as there will be nothing to report possibly for a few weeks - I think I'll also have a break from blogging. I'll let you know the outcome of the bone marrow biopsy when we find out.
Happy Mother's Day for Sunday to all the Mum's out there.
Friday 30th April 2010
Well where did April go to?
I can't believe it's been 3 months since Luke was first diagnosed with leukaemia and we are so proud about how Luke has handled the situation. Most of us can only imagine what he must be feeling and going through. From the outside he may look fine and healthy, but inside his body is be screaming out a whole different story.
Luke's blood levels have been all over the shop at the moment due to the chemo. He has had 2 more blood transfusions since last Wednesday. 2 units last Thursday and 2 more on Sunday. What a little vampire! Unfortunately this means about 6 hours sat at the hospital.Last Saturday and this Thursday he needed some platelets to stop him bruising.
Today was a bit of a disjointed day. We went in to get his chemo via the central line - this only takes about 15 minutes to run through. We left the hospital with me saying that was one of the shortest visits I've had with Luke in a long time. We came home and I ducked out to the shops to get some much needed food in the house. I'd just entered the first aisle and got a call from Luke saying the hospital had just called and said we needed to go back in to get an anti thrombin III injection. This injection is to stop blood clots going to the brain. So we ended up back in the hospital for about an hour.
Lukes blood levels over the week have been:
Haemaglobin: 22Apr-69 /23Apr-81 /24Apr-76 /25Apr-76 /26Apr-99 /27Apr-94 /28Apr-87 /29Apr-89 /30Apr-84
White Cell Count: 22Apr-0.6 /23Apr-0.7 /24Apr-0.7 /25Apr-0.8 /26Apr-0.9 /27Apr-1.1 /28Apr-1.4 /29Apr-1.0 /30Apr-1.2
Platelets: 22Apr-28 /23Apr-10 /24Apr-8 /25Apr-23 /26Apr-18 /27Apr-17 /28Apr-12 /29Apr-16 /30Apr-49
Neutrophils: 22Apr-0.24 /23Apr-0.23 /24Apr-0.16 /25Apr-0.21 /26Apr-0.56 /27Apr-0.37 /28Apr-0.46 /29Apr-0.45 /30Apr-0.45
Luke has really had a long period of being neutropenic this cycle - we are now up to day 18 where he needs to avoid public places to avoid infection.
However we are on the home stretch for this cycle. He only has 2 more "bee stings" on Sunday and Wednesday. He will then be left alone till the 17th May to let his blood recover. Then he will have his bone marrow biopsy to see if he is still in remission. I'm not sure how long after the biopsy he will have before he starts the next cycle - Interim maintenance that will go for 7 weeks.
So we are really hopeful that he will have a good 2-3 weeks break from any chemo.
I mentioned on the last blog that my Aunt and Uncle who were stranded in Singapore might have to return to Australia due to the volcano. They did come back last Thursday 22nd April. When they arrived it still appeared that the earliest that they would be able to get back to the UK was the 7th May. So I contacted a friend at Qantas (I used to work for Qantas) and they were able to assist them in getting a flight back home yesterday - 29th April. It was marvellous to see them again and I know Mum & Dad really enjoyed having them stay again - especially because Mal and Les went to work and painted a fence and gardened for them! Talk about slave labour!! Mal and Les assured us they enjoyed doing it!
Talk to you all next week....
I can't believe it's been 3 months since Luke was first diagnosed with leukaemia and we are so proud about how Luke has handled the situation. Most of us can only imagine what he must be feeling and going through. From the outside he may look fine and healthy, but inside his body is be screaming out a whole different story.
Luke's blood levels have been all over the shop at the moment due to the chemo. He has had 2 more blood transfusions since last Wednesday. 2 units last Thursday and 2 more on Sunday. What a little vampire! Unfortunately this means about 6 hours sat at the hospital.Last Saturday and this Thursday he needed some platelets to stop him bruising.
Today was a bit of a disjointed day. We went in to get his chemo via the central line - this only takes about 15 minutes to run through. We left the hospital with me saying that was one of the shortest visits I've had with Luke in a long time. We came home and I ducked out to the shops to get some much needed food in the house. I'd just entered the first aisle and got a call from Luke saying the hospital had just called and said we needed to go back in to get an anti thrombin III injection. This injection is to stop blood clots going to the brain. So we ended up back in the hospital for about an hour.
Lukes blood levels over the week have been:
Haemaglobin: 22Apr-69 /23Apr-81 /24Apr-76 /25Apr-76 /26Apr-99 /27Apr-94 /28Apr-87 /29Apr-89 /30Apr-84
White Cell Count: 22Apr-0.6 /23Apr-0.7 /24Apr-0.7 /25Apr-0.8 /26Apr-0.9 /27Apr-1.1 /28Apr-1.4 /29Apr-1.0 /30Apr-1.2
Platelets: 22Apr-28 /23Apr-10 /24Apr-8 /25Apr-23 /26Apr-18 /27Apr-17 /28Apr-12 /29Apr-16 /30Apr-49
Neutrophils: 22Apr-0.24 /23Apr-0.23 /24Apr-0.16 /25Apr-0.21 /26Apr-0.56 /27Apr-0.37 /28Apr-0.46 /29Apr-0.45 /30Apr-0.45
Luke has really had a long period of being neutropenic this cycle - we are now up to day 18 where he needs to avoid public places to avoid infection.
However we are on the home stretch for this cycle. He only has 2 more "bee stings" on Sunday and Wednesday. He will then be left alone till the 17th May to let his blood recover. Then he will have his bone marrow biopsy to see if he is still in remission. I'm not sure how long after the biopsy he will have before he starts the next cycle - Interim maintenance that will go for 7 weeks.
So we are really hopeful that he will have a good 2-3 weeks break from any chemo.
I mentioned on the last blog that my Aunt and Uncle who were stranded in Singapore might have to return to Australia due to the volcano. They did come back last Thursday 22nd April. When they arrived it still appeared that the earliest that they would be able to get back to the UK was the 7th May. So I contacted a friend at Qantas (I used to work for Qantas) and they were able to assist them in getting a flight back home yesterday - 29th April. It was marvellous to see them again and I know Mum & Dad really enjoyed having them stay again - especially because Mal and Les went to work and painted a fence and gardened for them! Talk about slave labour!! Mal and Les assured us they enjoyed doing it!
Talk to you all next week....
Wednesday 21 April 2010
Not much to report. Luke is doing okay but has been neutropenic all week and pretty weak. He had 2 units of blood on Sunday and this meant 6 hours in hospital while they cross checked his blood and the transfusions went through. So when this happens it's pretty boring for him and me. I actually got to read the Sunday paper from cover to cover though which I haven't done in a long time!
