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...
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