A while ago I wrote a short post when we reached one thousand visits. Well, it's time for a quick update!
We are now at over 4,000 visits since we started with 550 unique visitors from 16 countries having viewed the blog. All up that accounts for over 3 days' of continuous viewing
I truly hope that you find this a useful way to keep up to date and to stay in touch with what is going on in our lives.
As a quick reminder, if you respond and leave a message via the blog, we don't have any direct way to respond to you personally. While Ali is very grateful (and humbled) by all the response and interest through this website, it is hard for us to acknowledge everyone.
If it is convenient for you to send a message, please feel welcome to send them through to pike.at.work@gmail.com. I will get these messages directly and be able to respond to you individually (unless you are being sneaky and hiding your email) or you can email Ali directly at aapike@tpg.com.au.
Sunday, December 7, 2008
Next couple of weeks
OK, from the last post you may have gathered that we were at a bit of a junction with regard to choice of treatments. Matters have progressed somewhat since then but we are guessing our way through many things and still trying to fully grasp what is ahead of us.
That said, we feel pretty confident that with the advice of our doctors, we are on the best possible path. From here, we have decided to progress with just the hormone treatment for the time being.
This means that Ali gets a 16 gauge needle in her stomach every couple of weeks for the hormones (plus oral hormones which really, are not much of a problem - like hey! what's 23 pills instead of 22 each day). For those who understand how needle measurements work, no further explanation is required. For those who don't know a 16 gauge from a 6 gauge, let's just say that Ali needs 2 or 3 local anaesthetics before they get to the 'real deal'. OUCH!! (On top of this, she is continues to get her bone drugs so she still has to put up with the cannula with each treatment.)
On the bright side, there is no more sickness from the chemo and this Christmas should be 'normal'. The chemo that was scheduled for Christmas Eve is no more and we are looking forward to a happy and exciting day.
As far as other matters go, there's only two weeks of school left! Who could believe it? Kids are getting just that little bit older (as we all are!) and immeasurably smarter and more mature. Surely our parents didn't have to put up with kids growing up so quickly?
The Christmas nut in Alison has come out and we've had our Christmas tree up and decorated since well before the start of December (not quite flowing on from Father's Day like the shopping centres but not too far off). Most of the Christmas presents are settled and we are hopeful of stretching the spirit and magic of the season for at least this year, although with an 8 year old, it is seemingly harder and harder as each year rolls on by.
As a short aside, Alison prepared a fantastic meal tonight. For those who say that scientists have absolutely no imagination or creativity (humble apologies to Alison for my views on this), Ali managed to whip up a fantastic cous cous salad accompanied by a breast of chicken marinated in Portuguese spices. Absolutely delicious!
That said, we feel pretty confident that with the advice of our doctors, we are on the best possible path. From here, we have decided to progress with just the hormone treatment for the time being.
This means that Ali gets a 16 gauge needle in her stomach every couple of weeks for the hormones (plus oral hormones which really, are not much of a problem - like hey! what's 23 pills instead of 22 each day). For those who understand how needle measurements work, no further explanation is required. For those who don't know a 16 gauge from a 6 gauge, let's just say that Ali needs 2 or 3 local anaesthetics before they get to the 'real deal'. OUCH!! (On top of this, she is continues to get her bone drugs so she still has to put up with the cannula with each treatment.)
On the bright side, there is no more sickness from the chemo and this Christmas should be 'normal'. The chemo that was scheduled for Christmas Eve is no more and we are looking forward to a happy and exciting day.
As far as other matters go, there's only two weeks of school left! Who could believe it? Kids are getting just that little bit older (as we all are!) and immeasurably smarter and more mature. Surely our parents didn't have to put up with kids growing up so quickly?
The Christmas nut in Alison has come out and we've had our Christmas tree up and decorated since well before the start of December (not quite flowing on from Father's Day like the shopping centres but not too far off). Most of the Christmas presents are settled and we are hopeful of stretching the spirit and magic of the season for at least this year, although with an 8 year old, it is seemingly harder and harder as each year rolls on by.
As a short aside, Alison prepared a fantastic meal tonight. For those who say that scientists have absolutely no imagination or creativity (humble apologies to Alison for my views on this), Ali managed to whip up a fantastic cous cous salad accompanied by a breast of chicken marinated in Portuguese spices. Absolutely delicious!
