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?
Saturday, October 11, 2008
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?
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