As things start to return to normal, I'm conscious that we've not really gotten round to saying thank you to you personally just yet, and having said that, we're constantly thankful for all the amazingly kind things people have done for us all.
Leo is doing okay after his final chemo although his temperature if still hovering between 37.5 and 37.9 so it'll be interesting once his bloods start to drop and his immune system weakens to zero next week or so.
We also ha another follow up with the Eye Hospital today and after enduring three different doctors and multiple tests, it was a good day. Leo did so well doing the tests themselves...think normal optician tests multiplied by about ten, plus you're age 3! He did us all proud and the staff at the Bristol Eye Hospital, whilst obviously very interested in Leo's case, were very patient and keen to ensure he was calm and remained so.
The good news is the sight in his right eye has improved slightly from the tests of three weeks ago so that is promising. The on-going concerns are over the continued photo-sensitivity, plus his eye lid of the right eye is starting to droop, but only slightly. His eye also tends to 'shiver' at times, but only slightly and only if you were looking for it.
The eyes docs are not sure why the droop is happening although this did happen at the beginning before and during diagnosis. It could be due to a number and combination of things, but only time will be able to tell us. The eye lid droop could be muscular damage done by the tumour itself at the beginning but then we're not sure why it's started to do it again, as it appeared that the lid had improved and was the same as the left eye lid. Could it be new tumour causing new problems or should we not be thinking about that just yet? Nothing ws mentioned along these lines but you can't help wondering / worrying. Where the 'shiver' has come from is also difficult to point a finger at as again it was a problem which happened at the beginning but was sifnificantly worse than it currently is. We're back for more repeat tests in three weeks to keep an eye on things (forgive the pun!)
Sounds so inane, but we're very grateful that we have your support in many ways, but we're also so grateful to have the NHS. Leo's care with the NHS has been awesome and the only criticism is on the massive burden on the system as whole which impacts on children's treatment.
There is a significant constant pressure on doctors for beds, even in paediatric oncology, where children's treatment 'may' be compromised due to ward closures elsewhere in hospitals. Therefore if a child is due to have chemo over a given period but all ten beds are taken up by children with infection, those children cannot be moved elsewhere. It's too dangerous to administer chemo on a non-oncology ward and so if children with infections cannot be moved or discharged for clinical reasons, children's chemo treatment can be disrupted.
We've been fortunate but even last Friday we'd already been told Leo could not start his chemo until maybe Sunday, and yet an hour later, we were called to get Leo into hospital as they'd found a bed on the Bone Marrow Transplant Unit. Leo's chemo protocol has to be done on time to ensure optimum treatment, hence the many incidences of GCSF to ensure his bloods were safe for him to have the chemo.
Anyway, I've gone on and on, but what I wanted to say was thank you to one and all, and to the fact that we are in the UK with free at point-of-service healthcare.
Wednesday, October 29, 2008
Monday, October 27, 2008
Now the Work Starts
Leo finished his final chemo yesterday and has been doing well today, albeit no appetite and too much of a low grade fever for our liking. It hit 38 degrees but then came back down to 37.6 within 30 minutes, with the rule being if it's 38 degrees twice over the course of half an hour, he'd have to be admitted to hospital immediately. And so whilst many may be breathing a sigh of relief at the end of treatment, this sigh will happen for PJ and I a) once we've got through the next 3 weeks as it's during this time his immune system drops to zero, and b) once we've finally had the proper official meeting with Leo's paed oncologist in this next two weeks.
When I say we'll have a sigh of relief, it'll only be short-lived as then the cycle of either maintenance chemo (we're still undecided), or scheduled checks on his cancer via MRI scans every 3 months and checks of his growth, hormones, heart, bones, sight etc etc etc starts and continues for the next 5 years. So perhaps it's best to say we'll be doing alot of holding out breath over the next 5 years.
We're also now looking to the future in a big way in more than one way. My cousins Donna and Nicola are doing some major fundraising by putting themselves through the major pain of the GRIM (8 mile army assault course in the middle of winter..madness? Yes, but all in the name of a good cause). If you'd like to sponsor them, let me know and I can pass along your details or better still, email Nicola on nkdale@hotmail.com). It'd be nice to know they're not going to putting themselves through a grim experience for nothing!
