Leo and I have had a nice day together as PJ has not been well this afternoon. Stress does all sorts of things to people and he needed some time on his own to gather his thoughts and actually get some sleep as neither of us are sleeping right now.
So Leo and I went off to see Charlie, our friend's lovely son who Leo knows from before we moved to Spain. He has also seen him lots since our return and each time, they just play so well together. Charlie could not care less if Leo has no hair, no eye lashes, no eye brows and a red bow around his neck from the bag of his central line. Kids are just fabulous for just getting on with things and leaving it to us parents to worry about everything! One of our duties as a parent, I know!
On our return home this evening, Leo pretended to talk to his friends Ross, Jack and Saul in Spain on the phone and I overheard him say 'no, I can't come back to Spain as I have to take my tablets, Ross'.
Neither PJ nor I have ever mentioned tablets to him and usually he talks about medicines so that was both strange and sad, that as a 3 year old (albeit he's 4 in just over 2 months time), that he has the presence of mind to know that it's because of perhaps more tablets and meds that we're here in the UK.
Unfortunately being in the UK is not helping his eczema, which is back with a vengeance, and his mould allergy is also making itself known. Being in the UK has its advantages of course, but we're hoping that his eczema and chest problems settle quickly.
Saturday, November 15, 2008
Friday, November 14, 2008
School's Shut...Honest!
The first words from Leo when he woke up this morning were;
'School today, Mummy?'
Quick, think of something...urm, how about;
'Sorry Leo, school's shut today!'
What else could I say? Of course the school is open five days a week but we've only got him there for 3 afternoons as we thought he'd be too tired and we'd need to ease him in to a 'normal' existence!
Next week will be a little hectic as we're at the hospital Monday, Tuesday and Wednesday.
Tuesday is kind of run of the mill as it's a GFR test which checks Leo's kidney function to make sure the high dose chemo he's had has not caused any kidney damage. They inject a nuclear compound into his central line and draw blood over the course of the next 5 hours to see how his body secretes the nuclear compound. So far, his kidney function has been fine so no worries there.
Wednesday is back to the Eye Hospital again. Seems like the 3 weeks between his eye appointments fly by and given Leo used to hate people looking at him and especially his eyes, he seems to do well there and 'comply' with what they need to test in order to make their assessments accurately.
Last time we went to the Eye Hospital, Leo's right eye lid seemed only very slightly swollen and maybe lagging a little, but only if you knew to look for it. Unfortunately since then, his eyelid is now about halfway down his eye and he is squinting again whilst also pointing with his finger when watching TV or pointing at distances, which is what happened when he was first diagnosed.
Hence his MRI, which was already schedule for Monday, as well as what the eye docs have to say are both crucial. This next week is probably the most scary since his diagnosis as no-one seems to know why his eyelid is doing what it's doing. The eye docs did previously say his eyelid may droop over a few years and if so, it's cosmetic and easily sorted with a small surgery.
It would be unusual for a relapse so soon after treatment but not unheard off, which is what Leo's consultant told us last Monday. So we've known this since Monday but I could not bring myself to physically write it down. However, it's kind of therapeutic to do so now and thought you may like to know what's going on. We have the fear of relapse upon us for the next 5 years with it being highly unlikely to recur after 5 years. However the thought that it may be back already had never really occurred so we cannot see, think, eat, drink or breath without thinking about Monday and what the MRI will or will not show.
We've been advised that it may be likely that the MRI will not show all that much in terms of relapse as a few cancer cells in a particular place may not be visible on a scan and so we're prepared for an inconclusive result on Monday. Reason also being that there may still be some swelling locally post-radiotherapy, however this would not cause his eyelid to swell and droop as quickly as it is doing now.
So who knows? Tomorrow's another day and fortunately we've very supportive friends near us here in Bristol and so despite PJ and I having colds and not sleeping for this past week, we're going to see if we can put our fears aside as it doesn't help anyone and make sure we can have a fab weekend with Leo...at the risk of him being bored with Mummy and Daddy!! He'd prefer school any day!!!
'School today, Mummy?'
Quick, think of something...urm, how about;
'Sorry Leo, school's shut today!'
What else could I say? Of course the school is open five days a week but we've only got him there for 3 afternoons as we thought he'd be too tired and we'd need to ease him in to a 'normal' existence!