Monday, December 1, 2008
Chemo cancelled
We saw the oncologist today. Unfortunately, with the results from last week's scans showing that the tumour in Alison's liver was still growing, it seems that the chemotherapy was not doing its job. And if it's not working, then there is no point in putting Alison's body all through the hassle of side-effects that come with chemo. Thus, we are stopping the treatment.
Next options discussed with the doctor painted three potential pathways.
1) Try an alternate course of chemotherapy and hope that works to reduce the size of the tumour. Thoughts are that given the failure of the first two regimes, probability of this approach being effective are reduced.
2) Start on hormone treatment. Previous tests have indicated that Ali may have a positive response to hormone treatment. It was always intended that she would have hormones at some point, it was just that we were hoping to shrink the tumour first with some chemo and then go with them. The intent of the hormones is to hold the cancer at a stable level for as long as possible.
3) Undergo treatment with SIR-spheres. Essentially an injected radiotherapy treatment where small particles of hair are combined with radioactive material and injected in the blood vessels of the liver (see http://www.sir.net.au/SIR_pi.html for more info). This is a relatively new treatment and it's good to see that it's an Australian innovation. It's not available everywhere so we would need to swap away from our regular doctors for treatment.
Options 2) and 3) are not mutually exclusive and can be undertaken together. At this stage, Ali has already started on the hormones and we are considering whether to push ahead with option 3) as well. The doctors need to confer amongst each other to get their heads straight about what is the best approach and we also need to consider what we think is best. Hopefully, within a week or two we'll know which way to go.
To finish on some good points, there was no evidence of new growths and the doc said that it wasn't the fastest growing cancer she had seen. Ali is generally pretty healthy (cancer notwithstanding) and is getting to feel a bit better now that the last chemo treatment was nearly three weeks ago.
Next options discussed with the doctor painted three potential pathways.
1) Try an alternate course of chemotherapy and hope that works to reduce the size of the tumour. Thoughts are that given the failure of the first two regimes, probability of this approach being effective are reduced.
2) Start on hormone treatment. Previous tests have indicated that Ali may have a positive response to hormone treatment. It was always intended that she would have hormones at some point, it was just that we were hoping to shrink the tumour first with some chemo and then go with them. The intent of the hormones is to hold the cancer at a stable level for as long as possible.
3) Undergo treatment with SIR-spheres. Essentially an injected radiotherapy treatment where small particles of hair are combined with radioactive material and injected in the blood vessels of the liver (see http://www.sir.net.au/SIR_pi.html for more info). This is a relatively new treatment and it's good to see that it's an Australian innovation. It's not available everywhere so we would need to swap away from our regular doctors for treatment.
Options 2) and 3) are not mutually exclusive and can be undertaken together. At this stage, Ali has already started on the hormones and we are considering whether to push ahead with option 3) as well. The doctors need to confer amongst each other to get their heads straight about what is the best approach and we also need to consider what we think is best. Hopefully, within a week or two we'll know which way to go.
To finish on some good points, there was no evidence of new growths and the doc said that it wasn't the fastest growing cancer she had seen. Ali is generally pretty healthy (cancer notwithstanding) and is getting to feel a bit better now that the last chemo treatment was nearly three weeks ago.
Friday, November 28, 2008
Update on CT scan
Hi, it's been a bit busy lately so I've been a little slack in keeping up with the postings.
Ali had a CT scan done last Wednesday. We haven't spoken to the doctor about the results yet so we're not too sure what it all really means.
From what we can tell, the tumour in her liver has grown (43mm to 50mm) but there are no new tumours or lesions visible.
With chemo time racing around again next week, we should have the chance to find out more then.
Ali had a CT scan done last Wednesday. We haven't spoken to the doctor about the results yet so we're not too sure what it all really means.
From what we can tell, the tumour in her liver has grown (43mm to 50mm) but there are no new tumours or lesions visible.
With chemo time racing around again next week, we should have the chance to find out more then.
Saturday, November 22, 2008
Trip to Sydney
We had a day trip to Sydney yesterday to see another doctor just to get a second opinion on the whole situation.
Despite spending near enough to 9 hours in the car (which reminded us why we left Sydney), it was a good day.
We had a good chat with the doctor who reinforced that we were doing the right things at the moment and helped track out what sort of options may be worth considering into the future. In essence, it's really keep on going and don't stop asking questions.
