Hi all. Again I do apologise I haven't written for some time. I thought I do a quick update before I forget it all :)
On 7Th July Christian started his maintenance cycle 1 - it is basically mainly 2 oral chemo drugs I give him at home one every day and other once a week ( except the week he has LP - chemo in his spine).
He also has Vincristine ( intravenous chemo) and steroids for 5 days ( that's when he becomes our little steroid monster-very bad tempered).
Also once in 3 month he has Lumbar Puncture ( chemo in his spine, it's to prevent leukaemia going to the spinal fluid and brain) and it is done under general anesthetic.
So basically maintenance treatment which will last for next 2 years is nowhere as intensive as treatment he has received for the first year, therefore he shouldn't have such a horrible side effects and also less time spent in hospital.
We did end up in East Surrey hospital for 3 weeks from 27Th of July till 18Th of August.
Christian was admitted with Shingles, suffered kidney problems due to the antibiotics, was on the drip for 2days to flash the antibiotics off his body.
Than he still had to continue antibiotics and also had a line infection so had to have even more antibiotics. Basically I wont go in to detail, i was a bit of a scary time for us , because of his kidneys, but thankfully Christian recovered.
Can't believe he had shingles, but then again when your immunsistem is so low you get all sorts :(
Anyway he did complete his maintenance cycle ( although he missed lots of chemo due to being unwell).
On 23Rd of September he started his second maintenance cycle. He still is on a lower dose of oral chemo than he should just because he is very sensitive to it and they don't want blood levels to drop too low.
On 5Th of August he had his LP under general anaesthetic -all went well.
He is feeling well, full of energy :))
His hair,eyelashes and eyebrows have grown back and he looks so gorgeous. I'm just wondering if his hair will be as curly as before or straight this time???
I would also like to thank everybody who donated for race of life. I managed to raise 210£ so thank you very much!!!
We would also like to say MASSIVE THANK YOU to Adonis colleagues Neil Attwater & Neil Thornton for raising money for Christian's fund for CLIC Sargent Charity!!!!!!!!!!!!!
They did a triathlon on September 27Th consisting of 400mtrs swim, 25k bike hike, 4k run. I hear that they did very well!!! Thank you guys and thank you to all at Adoni's work who have been donating!
I will put donations on Christians Fund and post the details later on.
Wednesday, 7 October 2009
Wednesday, 17 June 2009
June 2009
Sorry I haven't been writing for some time, been quite busy with Christian having his intensive chemo therapy and also staying in hospital for some time.
We are so happy because Christian has completed his last intensive chemo block. Yeehhhh!!!!!!
He had the usual side effects like constipation, which was very bad. He still has problems with his bowels, but hopefully that will get better soon.
He also was on a high dose of steroids and was restless at nights unable to sleep, so we had many sleepless nights.
We did end up in hospital twice ( as we expected anyway). First was for 4 days, just high temperature, he had to have antibiotics, although they didn't find anything.
Second time we stayed for a week and he had line infection ( as u all may know he has a line under his skin that gos down from his neck to main artery and is connected to a port).
The bug he had in his line ( can't remember the name) as we were told by the doctors is the one that they usually worry about and can make them very unwell and doesn't respond to the treatment as well as other bugs.
Luckily after week of antibiotics his infection was gone.
He also had 2 blood transfusions and one platelet transfusion.
He lost all his hair, eyelashes and eyebrows once again. We still have problem with his eating or shall i say not eating. However he hasn't lost any weight, quite the opposite, he is not skinny at all, and is gaining weight steadily. Must be the air he breath :)))
I can't explain how good it feels when you know that the worst part of the treatment is over!!! No more long chemo ( some of them go in his vein on the drip for 4 hours) no more chemo in my fridge ( that's for our community nurses, when they give it at home). So yes it feels like we can start seeing the light at the end of a very long tunnel.
Of course the real celebration will be when all of his treatment will be over, because he still got another 2 years or more to go. But it will not be as intensive and will not have so many nasty side effects and he should be back to him normal self.
And I cant wait for his curls to grow back, not that it is important, but would be nice when he starts nursery in September, that he will look and hopefully feel no different than other children.
Although I know all this treatment has changed him a lot, at the end of the day he has had one year of hospitals , painful treatments, and it is as if one year of his childhood has been lost.
But on the other hand he is only 3 and probably will not remember anything, so that is a good thing.
We hope that starting nursery ( only for couple off hours a day) will give him back his confidence, make friends, and do things that a child his age should be doing.
