Leo calls them 'chicken pops' and has kept denying he has them, but his chicken pox are more problematic than we'd first thought. Indeed, we should have taken him into hospital as soon as we knew on Tuesday that he had chicken pox, and hence had to leave our holiday in Scotland. Leo should have started anti-viral drugs then, but me being me, I thought we had to assume 'normality' now he's getting further from his treatment.
As it is, Leo's been really poorly, as many kids get with chicken pox; he's also had a temperature of 40 and today was only taking sips of water if that. So I finally gave in and called the ward at the hospital and told them his temp was high, that he'd had chicken pox since Tuesday etc etc. They told us to go in for blood tests to check his immune system and it seems that the protocol is that within the first six months post-treatment, the part of his immune system which deals with viral infections such as chicken pox, is not yet strong enough to deal with it. Complications with children with low immune systems include infections of the brain and heart as well as meningitis.
What we didn't know was that he really needed at least 5 days of anti-viral drugs via an IV starting ASAP and so despite Leo's major protestations, the doctors managed to take blood and get a cannula into his hand. They gave him some painkillers and the anti-virals, and as soon as the painkillers kicked in, Leo finally managed to sleep and his temperature came down to 37.9.
So what we know now is that he'll be in for at least 5 days and he could be in for up to 10 days for IV drugs, depending on whether his body starts to fight the chicken pox itself and with the assistance of the drugs.
Hopefully the drugs will help the pox on his tongue and in his mouth go down, which means he'll be able to drink more and maybe even eat at some point. I just hope he just feels better soon.
Fingers crossed...
Friday, April 10, 2009
Saturday, April 04, 2009
A Welcome Break
After about 8 hours including breaks for food, bathroom and refueling, we're back at the magnificrnt Malcolm Sargent House for a week-long break. Whilst Leo's been so excited this week about our holiday, he's also been the most tired he's been in a long time. We decided to keep him at home and let him rest instead of taking him to nursery school. He'd have a 3 to 4 hour sleep every afternoon and then sleep for 10 hours overnight too plus his appetite has not been all that great. So a holiday is a welcome break for all three of us.
Hopefully we'll all be able to get some good sleep, sea air (as the house is on the beach) and just generally relax, ready for whatever may be thrown in our direction.
We've also decided to reduce Leo's hours at nursery school as he's obviously finding things quite tough right now, and whilst he loves nursery, if he's too tired to eat, then that's not a good thing. So for a month or more, he'll only be in school for a few hours three times a week - and then we'll reassess.
Hopefully we'll all be able to get some good sleep, sea air (as the house is on the beach) and just generally relax, ready for whatever may be thrown in our direction.
We've also decided to reduce Leo's hours at nursery school as he's obviously finding things quite tough right now, and whilst he loves nursery, if he's too tired to eat, then that's not a good thing. So for a month or more, he'll only be in school for a few hours three times a week - and then we'll reassess.
Tuesday, March 31, 2009
A Walk in the Park
Despite Leo being super-tired with 3 hour full-on sleeps every afternoon for the last few days, we still managed to enjoy a lovely day out in the sunshine with good friends yesterday...and here are the photos to prove it!
Nice weather in England, I hear you cry? Well, yes! Chilly but with fabulous blue skies. Weather, great company, awesome son and husband and a lovely countryside which makes you feel elated to be alive.
Wednesday, March 25, 2009
And Yet More Hospital Visits and Unwanted Temperatures...
Not a week goes by it seems without more unscheduled hospital visits and so last week Leo had another chest x-ray due to his on-going cough - x-ray was clear but to go back if he continues to lose weight and his chest / cough does not clear up.
Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.
We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!
Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.
Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.
We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!
Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.
Thursday, March 19, 2009
Updates and Baldy (including pictures)
Lots has been happening this past week.
Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.
We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.
And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.
Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.
Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.
So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!
Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!
Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.
We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.
And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.
Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.
Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.
So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!
Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!
Tuesday, March 10, 2009
Why?
We all know that children get to a certain age and then eveything they say ends with 'why?' And today, Leo and I had a conversation of why this and why that for about 40 minutes. Some of it related to why do people get sick and why do we need hospitals and why is Mummy tired today? I think Mummy is tired today because of all the questions!
I've also spoken at length with Leo's school who have been nothing but absolutely supportive towards us. They completely appreciate that given what Leo's been through, he was bound to have some sort of 'issues' at some point. Sooner rather than later, I say, as it means we can deal with his anxieties now before the have time to manifest themselves in other more worrying ways.