After the doctor, we had lunch at one of my favourite restaurants which I first visited over 30 years ago; Lee's Fortuna Court in Crows Nest. Very tasty meal starting with chicken wrapped in rice paper, crispy skin duck and scallops with snow peas. At the end, Alison's fortune cookie read, "Good news is on its way to you". We'll be keeping our eyes open.
Aside from that, it was the first time I can recall spending 9 hours alone with Ali for many, many years. That alone was pretty special and made the trip all worthwhile.
Despite spending near enough to 9 hours in the car (which reminded us why we left Sydney), it was a good day.
We had a good chat with the doctor who reinforced that we were doing the right things at the moment and helped track out what sort of options may be worth considering into the future. In essence, it's really keep on going and don't stop asking questions.
After the doctor, we had lunch at one of my favourite restaurants which I first visited over 30 years ago; Lee's Fortuna Court in Crows Nest. Very tasty meal starting with chicken wrapped in rice paper, crispy skin duck and scallops with snow peas. At the end, Alison's fortune cookie read, "Good news is on its way to you". We'll be keeping our eyes open.
Aside from that, it was the first time I can recall spending 9 hours alone with Ali for many, many years. That alone was pretty special and made the trip all worthwhile.
Monday, November 17, 2008
Doc & Cap treatment no. 3: Day 5
All is going fine so far. Alison has responded as well as can be expected to her latest round of chemo.
She is up and about and getting out to the shops and doing things for short spells. She wears out quickly and needs a sleep but at least she has some energy.
Certainly, she is feeling much better than last time when she ended up in hospital.
Happily, there's not much to report on the health front.
As for other matters, Harry enjoyed his birthday and is very happy to be 8 years old (I know it's a cliché, but the time really has gone SO quickly). He had a busy day with swimming, grandparents visiting and then out for dinner. Annelise handled her brother getting most of the attention very well and must be maturing somewhat.
She is up and about and getting out to the shops and doing things for short spells. She wears out quickly and needs a sleep but at least she has some energy.
Certainly, she is feeling much better than last time when she ended up in hospital.
Happily, there's not much to report on the health front.
As for other matters, Harry enjoyed his birthday and is very happy to be 8 years old (I know it's a cliché, but the time really has gone SO quickly). He had a busy day with swimming, grandparents visiting and then out for dinner. Annelise handled her brother getting most of the attention very well and must be maturing somewhat.
Wednesday, November 12, 2008
Doc & Cap treatment no. 3: Day 0
Hi all
Treatment went ahead today as planned. So far, Ali has been trooping on very well. She had a little snooze earlier in the day just before the kids came home from school but has otherwise been able to stay awake.
We've just come inside to put the kids to bed after sitting outside in the backyard for the past 1/2 hour. Temperature is still warm and a cool breeze was starting to pick up just as dusk was settling in.
The kids were running around the yard and jumping on the trampoline having lots of fun. Everything seemed so peaceful and comfortable.
Ali will probably head off to bed early tonight and try to get some rest. She spent much of last night tossing and turning and didn't sleep very well so I'm sure she'll welcome the fresh sheets tonight.
Hope life is treating you all well and I'll keep posting updates over the next couple of weeks to let you know how Ali is coping with this cycle. They do appear to be catching up with her and her recovery time is slowly extending. We'll be hoping there are no unplanned trips to the hospital this time.
That's all for now, take care.
Treatment went ahead today as planned. So far, Ali has been trooping on very well. She had a little snooze earlier in the day just before the kids came home from school but has otherwise been able to stay awake.
We've just come inside to put the kids to bed after sitting outside in the backyard for the past 1/2 hour. Temperature is still warm and a cool breeze was starting to pick up just as dusk was settling in.
The kids were running around the yard and jumping on the trampoline having lots of fun. Everything seemed so peaceful and comfortable.
Ali will probably head off to bed early tonight and try to get some rest. She spent much of last night tossing and turning and didn't sleep very well so I'm sure she'll welcome the fresh sheets tonight.
Hope life is treating you all well and I'll keep posting updates over the next couple of weeks to let you know how Ali is coping with this cycle. They do appear to be catching up with her and her recovery time is slowly extending. We'll be hoping there are no unplanned trips to the hospital this time.
That's all for now, take care.
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