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...
Friday, October 31, 2008
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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