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.
Wednesday, 4 March 2009
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 :))
Friday, 6 February 2009
6Th February 2009
Christian has been fine. He has been constipated for a few days, but is better now.
His blood counts are not so good, low hemoglobin and platelets, so he will possibly need a blood and platelet transfusion next week. He has got lots of bruises ( due to low platelets) and is a bit pale in colour but not too lethargic.
He also is starting to try some foods, which we are very happy about!
We took donations from Sebastian's school to East Surrey Hospital and they were very pleased!
Thank you to everybody who donated !!!
Christian is getting very frustrated, he is fed up with staying home all the time ( it has been more than 7 month), but unfortunately due to the high risk of infections,especially this time off year, it is not wise to take him to nursery or any other public places.
It will not be like this forever, but for time being the safest for him is to stay home. In his condition infections, any other illnesses, especially chicken pox or measles could be fatal, so it is not worth the risk.
I know that at some point I will have to take him out but I do get very nervous about him being around other people, because of the risk of infections and germs. I'm sure that parents in the same situation as we feel the same.
Obviously Sebastian can not have any friends round either, so it has affected him as well. The are no family outings, no parties, no social life what so ever, but we know that Christian's health is all that matters now and we will have one massive party once his treatment is over :))))
East Surrey hospital's Outwood ward's play specialist Claire and one of the nurses with some of the donations ( too many to put all in a picture)
His blood counts are not so good, low hemoglobin and platelets, so he will possibly need a blood and platelet transfusion next week. He has got lots of bruises ( due to low platelets) and is a bit pale in colour but not too lethargic.
He also is starting to try some foods, which we are very happy about!
We took donations from Sebastian's school to East Surrey Hospital and they were very pleased!
Thank you to everybody who donated !!!
Christian is getting very frustrated, he is fed up with staying home all the time ( it has been more than 7 month), but unfortunately due to the high risk of infections,especially this time off year, it is not wise to take him to nursery or any other public places.
It will not be like this forever, but for time being the safest for him is to stay home. In his condition infections, any other illnesses, especially chicken pox or measles could be fatal, so it is not worth the risk.
I know that at some point I will have to take him out but I do get very nervous about him being around other people, because of the risk of infections and germs. I'm sure that parents in the same situation as we feel the same.
Obviously Sebastian can not have any friends round either, so it has affected him as well. The are no family outings, no parties, no social life what so ever, but we know that Christian's health is all that matters now and we will have one massive party once his treatment is over :))))
Christian did not want to take the picture :)
All the donations from St John's Catholic Primary school in Horsham
East Surrey hospital's Outwood ward's play specialist Claire and one of the nurses with some of the donations ( too many to put all in a picture)Tuesday, 27 January 2009
27Th January
Just a quick update on how Christian is doing.
26Th went to Royal Marsden for Lumbar Puncture and Cytarabine(chemo drug). All went well, Christian is feeling fine.
27Th nurse came home to give him more Cytarabine and will come to give it tomorrow and Thursday as well. I also give him chemo at home orally.
And than that's it we will have finished his 1st delayed intensification and if his blood counts will be fine we will start his next block of chemo on 13Th of February.
We were so pleased and pleasantly surprised about the amount of donation for East Surrey children's ward. Thank you so much to all the parents at St John's Catholic school for all your donations! I am sure the Outwood ward will appreciate it very much!
26Th went to Royal Marsden for Lumbar Puncture and Cytarabine(chemo drug). All went well, Christian is feeling fine.
27Th nurse came home to give him more Cytarabine and will come to give it tomorrow and Thursday as well. I also give him chemo at home orally.
And than that's it we will have finished his 1st delayed intensification and if his blood counts will be fine we will start his next block of chemo on 13Th of February.
We were so pleased and pleasantly surprised about the amount of donation for East Surrey children's ward. Thank you so much to all the parents at St John's Catholic school for all your donations! I am sure the Outwood ward will appreciate it very much!
