Tuesday, February 10, 2009
Monday, February 09, 2009
10 Pounds Lighter...
For a boy on the small side anyway, losing 10 lbs in weight in just two weeks is alot, and so we're now on a mission to fatten Leo up again. He's feeling much more like his old self and finishes his antibiotics tomorrow which is good - to think we worried about giving him oral drugs and yet after a few fights to begin with, once he realised that he'd have to go back to stay at the hospital if he didn't take the meds, he soon took them.
Leo went back to school today and was so excited about being back with his friends which is so nice to see as he's so sociable as I am sure those who remember him from King's College will remember. Plus his appetite is back which is promising so we've no need to worry too much about his weight loss!
Amazing how turning 4 years of age, and Leo seems to be a bit more grown up also. He's certainly more responsible but with that comes an increasing amount of cheekiness!
Thanks to you all for sending cards and gifts and coming to his party, especially those who travelled miles and miles to make it (Lisa Green and family, my parents and Tessa et al)! I am yet to write the thank you cards due to events of the past two weeks so this week, I'll be able to get my head down and sort things out! Thanks again.
Love from Helen, PJ and Leo x
Leo went back to school today and was so excited about being back with his friends which is so nice to see as he's so sociable as I am sure those who remember him from King's College will remember. Plus his appetite is back which is promising so we've no need to worry too much about his weight loss!
Amazing how turning 4 years of age, and Leo seems to be a bit more grown up also. He's certainly more responsible but with that comes an increasing amount of cheekiness!
Thanks to you all for sending cards and gifts and coming to his party, especially those who travelled miles and miles to make it (Lisa Green and family, my parents and Tessa et al)! I am yet to write the thank you cards due to events of the past two weeks so this week, I'll be able to get my head down and sort things out! Thanks again.
Love from Helen, PJ and Leo x
Thursday, February 05, 2009
I'm Gonna Be A Rock Star
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?
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?
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.
Tuesday, January 27, 2009
Sunday, January 25, 2009
Allow me to Introduce Leo with...
Hair! And Batman Leo!!!
Leo is in good form. At nursery school every day and loving it.
He had his eyes checked again on Thursday and the vision in his right eye is worse than last time and probably more of an accurate check as he's much more cooperative with what he has to do.
Keeping an eye on what Leo says is his bad ear (he points and says it hurts all the way inside) and then says his brain hurts! Perfect - just the right things to tell worrying parents, eh!!!!!
MRI booked for 3 weeks and then a further check with his oncology consultant again one week after that.
Leo's 4th Birthday on Tuesday and we cannot wait!
Wednesday, January 21, 2009
Less than a Week Until Leo's 4th Birthday
Who'd have thought this time a year ago we were planning a joint party with one of the nice families we knew in Spain for Leo's 3rd birthday and Joseph's 7th birthday. It was outside in the garden, blue skies, sunshine, bouncy castle and lots of fun indeed. One year on and we're not sure if this will be the last of Leo's birthdays which we will be celebrating. I am not being morbid or depressed about it...this is a fact. And as such, where we would normally just hope everything goes to plan, this year we're pulling all the stops out and desperate that Leo enjoys himself, whilst we also take time to appreciate him and all that he gives us as our son. Life is too short after all!!
We've heard back from the cancer consultant who in a very technical way has said that we should not read too much into the increased egg allergy, but that also there's only Leo with this cancer in this site at his age, in the world, and as such, little is really known about the chemo he's had on his specific cancer.
Tomorrow brings more hospital visits. This time his right eye is going to be checked and we're rather hoping that they do the tests they usually do at the end, right at the beginning instead of waiting through an hour or more of testing before checking his cataract / light sensitivity. It may well be that they'll decide to check the cataracts and back of his eye the next time he has a general anaesthetic which will be on or near February 17th for his next MRI.
