Seriously...after over three weeks of not eating anything and only consuming milk, how much spaghetti bolognese do you think a 3 year old can eat? Lots and lots, is the surprising and very pleasing answer.
The docs have let Leo come home to Clic House this evening and we're back in the the Oncology Day Beds Ward for check ups and IV antibiotics on Tuesday and Wednesday (this is Monday's update but it's past midnight, hence the date stamp on this blog post).
After a day where Leo was sick alot and slept in between, we had thought he was going to be kept in and actually, he doesn't need to take up a hospital bed. We know that we have to get him back there if his temp spikes; and if we're at all worried, we can call the ward directly 24/7. The care for Leo is second to none and so we're confident he's in safe hands. Plus having him home and giving him some normality, despite him feeling rubbish, feels like the right thing for him right now.
We had a little scare earlier; Leo asked to go to the 'red' restaurant (Pizza Hut) as he wanted spaghetti bolognese and so after five nights in hospital, PJ and I could not say no. Neither of us thought he would eat a thing but three pieces of garlic bread and nearly two bowls of spag bol later, he spiked a temp of 37.9. If it had gone up by 0.1 degrees, and stayed that way for 30 minutes, it would have been back to hospital. It didn't happen, thank goodness and so back to Clic House it was! Phew! Keeping an eye on him through the night though (hence the late writing of this post) and he's back to Day Beds Ward for 11am.
We're also off to see our new house here in Bristol tomorrow, just before the hospital visit. Cannot wait! We're all quite excited. Leo even asked if we were sleeping at our new house tonight and I said we couldn't as we have no beds or furniture, to which he replied so beautifully;
"Clic House have beds actually, Mummy; we can have them!"
He wasn't being precocious, just very matter of fact. Clic House does have beds but they're Clic's, not ours! Once the deposit is sorted and the Housing Benefit done, we can arrange to buy furniture from places such as the Sofa Project and the Catholic Church also have things we can purchase. We're conscious that we want and need to make the house a proper home for us as a family, as well as for Leo on a personal level. He needs to feel secure and happy and so we're going to do all we can to involve him in our decisions, except we won't be taking the beds with us from Clic (even though they're extremely comfortable!), and we certainly won't ask if he wants to paint the place....it would end up red from top to bottom, inside and out!
Tuesday, July 15, 2008
Sunday, July 13, 2008
The Snowball Effect...in More Ways Than One
The 'Disney Fund' is snowballing in that we've had another offer of some funds as soon as we sort things out and make it all official. PJ has looked into it and we need to set up a Company Limited by Guarantee so as it's all legal etc. We also will initially raise funds for the Disney trip, but if at some stage we need to pursue other, more pioneering treatment such as proton radiotherapy in Boston (if the tumour does not do what want it to and skip town), then we'll use the fund to ensure we are able to do all we can for Leo. Along the way, we're also going to raise funds for Clic Sargent who have and still are, an absolute Godsend for us and plenty of other children and families in similar positions across the UK.
PJ and I will be speaking with Leo's doctors tomorrow to find out when a good time would be for us to plan the Disney trip for Leo. I will also speak with the Christian Lewis Foundation who are a charity who help children like Leo to get to Disney so more details to follow.
Things are also snowballing as PJ is talking about throwing himself out of a plane, all in the name of Clic Sargent and with a parachute on his back, although he may split it with the Disney Fund. And I am trying to get in touch with all the old celebrities from both the sports world and showbiz whom I once knew who can help us organise a big night of celebration, dancing, singing, eating, drinking etc etc, and to raise some funds either towards the end of this year, or perhaps next year is a little more realistic...it's not as though we have enough to think about, is it??
Right now, PJ and I are feeling like we need to use our energies to focus our lives for the greater good. It's too easy to become marooned on Planet Cancer and so if we can use this energy to raise funds for Leo and support other children and their families, then why not? If ever there was a time when we felt that life is to short, now is it. Yes, we've moved to Chicago and yes, we've moved to Spain, and talked about doing so many other things. Now is a time for action and so if we're not motivated to take action now, when will we be?
The other final snowballing effect is it looks like we may be able to move into the house here in Bristol in the next week or so - as long as it's still available. It will be a very small step to normal family life but a step, all the same.
Finally, Leo's not done so well on this round of chemo. By that I mean he's been much more sick and much more tired, but very cute with it. He was pretending to be in school this afternoon and was having 'conversations' with Miss Cara (his fabulous teacher at King's College, Murcia) whilst also telling me to go to work! Do you think he's trying to tell me something? He's also managed nearly a whole jam sandwich which will be his first proper 'meal' for 3 weeks!