I'm also now going to reach out to you for more than just cash as there's plenty of time for that...over the next 2 years, we'd like do as much fundraising as possible. So my plea at this time is for this; if you or anyone you know have any knowledge of fundraising, event organisation or online and offline marketing or any of these types of things, then please, please get in touch (email: helen@wingroveclarke.com)
Isn't it strange that only about a week before Leo was diagnosed I was chatting with my friends in Spain before my short trip home to say that as soon as I'd recovered from my operation, I'd love to 'do' something for a good cause. Raise money by doing a half marathon or organising a music night or ball or something similar.
Well now, I plan to do all of the above and then some, and I'd really like your help to do this and raise as much cash as we can. Funny how things happen, isn't it? As a direct result of Leo having cancer, we now have the opportunity to raise money to make sure he's able to chill with Mickey for a day or two, and ensure other families and children in the same boat can benefit from our experiences in more ways than one.
When I say we'll have a sigh of relief, it'll only be short-lived as then the cycle of either maintenance chemo (we're still undecided), or scheduled checks on his cancer via MRI scans every 3 months and checks of his growth, hormones, heart, bones, sight etc etc etc starts and continues for the next 5 years. So perhaps it's best to say we'll be doing alot of holding out breath over the next 5 years.
We're also now looking to the future in a big way in more than one way. My cousins Donna and Nicola are doing some major fundraising by putting themselves through the major pain of the GRIM (8 mile army assault course in the middle of winter..madness? Yes, but all in the name of a good cause). If you'd like to sponsor them, let me know and I can pass along your details or better still, email Nicola on nkdale@hotmail.com). It'd be nice to know they're not going to putting themselves through a grim experience for nothing!
I'm also now going to reach out to you for more than just cash as there's plenty of time for that...over the next 2 years, we'd like do as much fundraising as possible. So my plea at this time is for this; if you or anyone you know have any knowledge of fundraising, event organisation or online and offline marketing or any of these types of things, then please, please get in touch (email: helen@wingroveclarke.com)
Isn't it strange that only about a week before Leo was diagnosed I was chatting with my friends in Spain before my short trip home to say that as soon as I'd recovered from my operation, I'd love to 'do' something for a good cause. Raise money by doing a half marathon or organising a music night or ball or something similar.
Well now, I plan to do all of the above and then some, and I'd really like your help to do this and raise as much cash as we can. Funny how things happen, isn't it? As a direct result of Leo having cancer, we now have the opportunity to raise money to make sure he's able to chill with Mickey for a day or two, and ensure other families and children in the same boat can benefit from our experiences in more ways than one.
Saturday, October 25, 2008
And Finally...
As I write, Leo's already had his final chemo dose; it's all just Mesna (which protects his bladder) and hydration fluids via his IV until tomorrow morning, and then...that's it!
Who'd have thought we'd have got here? As I've said so many times, it feels like it only yesterday that Leo was diagnosed, but then on the other hand, I think PJ and I have aged beyond years!
As for Leo, he's doing okay. He has spiked a temperature again today so had some paracetamol to bring it down and to say I'm not surprised, is an under-statement. We had to call the Day Unit on Thursday to make sure that a constant temp between 37.6 and 37.9 was going to be okay for chemo this weekend. As it happens, it was but his temp is still a sign of something rumbling away. We just wonder whether there's something with his chest, the mould allergy he has or something with his line again, which has been going on since about 7 weeks ago. Perhaps we'll only know if it continues until he becomes neutropenic again in 8 to 13 days time.
So even though chemo is over this weekend, we've another cycle to keep Leo healthy through it and keep monitoring things. Fingers crossed...
Who'd have thought we'd have got here? As I've said so many times, it feels like it only yesterday that Leo was diagnosed, but then on the other hand, I think PJ and I have aged beyond years!
As for Leo, he's doing okay. He has spiked a temperature again today so had some paracetamol to bring it down and to say I'm not surprised, is an under-statement. We had to call the Day Unit on Thursday to make sure that a constant temp between 37.6 and 37.9 was going to be okay for chemo this weekend. As it happens, it was but his temp is still a sign of something rumbling away. We just wonder whether there's something with his chest, the mould allergy he has or something with his line again, which has been going on since about 7 weeks ago. Perhaps we'll only know if it continues until he becomes neutropenic again in 8 to 13 days time.