His teachers at school have all made a point this week of saying that Leo really has come out of himself post-Christmas and that he's a pleasure to have in school. Similar statements were made when Leo was at King's College in Murcia and so it's nice to know that others mirror our feelings that the Leo we knew pre-cancer is now back, albeit a little older, wiser and somewhat institutionalised.
We've heard back from the cancer consultant who in a very technical way has said that we should not read too much into the increased egg allergy, but that also there's only Leo with this cancer in this site at his age, in the world, and as such, little is really known about the chemo he's had on his specific cancer.
Tomorrow brings more hospital visits. This time his right eye is going to be checked and we're rather hoping that they do the tests they usually do at the end, right at the beginning instead of waiting through an hour or more of testing before checking his cataract / light sensitivity. It may well be that they'll decide to check the cataracts and back of his eye the next time he has a general anaesthetic which will be on or near February 17th for his next MRI.
His teachers at school have all made a point this week of saying that Leo really has come out of himself post-Christmas and that he's a pleasure to have in school. Similar statements were made when Leo was at King's College in Murcia and so it's nice to know that others mirror our feelings that the Leo we knew pre-cancer is now back, albeit a little older, wiser and somewhat institutionalised.
Monday, January 19, 2009
Unexpected Stress
We were at the hospital on Friday, primarily to have an appointment about Leo's mould allergy and his other allergies. Whilst there we had a meeting with his oncologist too who advised Leo now needs chest x-rays every other month. This is because if he relapses, it may not be in the primary site i.e. on the brain. It could relapse in his lungs. So a little surprise and actually with hindsight quite pleased we did not know this before as it's another major thing to stress about.
As it happens Leo's chest x-ray was clear so he's not relapsed yet.
His allergies though a little cause for concern as normally people who have had their immune system 'modulated' with chemotherapy and especially the type and amount that Leo has had, the tests for his allergies would give a 'false' low at this point post-treatment. However his allergy to eggs has increased whereas chemo normally 'resets' the system and the egg allergy usually disappears. So not quite sure if we should be reading into the fact the chemo didn't knock the egg allergy out of his system and the fact it's got worse. At Leo's age, cancer aside, it's highly unlikely he's going to grow out of his egg allergy now.
So just to see what his oncologist comes back with in terms of the chemo / allergy testing / false high debate?
Today's a new day...no time for stress.....
As it happens Leo's chest x-ray was clear so he's not relapsed yet.
His allergies though a little cause for concern as normally people who have had their immune system 'modulated' with chemotherapy and especially the type and amount that Leo has had, the tests for his allergies would give a 'false' low at this point post-treatment. However his allergy to eggs has increased whereas chemo normally 'resets' the system and the egg allergy usually disappears. So not quite sure if we should be reading into the fact the chemo didn't knock the egg allergy out of his system and the fact it's got worse. At Leo's age, cancer aside, it's highly unlikely he's going to grow out of his egg allergy now.
So just to see what his oncologist comes back with in terms of the chemo / allergy testing / false high debate?
Today's a new day...no time for stress.....
Friday, January 16, 2009
First Hospital Visit of 2009
This afternoon sees us meeting with one of Leo's specialists from over a year ago in relation to his allergies as he's allergic to tree nuts, seeds, eggs and mould (the black stuff which can form round the bath or under a pile of leaves in autumn). He's already up to speed with Leo's cancer diagnosis as the chemotherapy can have an impact on his allergies so it will be interesting to see what his immune system is doing now give the level of chemo his body has been through. We hope to also see his oncology consultant and his favourite Clic nurse Sarah as we've not seen her for weeks either.
Leo has done four sessions at nursery this week and off to his fifth today. We've also been swimming and tomorrow we're off to a panto in Bath, which is Leo's favourite story of Jack and the Beanstalk. Weekends have become so precious again now PJ is working and we're living a new normal life.
Leo has done four sessions at nursery this week and off to his fifth today. We've also been swimming and tomorrow we're off to a panto in Bath, which is Leo's favourite story of Jack and the Beanstalk. Weekends have become so precious again now PJ is working and we're living a new normal life.
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