Next week will be a little hectic as we're at the hospital Monday, Tuesday and Wednesday.
Tuesday is kind of run of the mill as it's a GFR test which checks Leo's kidney function to make sure the high dose chemo he's had has not caused any kidney damage. They inject a nuclear compound into his central line and draw blood over the course of the next 5 hours to see how his body secretes the nuclear compound. So far, his kidney function has been fine so no worries there.
Wednesday is back to the Eye Hospital again. Seems like the 3 weeks between his eye appointments fly by and given Leo used to hate people looking at him and especially his eyes, he seems to do well there and 'comply' with what they need to test in order to make their assessments accurately.
Last time we went to the Eye Hospital, Leo's right eye lid seemed only very slightly swollen and maybe lagging a little, but only if you knew to look for it. Unfortunately since then, his eyelid is now about halfway down his eye and he is squinting again whilst also pointing with his finger when watching TV or pointing at distances, which is what happened when he was first diagnosed.
Hence his MRI, which was already schedule for Monday, as well as what the eye docs have to say are both crucial. This next week is probably the most scary since his diagnosis as no-one seems to know why his eyelid is doing what it's doing. The eye docs did previously say his eyelid may droop over a few years and if so, it's cosmetic and easily sorted with a small surgery.
It would be unusual for a relapse so soon after treatment but not unheard off, which is what Leo's consultant told us last Monday. So we've known this since Monday but I could not bring myself to physically write it down. However, it's kind of therapeutic to do so now and thought you may like to know what's going on. We have the fear of relapse upon us for the next 5 years with it being highly unlikely to recur after 5 years. However the thought that it may be back already had never really occurred so we cannot see, think, eat, drink or breath without thinking about Monday and what the MRI will or will not show.
We've been advised that it may be likely that the MRI will not show all that much in terms of relapse as a few cancer cells in a particular place may not be visible on a scan and so we're prepared for an inconclusive result on Monday. Reason also being that there may still be some swelling locally post-radiotherapy, however this would not cause his eyelid to swell and droop as quickly as it is doing now.
So who knows? Tomorrow's another day and fortunately we've very supportive friends near us here in Bristol and so despite PJ and I having colds and not sleeping for this past week, we're going to see if we can put our fears aside as it doesn't help anyone and make sure we can have a fab weekend with Leo...at the risk of him being bored with Mummy and Daddy!! He'd prefer school any day!!!
Thursday, November 13, 2008
Independent or what?
A huge week this week - Leo started school at a lovely Montessori school here in Bristol. Having been a bit nervous about whether he'd cling to our legs and not want to be left without us...well, he's just done so very well!
He practically told us to leave him there, and yet the expectation had been that Leo and I would stay for about an hour each day this week and then increase it next week, with me perhaps leaving him for increasing amounts of time over the next few weeks. In fact, it's gone so well, he's been happy to be left to be a 'normal' child for a few hours each afternoon. Wonderful. Jujst fabulous. Perhaps we'll increase his afternoons there from three to four quite soon!
We always knew he had that independent streak in him before he had cancer and now it's as evident as ever, which is very welcome. He's had so much heartache over the past 7 months that if he'd become distressed or upset at being left at school on his own, we'd immediately question whether it was right for him at this time; clearly it is!
An old friend (not in age), has visited us this week also. The lovely Ian Howat has been to say hi and we wished he lived around the corner! Both PJ and I worked with Ian years ago before we got married and had Leo, and he remains a supportive friend. To say Leo did not want Ian to leave is an understatement. Ian was amazing with Leo; there was lots of playing up and showing off, and that was just Ian!
He practically told us to leave him there, and yet the expectation had been that Leo and I would stay for about an hour each day this week and then increase it next week, with me perhaps leaving him for increasing amounts of time over the next few weeks. In fact, it's gone so well, he's been happy to be left to be a 'normal' child for a few hours each afternoon. Wonderful. Jujst fabulous. Perhaps we'll increase his afternoons there from three to four quite soon!
We always knew he had that independent streak in him before he had cancer and now it's as evident as ever, which is very welcome. He's had so much heartache over the past 7 months that if he'd become distressed or upset at being left at school on his own, we'd immediately question whether it was right for him at this time; clearly it is!