So even though chemo is over this weekend, we've another cycle to keep Leo healthy through it and keep monitoring things. Fingers crossed...
Thursday, October 23, 2008
Failing but Learning, All the Same!
Yesterday was Leo's final visit to the Royal Marsden Cancer Hospital in Sutton and as it turned out, we kind of failed him somewhat. We forgot how his experience of this hospital was for six weeks, day in, day out, the same routine every day. And so failed to spot that he'd think he had to have the medicines which made him sleep, and that he wouldn't need to have loads of things done to him whilst he was there. If we had, then we would not have had such issues getting him out of the place. He was determined he had to visit all three playrooms before having the anaesthetic in the RT suite.
It took a good half hour to even get him strapped into his car seat before he was calm and realised that yesterday was not going to be like all the other days. I guess PJ and I forget sometimes that we know what's going on and our relief that yesterday was going to be the final time we saw the Radiotherapy Consultant, that we failed to guide Leo through what was going to happen; and more importantly, what wasn't going to happen.
As it was, it was a useful meeting, if a little strange. He didn't tell us anything we didn't already know; except that is the photo-sensitivity that Leo's had (although it's getting better slowly) is nothing to do with the radiotherapy. It's more likely to be tumour related. At least we're in a city in Bristol where there's an Eye Hospital with plenty of specialists with an interest in Leo and his cancer, so that's good!
One thing which did get to us was when the doctor said 'if' Leo makes it to teenage years, he won't look like a 'freak' when he walks down the street. And that's pretty much word for word what he said. Now I know this is realistic and 'normal' doctor speak but it would have been nice to shield us somewhat from this. No matter how much charm some doctors have, and no matter how often they have to tell people bad things, do they sometimes not realise how what they say effects us?
I hate the ifs and buts of the future, but then I guess none of us know what's around the corner. We could get knocked down by a bus tomorrow; no-one really knows what the future holds, do they? The 'freak' comment was regarding the effects of the radiotherapy on the growth or lack thereof on Leo's skull, where the three fields of photon radiotherapy beams were directed.
It's true that one of our fears from the radiotherapy was the cosmetic effects to Leo's face and head, so at least we know he won't be desperately affected in the long term i.e. he won't look disfigured. But then I guess there'll always be questions that we, as his parents, will have to face. Yes, he's young and only three years old now, but the late effects such as infertility will need to be addressed. How often will we have to remind him that if he smokes, he will get cancer? End of story. No negotiations. No ifs or buts. What about the small scars he'll be left with on his chest from his Hickmann lines? Small, and practically won't be seen once they fade with time, but constant reminders all the same, and reminders which will lead to questions from an inquiring mind.
Well, no parent signs up for their child to have cancer, but PJ and I will do and have tried to do, all we can to protect Leo, and sometimes, like yesterday, we do get things wrong. We'll no doubt get things wrong again, but in the meantime, we hope he'll be okay; we pray he'll be okay...as we all do.
Tomorrow's a new day, and we hope there'll be a bed available for him to start his final chemotherapy as an in-patient. Seems there's plenty of children who have problems with their temperature at the moment and so the ward's pretty full.
We never thought we'd get to this point when he was diagnosed back in May, but here we are. In once piece, and praying for a future.
It took a good half hour to even get him strapped into his car seat before he was calm and realised that yesterday was not going to be like all the other days. I guess PJ and I forget sometimes that we know what's going on and our relief that yesterday was going to be the final time we saw the Radiotherapy Consultant, that we failed to guide Leo through what was going to happen; and more importantly, what wasn't going to happen.
As it was, it was a useful meeting, if a little strange. He didn't tell us anything we didn't already know; except that is the photo-sensitivity that Leo's had (although it's getting better slowly) is nothing to do with the radiotherapy. It's more likely to be tumour related. At least we're in a city in Bristol where there's an Eye Hospital with plenty of specialists with an interest in Leo and his cancer, so that's good!
One thing which did get to us was when the doctor said 'if' Leo makes it to teenage years, he won't look like a 'freak' when he walks down the street. And that's pretty much word for word what he said. Now I know this is realistic and 'normal' doctor speak but it would have been nice to shield us somewhat from this. No matter how much charm some doctors have, and no matter how often they have to tell people bad things, do they sometimes not realise how what they say effects us?
