When there's no updates on the blog, yes, it does mean it's either bad news or good news; however on this occasion, we're happy. So apologies for the lack of info, but we've either been at the hospital with Leo this week or playing with baby Sophie, and seeing Andrew and Julia.
Leo's MRI on Friday afternoon showed a significant decrease in the size of the tumour in Leo's head; maybe even up to 50% reduction. We'll know more on Monday when we speak with his doctor again once the measurements and comparisons have been made. The advise here is yes, be excited and pleased the chemo is doing it's thing but as this tumour is so rare in the site it's in and in a child of Leo's age, we don't know if that's good or bad. But hey, we'll take this result for what it is..a clear indication that something is working to combat the cancer.
The MRI also showed that the optic nerve is now visible on the scans and the impingement onto the brain has considerably decreased.
This matched with the info gained from a lengthy visit with the opthamologists this week at Bristol's Eye Hospital. They feel Leo's sight has returned to near perfect when using both eyes but given he's 3 and not all that happy about being in the hospital for hours on Wednesday, he wouldn't let them check each eye individually or look at the back of his eye so no news there.
Not sure on kidney function or his chest Xray results but the main ones are the vital ones given above. So a quick punch of the air for today and then tomorrow is another day.
The other news is that Bristol cannot offer to do his radiotherapy on time as they can only anaesthetise two children for radiotherapy each day. Leo would be a third and so to do it here in Bristol would mean a delay of 13 days. On consultation with those in the know, this delay could / would be detrimental and as such, we may be off to the Royal Marsden in Surrey for the 1st August for at least 6 weeks. It will mean more upheavel especially as PJ will be off to start work in September and we may have found a house in Bristol, as of today!
So if you're having a swift one or more this weekend, please raise a glass for a few things; the first to chemotherapy, as it's clearly doing something; the second, to Leo for being so brave (although when you tell him this, he shouts at you that he's not); and the third, for Sophie, as it's her Christening this Sunday, and she is probably the most smiley baby we know!
Saturday, July 05, 2008
Tuesday, July 01, 2008
Rubbish
Punching a pillow is not only how we continuously feel but it's also what we've been advised Leo can do / should do, as and when he gets angry. PJ and I saw a therapist today who specialises in children like Leo and he quite happily played with the play specialist on the ward whilst we went for a chat. The therapist said that if his behaviour was escalating to the point of anger and biting etc, then that would just be 'naughty' but because he just 'goes', his head just flips and he's bordering on rage in literally one second, then this type of behaviour is pure anger at his not being able to communicate to PJ and I how rubbish this whole situation is.
Leo did in fact tell us whilst the football was on the other night that he 'wanted to go back to Spain because England was rubbish!' I personally don't think it's England which is rubbish; I think it's the lack of his friends and things he's grown fond of in Spain that he misses, and the fact he has to go to the hospital etc etc. Thank goodness he doesn't know what we know otherwise he'd really think things were rubbish.
Trying to find a house is a tricky rubbish situation too as even though we'd qualify for housing benefit of £650, we'd need to put towards this to find somewhere we'd feel happy calling home for a year or more. Having said that, finding the extra is not the problem. It's finding a landlord who will accept a family on housing benefit which is wierd as it's guaranteed income for landlords regardless of what the credit crunch is doing? I guess there's the whole cultural thing in this country about being on benefits! Plus we also need to be able to give work references which is tricky as neither of us are working right now so overall our grand plan is being scuppered and we'll have to wait a while longer before we can to move into a place we can make into a safe, secure and comfortable home for Leo, and us, to have some sort of normality.
Hopefully Leo will cheer up tomorrow as he is seeing his cousin baby Sophie again after seeing her a couple of weeks ago. She is over from Dubai and Julia, my sister-in-law came to see us en route to catching up with some old school friends in Bristol a few weeks ago when Leo was in hospital. This time my brother is also over with them as they're having Sophie christened on Sunday, so a nice happy family get-together to counter all this 'rubbish' will do nicely.
Leo did in fact tell us whilst the football was on the other night that he 'wanted to go back to Spain because England was rubbish!' I personally don't think it's England which is rubbish; I think it's the lack of his friends and things he's grown fond of in Spain that he misses, and the fact he has to go to the hospital etc etc. Thank goodness he doesn't know what we know otherwise he'd really think things were rubbish.
Trying to find a house is a tricky rubbish situation too as even though we'd qualify for housing benefit of £650, we'd need to put towards this to find somewhere we'd feel happy calling home for a year or more. Having said that, finding the extra is not the problem. It's finding a landlord who will accept a family on housing benefit which is wierd as it's guaranteed income for landlords regardless of what the credit crunch is doing? I guess there's the whole cultural thing in this country about being on benefits! Plus we also need to be able to give work references which is tricky as neither of us are working right now so overall our grand plan is being scuppered and we'll have to wait a while longer before we can to move into a place we can make into a safe, secure and comfortable home for Leo, and us, to have some sort of normality.