Murray and Amy went for their flu injections on Friday (I had mine with work a few weeks ago). But we are finding that we are all having symptoms of a flu - bit blocked up/sore throat but nothing really developing into anything serious. For the last few days Luke has been saying he has a sore throat. Not a great deal we can do to protect him from infections while he is neutropenic - other than pack us all up to live somewhere else and leave him by himself! As someone once told us we can't wrap him in cotton wool all the time and as he is used to 'our' germs, home is the best and safest place for him.
Blood levels for the week are:
Haemaglobin - 14 Apr - 93/15 Apr - 83/17 Apr - 71 /18 Apr - 69/19 Apr - 83
White Blood Cells - 14 Apr - 1.2/15 Apr - 0.6/17 Apr - 0.5/18 Apr - 0.6/19 Apr - 0.6
Platelets - 14 Apr - 166/15 Apr - 133/17 Apr - 90/18 Apr - 90/19 Apr - 69
Neutrophils - 14 Apr - 0.68 / 15 Apr - 0/17 Apr - 0/18 Apr - 0/19 Apr - 0.11
You will notice the 16th and 20th April have no levels. On the 16th he was due to have the nurse come home to take bloods but she was off sick and no-one called to tell us she wouldn't be coming. Yesterday (20th) he went into hospital but they couldn't get blood out of his central line - they didn't seem too concerned and said they'd get it today. We are just waiting on the nurse to come out now.
I'd assume that he may need to have more transfusion of blood and possibly platelets in the next few days.
Mum & Dad got a call last night from her sister who had been over in Australia on holiday. They were on their way back to the UK but got stranded in Singapore due to the volcano. It seems that their only option is to come back to Australia as the first flight they can get on back to the UK is the 6 or 7th May. Whilst it would be good to see Mal and Les again and spend more time with them I hope they manage to get on an earlier flight as it really is a long delay and Les was due back at work last week.
Murray and Amy went for their flu injections on Friday (I had mine with work a few weeks ago). But we are finding that we are all having symptoms of a flu - bit blocked up/sore throat but nothing really developing into anything serious. For the last few days Luke has been saying he has a sore throat. Not a great deal we can do to protect him from infections while he is neutropenic - other than pack us all up to live somewhere else and leave him by himself! As someone once told us we can't wrap him in cotton wool all the time and as he is used to 'our' germs, home is the best and safest place for him.
Blood levels for the week are:
Haemaglobin - 14 Apr - 93/15 Apr - 83/17 Apr - 71 /18 Apr - 69/19 Apr - 83
White Blood Cells - 14 Apr - 1.2/15 Apr - 0.6/17 Apr - 0.5/18 Apr - 0.6/19 Apr - 0.6
Platelets - 14 Apr - 166/15 Apr - 133/17 Apr - 90/18 Apr - 90/19 Apr - 69
Neutrophils - 14 Apr - 0.68 / 15 Apr - 0/17 Apr - 0/18 Apr - 0/19 Apr - 0.11
You will notice the 16th and 20th April have no levels. On the 16th he was due to have the nurse come home to take bloods but she was off sick and no-one called to tell us she wouldn't be coming. Yesterday (20th) he went into hospital but they couldn't get blood out of his central line - they didn't seem too concerned and said they'd get it today. We are just waiting on the nurse to come out now.
I'd assume that he may need to have more transfusion of blood and possibly platelets in the next few days.
Mum & Dad got a call last night from her sister who had been over in Australia on holiday. They were on their way back to the UK but got stranded in Singapore due to the volcano. It seems that their only option is to come back to Australia as the first flight they can get on back to the UK is the 6 or 7th May. Whilst it would be good to see Mal and Les again and spend more time with them I hope they manage to get on an earlier flight as it really is a long delay and Les was due back at work last week.
Tuesday 13th April 2010
I thought I had better give everyone an update on Luke.
We thought he would have been out of hospital on Saturday but unfortunately for some unknown reason they wanted him to stay till Sunday. So he is now back home and very glad to be back in his own bed!
It was Amy's birthday on Sunday and we had a family get together on Saturday for her. That way Amy and I could have a girly shopping day on the Sunday with all of her birthday money. Luke was able to get a leave pass from the hospital for a few hours on the Saturday afternoon.
Luke's not feeling too bad but his energy levels are still really low and his nausea and stomach cramps are coming in waves. They did increase all of his blood levels with various injections and since coming home he has changed to oral antibiotics for the infection. He doesn't appear to have any signs of the infection any longer but has been told to continue the full course of tablets. He has had some friends over the last few days so that has picked him up a bit.
Chemo recommenced on Friday so he only had a 2 day delay in treatment.
However after them building the blood levels up they have certainly dived again with the chemo.
Blood levels over the last few days are:
Haemaglobin - 9 Apr - 95 / 10 Apr - 102 / 11 Apr - 111 / 12 Apr - 104
White Cell count - 9 Apr - 14.5 / 10 Apr - 16.9 / 11 Apr - 7.5 / 12 Apr - 2.6
Platelets - 9 Apr - 237 / 10 Apr - 239 / 11 Apr - 249 / 12 Apr - 221
Neutrophils - 9 Apr - 6.53 / 10 Apr - 13.15 / 11 Apr - 6.95 / 12 Apr - 1.77
Until next time........
We thought he would have been out of hospital on Saturday but unfortunately for some unknown reason they wanted him to stay till Sunday. So he is now back home and very glad to be back in his own bed!
It was Amy's birthday on Sunday and we had a family get together on Saturday for her. That way Amy and I could have a girly shopping day on the Sunday with all of her birthday money. Luke was able to get a leave pass from the hospital for a few hours on the Saturday afternoon.
Luke's not feeling too bad but his energy levels are still really low and his nausea and stomach cramps are coming in waves. They did increase all of his blood levels with various injections and since coming home he has changed to oral antibiotics for the infection. He doesn't appear to have any signs of the infection any longer but has been told to continue the full course of tablets. He has had some friends over the last few days so that has picked him up a bit.
Chemo recommenced on Friday so he only had a 2 day delay in treatment.
However after them building the blood levels up they have certainly dived again with the chemo.
Blood levels over the last few days are:
Haemaglobin - 9 Apr - 95 / 10 Apr - 102 / 11 Apr - 111 / 12 Apr - 104
White Cell count - 9 Apr - 14.5 / 10 Apr - 16.9 / 11 Apr - 7.5 / 12 Apr - 2.6
Platelets - 9 Apr - 237 / 10 Apr - 239 / 11 Apr - 249 / 12 Apr - 221
Neutrophils - 9 Apr - 6.53 / 10 Apr - 13.15 / 11 Apr - 6.95 / 12 Apr - 1.77
Until next time........