Friday, 23 January 2009
23rd January 2009
20Th January Christian's long day at Royal Marsden went well. They did have a trouble with his line, just as we went in for him to be put to sleep it turned out the line wasn't working, so instead off general anaesthetic given by medicine, he had to inhale gas ( never done that before).
He didn't want to, but we had to hold him and put the mask on his face, the gas was so strong I nearly fell asleep :).
21st nurse came home to give him more chemo, again the line wasn't bleeding back, so he had to have needle out and new put in, still wasn't working, but the nurse was sure it was in the right place and gave him chemo. Before they give any medication or chemo they need to see if line is bleeding back, this is to make sure the needle is in the right place.
22Nd nurse came again to give more chemo and line was working !!
23rd more chemo all went well. Christian has been feeling well apart from feeling a bit sick but I give him antisickness medicine and he is fine. Luckily chemo drugs do not make him sick he only gets very constipated from some of them. He is still not eating but is drinking lots of milk during the night, so as long his weight stays stable we are not too worried, although it is frustrating, but we know that the reason he is not eating is due the chemo.
We would like to say thank you to headteacher Mrs Cox and everybody at office at Sebastian's ( Christian's brother) school for putting Christian's blog address in their newsletter and for asking parents to donate any video tapes, DVD's, Cd's and PlayStation games they don't use for East Surrey children's ward.
As Christian have to spend lots of time there we noticed that they do not have a great collection of them and usually when children are not well the only thing they can do to pass their time is to watch their favorite movies or cartoons or older children like to play games on PlayStation. We have spoken to play specialist in children's ward and they would greatly appreciate any donations!
We also would like more people to follow this blog, because our aim is to raise awareness about childhood cancers and leukaemia. One child in 600 develops cancer-around 1.700 a year in the UK and Ireland. It is still rare although incidents of leukaemia are on the rise.
I also have put some links at the bottom of this blog so you can visit and read more and maybe donate to one of the charities or Christian's fund all the money will go to researching, supporting families with children with cancer.
Nobody knows why childhood leukaemia and other Cancers happens and research is so vital so the incidents of childhood cancer and leukaemia could be prevented. Also hopefully in not to distant future childhood cancers will be fully curable,that would be amazing!
So please donate as much as you can, every penny counts!
In last weeks West Sussex County Times was article about Christian and picture of him and his brother, here is the link http://www.wscountytimes.co.uk/news/National-award-for-brave-toddler.4885587.jp
He didn't want to, but we had to hold him and put the mask on his face, the gas was so strong I nearly fell asleep :).
21st nurse came home to give him more chemo, again the line wasn't bleeding back, so he had to have needle out and new put in, still wasn't working, but the nurse was sure it was in the right place and gave him chemo. Before they give any medication or chemo they need to see if line is bleeding back, this is to make sure the needle is in the right place.
22Nd nurse came again to give more chemo and line was working !!
23rd more chemo all went well. Christian has been feeling well apart from feeling a bit sick but I give him antisickness medicine and he is fine. Luckily chemo drugs do not make him sick he only gets very constipated from some of them. He is still not eating but is drinking lots of milk during the night, so as long his weight stays stable we are not too worried, although it is frustrating, but we know that the reason he is not eating is due the chemo.
We would like to say thank you to headteacher Mrs Cox and everybody at office at Sebastian's ( Christian's brother) school for putting Christian's blog address in their newsletter and for asking parents to donate any video tapes, DVD's, Cd's and PlayStation games they don't use for East Surrey children's ward.
As Christian have to spend lots of time there we noticed that they do not have a great collection of them and usually when children are not well the only thing they can do to pass their time is to watch their favorite movies or cartoons or older children like to play games on PlayStation. We have spoken to play specialist in children's ward and they would greatly appreciate any donations!
We also would like more people to follow this blog, because our aim is to raise awareness about childhood cancers and leukaemia. One child in 600 develops cancer-around 1.700 a year in the UK and Ireland. It is still rare although incidents of leukaemia are on the rise.
I also have put some links at the bottom of this blog so you can visit and read more and maybe donate to one of the charities or Christian's fund all the money will go to researching, supporting families with children with cancer.