The docs have kept him in hospital after completing his chemo this morning as his line is still not so good; it's better but not 100% so it's a wait and see game right now. Whilst the decision had been made on Thursday to take the line out, as it's responded well to the IV antibiotics, perhaps we'll get away with it this time. I'd rather them not take the line out; not because of the two general anaethetics required to take it out and then put another one in. I'd rather the line stayed put as I don't want Leo getting all excited and thinking he's better. It will be awful to then have to tell him he needs another one and I fear it could set him back mentally. Sounds silly to say that about a three year old but his mind is just as crucial as the rest of it as we've learned over the past few weeks. We're on top of the mental game right now with him and he's in a good place. I think seeing Sophie, Andrew, Julia, Jack and Marie over the past weeks has boosted him immensely, plus the 'pillow /anger' talk PJ and I have had with him, and so we want to do all we can to prevent any cause for regression to the angry Leo we had seen before.
Anyway, tomorrow's another day...
PJ and I will be speaking with Leo's doctors tomorrow to find out when a good time would be for us to plan the Disney trip for Leo. I will also speak with the Christian Lewis Foundation who are a charity who help children like Leo to get to Disney so more details to follow.
Things are also snowballing as PJ is talking about throwing himself out of a plane, all in the name of Clic Sargent and with a parachute on his back, although he may split it with the Disney Fund. And I am trying to get in touch with all the old celebrities from both the sports world and showbiz whom I once knew who can help us organise a big night of celebration, dancing, singing, eating, drinking etc etc, and to raise some funds either towards the end of this year, or perhaps next year is a little more realistic...it's not as though we have enough to think about, is it??
Right now, PJ and I are feeling like we need to use our energies to focus our lives for the greater good. It's too easy to become marooned on Planet Cancer and so if we can use this energy to raise funds for Leo and support other children and their families, then why not? If ever there was a time when we felt that life is to short, now is it. Yes, we've moved to Chicago and yes, we've moved to Spain, and talked about doing so many other things. Now is a time for action and so if we're not motivated to take action now, when will we be?
The other final snowballing effect is it looks like we may be able to move into the house here in Bristol in the next week or so - as long as it's still available. It will be a very small step to normal family life but a step, all the same.
Finally, Leo's not done so well on this round of chemo. By that I mean he's been much more sick and much more tired, but very cute with it. He was pretending to be in school this afternoon and was having 'conversations' with Miss Cara (his fabulous teacher at King's College, Murcia) whilst also telling me to go to work! Do you think he's trying to tell me something? He's also managed nearly a whole jam sandwich which will be his first proper 'meal' for 3 weeks!
The docs have kept him in hospital after completing his chemo this morning as his line is still not so good; it's better but not 100% so it's a wait and see game right now. Whilst the decision had been made on Thursday to take the line out, as it's responded well to the IV antibiotics, perhaps we'll get away with it this time. I'd rather them not take the line out; not because of the two general anaethetics required to take it out and then put another one in. I'd rather the line stayed put as I don't want Leo getting all excited and thinking he's better. It will be awful to then have to tell him he needs another one and I fear it could set him back mentally. Sounds silly to say that about a three year old but his mind is just as crucial as the rest of it as we've learned over the past few weeks. We're on top of the mental game right now with him and he's in a good place. I think seeing Sophie, Andrew, Julia, Jack and Marie over the past weeks has boosted him immensely, plus the 'pillow /anger' talk PJ and I have had with him, and so we want to do all we can to prevent any cause for regression to the angry Leo we had seen before.
Anyway, tomorrow's another day...
The Starfish Story
I've just received this email from a friend with whom I had some great times with over a decade ago and so they've never even met Leo! However, he thought I'd like this little story and also his offer of some funds for the Team Leo Disney Fund (name still to be confirmed).
So here's the story called;
The Starfish Story
One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean.
Approaching the boy, he asked, “What are you doing?”
The youth replied, “Throwing starfish back into the ocean.
The surf is up and the tide is going out. If I don’t throw them back, they’ll die.”
“Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference!”
After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf.
Then, smiling at the man, he said…”I made a difference for that one.”
So here's the story called;
The Starfish Story
One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean.
Approaching the boy, he asked, “What are you doing?”
The youth replied, “Throwing starfish back into the ocean.