An old friend (not in age), has visited us this week also. The lovely Ian Howat has been to say hi and we wished he lived around the corner! Both PJ and I worked with Ian years ago before we got married and had Leo, and he remains a supportive friend. To say Leo did not want Ian to leave is an understatement. Ian was amazing with Leo; there was lots of playing up and showing off, and that was just Ian!
Sunday, November 09, 2008
I'm Not Brave
We're spoken to quite a few people this past week or so who have found the words describing our fantastic son quite an inspiration. And when this event I am about to tell happened earlier today and I retold it to PJ, he said straight away that it needs to be put here. It frightens me to have to write this as well as makes me feel wholly hopeless. As parents, we're here to protect our children, aren't we? And yet, when it comes to things like childhood cancer, it's so very evident that we don't have it within our powers to protect our children 100%.
And so here's what happened today;
Leo and I were cuddled together watching Loony Tunes Babies and one of Leo's favourite characters, Bugs Bunny, was being particularly brave. I took the opportunity to say that I thought Leo was brave and even more so than Bugs Bunny. Leo adamantly shook his head and said 'I'm not brave'. I said that he was and that his cards from family and friends once he'd finished his extensive chemo and treatment a week or so ago, told him he was a brave boy and many people thought he was very brave. He answered, 'I'm not brave...I'm scared'.
Upset and shocked as I was, I said 'it's okay to be scared'. I just felt there's no point telling him not to be scared. We learned our lesson when at the beginning of this whole thing, he was getting very angry and we told him he was being naughty, thereby also getting angry ourselves. The therapists told us that of course he'd be angry. It was only natural. Life was scary and made him angry because we'd be in Spain, he was settled in school and had lots of fun with his friends. What could I say? Tell him not to be scared? What's the point in that?
Where did we go so wrong? Are we not doing enough to protect him from all this cr*p? I have to admit it does answer a massive question I've had whereby each time I read his cards to him which congratulated him on being brave, he got really angry and very upset. At least now we know what's going on and will ask the Clic Sargent therapist on Tuesday what we can do to help him, or at last try to...
On a more positive note, he has started eating these last couple of days. He demolished a small plate of spaghetti bolognese last night as well as some chips and tiny piece of chicken for lunch. So hopefully no nasogastric tube will be needed but we'll wait and see. He is also meant to start nursery again on Tuesday afternoon but if his bloods have not come back up to show he has some sort of an immune system, then we'll have to postpone until his neutophils and white blood count are considered safe.
Today we pretended to have a picnic on the beach by way of laying a towel on the floor in the lounge and eating lunch there. Leo's imagination was awesome as he built sandcastles and then wiped his hands off before putting on some suncream. He also needed sunglasses and told PJ and I to make sure our sunhats were on our heads...all make-believe but very real. It really minded us of the afternoons spent as a family and with friends on the beaches at Los Alcazares in Murcia.
Speaking of which, Leo's school in Spain, King's College have today held an amazing fundraising event with proceeds going to Clic Sargent here in the UK as well as a similar local charity in Murcia. It sounds like they had a very busy day with a huge golf tournament, a magician, lunch for 160 people, a raffle, face painting and all sorts of other activities. I'd imagine most of the people attending either cannot even remember Leo, have never met him or of course, remember our cheeky, energetic blond haired, blue-eyed boy from when he was in the Pre-Nursery class with Miss Cara and Miss Gill. He may not look the same, but inside our scared boy, he's still very cheeky, which is somewhat reassuring!
We're sorry that none of us could attend this tremendous event at King's College and often feel we've let them down by not attending, however as it turns out, Leo needed us both here - his temperature is still playing up, his food issue needed to be dealt with and whoever attended would not have been back in time for the meeting with his oncologist tomorrow afternoon, where we discuss for the final time, whether we head into the maintenance chemo regime for the next six months.
Tomorrow's another day...
And so here's what happened today;
Leo and I were cuddled together watching Loony Tunes Babies and one of Leo's favourite characters, Bugs Bunny, was being particularly brave. I took the opportunity to say that I thought Leo was brave and even more so than Bugs Bunny. Leo adamantly shook his head and said 'I'm not brave'. I said that he was and that his cards from family and friends once he'd finished his extensive chemo and treatment a week or so ago, told him he was a brave boy and many people thought he was very brave. He answered, 'I'm not brave...I'm scared'.