I must say I am very apprehensive of sending him to nursery, just due to the fact that his immunsisstem will not be as strong as it should be , therefore high risks off infections and hospital admissions, but I guess we have to just see how it goes and if he does get ill all the time, than I will have to take him out of the nursery.
We can't believe it will be a year ( on 19Th of June) since I took him to hospital and the dreadful diagnoses that none of us could ever imagine. It has been the most difficult year of our lives, but I think it has made us stronger and positive attitude and all the support has made the journey less painful.
So thank you all for all support and thank you for caring about our little Christian.
Just a quick update on what is happening know. Christian was supposed to start his Maintenance chemo this Wednesday ( 17Th) but was cancelled due to his blood counts being too low so we will have to wait till next week and see if they will improve.
Christian himself is feeling not too bad, he hasn't had chemo for couple of weeks so the side effects are wearing off. His platelets are quite low at the moment and he is bruising easily, even crying makes him bruise. His hemoglobin is also on the low side, but apart for being pale he is usually still quite active. Our nurse is coming on Friday to take his bloods just to see if he needs any blood or platelet transfusions.
So fingers crossed his bloods will improve and we can start next treatment next week.
I will keep you updated.
P.S I am doing the race on 4Th of July and haven't reached my target yet so please if you can sponsor me, thank you. xxx www.raceforlifesponsorme.org/ilzejacovides
We are so happy because Christian has completed his last intensive chemo block. Yeehhhh!!!!!!
He had the usual side effects like constipation, which was very bad. He still has problems with his bowels, but hopefully that will get better soon.
He also was on a high dose of steroids and was restless at nights unable to sleep, so we had many sleepless nights.
We did end up in hospital twice ( as we expected anyway). First was for 4 days, just high temperature, he had to have antibiotics, although they didn't find anything.
Second time we stayed for a week and he had line infection ( as u all may know he has a line under his skin that gos down from his neck to main artery and is connected to a port).
The bug he had in his line ( can't remember the name) as we were told by the doctors is the one that they usually worry about and can make them very unwell and doesn't respond to the treatment as well as other bugs.
Luckily after week of antibiotics his infection was gone.
He also had 2 blood transfusions and one platelet transfusion.
He lost all his hair, eyelashes and eyebrows once again. We still have problem with his eating or shall i say not eating. However he hasn't lost any weight, quite the opposite, he is not skinny at all, and is gaining weight steadily. Must be the air he breath :)))
I can't explain how good it feels when you know that the worst part of the treatment is over!!! No more long chemo ( some of them go in his vein on the drip for 4 hours) no more chemo in my fridge ( that's for our community nurses, when they give it at home). So yes it feels like we can start seeing the light at the end of a very long tunnel.
Of course the real celebration will be when all of his treatment will be over, because he still got another 2 years or more to go. But it will not be as intensive and will not have so many nasty side effects and he should be back to him normal self.
And I cant wait for his curls to grow back, not that it is important, but would be nice when he starts nursery in September, that he will look and hopefully feel no different than other children.
Although I know all this treatment has changed him a lot, at the end of the day he has had one year of hospitals , painful treatments, and it is as if one year of his childhood has been lost.
But on the other hand he is only 3 and probably will not remember anything, so that is a good thing.
We hope that starting nursery ( only for couple off hours a day) will give him back his confidence, make friends, and do things that a child his age should be doing.
I must say I am very apprehensive of sending him to nursery, just due to the fact that his immunsisstem will not be as strong as it should be , therefore high risks off infections and hospital admissions, but I guess we have to just see how it goes and if he does get ill all the time, than I will have to take him out of the nursery.
We can't believe it will be a year ( on 19Th of June) since I took him to hospital and the dreadful diagnoses that none of us could ever imagine. It has been the most difficult year of our lives, but I think it has made us stronger and positive attitude and all the support has made the journey less painful.
So thank you all for all support and thank you for caring about our little Christian.
Just a quick update on what is happening know. Christian was supposed to start his Maintenance chemo this Wednesday ( 17Th) but was cancelled due to his blood counts being too low so we will have to wait till next week and see if they will improve.
Christian himself is feeling not too bad, he hasn't had chemo for couple of weeks so the side effects are wearing off. His platelets are quite low at the moment and he is bruising easily, even crying makes him bruise. His hemoglobin is also on the low side, but apart for being pale he is usually still quite active. Our nurse is coming on Friday to take his bloods just to see if he needs any blood or platelet transfusions.
So fingers crossed his bloods will improve and we can start next treatment next week.
I will keep you updated.
