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...
Saturday, October 25, 2008
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?
Wednesday, October 01, 2008
Lost and Found
Isn't it amazing that the news is full of terrible things going on around the world..it's all doom and gloom, isn't it? How many times a day could the media make us think the world is full of bad people? And yet...in the space of 36 hours, I have met and been in contact with countless people, known and unknown to me and our family, who have shown such acts of kindness, I have probably cried more these last couple of days than I have since Leo was diagnosed (well, nearly anyway!)
At the Eye Hospital in Bristol yesterday, this rather more mature lady with a walking frame offered to help me as I bent down to pick up something I dropped, whilst I was carrying a sleeping lion (Leo?!) Seriously, I am not sure she could have actually bent down or helped me with Leo, but the look in her eyes was that she really wanted to help.
Also at the Eye Hospital, the pharmacist could see I was struggling so came over to give me the prescription as opposed to me having to go to the counter under the weight of Leo. These people were going out of their way to help me, albeit it was obvious I was struggling, but twice in one day to be offered help?
This was the offer of help from people unknown to me. Today, I was reduced to tears (again) by the most amazing kindness of an old friend from school with whom I have had little contact, except Facebook, for over 17 years. Matt Tombs was always a good guy. We all knew that! A while ago when he heard about Leo's cancer, he offered to promote and do a gig to raise money for a holiday for Leo and funds for Clic Sargent. Now we're nearly on the home-straight in terms of treatment, I gave him the nod and said we're now ready to think about fundraising. Well, to say he's on the case is an understatement. Looks like we'll be having a full-on day with face painting, an auction, a fully licensed bar, bands, open-mic and much more. Amazing...just amazing, and all this from a lost and found friend who has a huge heart. Once we know where and when this will be, details will be here so if you'd like to come along for some fun and fundraising, the more the merrier.
Today the most lovely Clic Sargent Community Nurse, Caroline, came to the house to take Leo's blood. It's always checked before chemo to make sure his he is well enough to have the chemotherapy. Caroline was such a lovely, warm lady..well she'd have to be to do the job she does. Clic Sargent, the awesome charity for kids with cancer in the UK, pay for this service which will now help us a significant amount on a weekly basis. Her visits will negate the need for us to fight the traffic, find a parking space at an already over-burdened hospital and then reduce the risk of infection for Leo by reducing hospital time as that's where most infections manifest. This service will help Leo keep as comfortable as possible in familiar surroundings, by coming to the house to do his routine tests. She can also answer my questions, and that's alot of questions, over a cup of tea whilst Leo sits drawing, playing or watching TV.
In terms of Leo's eye, his cornea was raw and very dry, and past where other 'normal' eye drops would have helped. So we're back to the antibiotic ointment and within a day of using it, Leo is still extremely sensitive to light and so wearing his sunglasses and hat inside the house BUT it's looking much easier for him and less blood-shot, thank goodness. The doctors had talked about further imaging (MRI etc) to see if it's tumour related yesterday, but fortunately the eye doctors were more easily convinced the problem is radiotherapy related. Phew!
At the Eye Hospital in Bristol yesterday, this rather more mature lady with a walking frame offered to help me as I bent down to pick up something I dropped, whilst I was carrying a sleeping lion (Leo?!) Seriously, I am not sure she could have actually bent down or helped me with Leo, but the look in her eyes was that she really wanted to help.
Also at the Eye Hospital, the pharmacist could see I was struggling so came over to give me the prescription as opposed to me having to go to the counter under the weight of Leo. These people were going out of their way to help me, albeit it was obvious I was struggling, but twice in one day to be offered help?