Upset and shocked as I was, I said 'it's okay to be scared'. I just felt there's no point telling him not to be scared. We learned our lesson when at the beginning of this whole thing, he was getting very angry and we told him he was being naughty, thereby also getting angry ourselves. The therapists told us that of course he'd be angry. It was only natural. Life was scary and made him angry because we'd be in Spain, he was settled in school and had lots of fun with his friends. What could I say? Tell him not to be scared? What's the point in that?
Where did we go so wrong? Are we not doing enough to protect him from all this cr*p? I have to admit it does answer a massive question I've had whereby each time I read his cards to him which congratulated him on being brave, he got really angry and very upset. At least now we know what's going on and will ask the Clic Sargent therapist on Tuesday what we can do to help him, or at last try to...
On a more positive note, he has started eating these last couple of days. He demolished a small plate of spaghetti bolognese last night as well as some chips and tiny piece of chicken for lunch. So hopefully no nasogastric tube will be needed but we'll wait and see. He is also meant to start nursery again on Tuesday afternoon but if his bloods have not come back up to show he has some sort of an immune system, then we'll have to postpone until his neutophils and white blood count are considered safe.
Today we pretended to have a picnic on the beach by way of laying a towel on the floor in the lounge and eating lunch there. Leo's imagination was awesome as he built sandcastles and then wiped his hands off before putting on some suncream. He also needed sunglasses and told PJ and I to make sure our sunhats were on our heads...all make-believe but very real. It really minded us of the afternoons spent as a family and with friends on the beaches at Los Alcazares in Murcia.
Speaking of which, Leo's school in Spain, King's College have today held an amazing fundraising event with proceeds going to Clic Sargent here in the UK as well as a similar local charity in Murcia. It sounds like they had a very busy day with a huge golf tournament, a magician, lunch for 160 people, a raffle, face painting and all sorts of other activities. I'd imagine most of the people attending either cannot even remember Leo, have never met him or of course, remember our cheeky, energetic blond haired, blue-eyed boy from when he was in the Pre-Nursery class with Miss Cara and Miss Gill. He may not look the same, but inside our scared boy, he's still very cheeky, which is somewhat reassuring!
We're sorry that none of us could attend this tremendous event at King's College and often feel we've let them down by not attending, however as it turns out, Leo needed us both here - his temperature is still playing up, his food issue needed to be dealt with and whoever attended would not have been back in time for the meeting with his oncologist tomorrow afternoon, where we discuss for the final time, whether we head into the maintenance chemo regime for the next six months.
Tomorrow's another day...
Friday, November 07, 2008
B is for Blood
We've had an improving few days on the energy front. This morning we've even had 'circle time' with PJ, Leo and I doing a bit of dancing and then sitting down to sing the alphabet for about an hour with Leo as our teacher. Each time we got to the 'now you know your ABC, next time will you XXX' Leo changed the final sentence to say things like 'swim in the sea..with me?', or 'have a cup of tea?' It was so nice and really warms our hearts that Leo loves learning and being in charge!
'A' therefore is having an 'absolutely' fabulous morning.
'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.
So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.
We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!
Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.
Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.
'A' therefore is having an 'absolutely' fabulous morning.
'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.
So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.
We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!
Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.
Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.
Wednesday, November 05, 2008
Yes You Can
Can we expect a first class health-care system which looks after our children to the best of their ability here in the UK? Yes you can!
Can we expect a mighty kick up the backside when cancer decides to take a bite? Yes you can!
Can we sometimes thank cancer for rearing its ugly head into all our lives to put things into perspective and see life for what it really is? Yes you can!
Can we expect the guys who do our car's MOT to use the rear seat-belts to ensure the safety of Leo's Winnie the Pooh teddy and Po of Tellytubbies fame? Yes you can! And how cute? True story; happened today and reduced me to tears!
Can we be completely shocked and ever so thankful when complete strangers offer advice, sympathy, a shoulder, friendly emails and even fundraising after they learn of our brave son's battle against cancer? Yes you can!
Okay, so I may be getting very carried away on the Obama train right now, but hey, isn't that what we're all here for? Let's get carried away. Let's dream and then set about making those dreams happen. And having fulfilled some of our family dreams and had others mightily dashed, I wouldn't have it any other way.
One thing that this lovely roller-coaster of a ride we've been on has taught me is that life is overwhelming at times, but it's how we deal with that which matters.
How many times have we wanted to crumble?
How many times have we been angry at each other?