Thursday 8th April 2010
We all had a fabulous Easter and did manage to have a few lazy days with some sleep ins and no hospital visits. Murray went to golf on Good Friday, then we all went over to Murray's sisters place for a family get together for lunch. I went to a wedding on Saturday for one of my work colleagues, Bridget, she looked gorgeous and it was lovely to have a night out.
However Luke hit a speed bump on Monday and ended up going into hospital. His temperature over Saturday and Sunday was in the high 37's and we knew that if he got to 38 degrees for more than half and hour he'd need to go into hospital. He was also really nauseous and not eating a great deal. I was catching up with some old friends from Qantas at lunchtime on Monday when Amy called around 3.30pm and said they were on their way to hospital. They put him on antibiotics straight away.
Getting an infection was always a possibility and according the the nurses they were surprised they hadn't seen us earlier. We thought he'd be in overnight but as it turns out he's still there now. He had a chest x-ray that showed a bit of shadowing in one of his lungs. Dr Dipti couldn't hear anything in his lungs so it sounds as if something was brewing and they caught it in time. He has antibiotics every 4 hours over 4 - 5 days. He was also given 2 x blood transfusions and a multitude of other injections to get his blood levels up. So the poor thing was attacked with all sorts on Tuesday/Wednesday and not sleeping very well with all the interruptions through the night. We have been leaving him at about 10.30pm as he seems to cope okay by himself overnight and as he says there is no point two of us not getting sleep.
The doctor saw him Wednesday morning and said that chemo would be put on hold till they controlled his infection and got the neutrophils up. It sounds as if they will start chemo tomorrow as his blood levels have picked up dramatically today and he is feeling and looking much better. So he will be in hospital till at least Saturday. At least his nausea has settled and he was eating a bit more normally today.
For anyone who would like to know here are his blood levels for the past days.
Haemaglobin - 3 Apr - 77 / 4 Apr - 77 / 5 Apr - 78 / 6 Apr - 72 / 7 Apr - 92 / 8 Apr - 90
White Cell Count - 3rd - 0.6 / 4th - 0.9 / 5th - 1.0 / 6th - 1.1 / 7th - 2.0 / 8th - 5.0
Platelets - 3rd - 145 / 4th - 178 / 5th - 226 / 6th - 216 / 7th - 251 / 8th - 259
Neutrophils - 3rd - 0.02 / 4th - 0.02 / 5th - 0.03 / 6th - 0.07 / 7th - 0.42 / 8th - 2.07
So as I said he is much better today and we hope to get him home on the weekend in time for Amy's birthday on Sunday.
However Luke hit a speed bump on Monday and ended up going into hospital. His temperature over Saturday and Sunday was in the high 37's and we knew that if he got to 38 degrees for more than half and hour he'd need to go into hospital. He was also really nauseous and not eating a great deal. I was catching up with some old friends from Qantas at lunchtime on Monday when Amy called around 3.30pm and said they were on their way to hospital. They put him on antibiotics straight away.
Getting an infection was always a possibility and according the the nurses they were surprised they hadn't seen us earlier. We thought he'd be in overnight but as it turns out he's still there now. He had a chest x-ray that showed a bit of shadowing in one of his lungs. Dr Dipti couldn't hear anything in his lungs so it sounds as if something was brewing and they caught it in time. He has antibiotics every 4 hours over 4 - 5 days. He was also given 2 x blood transfusions and a multitude of other injections to get his blood levels up. So the poor thing was attacked with all sorts on Tuesday/Wednesday and not sleeping very well with all the interruptions through the night. We have been leaving him at about 10.30pm as he seems to cope okay by himself overnight and as he says there is no point two of us not getting sleep.
The doctor saw him Wednesday morning and said that chemo would be put on hold till they controlled his infection and got the neutrophils up. It sounds as if they will start chemo tomorrow as his blood levels have picked up dramatically today and he is feeling and looking much better. So he will be in hospital till at least Saturday. At least his nausea has settled and he was eating a bit more normally today.
For anyone who would like to know here are his blood levels for the past days.
Haemaglobin - 3 Apr - 77 / 4 Apr - 77 / 5 Apr - 78 / 6 Apr - 72 / 7 Apr - 92 / 8 Apr - 90
White Cell Count - 3rd - 0.6 / 4th - 0.9 / 5th - 1.0 / 6th - 1.1 / 7th - 2.0 / 8th - 5.0
Platelets - 3rd - 145 / 4th - 178 / 5th - 226 / 6th - 216 / 7th - 251 / 8th - 259
Neutrophils - 3rd - 0.02 / 4th - 0.02 / 5th - 0.03 / 6th - 0.07 / 7th - 0.42 / 8th - 2.07
So as I said he is much better today and we hope to get him home on the weekend in time for Amy's birthday on Sunday.
Friday 2nd April 2010
Luke's had a bit of a flat week. His back from a combination of the lumbar puncture and the injections into his backside has been really sore and stiff. He can't seem to find a comfortable position. On Monday Luke saw Dr Dipti and discussed his back and how he is walking/shuffling like an old man. She sent him for an ultrasound to see how the haematoma was going. It came back okay. Unfortunately this is just one of the side effects of the treatments.
As I predicted last week - last Saturday Luke became neutropenic. He has hit his lowest levels these last few days and really is feeling pretty lousy and quite nauseous. He is spending most of his time in bed watching TV and dozing on and off.
His blood levels for the week are:
Haemaglobin: 27/3 - 99 /28/3 - 96 /29/3 - 101 /30/3 - 93 /31/3 - 84 /1/4 - 85
White Cells: 27/3 - 1.2 /28/3 - 1.2 /29/3 - 1.2 /30/3 - 0.9 /31/3 - 0.7 /1/4 - 0.6
Platelets: 27/3 - 26 /28/3 - 20 /29/3 - 24 /30/3 - 26 /31/3 - 43 / 1/4 - 94
Neutrophils: 27/3 - 0.4 /28/3 - 0.26 /29/3 - 0.26 /30/3 - 0.1 /31/3 - 0.04 /1/4 - 0.02
AS a reminder for normal levels:
Haemaglobin - 130-170
White Cell Count - 3.7 - 11
Platelets - 150-400
Neutrophils - 2 - 7.5
So as you will see Luke's levels are really low. His Haemaglobin has dropped again the last few days after transfusions - so we are on standby that if they get under 80 we will need to go into hospital for some more transfusions.
Luke had platelets given to him on the 31/3 before his last lumbar puncture for this round. Yeah!! This lumbar puncture ran a lot more smoothly than the last one as they went higher up in the spine.
As you will also see Luke's neutrophils are almost non existent. So he is very prone to picking up any infection.
