Someone's feeling better. Leo's temperature is still going up and down, but he's managing to eat a little and drink more, but the main thing is he's decided today that he'd like to be a rock star when he grows up. So a few weeks ago it was 'I'm going to dance on the stage, but not at the theatre like girls...' and now he has his sights set on being a rock star! Fantastic!
Scan as normal in about ten days so we'll see what that holds. Leo's eye lid does seem a little swollen and more so than yesterday but maybe because I am with him all day, every day, I may be 'seeing' things... Who knows?
Thursday, February 05, 2009
Tuesday, February 03, 2009
Stressed...Me?
So another visit and overnight stay in isolation on the ward at the hospital. Leo's quite poorly with a bacterial infection in his sinuses, throat and nose which for a 'normal' child would mean a week's antibiotics. For Leo, the concern is the infection could track back to the part behind his eye where the left-over mass is from his cancer. If this happens, it could mean IV antibiotics in isolation on the ward for maybe three weeks. Stressed...me? Never!
His weight has dropped from 16.1 kg to 14.7 kg in one week or less, and whilst he's had a little yogurt and jelly today, he's had little else. Hopefully being back home will help him feel a little better and also not being fussed over by the nurses and a wide variety of specialists from medical, oncology and ENT teams.
Good news is his chest x-ray was clear today and we are only thinking that it's a severe infection...no relapse or recurrence of the cancer. Doesn't stop you worrying about it though!
His weight has dropped from 16.1 kg to 14.7 kg in one week or less, and whilst he's had a little yogurt and jelly today, he's had little else. Hopefully being back home will help him feel a little better and also not being fussed over by the nurses and a wide variety of specialists from medical, oncology and ENT teams.
Good news is his chest x-ray was clear today and we are only thinking that it's a severe infection...no relapse or recurrence of the cancer. Doesn't stop you worrying about it though!
Monday, February 02, 2009
Rational versus Paranoid Mind...
This is our 'normality' now...rational versus paranoid thoughts. A 4 year old with a temperature of over 40 for a few days and you keep them home, load them with Calpol and know the lurgy will pass after a few days and if not, head to the GP.
Well, after the GP told me that 'there was no need to be so paranoid' ten days ago, I've been desperately trying to remember how to look at issues like high temperatures, pre-cancer. It's difficult though as your rational mind goes out the window. Your rational mind says it's just a cold. A bad cold or even flu but it's all normal. Rational mind, rational outcome.
But then the temperature stays within 39 and 40 even with Calpol, plus Leo stops drinking and eating, and then starts 'trying' to sleep 24 hours a day...and then the paranoid mind comes out and has a field day! Could it be the tumour has re-triggered and causing problems in his ear, or sinuses or around his eye? Could the cold / flu symptoms be masking a relapse? If we listen to just the normal symptoms presenting themselves, will we miss a relapse or will we miss it for too long? Although if he relapses, there's nothing can be done anyway...and then your head gets all mixed up with those thoughts....
Leo's Clic Nurse has been awesome and said even a 'normal' child would be taken to the emergency room if they had a temp of over 40 for 3 or 4 days, and so on Friday, that's where we found ourselves.
Leo's birthday party was on Saturday and so Calpol and adrenalin got him through it but you could tell he wasn't right as he didn't dance (where he'd normally steal the show on the dance floor) and was very clingy.
And now it's Monday and his temp is still above 39 and now he's had a few nose-bleeds and not really slept properly for days because he's so hot. The barometer for the start of a cold or something else before Leo had cancer was if he went off his milk. Well he's not had any milk for days. He asks for it and he's currently lying on the chair with milk, smoothie and water available in three different cups and he's just not interested.
So we're just waiting on Leo's oncologist to come back to us as his Clic Nurse is speaking with him today.
And so this is what is meant by the 'new' normal life we have to get through. Post-treatment is certainly much more scary as the potential for the cancer to do more damage to Leo and our lives is there, hanging over us all, like some massive black cloud.
And before anyone says that we have to just get on with things...just knuckle down and get back to work and carry on as though Leo's never had cancer, well that's just unrealistic and is not going to happen.
Not just now anyway.
I could not go and get a full-time job regardless of the increased income it wold bring with it. I could not sit in an interview with a potential new employer and give them the whole spiel as my heart would not be in it at all. I am 150% wanting to me Leo's full-time mum right now and if that means I cannot work, then hey, the income will have to wait. After all, what's the point in having more cash if Leo's not well??? Won't help if his cancer decides to make a return.
Well, after the GP told me that 'there was no need to be so paranoid' ten days ago, I've been desperately trying to remember how to look at issues like high temperatures, pre-cancer. It's difficult though as your rational mind goes out the window. Your rational mind says it's just a cold. A bad cold or even flu but it's all normal. Rational mind, rational outcome.
But then the temperature stays within 39 and 40 even with Calpol, plus Leo stops drinking and eating, and then starts 'trying' to sleep 24 hours a day...and then the paranoid mind comes out and has a field day! Could it be the tumour has re-triggered and causing problems in his ear, or sinuses or around his eye? Could the cold / flu symptoms be masking a relapse? If we listen to just the normal symptoms presenting themselves, will we miss a relapse or will we miss it for too long? Although if he relapses, there's nothing can be done anyway...and then your head gets all mixed up with those thoughts....
Leo's Clic Nurse has been awesome and said even a 'normal' child would be taken to the emergency room if they had a temp of over 40 for 3 or 4 days, and so on Friday, that's where we found ourselves.
Leo's birthday party was on Saturday and so Calpol and adrenalin got him through it but you could tell he wasn't right as he didn't dance (where he'd normally steal the show on the dance floor) and was very clingy.
And now it's Monday and his temp is still above 39 and now he's had a few nose-bleeds and not really slept properly for days because he's so hot. The barometer for the start of a cold or something else before Leo had cancer was if he went off his milk. Well he's not had any milk for days. He asks for it and he's currently lying on the chair with milk, smoothie and water available in three different cups and he's just not interested.
So we're just waiting on Leo's oncologist to come back to us as his Clic Nurse is speaking with him today.
And so this is what is meant by the 'new' normal life we have to get through. Post-treatment is certainly much more scary as the potential for the cancer to do more damage to Leo and our lives is there, hanging over us all, like some massive black cloud.
And before anyone says that we have to just get on with things...just knuckle down and get back to work and carry on as though Leo's never had cancer, well that's just unrealistic and is not going to happen.
Not just now anyway.
I could not go and get a full-time job regardless of the increased income it wold bring with it. I could not sit in an interview with a potential new employer and give them the whole spiel as my heart would not be in it at all. I am 150% wanting to me Leo's full-time mum right now and if that means I cannot work, then hey, the income will have to wait. After all, what's the point in having more cash if Leo's not well??? Won't help if his cancer decides to make a return.
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