I hate the ifs and buts of the future, but then I guess none of us know what's around the corner. We could get knocked down by a bus tomorrow; no-one really knows what the future holds, do they? The 'freak' comment was regarding the effects of the radiotherapy on the growth or lack thereof on Leo's skull, where the three fields of photon radiotherapy beams were directed.
It's true that one of our fears from the radiotherapy was the cosmetic effects to Leo's face and head, so at least we know he won't be desperately affected in the long term i.e. he won't look disfigured. But then I guess there'll always be questions that we, as his parents, will have to face. Yes, he's young and only three years old now, but the late effects such as infertility will need to be addressed. How often will we have to remind him that if he smokes, he will get cancer? End of story. No negotiations. No ifs or buts. What about the small scars he'll be left with on his chest from his Hickmann lines? Small, and practically won't be seen once they fade with time, but constant reminders all the same, and reminders which will lead to questions from an inquiring mind.
Well, no parent signs up for their child to have cancer, but PJ and I will do and have tried to do, all we can to protect Leo, and sometimes, like yesterday, we do get things wrong. We'll no doubt get things wrong again, but in the meantime, we hope he'll be okay; we pray he'll be okay...as we all do.
Tomorrow's a new day, and we hope there'll be a bed available for him to start his final chemotherapy as an in-patient. Seems there's plenty of children who have problems with their temperature at the moment and so the ward's pretty full.
We never thought we'd get to this point when he was diagnosed back in May, but here we are. In once piece, and praying for a future.
Sunday, October 19, 2008
Home Again
Home after a few days at the hospital and Leo is better for it, although still not eating, not really drinking all that much milk and still has a mighty cough, especially when he goes to bed.
So only five days until Leo starts his final round of chemo and actually, PJ and I can actually see the light at the end of the tunnel. Amazing what a few sleeping tablets can do for your mood, isn't it?
Of course, there'll be bumps along the road from here on in, but it's how we deal with them as to whether those bumps will be mole hills or mountains. Life won't ever be 'normal' again, but I actually quite like thinking we've been given a (really nasty) kick up the backside and so we're having to not take anything for granted any longer.
Leo's looking forward to starting school (nursery) again and said he wanted to walk to school which is what we did in Spain. Alas, unless he can walk about 3.5 miles each way, then this won't be happening. Shame as we loved being able to stroll on down to King's College, in the sunshine most mornings and afternoons. Oh, what a school run that was. Well, it wasn't a run so much as a gentle stroll with sun glasses on!
Back to the Royal Marsden for a check up, post-radiotherapy and so we're keen to find out what they say about the ultra light-sensitivity Leo still has.
Tomorrow's a new day, and we're looking forward to it.
So only five days until Leo starts his final round of chemo and actually, PJ and I can actually see the light at the end of the tunnel. Amazing what a few sleeping tablets can do for your mood, isn't it?
Of course, there'll be bumps along the road from here on in, but it's how we deal with them as to whether those bumps will be mole hills or mountains. Life won't ever be 'normal' again, but I actually quite like thinking we've been given a (really nasty) kick up the backside and so we're having to not take anything for granted any longer.
Leo's looking forward to starting school (nursery) again and said he wanted to walk to school which is what we did in Spain. Alas, unless he can walk about 3.5 miles each way, then this won't be happening. Shame as we loved being able to stroll on down to King's College, in the sunshine most mornings and afternoons. Oh, what a school run that was. Well, it wasn't a run so much as a gentle stroll with sun glasses on!
Back to the Royal Marsden for a check up, post-radiotherapy and so we're keen to find out what they say about the ultra light-sensitivity Leo still has.
Tomorrow's a new day, and we're looking forward to it.
Friday, October 17, 2008
Inevitable
After nearly two weeks of getting a temperature of up to 37.8 every afternoon, it was inevitable that Leo would spike a fever of 38.8. Late Thursday night / Friday morning, it's one of the few nights PJ and I had stayed up to check on Leo and have a good chat about the future. Lo and behold, as we're heading to bed, Leo's temp was way too high and so off to Bristol Children's Hospital we went. There are good things about the timing, as there was no traffic at all on the roads and so the 2 mile journey took minutes, plus the children's Accident and Emergency room was empty too (not that we'd have to wait as each time Leo is sick, we call the ward and then they notify the A&E who then arrange a room for when we arrive).