All of these blood levels combined are what is making Luke so lethargic and really not too good this week.
Yesterday we had to go to the hospital for a special blood test for the protein levels. We came back home but got called in that afternoon for an injection. His Antithrmbin III was 64% - it should be 70-145. If left untreated there is a chance of blood clots going to the brain.
Today we went in for his last asparaginase injection into his backside (for a few weeks anyway). So Luke is pleased there are no more lumbar punctures and "bee stings" for a while - and his back may recover soon.
As I mentioned in the last blog - we had my Aunty Mal and Uncle Les come to visit from the UK. They have had a busy few days with Mum & Dad going around sightseeing in Canberra. I would like to have joined them during the day but with Luke we were unable to. They came over Tuesday night and had dinner at our place and then Murray and I went out for dinner with the four of them on Wednesday while Luke's Nan watched over the kids. Mum & Dad are now driving Mal & Les to the Blue Mountains overnight, followed by visiting Kevin in Newcastle and then going to my brother, Stephen's place in Gosford. Mal and Les will then travel by train to Sydney where they will have 4 days sightseeing and then up to Port Douglas for the last part of their journey. Hopefully the weather stays good for them.
We have 4 days of no hospital visits!!! All being well. As I said earlier we may be called in for blood transfusions but we will keep our fingers crossed that we can have a few lazy pyjama days!! The nurse will be coming to take daily blood at our house.
Hope everyone has a nice break over Easter and that you don't eat too much chocolate!! I'll be in touch next Friday.
As I predicted last week - last Saturday Luke became neutropenic. He has hit his lowest levels these last few days and really is feeling pretty lousy and quite nauseous. He is spending most of his time in bed watching TV and dozing on and off.
His blood levels for the week are:
Haemaglobin: 27/3 - 99 /28/3 - 96 /29/3 - 101 /30/3 - 93 /31/3 - 84 /1/4 - 85
White Cells: 27/3 - 1.2 /28/3 - 1.2 /29/3 - 1.2 /30/3 - 0.9 /31/3 - 0.7 /1/4 - 0.6
Platelets: 27/3 - 26 /28/3 - 20 /29/3 - 24 /30/3 - 26 /31/3 - 43 / 1/4 - 94
Neutrophils: 27/3 - 0.4 /28/3 - 0.26 /29/3 - 0.26 /30/3 - 0.1 /31/3 - 0.04 /1/4 - 0.02
AS a reminder for normal levels:
Haemaglobin - 130-170
White Cell Count - 3.7 - 11
Platelets - 150-400
Neutrophils - 2 - 7.5
So as you will see Luke's levels are really low. His Haemaglobin has dropped again the last few days after transfusions - so we are on standby that if they get under 80 we will need to go into hospital for some more transfusions.
Luke had platelets given to him on the 31/3 before his last lumbar puncture for this round. Yeah!! This lumbar puncture ran a lot more smoothly than the last one as they went higher up in the spine.
As you will also see Luke's neutrophils are almost non existent. So he is very prone to picking up any infection.
All of these blood levels combined are what is making Luke so lethargic and really not too good this week.
Yesterday we had to go to the hospital for a special blood test for the protein levels. We came back home but got called in that afternoon for an injection. His Antithrmbin III was 64% - it should be 70-145. If left untreated there is a chance of blood clots going to the brain.
Today we went in for his last asparaginase injection into his backside (for a few weeks anyway). So Luke is pleased there are no more lumbar punctures and "bee stings" for a while - and his back may recover soon.
As I mentioned in the last blog - we had my Aunty Mal and Uncle Les come to visit from the UK. They have had a busy few days with Mum & Dad going around sightseeing in Canberra. I would like to have joined them during the day but with Luke we were unable to. They came over Tuesday night and had dinner at our place and then Murray and I went out for dinner with the four of them on Wednesday while Luke's Nan watched over the kids. Mum & Dad are now driving Mal & Les to the Blue Mountains overnight, followed by visiting Kevin in Newcastle and then going to my brother, Stephen's place in Gosford. Mal and Les will then travel by train to Sydney where they will have 4 days sightseeing and then up to Port Douglas for the last part of their journey. Hopefully the weather stays good for them.
We have 4 days of no hospital visits!!! All being well. As I said earlier we may be called in for blood transfusions but we will keep our fingers crossed that we can have a few lazy pyjama days!! The nurse will be coming to take daily blood at our house.
Hope everyone has a nice break over Easter and that you don't eat too much chocolate!! I'll be in touch next Friday.
Friday 26th March 2010
We have had a busy week. Last Friday 19th, Luke had a lumbar puncture under x-ray. It seemed to go quite well. Although Luke still has had a fair bit of pain in his back throughout the week.
He had another lumbar puncture today which didn't go as well. Even though it was under x-ray they still had trouble finding a spot as he has scar tissue and a hematoma in his back which they aren't concerned about. They ended up going into his spinal fluid a bit higher up and it worked okay. He's really stiff again and we are calling him "Mr Shuffles".
They urakinased Luke's central line and it appears to have worked and blood is now coming through the line so that is great news as we keep hearing of so many people getting infections and having to have them taken out.
Luke's been feeling really lethargic this week and I can understand why when we went into hospital on Wednesday. His haemaglobin had dropped to 66. So they arranged to give him 2x blood transfusions and platelets. So what was meant to be a half hour in hospital for an injection at 12.30pm turned out to be 9 hours while we waited for the initial blood test and transfusions. Murray ended up coming and relieving me at 5.30pm as I had a throbbing headache. So the boys walked in at 10pm last night. We were glad that he had the transfusions though as we had to go up to Sydney the next day.
As it turned out today we went in for his lumbar puncture and they took bloods in the morning before the procedure. When we came back they said his levels were still low (77) so once again we had 2 x blood transfusions and platelets. Another long day at the hospital and we emerged 8 hours later.
His blood levels for the past week have been:
Haemaglobin: 20/3 - 95 / 22/3 - 82 / 24/3 - 66 / 26/3 - 77
White Blood Cells: 20/3 - 4.3 / 22/3 - 4.8 / 24/3 - 2.1 / 26/3 - 1.2
Platelets: 20/3 - 118 / 22/3 - 74 / 24/3 - 31 / 26/3 - 22
Neutrophils: 20/3 - 3.4 / 22/3 - 4.35 / 24/3 - 1.35 / 26/3 - 0.53
The latest blood results today also show neutrophils of 0.53 - this means Luke is just about to tip into neutropenia. So he will be prone to picking up infections very easily. So the best advise is that if you are feeling unwell please do not come and visit Luke at the moment.