P.S I am doing the race on 4Th of July and haven't reached my target yet so please if you can sponsor me, thank you. xxx www.raceforlifesponsorme.org/ilzejacovides
Tuesday, 21 April 2009
Pics of Christian
Christian with daddy at Royal Marsden Hospital
Cheeky
loving the snow
Christian's birthday
with mummy in the park enjoying the ice cream
Cheeky
loving the snow
Christian's birthday
with mummy in the park enjoying the ice cream
Friday, 17 April 2009
April 2009
Today 17Th April Christian started his 2Nd Delayed Intensification. He had Lumbar Puncture wake up screaming from general anaesthetic, but calmed down quite quickly, he also had 2 other chemo drugs, one in his thigh as injection, other in his blood stream, this one took an hour and usually makes you sick so Christian had anti sickness , but by experience he is not sick from it.
This block of chemo will last for 7 weeks and is the last intensive chemo Christian will have. After this he will go on maintenance for 2,5 years. We were dreading this one , because of the side effects and risks off infections, but also we are glad that this is the last intensive chemo therapy for him.
He also is starting on high does of steroids tomorrow for 7 days :(( so I'll have little steroid monster home, hope he will eat something, because steroids makes them soo hungry. I remember at the beginning of his treatment when he was on very high dose of steroids for a month he used to wake up during night and ask for cheeseburger or pasta :) and I used to make them for him.
Monday 20Th we are going to East Surrey Hospital for more chemo- this is the one that makes him constipated.
THANK YOU
I would like say thank you to everybody who have been sponsoring me!!!! Still haven't reached my target, so if anybody able Please sponsor me, I'll be very grateful. I'm running race for life on 4Th of July and my sponsorship page is www.raceforlifesponsorme.org/ilzejacovides
Also thank you to Adonis colleagues for lovely messages!
This block of chemo will last for 7 weeks and is the last intensive chemo Christian will have. After this he will go on maintenance for 2,5 years. We were dreading this one , because of the side effects and risks off infections, but also we are glad that this is the last intensive chemo therapy for him.
He also is starting on high does of steroids tomorrow for 7 days :(( so I'll have little steroid monster home, hope he will eat something, because steroids makes them soo hungry. I remember at the beginning of his treatment when he was on very high dose of steroids for a month he used to wake up during night and ask for cheeseburger or pasta :) and I used to make them for him.
Monday 20Th we are going to East Surrey Hospital for more chemo- this is the one that makes him constipated.
THANK YOU
I would like say thank you to everybody who have been sponsoring me!!!! Still haven't reached my target, so if anybody able Please sponsor me, I'll be very grateful. I'm running race for life on 4Th of July and my sponsorship page is www.raceforlifesponsorme.org/ilzejacovides
Also thank you to Adonis colleagues for lovely messages!
March 2009
March wasn't a very busy month for us. Christian had Vincristine ( chemo drug) on 19Th of march and his Lumbar puncture on 20Th of March at Royal Marsden. All went well, he also is 5 days on steroids and 2 chemo drugs orally - one every day, and other only once a week.
6Th of March nurse came home ( like they do every Monday) and took some bloods, his neutrophils ( blood cells that fight bacterial infections) were very low 0.1 ( normal level 1,5-6) so his oral chemo had to be stoped. It has to be above 0.75 to continue. Anyway anything under 1 and they are neutropenic- which means their immunsisstem is not doing it's work and they are very easy to catch anything, so we have to avoid crowded places.
Luckily he didn't have temperature, so we didn't have to go to hospital.
Blood tests also showed very high ALT ( shows liver function) normal level is up to 56 or so , but his was 1300!!! Luckily that has been drooping down so no treatment was needed.
He still has got rush, that comes and goes, it doesn't seem to bother him.
He hasn't been eating at all, not even chocolate, nothing solid, he just refuses. So he is having protein milk shakes that dietitian prescribed. He doesn't like them so we have to give it to him with syringe ( he'll take anything from syringe:)) bless him).
10Th of March was Christians 3rd Birthday, his cousin came over and Christian had lots of fun!!!
6Th of March nurse came home ( like they do every Monday) and took some bloods, his neutrophils ( blood cells that fight bacterial infections) were very low 0.1 ( normal level 1,5-6) so his oral chemo had to be stoped. It has to be above 0.75 to continue. Anyway anything under 1 and they are neutropenic- which means their immunsisstem is not doing it's work and they are very easy to catch anything, so we have to avoid crowded places.
Luckily he didn't have temperature, so we didn't have to go to hospital.
Blood tests also showed very high ALT ( shows liver function) normal level is up to 56 or so , but his was 1300!!! Luckily that has been drooping down so no treatment was needed.