Leo's temp came back down quite quickly with some IV antibiotics and some paracetamol and today his temp has only been up to 37.8. His chest X-ray of last night was cloudy but not much more has been said about it. And for days Leo has been saying his mouth is sore but only when it's time for doing his teeth, however it looks like we should have believed him now as he does have some mouth sores too.
We'll find out a bit more tomorrow but it's likely that as his temp came back down and he was happily playing all day, the docs will let him come home tomorrow, so we'll have to keep a real close eye on him...or wrap him up in cotton wool?
One bit of the jigsaw has been solved or answered for us; the cyclophosphamide suggested as one of the two maintenance chemo drugs, is available as a liquid as well as a tablet so those nights of lying awake wondering how we'd get Leo to take a tablet were wasted! Having said that, the doc doesn't know what the liquid tastes like so who knows? Leo may decide not to take the drug however you do it!!!
Anyway, tomorrow's another day and whatever it brings, Leo's being brave and so good about being back in the hospital again. One week left until the end of treatment and then life nearly restarts with maintenance chemo...
Leo's temp came back down quite quickly with some IV antibiotics and some paracetamol and today his temp has only been up to 37.8. His chest X-ray of last night was cloudy but not much more has been said about it. And for days Leo has been saying his mouth is sore but only when it's time for doing his teeth, however it looks like we should have believed him now as he does have some mouth sores too.
We'll find out a bit more tomorrow but it's likely that as his temp came back down and he was happily playing all day, the docs will let him come home tomorrow, so we'll have to keep a real close eye on him...or wrap him up in cotton wool?
One bit of the jigsaw has been solved or answered for us; the cyclophosphamide suggested as one of the two maintenance chemo drugs, is available as a liquid as well as a tablet so those nights of lying awake wondering how we'd get Leo to take a tablet were wasted! Having said that, the doc doesn't know what the liquid tastes like so who knows? Leo may decide not to take the drug however you do it!!!
Anyway, tomorrow's another day and whatever it brings, Leo's being brave and so good about being back in the hospital again. One week left until the end of treatment and then life nearly restarts with maintenance chemo...
Monday, October 13, 2008
Too Tired to Eat
I guess it was going to happen at some point but Leo is certainly more tired and more 'off' than normal. He's no interest is going out, playing actively, or even eating. He's quite happy to watch Handy Manny and Mickey Mouse on Sky+, and do the odd bit of drawing and colouring. He told me he only wanted milk today as he was too tired to eat.
Leo's eye is still very, very light sensitive and if it continues, we may see if we can get him back to the Eye Hospital before the next appointment on Oct 29th. We are back at the Royal Marsden next week so they may also be able to shed light on the problem (excuse the pun).
Leo's eye is still very, very light sensitive and if it continues, we may see if we can get him back to the Eye Hospital before the next appointment on Oct 29th. We are back at the Royal Marsden next week so they may also be able to shed light on the problem (excuse the pun).
Saturday, October 11, 2008
No Decision is Still a Decision..Isn't It?
As you'll see from the title of this post, no decision has been taken over the whole maintenance chemo side of things..but that's still a decision, isn't it? If you'd asked me yesterday, I'd have said, yeap, let's go for it. However, today, I'm all for not pursuing further treatment. Leo's been through enough and if doctors cannot say for sure that another 24 weeks of treatment will help, then why would we, or even , why should we put Leo through this?
PJ feels the same and his mind changes from day to day too, but then one prevailing thought is that if there's more treatment available, even if you've no proof it will work, then why wouldn't you choose the extra treatment? Extra treatment equals extra coverage surely? Wouldn't we all like to know that everything's been done which could be done... One good thing is we can start the treatment and if there are problems, such as Leo not wanting to take the daily chemo tablet or if he gets a risky infection too frequently, then we can stop.
Leo's on good form at the moment and being a totally 'normal' three year old. Throwing a fit in the middle of Harvey Nichols because he was tired, bored and stuck in his buggy..just your plain old normal toddler behaviour! But then take him to a toy store to spend some cash given to him by the cancer charity Macmillan, specifically for toys, and what does he choose? The most expensive thing in the place? Nope! A £1 plastic, stretchy lizard, of which he already has three!