So now to update you on the visit to Westmead's Cancer Care Clinic to see the Stem Cell Transplant Specialists. What a long day! We left around 9am and got to Westmead at 1pm. We decided rather than have lunch beforehand (we'd had a snack around 11am) that we would should make sure we got parking and knew where to go for our appointment at 1.30pm. We got in their early and filled out all the paperwork. It got to 1.45pm and I asked if they had any idea how far behind the doctors were running and the ladies at reception said they were still making up the file and that the doctor was aware we were there. At about 1.55pm we got sent to Clinic 3 only to find another waiting room! I think it was about 2.30pm that we got into see the specialist. We left Westmead at 3.30pm (after lunch) and got home around 8pm.
So to the outcome of the meeting: After reading some paperwork and asking some questions he then had a general chat to us. It would appear that Luke is not a suitable candidate for a stem cell transplant at this stage. The reason being that he is responding well to chemotherapy and is in remission. As you know Luke needs to stay on chemotherapy for quite a long time to keep him in remission so a transplant would only become a viable option if he relapsed and the disease returned or if the abnormal chromosones returned and were not responding to chemotherapy. However the Professor did make the comment that one reason that makes it difficult for them to determine whether he is suitable for a transplant is because he had an uncommon grouping of abnormal chromosones - meaning they don't have any historical data against which to gauge their decision.
He did say that he would talk to the other professors at their team meeting on Monday to concur with them and that "his people would talk to our people" to advise the conclusion. At this stage the initial prognosis is a good thing as the Professor went through quite a lot of the risks and complications around a stem cell transplant and it's not something that you would want to rush into.
The other thing he said was that when Luke finishes this consolidation chemo round that he would ask Canberra for a bone marrow biopsy sample to be sent to Sydney to run a sensitive test (that can't be done in Canberra) to test for minimal residual disease. This test will show if there are any minor traces of leukaemia still in the bone marrow. If there are any minor traces or he relapses then they will reassess as to whether a stem cell transplant would be needed. So we really are back to a bit of a waiting game to make sure Luke stays in remission after this round of chemo and to see if any traces show on the test they will run in Sydney. This won't be until around early to mid May when this round of chemo finishes.
I'll update you all in a week unless there is something else to tell in the meantime.
We have Mum's sister, Mal, and her husband Les, coming to visit Australia from the UK next Tuesday. I haven't seen Mal since Murray and I went to England in 1991 and the kids have never met them so that will be great to catch up with them next week.
He had another lumbar puncture today which didn't go as well. Even though it was under x-ray they still had trouble finding a spot as he has scar tissue and a hematoma in his back which they aren't concerned about. They ended up going into his spinal fluid a bit higher up and it worked okay. He's really stiff again and we are calling him "Mr Shuffles".
They urakinased Luke's central line and it appears to have worked and blood is now coming through the line so that is great news as we keep hearing of so many people getting infections and having to have them taken out.
Luke's been feeling really lethargic this week and I can understand why when we went into hospital on Wednesday. His haemaglobin had dropped to 66. So they arranged to give him 2x blood transfusions and platelets. So what was meant to be a half hour in hospital for an injection at 12.30pm turned out to be 9 hours while we waited for the initial blood test and transfusions. Murray ended up coming and relieving me at 5.30pm as I had a throbbing headache. So the boys walked in at 10pm last night. We were glad that he had the transfusions though as we had to go up to Sydney the next day.
As it turned out today we went in for his lumbar puncture and they took bloods in the morning before the procedure. When we came back they said his levels were still low (77) so once again we had 2 x blood transfusions and platelets. Another long day at the hospital and we emerged 8 hours later.
His blood levels for the past week have been:
Haemaglobin: 20/3 - 95 / 22/3 - 82 / 24/3 - 66 / 26/3 - 77
White Blood Cells: 20/3 - 4.3 / 22/3 - 4.8 / 24/3 - 2.1 / 26/3 - 1.2
Platelets: 20/3 - 118 / 22/3 - 74 / 24/3 - 31 / 26/3 - 22
Neutrophils: 20/3 - 3.4 / 22/3 - 4.35 / 24/3 - 1.35 / 26/3 - 0.53
The latest blood results today also show neutrophils of 0.53 - this means Luke is just about to tip into neutropenia. So he will be prone to picking up infections very easily. So the best advise is that if you are feeling unwell please do not come and visit Luke at the moment.
So now to update you on the visit to Westmead's Cancer Care Clinic to see the Stem Cell Transplant Specialists. What a long day! We left around 9am and got to Westmead at 1pm. We decided rather than have lunch beforehand (we'd had a snack around 11am) that we would should make sure we got parking and knew where to go for our appointment at 1.30pm. We got in their early and filled out all the paperwork. It got to 1.45pm and I asked if they had any idea how far behind the doctors were running and the ladies at reception said they were still making up the file and that the doctor was aware we were there. At about 1.55pm we got sent to Clinic 3 only to find another waiting room! I think it was about 2.30pm that we got into see the specialist. We left Westmead at 3.30pm (after lunch) and got home around 8pm.
So to the outcome of the meeting: After reading some paperwork and asking some questions he then had a general chat to us. It would appear that Luke is not a suitable candidate for a stem cell transplant at this stage. The reason being that he is responding well to chemotherapy and is in remission. As you know Luke needs to stay on chemotherapy for quite a long time to keep him in remission so a transplant would only become a viable option if he relapsed and the disease returned or if the abnormal chromosones returned and were not responding to chemotherapy. However the Professor did make the comment that one reason that makes it difficult for them to determine whether he is suitable for a transplant is because he had an uncommon grouping of abnormal chromosones - meaning they don't have any historical data against which to gauge their decision.
He did say that he would talk to the other professors at their team meeting on Monday to concur with them and that "his people would talk to our people" to advise the conclusion. At this stage the initial prognosis is a good thing as the Professor went through quite a lot of the risks and complications around a stem cell transplant and it's not something that you would want to rush into.
The other thing he said was that when Luke finishes this consolidation chemo round that he would ask Canberra for a bone marrow biopsy sample to be sent to Sydney to run a sensitive test (that can't be done in Canberra) to test for minimal residual disease. This test will show if there are any minor traces of leukaemia still in the bone marrow. If there are any minor traces or he relapses then they will reassess as to whether a stem cell transplant would be needed. So we really are back to a bit of a waiting game to make sure Luke stays in remission after this round of chemo and to see if any traces show on the test they will run in Sydney. This won't be until around early to mid May when this round of chemo finishes.
I'll update you all in a week unless there is something else to tell in the meantime.
We have Mum's sister, Mal, and her husband Les, coming to visit Australia from the UK next Tuesday. I haven't seen Mal since Murray and I went to England in 1991 and the kids have never met them so that will be great to catch up with them next week.