He still has got rush, that comes and goes, it doesn't seem to bother him.
He hasn't been eating at all, not even chocolate, nothing solid, he just refuses. So he is having protein milk shakes that dietitian prescribed. He doesn't like them so we have to give it to him with syringe ( he'll take anything from syringe:)) bless him).
10Th of March was Christians 3rd Birthday, his cousin came over and Christian had lots of fun!!!
Wednesday, 4 March 2009
24Th February
Just a quick update on how Christian is doing.
24Th February Christian started his next block of chemo - interim maintenance No 2.
He had his lumbar puncture ( chemo into his spine under general anesthetic) and bone marrow ( sample from his bone marrow to see how he is doing).
All went well, Christian was very excited, he loves the Hospital's play room :)) and did not want to leave, he was crying so much, bless him:).
25Th East Surrey for more chemo Vincristine-this one has nasty side effects, like constipation and aches all over the body.
Christian also had appointment in Royal Marsden to see a dermatologist , because of his rash. There have been different opinions from different doctors and they are not sure what that rash is.
We have been using steroid cream and the rash gets better but spreads elsewhere. Anyway we are told by dermatologists we are going to treat it as eczema, it is likely that his skin has become very sensitive due to the chemo drugs. So we have more steroid cream to take home and hope it will clear.
Christian is also on steroids for 5 days and 2 types of oral chemo one every day and one once a week.
He has been very constipated for a few days and not very happy. Steroids make him very short tempered and he is screaming a lot , everything irritates him and he has got a very very loud voice, he better be a singer :))
This block lasts for 8 weeks and is not a very intensive one so therefore his hair, eyelashes and brows started growing back :) They will fell out once more, when he will be on his last intensive block.
2Nd March nurse came to take his blood, his blood counts are the best they have been in a long time. This means he has got some immunity and we took him to the park first time since his diagnosis and he was soo happy and running around , forgot about the constipation.
We were glad he moved at least, at home because of the pain due to him being constipated he would not walk just sit. I hate him being constipated, because I can see he is really in pain and I can not help apart from giving him medicines to relieve it, but it takes few days to work.
24Th February Christian started his next block of chemo - interim maintenance No 2.
He had his lumbar puncture ( chemo into his spine under general anesthetic) and bone marrow ( sample from his bone marrow to see how he is doing).
All went well, Christian was very excited, he loves the Hospital's play room :)) and did not want to leave, he was crying so much, bless him:).
25Th East Surrey for more chemo Vincristine-this one has nasty side effects, like constipation and aches all over the body.
Christian also had appointment in Royal Marsden to see a dermatologist , because of his rash. There have been different opinions from different doctors and they are not sure what that rash is.
We have been using steroid cream and the rash gets better but spreads elsewhere. Anyway we are told by dermatologists we are going to treat it as eczema, it is likely that his skin has become very sensitive due to the chemo drugs. So we have more steroid cream to take home and hope it will clear.
Christian is also on steroids for 5 days and 2 types of oral chemo one every day and one once a week.
He has been very constipated for a few days and not very happy. Steroids make him very short tempered and he is screaming a lot , everything irritates him and he has got a very very loud voice, he better be a singer :))
This block lasts for 8 weeks and is not a very intensive one so therefore his hair, eyelashes and brows started growing back :) They will fell out once more, when he will be on his last intensive block.
2Nd March nurse came to take his blood, his blood counts are the best they have been in a long time. This means he has got some immunity and we took him to the park first time since his diagnosis and he was soo happy and running around , forgot about the constipation.
We were glad he moved at least, at home because of the pain due to him being constipated he would not walk just sit. I hate him being constipated, because I can see he is really in pain and I can not help apart from giving him medicines to relieve it, but it takes few days to work.
Tuesday, 17 February 2009
16Th February
Christian's next chemo block was cancelled, he was supposed to start it last Friday, but his blood counts were not up to the required level. This happens every time :( his blood just doesn't recover quick enough from the last chemo.
He has developed very bad rush all over his body and we were told it is dermatitis type of eczema. He was prescribed steroid cream, lets hope it will help to clear it. The rush is particularly bad around his port, which is not good, because when he has his needle in he has to have a big plaster in that area.
Tomorrow nurse is coming to do a blood test and see if he will be ready for the chemo this Friday.
We also have seen a dietitian and keeping food diary, just to see how much and what he is eating. At the moment the food he likes is chocolate and toffee dessert and lots of milk. Now and then he will have something like spaghetti ( few spoonfuls) but that doesn't happen very often.