He's probably neutropenic this week and as he still has his heavy cough / cold, all eyes are on this wandering temperature which keeps going up to about 37.8 each afternoon / evening since last Saturday, but then it returns to normal, of its own accord. It'll be interesting to see what happens once his immune system is next to zero.
We've another eye appointment to check Leo's sight on October 29th however, neither PJ nor I are hoping for much improvement. Unfortunately Leo was drawing pictures of himself this evening whilst we were over with Ainslie, Ben and Matilda, and the pictures all featured one eye completely coloured in black and one 'good' eye. Upon asking him about this, he said the black one was his bad eye and the other was his good one. Shame.. but hey, a Leo alive and healthy at the age of 40 but blind in one eye, or the alternative...which one would we choose?
PJ feels the same and his mind changes from day to day too, but then one prevailing thought is that if there's more treatment available, even if you've no proof it will work, then why wouldn't you choose the extra treatment? Extra treatment equals extra coverage surely? Wouldn't we all like to know that everything's been done which could be done... One good thing is we can start the treatment and if there are problems, such as Leo not wanting to take the daily chemo tablet or if he gets a risky infection too frequently, then we can stop.
Leo's on good form at the moment and being a totally 'normal' three year old. Throwing a fit in the middle of Harvey Nichols because he was tired, bored and stuck in his buggy..just your plain old normal toddler behaviour! But then take him to a toy store to spend some cash given to him by the cancer charity Macmillan, specifically for toys, and what does he choose? The most expensive thing in the place? Nope! A £1 plastic, stretchy lizard, of which he already has three!
He's probably neutropenic this week and as he still has his heavy cough / cold, all eyes are on this wandering temperature which keeps going up to about 37.8 each afternoon / evening since last Saturday, but then it returns to normal, of its own accord. It'll be interesting to see what happens once his immune system is next to zero.
We've another eye appointment to check Leo's sight on October 29th however, neither PJ nor I are hoping for much improvement. Unfortunately Leo was drawing pictures of himself this evening whilst we were over with Ainslie, Ben and Matilda, and the pictures all featured one eye completely coloured in black and one 'good' eye. Upon asking him about this, he said the black one was his bad eye and the other was his good one. Shame.. but hey, a Leo alive and healthy at the age of 40 but blind in one eye, or the alternative...which one would we choose?
Wednesday, October 08, 2008
Decisions, decisions...
Yes, it's all been quiet here and whilst I'd like to say there's been no blog postings because we've been terribly busy, well, actually, it's been the opposite. Our tiredness has caught up with us all at a time when 32 boxes of our life's belongings have arrived from Spain, Leo undergoing chemo, Leo's eye still being sore (but better) and the weather is so changeable, no plans can be made from day to day.
Leo did well but was very sick again with his chemo at the weekend. Decisions need to be made about whether he has the maintenance chemo which would last 24 weeks and include one daily chemo tablet as well as weekly IV chemo via his central line for three out of every four weeks.
There's pro's and con's for deciding one way or the other but as directed by his doctors, if you search for clinical evidence as to which way to go, you'll only see positive research results. However, if there were negative research, it doesn't get published so you can essentially take the positive published articles with a pinch of salt (as his doctor has told us). Plus the upside we can expect from continuing his chemotherapy would only improve his chances of survival by between 2% and 5%. So this would improve his outcome to 52% to 55%, if the research is to be believed.
However, our doctors are advising they cannot advise on whether we choose one path or the other as they are not convinced either way. It is fundamentally down to PJ and I, although actually, if Leo won't take a tablet every day for 24 weeks, then one could say that he decides whether this treatment continues or not.
The downside are the risks of major infection due to his central line and his immuno-supressed system which if he's in nursery, could make the difference between life and death. Ultimately, if we decide to go for it with the additional treatment, are we only extending his life artificially and therefore hospital visits, when we should perhaps have faith in the current treatment protocol, and have faith that he'll be in the 50% that go on and survive the cancer after 5 years. Having faith at a time like this is questionable though...
We also spent today at the Eye Hospital and unfortunately it appears the vision in Leo's right eye is not as good as his left. The reason for this is unknown right now as it's too early to be due to the radiotherapy as this should creep up on him over the next few years, but it could be that the cancer caused more damage to his optic nerve than first thought.