Thursday 18th March 2010
I know it's been a while since the last blog however as Luke has achieved remission and now started the 2nd round of chemo there is not a lot of new information I can tell everyone daily so I've decided I'll put an update in the blog weekly.
We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).
Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.
They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1
His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.
Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.
Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).
He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.
Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.
We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).
Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.
They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1
His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.
Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.
Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).
He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.
Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.
Friday 12th March 2010
Luke started his day with a visit to the hospital for a chemo injection. This injection is subcutaneously under the skin - so they do it in his tummy. It doesn't take long and he said it doesn't really hurt. They have started taking bloods daily again. Luke is fantastic at the moment - it is really a shame that he is going to get chemo which is going to drag him back down again. I imagine based on Luke's blood levels on the first round of chemo, Luke will have a few weeks before he dips back down into neutropenia.
At the moment his levels are:
Haemaglobin 105 / White Cell Count 16.4 / Platelets 147 / Neutrophils 13.98.
After hospital we decided to go via Luke's college to get his timetable. While he is good we thought he could try and attend a few classes next week to see what they are up to. It was good to see him talking to all of his friends during their recess break.
He asked if he could go for a driving lesson in his car today. For those who don't know, just before Xmas Luke bought a Nissan 300zx(or rather part bought - we always had the intention of going halves with him and although he's put some money towards it, plans have changed a bit now and I think we'll be waiting a long time for the rest!) It really wasn't my first choice of a car for a learner however it is a great looking car for a 20 year old car - it's a bright red sports car and it just happened to be an exceptional buy and too good an opportunity to pass by.
He was a bit rusty from not having driven for quite a while but he enjoyed himself.
We went this afternoon to view the "Lanyon Loonies" at the pharmacy participating in the Greatest shave for the Leukaemia Foundation. Well done to Allison, Jayne, Suzi and Scott for their bravery. They looked fantastic!
We decided as Luke was in remission to get some of his friends over and let him have a bit of fun. So tonight, 8 of his good friends came over for pizza, x-box and playing a board game - risk - that they all seem to like. Amy's having a sleep over at her cousins, Murray went to watch the football at his Dad's and I've been in the bedroom watching a movie! It's good to see him laughing and having fun.
Three of his friends turned up with their heads shaved. They took part in the Shave at Tuggeranong College. They all look great - bit different to the long hair I'm used to seeing on them.
Some of Luke's other friends - who are part of "Keeping the Faith" team are having their shave on Sunday. Whilst Sue Baker and Tim - actually fall under the "Finance Social Club Team" are participating in the shave next Friday the 19th.
Tomorrow we are back to the hospital for an injection and we might head to the movies. We're going to make the most of Luke's good health while we can.
At the moment his levels are:
Haemaglobin 105 / White Cell Count 16.4 / Platelets 147 / Neutrophils 13.98.
After hospital we decided to go via Luke's college to get his timetable. While he is good we thought he could try and attend a few classes next week to see what they are up to. It was good to see him talking to all of his friends during their recess break.
He asked if he could go for a driving lesson in his car today. For those who don't know, just before Xmas Luke bought a Nissan 300zx(or rather part bought - we always had the intention of going halves with him and although he's put some money towards it, plans have changed a bit now and I think we'll be waiting a long time for the rest!) It really wasn't my first choice of a car for a learner however it is a great looking car for a 20 year old car - it's a bright red sports car and it just happened to be an exceptional buy and too good an opportunity to pass by.
He was a bit rusty from not having driven for quite a while but he enjoyed himself.
We went this afternoon to view the "Lanyon Loonies" at the pharmacy participating in the Greatest shave for the Leukaemia Foundation. Well done to Allison, Jayne, Suzi and Scott for their bravery. They looked fantastic!
We decided as Luke was in remission to get some of his friends over and let him have a bit of fun. So tonight, 8 of his good friends came over for pizza, x-box and playing a board game - risk - that they all seem to like. Amy's having a sleep over at her cousins, Murray went to watch the football at his Dad's and I've been in the bedroom watching a movie! It's good to see him laughing and having fun.
Three of his friends turned up with their heads shaved. They took part in the Shave at Tuggeranong College. They all look great - bit different to the long hair I'm used to seeing on them.
Some of Luke's other friends - who are part of "Keeping the Faith" team are having their shave on Sunday. Whilst Sue Baker and Tim - actually fall under the "Finance Social Club Team" are participating in the shave next Friday the 19th.
Tomorrow we are back to the hospital for an injection and we might head to the movies. We're going to make the most of Luke's good health while we can.
Wednesday 10th March 2010
Yeah!!!! Good news. Luke is in remission.
The interim report we were given a copy of today says: "Normocellular bone marrow. Features are consistent with remission of the known Acute Lymphoblastic Leukaemia and with an excellent response to recent treatment. Note normal karyotype. No cytogenetic abnormality detected."
Luke also had a follow up CT scan last week. The results of this showed that his lymph nodes have improved significantly. The lymph node under the armpit has decreased from 18mm to 7mm. His hepatosplenomegaly (which is enlargement of the liver and spleen) has also significantly improved. The liver now measures 17cm and the spleen 12cm reduced from 21 and 20cm respectively. Also something that I didn't know until his discharge papers turned up at home yesterday, was that his kidneys had lesions/multiple large soft tissue deposits on both kidneys. However on the latest test these had significantly reduced in number and size.
So good news all round at this stage. Whilst this is the best outcome possible at this point there is still a long way to go. The problem now will be keeping him in remission. We are now back in hospital today to start the 2nd round of chemo treatment - consolidation - which will be a 9 week program. We have not been able to see the specialist today and my main concern was whether we should be starting chemo now or waiting till after our appointment in Sydney on the 25th March with the stem cell transplant specialist. Unfortunately I didn't get this question totally confirmed but both the resident and intern agreed that Dipti was going to contact Sydney and that she confirmed yesterday afternoon that she wanted chemo to commence today.
So here we are - back in our old room 7 for old times sakes. We are not sure whether Luke will only need to stay overnight or for 2 nights depending on how long things take. One of the drugs he is on today is quite strong and he needs to have 3 bags of saline to flush through his system (these take about 8 hours each to run through).
For anyone interested the consolidation phase of chemo will include the following drugs: cyclophosphamide, cytarabine, mercaptopurine, methotrexate, L-asparaginase and vincristine.
This will mean between 4-5 visits to the hospital per week to receive the chemo.
Luke's had a few good days at home and has had a bit more energy. It was my birthday yesterday and the four of us went out to dinner. Murray and I discovered a Malaysian restaurant at the Garran shops that was really yummy - so we went there. Had a really nice meal.