We probably all need to work on our anxieties and ensure we do a better job of shielding Leo from our concerns and so, from now on, no conversations with other people about Leo and the future will happen in front of him. He doesn't need to know what may or may not happen in the next few months or years and so why let him hear it ... he needs to know what is planned with his doctors so if we have a scan or an eye hospital check-up, then clearly we need to prepare him for these events. But things beyond our control such as relapse can be protected from him.
And now for something a bit more light-hearted. A video of Leo and his fixation with chocolate.
Enjoy
I've also spoken at length with Leo's school who have been nothing but absolutely supportive towards us. They completely appreciate that given what Leo's been through, he was bound to have some sort of 'issues' at some point. Sooner rather than later, I say, as it means we can deal with his anxieties now before the have time to manifest themselves in other more worrying ways.
We probably all need to work on our anxieties and ensure we do a better job of shielding Leo from our concerns and so, from now on, no conversations with other people about Leo and the future will happen in front of him. He doesn't need to know what may or may not happen in the next few months or years and so why let him hear it ... he needs to know what is planned with his doctors so if we have a scan or an eye hospital check-up, then clearly we need to prepare him for these events. But things beyond our control such as relapse can be protected from him.
And now for something a bit more light-hearted. A video of Leo and his fixation with chocolate.
Enjoy
Sunday, March 08, 2009
Happy Days and Chocolate Face
Leo's been a happy soul this weekend and today, this happy behaviour has been interspersed with some things he's said which are a cause for concern such as not being able to breath and how he wants to be a baby again because then he won't be sick again. So tomorrow Leo is back to nursery school in the morning and I am on the hunt for some answers on how to help Leo with his bouts of anger and anxieties.
Saturday, March 07, 2009
What, If Anything, Is Going On?
So I get to school to pick Leo up on Thursday evening and I'm asked to speak with the Deputy??? It was very strange, as anyone will tell you, it feels like you're back in your own school days, not those of your 4 year old son.
After discussing how traumatised Leo was when one of the other children was showing a photo of their new baby sister who had a tube in their nose, we then had to discuss a horrendous incident which resulted in Leo biting the Head and both punching and scratching one of his favourite teachers.
Now this kind of behaviour was last seen when Leo was first diagnosed last May, when he was incredibly angry with me as he blamed me for being back in England and could not understand why I had been in hospital and now he was. We managed it then with some useful anger management strategies including telling him it's okay to be angry and that if he wanted to hit something, he was to hit a pillow. Very quickly, but not easily, his anger calmed.
However on this occasion, he's hitting out at other people with whom he has built trust and also happy relationships. This incident is also built on the fact he's been more clingy with me over the past 10 days, certainly has a cold plus has repeatedly said he'd like to go to hospital because he's sick again. Unfortunately he also started telling me he had a big eye again (but there's no obvious swelling or poking out of his right eye at this stage so no dreadfu concern but partner this info with everything else and you cannot help but have awful thoughts going on).
To add to this, he has a cough and today he asked me to turn the CD off in the car because he wanted to tell me that sometimes he feels like he cannot breath?! (Do not panic, H....ask him another question with no sign of concern....; this was my internal chat with myself once he'd said this). And so he went on to say he sometimes feels like he cannot breath and it's not his cough and so I asked if he had pain anywhere and he said his neck hurt. All a bit odd and not really what you want your 4 year old son telling you.
During the incident at school, he had also put his hands round his own throat and was saying 'you're hurting me, you're hurting me', which we had taken to him trying to get a reaction from his teacher who was trying to calm him down. But now, with this further info from Leo today, I now have a niggling thing going on in my head about whether he really has an issue with his actual neck, or is it because of the cough? His food intake is down but he is drinking so perhaps this indicates little or no throat soreness?
Anyway, if we try to get our heads around it and try to be rational, then those awful irrational thoughts always force their way in.
So we hope to be able to speak with his oncologist on Monday as well as meeting with his school, who have been supportive since Thursday's incident. With luck, we will be able to also be put in touch with the hospital's children's psychology team who can advise us all on some strategies to deal with any further concerns, anxiety and anger which Leo may be have.
After discussing how traumatised Leo was when one of the other children was showing a photo of their new baby sister who had a tube in their nose, we then had to discuss a horrendous incident which resulted in Leo biting the Head and both punching and scratching one of his favourite teachers.