How many times do we search Google for any glimmer of hope which the doctors have missed or an all-new, awesome treatment which will offer Leo and other children like him a cure?
Too many...but...these things always happened before but we thought of them as much more mundane because we weren't experiencing the daily feelings of fear that our son may not live to see his 9th birthday.
Yet from this point on, and you can remind me of this at any time, I am not going to allow that fear to ruin our lives. I promise from this point on to use that fear to strive for the best life we can give our son. I will also strive to ensure other families and children affected by this horrid, horrid thing called cancer, are able to continue to get the best care, support and love from people around them including Clic Sargent.
Can we be thankful that there are people who care enough to organise a Golf Fundraising Day at Leo's old school in Spain and most may never have even met Leo? Yes you can...
Can we expect a mighty kick up the backside when cancer decides to take a bite? Yes you can!
Can we sometimes thank cancer for rearing its ugly head into all our lives to put things into perspective and see life for what it really is? Yes you can!
Can we expect the guys who do our car's MOT to use the rear seat-belts to ensure the safety of Leo's Winnie the Pooh teddy and Po of Tellytubbies fame? Yes you can! And how cute? True story; happened today and reduced me to tears!
Can we be completely shocked and ever so thankful when complete strangers offer advice, sympathy, a shoulder, friendly emails and even fundraising after they learn of our brave son's battle against cancer? Yes you can!
Okay, so I may be getting very carried away on the Obama train right now, but hey, isn't that what we're all here for? Let's get carried away. Let's dream and then set about making those dreams happen. And having fulfilled some of our family dreams and had others mightily dashed, I wouldn't have it any other way.
One thing that this lovely roller-coaster of a ride we've been on has taught me is that life is overwhelming at times, but it's how we deal with that which matters.
How many times have we wanted to crumble?
How many times have we been angry at each other?
How many times do we search Google for any glimmer of hope which the doctors have missed or an all-new, awesome treatment which will offer Leo and other children like him a cure?
Too many...but...these things always happened before but we thought of them as much more mundane because we weren't experiencing the daily feelings of fear that our son may not live to see his 9th birthday.
Yet from this point on, and you can remind me of this at any time, I am not going to allow that fear to ruin our lives. I promise from this point on to use that fear to strive for the best life we can give our son. I will also strive to ensure other families and children affected by this horrid, horrid thing called cancer, are able to continue to get the best care, support and love from people around them including Clic Sargent.
Can we be thankful that there are people who care enough to organise a Golf Fundraising Day at Leo's old school in Spain and most may never have even met Leo? Yes you can...
Sunday, November 02, 2008
Patience is a ...
Patience is a virtue or in our world, pain in the backside! I'm terrible when it comes to waiting for things and so when Leo's temperature went to normal (36.8), on it's own i.e. with no paracetamol on Saturday morning, we felt elated, over-joyed and somewhat baffled! It was short-lived though as by 3pm, it had hit 37.9 again, and stayed there or thereabouts until this morning. Again, it was relatively okay this morning before again creeping back up to the right side of 38 degrees.
Now we have to be patient again and see what the next day and night has in store. Leo will have zero immune system at some point very soon and certainly in the next couple of days, which means that the normal rules apply. If the temp hits 38 degrees twice in the space of 30 minutes, or spikes at or over 38.5 degrees, it'll be another few days in hospital and more IV antibiotics. Urgh! Need to have more patience...
Also somewhat impatient at the fact Leo has an MRI booked for 15 days' time and another kidney function test. Having said that, and not sure if I'm repeating myself (again), but it's not this forthcoming MRI which matters. The docs won't compare this one to the last two. They'll wait another 3 months (February) before doing another MRI. They then compare those two for differences i.e. are there any changes / growth in the 'scar tissue' / white stuff that shouldn't be there on a 'normal' / non-cancer scan? I guess it will be simple to see as the cancer has only ever been in one side of his brain and head, and so it's simple, even for us, to see the differences between one side of the scan and the other.
Patience...wish we had more of it!
Now we have to be patient again and see what the next day and night has in store. Leo will have zero immune system at some point very soon and certainly in the next couple of days, which means that the normal rules apply. If the temp hits 38 degrees twice in the space of 30 minutes, or spikes at or over 38.5 degrees, it'll be another few days in hospital and more IV antibiotics. Urgh! Need to have more patience...