The day before we'd had all the family over for lunch. Luke and I had a cook up in the kitchen and we all had a good day.
The interim report we were given a copy of today says: "Normocellular bone marrow. Features are consistent with remission of the known Acute Lymphoblastic Leukaemia and with an excellent response to recent treatment. Note normal karyotype. No cytogenetic abnormality detected."
Luke also had a follow up CT scan last week. The results of this showed that his lymph nodes have improved significantly. The lymph node under the armpit has decreased from 18mm to 7mm. His hepatosplenomegaly (which is enlargement of the liver and spleen) has also significantly improved. The liver now measures 17cm and the spleen 12cm reduced from 21 and 20cm respectively. Also something that I didn't know until his discharge papers turned up at home yesterday, was that his kidneys had lesions/multiple large soft tissue deposits on both kidneys. However on the latest test these had significantly reduced in number and size.
So good news all round at this stage. Whilst this is the best outcome possible at this point there is still a long way to go. The problem now will be keeping him in remission. We are now back in hospital today to start the 2nd round of chemo treatment - consolidation - which will be a 9 week program. We have not been able to see the specialist today and my main concern was whether we should be starting chemo now or waiting till after our appointment in Sydney on the 25th March with the stem cell transplant specialist. Unfortunately I didn't get this question totally confirmed but both the resident and intern agreed that Dipti was going to contact Sydney and that she confirmed yesterday afternoon that she wanted chemo to commence today.
So here we are - back in our old room 7 for old times sakes. We are not sure whether Luke will only need to stay overnight or for 2 nights depending on how long things take. One of the drugs he is on today is quite strong and he needs to have 3 bags of saline to flush through his system (these take about 8 hours each to run through).
For anyone interested the consolidation phase of chemo will include the following drugs: cyclophosphamide, cytarabine, mercaptopurine, methotrexate, L-asparaginase and vincristine.
This will mean between 4-5 visits to the hospital per week to receive the chemo.
Luke's had a few good days at home and has had a bit more energy. It was my birthday yesterday and the four of us went out to dinner. Murray and I discovered a Malaysian restaurant at the Garran shops that was really yummy - so we went there. Had a really nice meal.
The day before we'd had all the family over for lunch. Luke and I had a cook up in the kitchen and we all had a good day.
Friday 5th March 2010
Just a quick update of where we are up to.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.
He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.
Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.
I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.
So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!
We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!
Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.
He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.
Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.
I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.
So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!
We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!
Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.
Wednesday 3rd March 2010
This blog entry is to publicise the fundraising event that is taking place for The Leukamia foundation during the period 11-13 March. The Leukaemia foundation is the only only national not-for-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. In the short time we have been involved with leukaemia, the foundation has certainly been of assistance to us by way of educating us in the disease and providing lots of information via booklets.
A lot of people have been asking how they can support Luke. I know I've suggested donating blood in the past. It is amazing how many blood products Luke has already needed to get through the first 5 weeks and I'm sure he'll need many more.
However another way to show your support would be to donate to the Leukaemia Foundation's Worlds Greatest Shave fundraising event. Money raised helps support families - especially those in country areas who do not have immediate access to hospitals that treat cancer. We are lucky we are in Canberra however in our case if we do have to go to Westmead hospital for an extended stay, the Leukaemia Foundation provides the accommodation.
They also fund leading research into better treatments and cures for leukaemias.
I know of a few teams that are going to take part in the World's Greatest Shave and I'd like to share their details with you in case you would like to direct a donation to them via the website.
1) Lanyon Loonies - this team is made up of staff members from Lanyon Pharmacy where Luke worked after school and on weekends. The brave team who are going to shave consist of Allison Browne, Jayne Gibson, Alex Smith, Suzi Hughes and Scott Mulholland.
2) Keep the Faith - this team consists of friends of Luke's - the team includes Daniel Sims, Tim Sandeman and Ned Lawson.
3) Canberra Grammar School - Jack Lattimore a friend of Luke's attends this school and the school will be participating in Shave for a cure.
4) Lake Tuggeranong College - where Luke attends. I cannot see them listed on the website as a team however I do know from one of the teachers that a fundraising event will be taking place. So if you go to the college you may want to show your support on the day.
5) Individuals - Tim Baker & his mum, Sue Baker are intending on colouring for a cure. Tim and Luke spent many years together playing cricket for the Junior Tuggeranong Vikings Cricket Club. Again I can't see them listed on the website but if you'd like to support them, I'm sure for all those TVCC people out there, you could contact either Des Baker or Billy Thomson.
I have included the link on the blog to the website. worldsgreatestshave.com
Once on the main page go down to the bottom to a heading sponsor a shaver.
Then search for the team or individuals name. Follow the prompts for your donation - you can remain anonymous if you prefer by ticking the applicable boxes.
All donations are tax deductible.
I really respect everyone taking part in this fundraising. They are braver than me! Luke really appreciates all of the support people have shown in taking part in this event. For your information, Luke's hair is slowly falling out - he has had it shaved shorter all over so that the bits of hair coming out aren't as noticeable. So he totally understands what it means to lose your hair and how brave you are all being. A big thank you to all of you.
A lot of people have been asking how they can support Luke. I know I've suggested donating blood in the past. It is amazing how many blood products Luke has already needed to get through the first 5 weeks and I'm sure he'll need many more.
However another way to show your support would be to donate to the Leukaemia Foundation's Worlds Greatest Shave fundraising event. Money raised helps support families - especially those in country areas who do not have immediate access to hospitals that treat cancer. We are lucky we are in Canberra however in our case if we do have to go to Westmead hospital for an extended stay, the Leukaemia Foundation provides the accommodation.
They also fund leading research into better treatments and cures for leukaemias.
I know of a few teams that are going to take part in the World's Greatest Shave and I'd like to share their details with you in case you would like to direct a donation to them via the website.
1) Lanyon Loonies - this team is made up of staff members from Lanyon Pharmacy where Luke worked after school and on weekends. The brave team who are going to shave consist of Allison Browne, Jayne Gibson, Alex Smith, Suzi Hughes and Scott Mulholland.
2) Keep the Faith - this team consists of friends of Luke's - the team includes Daniel Sims, Tim Sandeman and Ned Lawson.
3) Canberra Grammar School - Jack Lattimore a friend of Luke's attends this school and the school will be participating in Shave for a cure.
4) Lake Tuggeranong College - where Luke attends. I cannot see them listed on the website as a team however I do know from one of the teachers that a fundraising event will be taking place. So if you go to the college you may want to show your support on the day.
5) Individuals - Tim Baker & his mum, Sue Baker are intending on colouring for a cure. Tim and Luke spent many years together playing cricket for the Junior Tuggeranong Vikings Cricket Club. Again I can't see them listed on the website but if you'd like to support them, I'm sure for all those TVCC people out there, you could contact either Des Baker or Billy Thomson.
