This last few weeks has totally reminded us that this adventure is a marathon, not a sprint. How Leo does not get completely mad being in the hospital is testament to how brave he is. Well, he does get angry at times but that's because he wants to do one thing, and we need him to do another..so no different to any other 'normal' three year old really!
Leo had great fun playing with his Big Grandad today even though he's not felt 100% due to the IVA chemo starting yesterday. He's also hooked up to fluids all day for 45 hours from Friday afternoon and so he's restricted from running around and scaring the nurses (like he was yesterday morning).
The way we need to think about things I guess is that this is week 7 and so he has now nearly completed two cycles and just started his third of nine chemo cycles. We're just two weeks away from his MRI and kidney function test. The MRI is vital as it will show how / if the tumour has been affected by the chemo so far. The kidney test allows the docs to see how /if his kidneys have been 'poisoned' by his treatment (poisoned is the word used by his consultant yesterday when he explained the tests!)
It also appears that Leo will need a blood transfusion again tomorrow after his chemo and fluids are done as his haemoglobin are less than 8 which means he's anaemic. Then after his blood, Leo will have lots of energy and will be able to come home to Clic House for a week of calm and relaxation after two weeks in hospital.
Saturday, June 21, 2008
Thursday, June 19, 2008
Proud
Leo is on great form today (writing this after midnight so talking about Wednesday) and even ate a whole bowl of spaghetti bolognese this afternoon. Doctors are happy with his progress on the infection front so it should be okay for him to have his IVA chemo starting Friday for 48 hours as per the protocol. Good news.
PJ and I are so proud of Leo and never a day goes by, when even as he throws tantrums and kicks out sometimes, that we don't thank the powers that be for him being with us. We're so privileged that Leo is our son and even though we're heading along this adventurous path with him right now, it's because Leo is who he is, full of spirit, that he's bringing us along with him each and every day. People use the phrase a lot about their children being fighters and we truly feel Leo is one of life's fighters. Proud is probably an understatement of how PJ and I feel about him.
Talking of how spirited he is, we were in a bank today where some workmen were making some noise. Leo responded by saying to one of them;
Excuse me, I am trying to sleep. Please could you keep the noise down?
Lots of laughter ensued and as a result, every time the workman's drill started, Leo did the same thing over and over! When we actually left the bank, not only was the workman able to get on with his work undisturbed, but I like to think he'd brightened a few people's days with his cheeky spirit!
He even wanted to buy chocolates for the nurses today. Picked them out himself and then gave them to the nurses on the ward on our return to the hospital with the phrase;
Don't eat them all yourself!
Cheeky, spirited, beautiful and yes, we're very proud.
PJ and I are so proud of Leo and never a day goes by, when even as he throws tantrums and kicks out sometimes, that we don't thank the powers that be for him being with us. We're so privileged that Leo is our son and even though we're heading along this adventurous path with him right now, it's because Leo is who he is, full of spirit, that he's bringing us along with him each and every day. People use the phrase a lot about their children being fighters and we truly feel Leo is one of life's fighters. Proud is probably an understatement of how PJ and I feel about him.
Talking of how spirited he is, we were in a bank today where some workmen were making some noise. Leo responded by saying to one of them;
Excuse me, I am trying to sleep. Please could you keep the noise down?
Lots of laughter ensued and as a result, every time the workman's drill started, Leo did the same thing over and over! When we actually left the bank, not only was the workman able to get on with his work undisturbed, but I like to think he'd brightened a few people's days with his cheeky spirit!
He even wanted to buy chocolates for the nurses today. Picked them out himself and then gave them to the nurses on the ward on our return to the hospital with the phrase;
Don't eat them all yourself!
Cheeky, spirited, beautiful and yes, we're very proud.
Tuesday, June 17, 2008
Good news, good news, bad news, good news...
Good news...Leo's neutrophils came up from 0.05 on Sunday to 1.02 yesterday (Monday) and 7.01 today so that's awesome. The GCSF has worked a treat and done what they needed to do by stimulating Leo's bone marrow to produce the white blood cells needed to fight infection. Now they've done this, his chest looks better and he's started to perk up a bit.