This was the offer of help from people unknown to me. Today, I was reduced to tears (again) by the most amazing kindness of an old friend from school with whom I have had little contact, except Facebook, for over 17 years. Matt Tombs was always a good guy. We all knew that! A while ago when he heard about Leo's cancer, he offered to promote and do a gig to raise money for a holiday for Leo and funds for Clic Sargent. Now we're nearly on the home-straight in terms of treatment, I gave him the nod and said we're now ready to think about fundraising. Well, to say he's on the case is an understatement. Looks like we'll be having a full-on day with face painting, an auction, a fully licensed bar, bands, open-mic and much more. Amazing...just amazing, and all this from a lost and found friend who has a huge heart. Once we know where and when this will be, details will be here so if you'd like to come along for some fun and fundraising, the more the merrier.
Today the most lovely Clic Sargent Community Nurse, Caroline, came to the house to take Leo's blood. It's always checked before chemo to make sure his he is well enough to have the chemotherapy. Caroline was such a lovely, warm lady..well she'd have to be to do the job she does. Clic Sargent, the awesome charity for kids with cancer in the UK, pay for this service which will now help us a significant amount on a weekly basis. Her visits will negate the need for us to fight the traffic, find a parking space at an already over-burdened hospital and then reduce the risk of infection for Leo by reducing hospital time as that's where most infections manifest. This service will help Leo keep as comfortable as possible in familiar surroundings, by coming to the house to do his routine tests. She can also answer my questions, and that's alot of questions, over a cup of tea whilst Leo sits drawing, playing or watching TV.
In terms of Leo's eye, his cornea was raw and very dry, and past where other 'normal' eye drops would have helped. So we're back to the antibiotic ointment and within a day of using it, Leo is still extremely sensitive to light and so wearing his sunglasses and hat inside the house BUT it's looking much easier for him and less blood-shot, thank goodness. The doctors had talked about further imaging (MRI etc) to see if it's tumour related yesterday, but fortunately the eye doctors were more easily convinced the problem is radiotherapy related. Phew!
Monday, September 29, 2008
GRIM
It's Nicola, one of Helen's cousins here.
Donna (another cousin) and I are planning to run in the GRIM on Sunday 7th December. This is an 8 mile trot through the Surrey countryside, just a few mud baths and cargo nets to negotiate!! See the website http://www.grimchallenge.co.uk/.
It is "grim" but nothing compared to what little Leo has endured over the last few months.
We would like to do this to kick start a "Leo Fund", raising money that can be used to send Leo on a trip of a lifetime to Euro Disney to signify the end of his treatment, and / or, if the fund gets big enough, to be saved as a contingency for any future treatment that may be required, and to be given to CLIC Sargent at a time when the fund may no longer be required so as other children and families can benefit during diagnosis and treatment.
I must stress this is not being set up as a charity as you cannot set up a charity for an individual, this is a way of raising money through financial gifts.
It would be great if others could join us and run as "Team Leo" all raising money. I am happy to organise, just drop me an email to nkdale@hotmail.com.
If you don't fancy running with us, perhaps you could consider sponsoring us so that we can get Team Leo's fund well and truly underway.
Nicola
Donna (another cousin) and I are planning to run in the GRIM on Sunday 7th December. This is an 8 mile trot through the Surrey countryside, just a few mud baths and cargo nets to negotiate!! See the website http://www.grimchallenge.co.uk/.
It is "grim" but nothing compared to what little Leo has endured over the last few months.
We would like to do this to kick start a "Leo Fund", raising money that can be used to send Leo on a trip of a lifetime to Euro Disney to signify the end of his treatment, and / or, if the fund gets big enough, to be saved as a contingency for any future treatment that may be required, and to be given to CLIC Sargent at a time when the fund may no longer be required so as other children and families can benefit during diagnosis and treatment.
I must stress this is not being set up as a charity as you cannot set up a charity for an individual, this is a way of raising money through financial gifts.
It would be great if others could join us and run as "Team Leo" all raising money. I am happy to organise, just drop me an email to nkdale@hotmail.com.
If you don't fancy running with us, perhaps you could consider sponsoring us so that we can get Team Leo's fund well and truly underway.
Nicola
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