Nobody knows why childhood leukaemia and other Cancers happens and research is so vital so the incidents of childhood cancer and leukaemia could be prevented. Also hopefully in not to distant future childhood cancers will be fully curable,that would be amazing!
So please donate as much as you can, every penny counts!
In last weeks West Sussex County Times was article about Christian and picture of him and his brother, here is the link http://www.wscountytimes.co.uk/news/National-award-for-brave-toddler.4885587.jp
Monday, 19 January 2009
19Th January
Nurse came today to take Christian's blood and later phoned with the results and his neutrophils are up( 0.8), so he is going in for a chemo to Royal Marsden at Sutton tomorrow.
He will have his LP ( lumbar puncture-chemo in his spinal fluid) under general anaesthetic as usual.
He also will have Cyclophosphamide ( I can't even say this one:))) and it takes 4 hours and Cytarabine - doesn't take long. He will also start his oral chemo that I give him.
So we will have a long day tomorrow and lots of chemo. Christian is quite excited actually, because he wants to go and play in a play room! Bless him!
That's why children are the best patients, one minute they crying, the next they are playing. They forget easily, they don't have negative thoughts, especially Christian's age. He doesn't even realise or care that his hair are gone. When I ask him were is his hair he shows me his bald head and says :" It's there mummy, brush them."
And he obviously doesn't understand his illness, he is very proud off his 'wiggly' ( the needle with tube that goes into his implanted port) and he thinks everybody has it.
Christian's 'wiggly'
He will have his LP ( lumbar puncture-chemo in his spinal fluid) under general anaesthetic as usual.
He also will have Cyclophosphamide ( I can't even say this one:))) and it takes 4 hours and Cytarabine - doesn't take long. He will also start his oral chemo that I give him.
So we will have a long day tomorrow and lots of chemo. Christian is quite excited actually, because he wants to go and play in a play room! Bless him!
That's why children are the best patients, one minute they crying, the next they are playing. They forget easily, they don't have negative thoughts, especially Christian's age. He doesn't even realise or care that his hair are gone. When I ask him were is his hair he shows me his bald head and says :" It's there mummy, brush them."
And he obviously doesn't understand his illness, he is very proud off his 'wiggly' ( the needle with tube that goes into his implanted port) and he thinks everybody has it.
Christian's 'wiggly'
Wednesday, 14 January 2009
14Th January
Christian is doing well at the moment. The blood test last Monday showed that his liver function is back to normal. He was supposed to start his second part of delayed intensification on 6Th of January, but had to be canceled because of his blood counts being to low so hopefully next week on Tuesday he will be able to continue with his chemo therapy.
Every Monday our community nurse comes home and takes a blood from his line and phones in with the results.
On 12Th of January his blood counts were:
Every Monday our community nurse comes home and takes a blood from his line and phones in with the results.
On 12Th of January his blood counts were:
- Red blood cells ( contain haemoglobin which carries oxygen around body)-10.9 ( normal level 11-13g/dl
- White cell count(fight infection) - 2.7 ( normal level 5-10)
- Neutrophil count ( fight bacterial infections)-0.3 ( normal level 1.5-6)
- Platelets ( clots blood) - 349 ( normal level 150-400)
So overall very good blood count results for Christian except neutraphils, to carry on with the chemo they have to be at least 0.75 and his are 0.3 at the moment, so fingers crossed they will be up by next Monday.
In the past he had to have full blood transfusions , because his haemoglobin was very low down to 6 and platelet transfusions because his platelets were down to 10 .
This made us realise how important donating the blood is, without blood transfusions Christian's treatment wouldn't be possible.
Only 5% of population donates the blood, and donors are very needed. It takes only an hour to donate the blood and it my safe somebody's life. So if you are able please go to http://www.giveblood.co.uk/ for more information.
Christian also is in today's " The Argus" newspaper, there is an article about him and picture of him and Sebastian ( his eldest brother). Cancer research are trying to raise awareness about children with cancer and therefore they are putting stories in local newspapers.
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