Hopefully Leo will cheer up tomorrow as he is seeing his cousin baby Sophie again after seeing her a couple of weeks ago. She is over from Dubai and Julia, my sister-in-law came to see us en route to catching up with some old school friends in Bristol a few weeks ago when Leo was in hospital. This time my brother is also over with them as they're having Sophie christened on Sunday, so a nice happy family get-together to counter all this 'rubbish' will do nicely.
Monday, June 30, 2008
A Quiet-ish Day
A quiet-ish day because Leo has had a low-grade temperature but also because he decided to 'kick-off' and have a little biting fit this morning. As a result, we said he was not allowed out today and also not allowed any treats. He's therefore had a day of DVDs and playing at Clic House which is not the most suitable place to try to contain him as he does not want to be with anyone else but PJ and I. But we're making some head-way into renting a place and today has meant we can sit down and concentrate on sorting out our housing and benefits, so in a way, it's been a blessing in disguise that we've had to stay home.
Just finished watching Andy Murray on Centre Court at Wimbledon and recognised some of Leo's fighting spirit in the Scot. Nice one, Murray. Keep it coming. Always enjoy a comeback kid going against the odds.
Off to the hospital tomorrow for kidney function test to assess how much his kidney function has been damaged as a result of the chemotherapy. We also have a much-needed appointment with some child therapists to help us in looking after Leo's emotional needs right now. We completely recognise that he's in an alien place in his life right now. Not only does he have doctors and nurses eyeing him up all the time, but we're no longer in Spain, he's not attending King's College which he absolutely loved, he has no friends here which he sees on a regular basis and he has to share one room with his Mum and Dad; now that final one alone is enough to make anyone go crazy!
Wednesday sees another day of family as my brother, his wife and baby Sophie are still here from Dubai, as it's Sophie's Christening on Sunday. Leo cannot wait to see baby Sophie again and as we're not sure if he's allowed to travel as far as a town near Gatwick whilst on treatment, this will be the last time he sees Sophie for a long while and probably until they all come to the UK as I doubt we'll be able to travel to Dubai for a long time. Travel insurance alone is prohibitive for cancer patients and those within five year's of having finished treatment so we'll have to wait and see what the future brings.
Finally, we've had lots of happy emails about the language used by our delightful son yesterday. Glad he's been of service to brighten your day, but you'll understand if we wish for him to refrain from doing this too often! Having said that, just writing bum-head and grumpy-chops raises a smile!
Enjoy...
Just finished watching Andy Murray on Centre Court at Wimbledon and recognised some of Leo's fighting spirit in the Scot. Nice one, Murray. Keep it coming. Always enjoy a comeback kid going against the odds.
Off to the hospital tomorrow for kidney function test to assess how much his kidney function has been damaged as a result of the chemotherapy. We also have a much-needed appointment with some child therapists to help us in looking after Leo's emotional needs right now. We completely recognise that he's in an alien place in his life right now. Not only does he have doctors and nurses eyeing him up all the time, but we're no longer in Spain, he's not attending King's College which he absolutely loved, he has no friends here which he sees on a regular basis and he has to share one room with his Mum and Dad; now that final one alone is enough to make anyone go crazy!
Wednesday sees another day of family as my brother, his wife and baby Sophie are still here from Dubai, as it's Sophie's Christening on Sunday. Leo cannot wait to see baby Sophie again and as we're not sure if he's allowed to travel as far as a town near Gatwick whilst on treatment, this will be the last time he sees Sophie for a long while and probably until they all come to the UK as I doubt we'll be able to travel to Dubai for a long time. Travel insurance alone is prohibitive for cancer patients and those within five year's of having finished treatment so we'll have to wait and see what the future brings.
Finally, we've had lots of happy emails about the language used by our delightful son yesterday. Glad he's been of service to brighten your day, but you'll understand if we wish for him to refrain from doing this too often! Having said that, just writing bum-head and grumpy-chops raises a smile!
Enjoy...
Sunday, June 29, 2008
Grumpy-chops and Bum-head
Just writing that headline makes be laugh but not half as much as when Leo called me both these names today. And after so many hard days with Leo, at what point do PJ and I, as his parents, tell him off for a) being cheeky to his mother and b) using the words grumpy-chops and bum-head? And where on earth did he hear these words anyway?
We all laughed together for about 15 minutes each time Leo said these words; they were used at different times this afternoon, so that's a good 30 minute giggle, altogether, as a family. Not sure when the last time was that we did this and it felt like good old times and very normal indeed. Should we now relish the day he calls me grumpy-chops and or bum-head again?????
Laughter may not be the best medicine for Leo right now, but it sure helps ease the stress for all of us, that's for sure. So all I can say is, if you fancy a good giggle, use one of these phrases today (even if it's in your head at someone who's annoying you) and you're sure to cheer up!!! (But don't blame any of us if you get in trouble!)
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