Today was the first of three vision tests where the eye docs have been able to assess the left and right eye individually, so today is basically a benchmark. Shame his vision is already going or more affected than we'd first thought, but having said that, if Leo reaches the age of 40, healthy, having kicked cancer in the backside, with full remission and no major side effects but can only see with his left eye, then we'll take that right now...where do we sign?
Leo did well but was very sick again with his chemo at the weekend. Decisions need to be made about whether he has the maintenance chemo which would last 24 weeks and include one daily chemo tablet as well as weekly IV chemo via his central line for three out of every four weeks.
There's pro's and con's for deciding one way or the other but as directed by his doctors, if you search for clinical evidence as to which way to go, you'll only see positive research results. However, if there were negative research, it doesn't get published so you can essentially take the positive published articles with a pinch of salt (as his doctor has told us). Plus the upside we can expect from continuing his chemotherapy would only improve his chances of survival by between 2% and 5%. So this would improve his outcome to 52% to 55%, if the research is to be believed.
However, our doctors are advising they cannot advise on whether we choose one path or the other as they are not convinced either way. It is fundamentally down to PJ and I, although actually, if Leo won't take a tablet every day for 24 weeks, then one could say that he decides whether this treatment continues or not.
The downside are the risks of major infection due to his central line and his immuno-supressed system which if he's in nursery, could make the difference between life and death. Ultimately, if we decide to go for it with the additional treatment, are we only extending his life artificially and therefore hospital visits, when we should perhaps have faith in the current treatment protocol, and have faith that he'll be in the 50% that go on and survive the cancer after 5 years. Having faith at a time like this is questionable though...
We also spent today at the Eye Hospital and unfortunately it appears the vision in Leo's right eye is not as good as his left. The reason for this is unknown right now as it's too early to be due to the radiotherapy as this should creep up on him over the next few years, but it could be that the cancer caused more damage to his optic nerve than first thought.
Today was the first of three vision tests where the eye docs have been able to assess the left and right eye individually, so today is basically a benchmark. Shame his vision is already going or more affected than we'd first thought, but having said that, if Leo reaches the age of 40, healthy, having kicked cancer in the backside, with full remission and no major side effects but can only see with his left eye, then we'll take that right now...where do we sign?
Thursday, October 02, 2008
Cotton wool anyone?
Went to see a lovely nursery for Leo today and he enjoyed it so much, he didn't want to leave! Typical! We hope to sort him out a place there soon and the nurse we spoke with yesterday, and his consultant has always maintained, that the consensus has changed over the years about children with cancer and school / nursery. The risk of infection is high, but the upside is the stimulation, social and emotional development and the time spent with peers. Children ten years ago would have been wrapped up in cotton wool, and actually that's also still an option..not a realistic one, but an option all the same. However cotton wool is no barrier to infection or cancer!
More chemotherapy tomorrow; his 8th cycle of 9. Has time flown or what? Or has it dragged so much I cannot believe we're here already? Funny because one minute I'm remembering picking the boys up the day before my surgery, and that feels like yesterday, and then Leo has cancer and that feels like ten years ago. Have we really only been back in the UK since the end of April?
Plus we'll find out more info about the whole maintenance chemo side of things tomorrow. You'll know this has been playing on our minds for weeks and months, and so we hope that we'll be able to find out all the details, or at least most of them, so as we can start to make an educated decision about Leo's future.
Tomorrow's a new day...and looking forward to it. After tomorrow and this weekend, Leo's treatment has just one cycle left. Boy, has he done well and as a friend of mine has said, he has smiled through most of it. If it were you or I, would we have been as composed as him?
More chemotherapy tomorrow; his 8th cycle of 9. Has time flown or what? Or has it dragged so much I cannot believe we're here already? Funny because one minute I'm remembering picking the boys up the day before my surgery, and that feels like yesterday, and then Leo has cancer and that feels like ten years ago. Have we really only been back in the UK since the end of April?
Plus we'll find out more info about the whole maintenance chemo side of things tomorrow. You'll know this has been playing on our minds for weeks and months, and so we hope that we'll be able to find out all the details, or at least most of them, so as we can start to make an educated decision about Leo's future.
Tomorrow's a new day...and looking forward to it. After tomorrow and this weekend, Leo's treatment has just one cycle left. Boy, has he done well and as a friend of mine has said, he has smiled through most of it. If it were you or I, would we have been as composed as him?
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