The surf is up and the tide is going out. If I don’t throw them back, they’ll die.”
“Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference!”
After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf.
Then, smiling at the man, he said…”I made a difference for that one.”
Saturday, July 12, 2008
Question after Unanswered Question
Leo was quite sick today with his chemo and also much more tired than he's been on other cycles, apart from the first one which feels like years ago now. If it feels like that for us, how on earth must Leo feel?
We're advised there's no point reading into how Leo reacts to his chemo, although you kind of half-hope that if he's more sick and tired, perhaps the chemo is doing more to the kill the cancer? Or could it be the opposite of that? Could it be that if he's unwell with it, that the chemo is not doing anything but making him sick? So many questions and unfortunately, no real answers at this stage.
We've 'google'd' the doc at the Royal Marsden who will be in charge of Leo's radiotherapy and both PJ and I are really pleased that we're going there. Dr Frank Saran has loads of experience and is one of the best in the UK at the best cancer hospital in the UK. So hopefully this all bodes well for as good a treatment plan for Leo as can be possible. Who knows? Yet another question which no-one can answer for us.
We're advised there's no point reading into how Leo reacts to his chemo, although you kind of half-hope that if he's more sick and tired, perhaps the chemo is doing more to the kill the cancer? Or could it be the opposite of that? Could it be that if he's unwell with it, that the chemo is not doing anything but making him sick? So many questions and unfortunately, no real answers at this stage.
We've 'google'd' the doc at the Royal Marsden who will be in charge of Leo's radiotherapy and both PJ and I are really pleased that we're going there. Dr Frank Saran has loads of experience and is one of the best in the UK at the best cancer hospital in the UK. So hopefully this all bodes well for as good a treatment plan for Leo as can be possible. Who knows? Yet another question which no-one can answer for us.
Friday, July 11, 2008
Update
Thinking we'll still get the house sorted to rent here in Bristol so as we can have some normality before the temporary relocation to Surrey and then at least PJ can come back to start work in September, if possible / if Leo is well enough. I think it will also be easier to sort out ahead of going to the Royal Marsden, rather than waiting until we come back as we don't know how unwell Leo will be when we come back, or even when we'll be coming back. It should be six weeks in total but who knows what will happen?
I've also heard from a old friend from senior school who plays in a few different bands and he's offered to do a couple of charity gigs to raise money for Leo. PJ and I have decided to definitely aim for a trip for Leo to Disney World so as he can have the best life possible from here on in. No-one knows what's around the corner so we're going to aim for the best in everything from now on.
Thursday, July 10, 2008
Strange Week
No updates for a couple of days for a few reasons. Leo has another staph infection in his skin at the exit of his Hickmann line. This means that as it's his third line infection and this has happened every cycle of chemo, the line will definitely have to come out this time.
So here's the plan...line stays in for IV antibiotics for a few more days and also his fourth cycle of chemo which starts tomorrow afternoon. The line then comes out Monday or Tuesday, or at some point soon. The docs then leave the line out for a week or two to give Leo a chance to get better, and if they introduce another line too quickly, the staph infection / bug could enter his body more easily as you're introducing a foreign body into the system. So the line comes out via a general anaesthetic and then back in at some point, again under a general, before the next lot of chemo in 3 weeks.
Had a good week other than that. Had been hoping to get through this cycle without an in-patient visit to the hospital. The Christening on Sunday was lovely and it was nice to see my brother, Andrew and his wife, Julia so happy and proud of their beautiful daughter, Sophie. I also caught up briefly with some old school friends of Andrew's and one, Scott, is wanting to do some fundraising for Leo if he secures a place in next April's London Marathon. So we've decided that we will now aim for a trip to DisneyWorld, Florida as soon as we're able to. Being at the Christening without Leo and PJ felt terrible; how many more family events will one or other of us have to go to without Leo?
Marie and Jack came over from Spain and Leo just loved it. Jack and Leo just slotted back into the swing of things so easily, and it was amazing and heart-warming to see Leo playing nicely with his best friend; there was definitely a sense of normality except for the visit off to A&E again last night.
We took advantage of the lovely weather on Tuesday (yes, sunshine..remember sunshine those of us in the UK?), and took a good stroll around Bristol Zoo and then visited the park at Blaise Castle with the boys in their pirate outfits. No guest blog writing from Marie as we've kind of had our hands full with our boys, shopping and the hospital, of course!