Apart from the rush , which is not too itchy he is feeling well himself. Little bit more tired than usual in the mornings, but full of energy during the day.
17Th February nurse came, blood counts not up to the level but Royal Marsden decided to give him chemo this Friday in his spine ( Lumbar puncture) and do a bone marrow. He will not start his oral chemo drugs and steroids until his blood counts will be up to level. He will also have Vincristine ( another chemo drug) on Monday and this will be given at East Surrey hospital.
19Th Today is 8 month since Christian was diagnosed with Leukaemia. We still haven't finished the intensive bit due to many cancellations, we are about 2 month behind, but this is not unusual and happens to many.
Time has gone fast and we believe the most difficult part is over and hope he will continue to be in good health and in a remission.
Every day 10 children and young people are diagnosed with cancer. CLIC Sargent ( http://www.clicsargent.org.uk/) is there for them...with clinical expertise, emotional care and financial support in hospital, at home and in the community all over the UK.
I have been so incredibly upset about Jade Goody's terminal cervical cancer diagnosis. I know that people are dying every day all over the world because of cancer and she is just one of those people, the only difference is she is in a public eye.
I think her talking about her Cancer battle publicly have raised more awareness about cervical cancer and showed the devastation that cancer brings in a family. I do believe by talking about cancer, reading, writing we can raise awareness and also hopefully make people to donate so there can be more research done and new drugs developed.
There are many things you can do to donate by organising an event, coffee morning, sponsored walk and many, many more to help raise money for cancer researching.
One of the good websites is http://www.cancerresearch.org.uk/
I am also doing Cancer Research Race for life on 4Th July in Brighton. I have set up a fundraising page and my target is to raise 300 pounds http://www.raceforlifesponsorme.org/ilzejacovides Any donations would be greatly appreciated!
This race is open only for women and if anybody would like to do it please let me know, we can organise a team. Its a great event for a good cause. It is only 5 kilometres and you don't have to run it we can walk so you don't have to be in very fit condition ( I'm not anyway :))
He has developed very bad rush all over his body and we were told it is dermatitis type of eczema. He was prescribed steroid cream, lets hope it will help to clear it. The rush is particularly bad around his port, which is not good, because when he has his needle in he has to have a big plaster in that area.
Tomorrow nurse is coming to do a blood test and see if he will be ready for the chemo this Friday.
We also have seen a dietitian and keeping food diary, just to see how much and what he is eating. At the moment the food he likes is chocolate and toffee dessert and lots of milk. Now and then he will have something like spaghetti ( few spoonfuls) but that doesn't happen very often.
Apart from the rush , which is not too itchy he is feeling well himself. Little bit more tired than usual in the mornings, but full of energy during the day.
17Th February nurse came, blood counts not up to the level but Royal Marsden decided to give him chemo this Friday in his spine ( Lumbar puncture) and do a bone marrow. He will not start his oral chemo drugs and steroids until his blood counts will be up to level. He will also have Vincristine ( another chemo drug) on Monday and this will be given at East Surrey hospital.
19Th Today is 8 month since Christian was diagnosed with Leukaemia. We still haven't finished the intensive bit due to many cancellations, we are about 2 month behind, but this is not unusual and happens to many.
Time has gone fast and we believe the most difficult part is over and hope he will continue to be in good health and in a remission.
Every day 10 children and young people are diagnosed with cancer. CLIC Sargent ( http://www.clicsargent.org.uk/) is there for them...with clinical expertise, emotional care and financial support in hospital, at home and in the community all over the UK.
I have been so incredibly upset about Jade Goody's terminal cervical cancer diagnosis. I know that people are dying every day all over the world because of cancer and she is just one of those people, the only difference is she is in a public eye.
I think her talking about her Cancer battle publicly have raised more awareness about cervical cancer and showed the devastation that cancer brings in a family. I do believe by talking about cancer, reading, writing we can raise awareness and also hopefully make people to donate so there can be more research done and new drugs developed.
There are many things you can do to donate by organising an event, coffee morning, sponsored walk and many, many more to help raise money for cancer researching.
One of the good websites is http://www.cancerresearch.org.uk/
I am also doing Cancer Research Race for life on 4Th July in Brighton. I have set up a fundraising page and my target is to raise 300 pounds http://www.raceforlifesponsorme.org/ilzejacovides Any donations would be greatly appreciated!
This race is open only for women and if anybody would like to do it please let me know, we can organise a team. Its a great event for a good cause. It is only 5 kilometres and you don't have to run it we can walk so you don't have to be in very fit condition ( I'm not anyway :))
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