Good news number 2...Leo can start chemo as planned on Friday for 48 hours as a result of him being better.
Bad news...his stay at hospital will be until at least next Wednesday so 17 days in total for this visit as he needs to have 10 days of the antibiotics he is on and they have to be given via the IV as they're more effective.
Good news number 3...Leo copes very well with being in hospital. He actually quite likes it I think, probably because he has spent more time there since returning to the UK than here at Clic House or anywhere else. Plus he probably now feels comfortable there as he is in control and knows what's going on. It's amazing how quickly three year old's learn to cope and get on with things.
Thank you so much for all your messages and comments on the Blog over the last few days. We've also had lots of packages arriving for Leo at Clic House courtesy of lots of wonderful and generous people including Miss Gillian, Leo's Head at King's College Murcia and some beautiful ifts from PJ's lovely cousins Down Under. We're trying to stagger the opening of such lovely gifts as he is spoilt rotten right now, and rightly so! However what we're doing now is keeping the gifts back so as he can open them when he has earned enough stars on his Rewards Chart. He gets stars for letting the doctors and nurses do what they have to do, plus for doing his teeth twice a day, having his ob's done etc. So if you don't get an immediate response when you've sent a gift, it's because we're waiting for stars on the chart!
Good news number 2...Leo can start chemo as planned on Friday for 48 hours as a result of him being better.
Bad news...his stay at hospital will be until at least next Wednesday so 17 days in total for this visit as he needs to have 10 days of the antibiotics he is on and they have to be given via the IV as they're more effective.
Good news number 3...Leo copes very well with being in hospital. He actually quite likes it I think, probably because he has spent more time there since returning to the UK than here at Clic House or anywhere else. Plus he probably now feels comfortable there as he is in control and knows what's going on. It's amazing how quickly three year old's learn to cope and get on with things.
Thank you so much for all your messages and comments on the Blog over the last few days. We've also had lots of packages arriving for Leo at Clic House courtesy of lots of wonderful and generous people including Miss Gillian, Leo's Head at King's College Murcia and some beautiful ifts from PJ's lovely cousins Down Under. We're trying to stagger the opening of such lovely gifts as he is spoilt rotten right now, and rightly so! However what we're doing now is keeping the gifts back so as he can open them when he has earned enough stars on his Rewards Chart. He gets stars for letting the doctors and nurses do what they have to do, plus for doing his teeth twice a day, having his ob's done etc. So if you don't get an immediate response when you've sent a gift, it's because we're waiting for stars on the chart!
Monday, June 16, 2008
Leo is okay this morning and I am about the leave Clic House for the hospital now. Doctor's rounds are at about 11.30am this morning so we'll have to see if Leo's chest is even slightly better because if it's not, it's coming out.
The bad news is PJ has a cold which for him means he will need to stay away from the hospital and Leo - if Leo were to catch PJ's cold, it could be highly dangerous so let's hope they both get better ASAP.
The bad news is PJ has a cold which for him means he will need to stay away from the hospital and Leo - if Leo were to catch PJ's cold, it could be highly dangerous so let's hope they both get better ASAP.
Sunday, June 15, 2008
Waiting Game
Doctors have been very thorough today and very honest. We've been waiting to see if Leo's neutrophils (white blood cell count) have come up but unfortunately it's dropped again. When Leo was admitted one week ago, his count was 0.22 which was right for that time in the chemo cycle. It then peaked at 0.42 on Wednesday and then should have continued going up and once it's over 1, his white cell count is considered okay and going in the right direction in time for his next cycle of chemo.
Today however, it's dropped to 0.05 which is not good. His body is not able to fight infection at all with a count that low. The doctors therefore asked for our permission to use something called G-CSF which is an hormone or growth factor used to stimulate Leo's bone marrow to produce white cells. To do this we had two options, the first to insert a small tube under his skin in his thigh or secondly, using IV via his line. The first method is more effective but can be slightly disturbing for Leo however, if it's far more effective, it made sense to do this and see how Leo tolerated it.