I have included the link on the blog to the website. worldsgreatestshave.com
Once on the main page go down to the bottom to a heading sponsor a shaver.
Then search for the team or individuals name. Follow the prompts for your donation - you can remain anonymous if you prefer by ticking the applicable boxes.
All donations are tax deductible.
I really respect everyone taking part in this fundraising. They are braver than me! Luke really appreciates all of the support people have shown in taking part in this event. For your information, Luke's hair is slowly falling out - he has had it shaved shorter all over so that the bits of hair coming out aren't as noticeable. So he totally understands what it means to lose your hair and how brave you are all being. A big thank you to all of you.
Tuesday 2nd March 2010
Okay so I've missed a few nights! Sorry about that. I've been busy doing an application for a round of positions at work - not something I really wanted to do given our situation but thought I shouldn't let the opportunity pass me by.
I've also been playing apprentice to the "masterchef". He cooked a lovely stuffed chicken breast wrapped in prosciutto and roast veges. The stuffing was a Philadelphia cream cheese/basil/pine nut/Parmesan cheese. Very yummy!
His Nan, Aunty Nat and Aunty Heidi bought a white chefs shirt (don't know the official term) for the budding chef!!
Murray and I have been playing decorators and cleaners today! Luke's new mattress arrived and we needed to clear out his old bed and also took the opportunity to clean out all of his drawers /storage boxes and wardrobe. What a lot of rubbish! I thought I was a hoarder - but I've got nothing on him! His new bed looks great - a white fake look leather bedhead and base. With all the new linen it really brightens up his room.
Luke had the nurse coming each day to take blood and they still have been having trouble getting it out of the central line straight away. It seems to be taking quite a few saline flushes. Luke went into hospital yesterday to have his last day of chemo treatment for the induction phase. It was a lumbar puncture to check the spinal fluid and then chemo injected into the spinal fluid. It was great to have the first round of treatment finished. Yeah!!
Luke's blood results for the last few days are:
27/2 Haemaglobin 107 / White Cell Count 3.1 / Platelets 220 / Neutrophils 2.58
28/2 Haemaglobin 100 / White Cell Count 2.5 / Platelets 213 / Neutrophils 1.5
1/3 Haemaglobin 97 / White Cell Count 4.2 / Platelets 237 / Neutrophils 3.20
As he has finished chemo the nurse was going to drop back to getting bloods every 2 days - hence no blood results today.
Originally we were told that Luke's bone marrow biopsy was going to be on the 11th March with probably about 3 weeks break from chemo. We then found out the biopsy would be this Thursday instead. Only to have a call from one of the doctors today to say that they wanted to do the biopsy tomorrow instead followed by a CAT scan on Thursday. The results of the biopsy will probably take about 3 - 4 days so we won't know until then if he has achieved remission. So it will be a long weekend waiting anxiously!! They then want to start the next round of chemo next Wednesday, which is a 9 week consolidation chemo phase. So unfortunately for Luke there won't be much of a break. At this stage we are still scheduled to go to Sydney on the 25th March but we are concerned that he will be about 14 days into his chemo and probably quite neutropenic. So they are looking into that a bit further at the moment.
As we came back out of hospital last week Murray and I needed to sit down and work out what we were going to do about work. We can't believe that we lost February and it's been 5 weeks since we found out Luke has leukaemia.
Obviously Murray and I would like to share the care of Luke through the week so I ended up dropping my part time hours back to 2 days per week (Mon/Tue) and Murray will work the other 3 days(Wed - Fri). So Murray starts back at work tomorrow morning and I'll be starting next week. Obviously this will need to remain flexible depending on what's around the corner. We know it's going to be a long road and we are lucky that both our workplaces have been so flexible for us.
I've also been playing apprentice to the "masterchef". He cooked a lovely stuffed chicken breast wrapped in prosciutto and roast veges. The stuffing was a Philadelphia cream cheese/basil/pine nut/Parmesan cheese. Very yummy!
His Nan, Aunty Nat and Aunty Heidi bought a white chefs shirt (don't know the official term) for the budding chef!!
Murray and I have been playing decorators and cleaners today! Luke's new mattress arrived and we needed to clear out his old bed and also took the opportunity to clean out all of his drawers /storage boxes and wardrobe. What a lot of rubbish! I thought I was a hoarder - but I've got nothing on him! His new bed looks great - a white fake look leather bedhead and base. With all the new linen it really brightens up his room.
Luke had the nurse coming each day to take blood and they still have been having trouble getting it out of the central line straight away. It seems to be taking quite a few saline flushes. Luke went into hospital yesterday to have his last day of chemo treatment for the induction phase. It was a lumbar puncture to check the spinal fluid and then chemo injected into the spinal fluid. It was great to have the first round of treatment finished. Yeah!!
Luke's blood results for the last few days are:
27/2 Haemaglobin 107 / White Cell Count 3.1 / Platelets 220 / Neutrophils 2.58
28/2 Haemaglobin 100 / White Cell Count 2.5 / Platelets 213 / Neutrophils 1.5
1/3 Haemaglobin 97 / White Cell Count 4.2 / Platelets 237 / Neutrophils 3.20
As he has finished chemo the nurse was going to drop back to getting bloods every 2 days - hence no blood results today.
Originally we were told that Luke's bone marrow biopsy was going to be on the 11th March with probably about 3 weeks break from chemo. We then found out the biopsy would be this Thursday instead. Only to have a call from one of the doctors today to say that they wanted to do the biopsy tomorrow instead followed by a CAT scan on Thursday. The results of the biopsy will probably take about 3 - 4 days so we won't know until then if he has achieved remission. So it will be a long weekend waiting anxiously!! They then want to start the next round of chemo next Wednesday, which is a 9 week consolidation chemo phase. So unfortunately for Luke there won't be much of a break. At this stage we are still scheduled to go to Sydney on the 25th March but we are concerned that he will be about 14 days into his chemo and probably quite neutropenic. So they are looking into that a bit further at the moment.
As we came back out of hospital last week Murray and I needed to sit down and work out what we were going to do about work. We can't believe that we lost February and it's been 5 weeks since we found out Luke has leukaemia.
Obviously Murray and I would like to share the care of Luke through the week so I ended up dropping my part time hours back to 2 days per week (Mon/Tue) and Murray will work the other 3 days(Wed - Fri). So Murray starts back at work tomorrow morning and I'll be starting next week. Obviously this will need to remain flexible depending on what's around the corner. We know it's going to be a long road and we are lucky that both our workplaces have been so flexible for us.
Friday 26th February 2010
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.
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.
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