Also somewhat impatient at the fact Leo has an MRI booked for 15 days' time and another kidney function test. Having said that, and not sure if I'm repeating myself (again), but it's not this forthcoming MRI which matters. The docs won't compare this one to the last two. They'll wait another 3 months (February) before doing another MRI. They then compare those two for differences i.e. are there any changes / growth in the 'scar tissue' / white stuff that shouldn't be there on a 'normal' / non-cancer scan? I guess it will be simple to see as the cancer has only ever been in one side of his brain and head, and so it's simple, even for us, to see the differences between one side of the scan and the other.
Patience...wish we had more of it!
Friday, October 31, 2008
Playing the Waiting Game...
Leo's temperature is still not cooperating and got up to 38.8 degrees yesterday afternoon, only about 30 minutes after Sarah, Leo's lovely Clic Community Nurse had left. In fact whilst she was with us and taking Leo's bloods, his temp was 37.9 and 38.3 and as she left she said to call the Day Beds Ward at the Children's Hospital if it hit the all important 38.5. Lo and behold, his temp seemed to want to defy what we want.
Having said that, doctors are stumped as to why the temperature is spiking and why he's had a low grade fever for such a long time. Neither PJ nor I are ill, and nothing has changed since he was last admitted whilst neutropenic. They stuck a vacuum up Leo's nose yesterday to grab some bogey (sorry, that's the only way to put it), and tested it for viral problems which may be causing the temperatures. But the test came back all clear today. His line in his chest is clear of bugs so it's not that, even though his chest exit site is slightly raised and red.
Unfortunately the doctors cannot really do anything if the tests they run don't show a problem. His CRP was also under 10 which shows there's no infection brewing. So we're all stumped and to say PJ and I are concerned is an understatement. His right eye lid is a little red a swollen and a little more so from Wednesday when we were at the Eye Hospital.
So it's a pure waiting game and one we don't know how to play. The issue is that once he is neutropenic and if his temperature spikes again, then the doctors will admit him and give IV antibiotics again, much as they did last time. They'll give him IV paracetamol which will lower his temp, and once it's been down for 48 hours, they stop the antibiotics and paracetamol and left him go home. Same as last cycle. But then as soon as that happens, his temperature goes back up and hovers between 37.5 and 37.9 with a spike above 38 degrees every day.
Leo has been energetic even at the worst of times and has kept PJ and I on our toes, but the last week, he's wants to go to bed early and was asleep before 7pm yesterday, sleeping until 8am or so. He also says he's cold with only a T-shirt on in the house and yet his temperature is still raised.
Sorry for letting off steam here but sometimes things can make more sense when they're written down. Sadly that's not the case today. So we sit and we wait...
Having said that, doctors are stumped as to why the temperature is spiking and why he's had a low grade fever for such a long time. Neither PJ nor I are ill, and nothing has changed since he was last admitted whilst neutropenic. They stuck a vacuum up Leo's nose yesterday to grab some bogey (sorry, that's the only way to put it), and tested it for viral problems which may be causing the temperatures. But the test came back all clear today. His line in his chest is clear of bugs so it's not that, even though his chest exit site is slightly raised and red.
Unfortunately the doctors cannot really do anything if the tests they run don't show a problem. His CRP was also under 10 which shows there's no infection brewing. So we're all stumped and to say PJ and I are concerned is an understatement. His right eye lid is a little red a swollen and a little more so from Wednesday when we were at the Eye Hospital.
So it's a pure waiting game and one we don't know how to play. The issue is that once he is neutropenic and if his temperature spikes again, then the doctors will admit him and give IV antibiotics again, much as they did last time. They'll give him IV paracetamol which will lower his temp, and once it's been down for 48 hours, they stop the antibiotics and paracetamol and left him go home. Same as last cycle. But then as soon as that happens, his temperature goes back up and hovers between 37.5 and 37.9 with a spike above 38 degrees every day.
Leo has been energetic even at the worst of times and has kept PJ and I on our toes, but the last week, he's wants to go to bed early and was asleep before 7pm yesterday, sleeping until 8am or so. He also says he's cold with only a T-shirt on in the house and yet his temperature is still raised.
Sorry for letting off steam here but sometimes things can make more sense when they're written down. Sadly that's not the case today. So we sit and we wait...
Wednesday, October 29, 2008
Thank You
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.
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.
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.
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