Not sure if I updated about the Royal Marsden but Leo will definitely be off to the specialist cancer hospital in Surrey for his six weeks of radiotherapy, starting at the beginning of August. He'll then come back to the Bristol Children's Hospital to complete treatment, as long as he's well enough to do so. It also looks like Leo will definitely be having the additional maintenance chemotherapy regime of daily chemo for six months as the aggressive nature of alveolar rhabdomyosarcoma leads the docs to think more chemo is the best way to treat it and maximise Leo's chances of survival.
So the house move is now on hold as we are off to Surrey for at least 6 weeks in 3 weeks time and then who knows what the future holds?
So here's the plan...line stays in for IV antibiotics for a few more days and also his fourth cycle of chemo which starts tomorrow afternoon. The line then comes out Monday or Tuesday, or at some point soon. The docs then leave the line out for a week or two to give Leo a chance to get better, and if they introduce another line too quickly, the staph infection / bug could enter his body more easily as you're introducing a foreign body into the system. So the line comes out via a general anaesthetic and then back in at some point, again under a general, before the next lot of chemo in 3 weeks.
Had a good week other than that. Had been hoping to get through this cycle without an in-patient visit to the hospital. The Christening on Sunday was lovely and it was nice to see my brother, Andrew and his wife, Julia so happy and proud of their beautiful daughter, Sophie. I also caught up briefly with some old school friends of Andrew's and one, Scott, is wanting to do some fundraising for Leo if he secures a place in next April's London Marathon. So we've decided that we will now aim for a trip to DisneyWorld, Florida as soon as we're able to. Being at the Christening without Leo and PJ felt terrible; how many more family events will one or other of us have to go to without Leo?
Marie and Jack came over from Spain and Leo just loved it. Jack and Leo just slotted back into the swing of things so easily, and it was amazing and heart-warming to see Leo playing nicely with his best friend; there was definitely a sense of normality except for the visit off to A&E again last night.
We took advantage of the lovely weather on Tuesday (yes, sunshine..remember sunshine those of us in the UK?), and took a good stroll around Bristol Zoo and then visited the park at Blaise Castle with the boys in their pirate outfits. No guest blog writing from Marie as we've kind of had our hands full with our boys, shopping and the hospital, of course!
Not sure if I updated about the Royal Marsden but Leo will definitely be off to the specialist cancer hospital in Surrey for his six weeks of radiotherapy, starting at the beginning of August. He'll then come back to the Bristol Children's Hospital to complete treatment, as long as he's well enough to do so. It also looks like Leo will definitely be having the additional maintenance chemotherapy regime of daily chemo for six months as the aggressive nature of alveolar rhabdomyosarcoma leads the docs to think more chemo is the best way to treat it and maximise Leo's chances of survival.
So the house move is now on hold as we are off to Surrey for at least 6 weeks in 3 weeks time and then who knows what the future holds?
Tuesday, July 08, 2008
Update...Off to the Royal Marsden
Confirmed today that Leo's radiotherapy is definitely going to be at the Royal Marsden, the UK's specialist cancer hospital based in Surrey.
And that's about all I can update right now as I'm being instructed to put down the laptop and relax...yeah, right! Leo's best friend Jack and his mum, Marie (my best friend from Spain) are here to give us some sense of normal life...and it is actually working. Leo and Jack have just got on with things and held hands walking through Bristol Zoo and dressed as pirates at Blaise Castle. Another normal day then?!
Right, so tomorrow brings the first Team Leo Guest Blogger in Marie so all eyes to the ready! Update tomorrow, and more about our move to Surrey as and when we have it. If anyone knows anyone who has a spare apartment /house for rent for 6 weeks from the beginning of August, then do let us know, as long as it's very close to the Royal Marsden.
Love H x
And that's about all I can update right now as I'm being instructed to put down the laptop and relax...yeah, right! Leo's best friend Jack and his mum, Marie (my best friend from Spain) are here to give us some sense of normal life...and it is actually working. Leo and Jack have just got on with things and held hands walking through Bristol Zoo and dressed as pirates at Blaise Castle. Another normal day then?!
Right, so tomorrow brings the first Team Leo Guest Blogger in Marie so all eyes to the ready! Update tomorrow, and more about our move to Surrey as and when we have it. If anyone knows anyone who has a spare apartment /house for rent for 6 weeks from the beginning of August, then do let us know, as long as it's very close to the Royal Marsden.
Love H x
Saturday, July 05, 2008
Silence is Golden
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!
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!
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...
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