Whilst he didn't like it and the nurses said it would feel like a small scratch on insertion, he did cry but was soon happy again once he saw the Hotwheels cars which my Uncle Ned had sent over from the USA. What great cars! And when PJ got back from golf, Leo wanted to show Daddy his 'special plaster', which is what I told him the tube on his thigh was, bless him!
Leo is okay in himself, but also not quite right either. He's had a low grade fever all day (37.7) and still drinking only milk and not eating anything. It could well be that his jaw is sore as that's one of the side effects of the Vinc chemo drug. When we went out for a walk at lunchtime, he was quite happy to stay in his buggy which is incredible as a 'well Leo' is very independent so it's another indication he's not happy or feeling well.
He did play with his new Hotwheels cars alot today, and then received some more cars, again from overseas. PJ's cousin Jay and his wife Nicole and daughter Macie in Australia, have sent across cars which were slightly smaller than the Hotwheels, so Leo said they were his other car's babies and set about playing 'families' with them all. Very cute it was too!
Leo did get rather cheeky and a bit naughty in the garden this afternoon. He plays really well on his own and I think enjoys the freedom to play in the garden knowing we're in close proximity but not in his face. He is really territorial and kept trying to disrupt a little girl playing with the little house and one of the cars saying 'it's mine' over and over. It probably does feel like the toys are his as he's actually spent longer in hospital since May 4th than at Clic House or somewhere which is really his home.
So it's a waiting game now. The key thing for tomorrow is the doctor's have said they have a very low threshold towards taking the line out to prevent Leo becoming seriously sick. If this does need to be done (if his chest is not significantly better in the morning), then they will not be able to put another one in for one or two weeks to allow him to recover and ensure the infection has gone. Leo will therefore need a cannula in his hand or arm for his chemo and drug antibiotics.
Fingers crossed it doesn't come to that.
Today however, it's dropped to 0.05 which is not good. His body is not able to fight infection at all with a count that low. The doctors therefore asked for our permission to use something called G-CSF which is an hormone or growth factor used to stimulate Leo's bone marrow to produce white cells. To do this we had two options, the first to insert a small tube under his skin in his thigh or secondly, using IV via his line. The first method is more effective but can be slightly disturbing for Leo however, if it's far more effective, it made sense to do this and see how Leo tolerated it.
Whilst he didn't like it and the nurses said it would feel like a small scratch on insertion, he did cry but was soon happy again once he saw the Hotwheels cars which my Uncle Ned had sent over from the USA. What great cars! And when PJ got back from golf, Leo wanted to show Daddy his 'special plaster', which is what I told him the tube on his thigh was, bless him!
Leo is okay in himself, but also not quite right either. He's had a low grade fever all day (37.7) and still drinking only milk and not eating anything. It could well be that his jaw is sore as that's one of the side effects of the Vinc chemo drug. When we went out for a walk at lunchtime, he was quite happy to stay in his buggy which is incredible as a 'well Leo' is very independent so it's another indication he's not happy or feeling well.
He did play with his new Hotwheels cars alot today, and then received some more cars, again from overseas. PJ's cousin Jay and his wife Nicole and daughter Macie in Australia, have sent across cars which were slightly smaller than the Hotwheels, so Leo said they were his other car's babies and set about playing 'families' with them all. Very cute it was too!
Leo did get rather cheeky and a bit naughty in the garden this afternoon. He plays really well on his own and I think enjoys the freedom to play in the garden knowing we're in close proximity but not in his face. He is really territorial and kept trying to disrupt a little girl playing with the little house and one of the cars saying 'it's mine' over and over. It probably does feel like the toys are his as he's actually spent longer in hospital since May 4th than at Clic House or somewhere which is really his home.
So it's a waiting game now. The key thing for tomorrow is the doctor's have said they have a very low threshold towards taking the line out to prevent Leo becoming seriously sick. If this does need to be done (if his chest is not significantly better in the morning), then they will not be able to put another one in for one or two weeks to allow him to recover and ensure the infection has gone. Leo will therefore need a cannula in his hand or arm for his chemo and drug antibiotics.
Fingers crossed it doesn't come to that.
Subscribe to:
Posts (Atom)