Now this kind of behaviour was last seen when Leo was first diagnosed last May, when he was incredibly angry with me as he blamed me for being back in England and could not understand why I had been in hospital and now he was. We managed it then with some useful anger management strategies including telling him it's okay to be angry and that if he wanted to hit something, he was to hit a pillow. Very quickly, but not easily, his anger calmed.
However on this occasion, he's hitting out at other people with whom he has built trust and also happy relationships. This incident is also built on the fact he's been more clingy with me over the past 10 days, certainly has a cold plus has repeatedly said he'd like to go to hospital because he's sick again. Unfortunately he also started telling me he had a big eye again (but there's no obvious swelling or poking out of his right eye at this stage so no dreadfu concern but partner this info with everything else and you cannot help but have awful thoughts going on).
To add to this, he has a cough and today he asked me to turn the CD off in the car because he wanted to tell me that sometimes he feels like he cannot breath?! (Do not panic, H....ask him another question with no sign of concern....; this was my internal chat with myself once he'd said this). And so he went on to say he sometimes feels like he cannot breath and it's not his cough and so I asked if he had pain anywhere and he said his neck hurt. All a bit odd and not really what you want your 4 year old son telling you.
During the incident at school, he had also put his hands round his own throat and was saying 'you're hurting me, you're hurting me', which we had taken to him trying to get a reaction from his teacher who was trying to calm him down. But now, with this further info from Leo today, I now have a niggling thing going on in my head about whether he really has an issue with his actual neck, or is it because of the cough? His food intake is down but he is drinking so perhaps this indicates little or no throat soreness?
Anyway, if we try to get our heads around it and try to be rational, then those awful irrational thoughts always force their way in.
So we hope to be able to speak with his oncologist on Monday as well as meeting with his school, who have been supportive since Thursday's incident. With luck, we will be able to also be put in touch with the hospital's children's psychology team who can advise us all on some strategies to deal with any further concerns, anxiety and anger which Leo may be have.
Wednesday, March 04, 2009
The Ups and the Downs
The Ups - events like last weekend in Uxbridge with my old school friends and seeing Leo's smiling face when the bands were singing and then someone started playing drums, and he was beside himself with excitement about these new rock stars!
The Downs - the on-going coughs, the endless cold which we're never sure will turn into an infection again, the coughing up of phlegm then promptly swallowing it again - and yes, all these things are perfectly normal childhood winter things / issues, but our senses are on edge at all times. And so if he continues to have low grade fevers and getting so very tired and not really wanting to do much, then at what point do we call his doctors? I guess we'll just know.
Bless him, Leo keeps saying he needs to go to the hospital because 'I am sick, Mummy' and then follows this up by talking about his big eye and small eye??? Panicking...me? You bet! But enjoying Leo and what he brings to us every day. His smiling cuteness, his funny jokes, his singing and dancing and his energy when he talks about rock stars!!
The Downs - the on-going coughs, the endless cold which we're never sure will turn into an infection again, the coughing up of phlegm then promptly swallowing it again - and yes, all these things are perfectly normal childhood winter things / issues, but our senses are on edge at all times. And so if he continues to have low grade fevers and getting so very tired and not really wanting to do much, then at what point do we call his doctors? I guess we'll just know.
Bless him, Leo keeps saying he needs to go to the hospital because 'I am sick, Mummy' and then follows this up by talking about his big eye and small eye??? Panicking...me? You bet! But enjoying Leo and what he brings to us every day. His smiling cuteness, his funny jokes, his singing and dancing and his energy when he talks about rock stars!!
Sunday, March 01, 2009
Rock n' Roll Baby!
What an awesome night was had by just about everyone at the Abrook Arms in Uxbridge last night!
Leo loved it and everyone involved was buzzing. Matt Tombs, who organised the entire event, with the help of loads of musicians, and Martine and her mum at the pub, have all done such a stellar job to raise crucial funds for Clic Sargent, who in this economic state just like other charities are being affected.
The total raised on the night so far was just over £1500!!! What an awesome effort and thanks for all involved.
Leo will forever worship Rock Star Matt, who will forever be fixed in our hearts for his mighty fine support, belief, discipline and all out 'let's do this' attitude.It's a massive credit to him personally that so much cash was raised and that so many people turned out for the big night.
Thanks to all.
H x and Leo xxx
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