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!
Tuesday, 27 January 2009
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.
Monday, 12 January 2009
Christian's Little Star Award January
Cancer Research UK's Little Star Awards, in partnership with TK Maxx,celebrate the courage of children who have been diagnosed with cancer.
I nominated Christian and last Friday his award arrived! It's a Little Star trophy, teddy,a t-shirt and certificate signed by celebrities like Leona Lewis, Lewis Hamilton and others, Sebastian also got a certificate for being a very supportive brother.
What a lovely way to award children with cancer and families it definitely lifted our spirits!
Also as we want to raise awareness about leukaemia and cancer we agreed to put our story in a local newspaper. I was contacted by journalist from cancer research and photographer came to take a pictures of Sebastian and Christian.
So they will be in this weeks West Sussex County Times, it comes out on Fridays so buy a copy on 16Th. They will also be in Argus newspaper this week., they just done pictures as well.
If you know any child with cancer who is undergoing treatment or finished , you can nominate them for a Little Star Award on www.cancerresearchuk.org/littlestar until 28Th of February 2009.
I nominated Christian and last Friday his award arrived! It's a Little Star trophy, teddy,a t-shirt and certificate signed by celebrities like Leona Lewis, Lewis Hamilton and others, Sebastian also got a certificate for being a very supportive brother.
What a lovely way to award children with cancer and families it definitely lifted our spirits!
Also as we want to raise awareness about leukaemia and cancer we agreed to put our story in a local newspaper. I was contacted by journalist from cancer research and photographer came to take a pictures of Sebastian and Christian.
So they will be in this weeks West Sussex County Times, it comes out on Fridays so buy a copy on 16Th. They will also be in Argus newspaper this week., they just done pictures as well.
If you know any child with cancer who is undergoing treatment or finished , you can nominate them for a Little Star Award on www.cancerresearchuk.org/littlestar until 28Th of February 2009.
Sunday, 11 January 2009
Signs and symptoms of leukaeamia
Before Christian's diagnosis I never thought about leukaemia, didn't know about the symptoms, because you just don't think it will happen to your child.
Leukaemia in children is still rare although the number of new cases diagnosed each year increased steadily through the 20th century.
I would just like to mention the signs of leukaemia, I think it is good to educate people about leukaemia and I also hope you or your child will never experience this illness.
Also when I met other parents in hospital non of them knew signs of leukaemia and for some of them their child's diagnosis only came after repeated visits to GP and child becoming very unwell.
Leukaemia in children is still rare although the number of new cases diagnosed each year increased steadily through the 20th century.
I would just like to mention the signs of leukaemia, I think it is good to educate people about leukaemia and I also hope you or your child will never experience this illness.
Also when I met other parents in hospital non of them knew signs of leukaemia and for some of them their child's diagnosis only came after repeated visits to GP and child becoming very unwell.
Symptoms:
- Anemia ( lack of haemoglobin),causing:
>Fatigue and limited capacity for exercise
>Breathlessness
- Low platelet counts, causing:
>Bruising within the skin
>Bleeding from mouth or nose and blood in the stools or vomit
- Low numbers of normal white cells, high number of abnormal cells and high metabolic rate, causing:
>Persistent infections
>Fever-this is often present even in the absence of clear indications of infection
How is leukaemia diagnosed?
It takes full blood count and bone marrow aspirate ( a procedure where a small sample of bone marrow is taken) to diagnose leukaemia.
Christian only had one symptom from above ( bruising), although these are signs of leukaemia, they could also be signs of other illnesses so if your child gets any symptoms don't panic, because it is very unlikely to be leukaemia, but if you are worried all it take is a full blood count, so you could ask your GP for a blood test.
Thursday, 8 January 2009
Pics of Christian
Christian at Royal Marsden hospital just before xmas
East Surrey hospital
Christmas morning
East Surrey hospital
Sunday, 4 January 2009
East Surrey Hospital boxing day 2008
25Th December Christian spend Christmas day at home, not feeling very well, very constipated. He didn't enjoy the day much , didn't even care about the presents, but we were glad to be at home.
26Th December Christian woke us up at 3 am crying , because of the constipation and I checked his temperature , because he seemed hot and it was 39 so we called hospital and were told to go in.
The nurse couldn't get his line to work , so she asked another nurse to try. Christian ended up with 4 nurses and a doctor unable to access him and therefore he needed cannula in his arm. It took few attempts to put cannula in his arm, because his veins are so tiny.
He also had an ex ray to see why his line is not working and started 3 antibiotics every 6 hours.
27Th December still in east surrey hospital, Christian still has temperature and is very constipated despite me giving him 2 medicines to relieve the constipation. So far every doctor is telling me his belly is soft and he doesn't seem to be constipated, but I know he is.
28Th Christians temp seem to be on the rise, he has paracetamol every four hours , but temp keeps going up. He also has a bit of cough an runny nose, still on antibiotics.
29Th Oncology nurse comes and tries to access him and she is successful Hallelujah!!! Adonis said if I wouldn't be there he would of kissed her ( cheeky).
Anyway the reason why we were so happy is because we were booked to go to St George's Hospital in London to have his line removed!! That would have been a disaster! It is his second line after all and we hope it will stay until end of his treatment although it has started to play up.
Basically as soon as nurse puts a needle in it should bleed back, but it doesn't he has to sit down, lift his arms, change positions and than it eventually bleeds. This is what happened with his first line.
Christian still has high temperature it should have settled by now. Usually by day 3 he has no temperature , but this time antibiotics doesn't seem to work. He is still constipated, although doctors tell me otherwise.
30Th He has high temp in a morning it was 39.7 , we were told he will have to have ultrasound scan to his abdomen and CT scan off the whole body. Because the antibiotics are not working they are now wondering whether he has a fungal infection and will start on his 4th antibiotic against fungus. Scan reveals that everything is fine apart from that he is very very constipated, which I'm glad now doctors will believe me. He is given Movicol to relieve his constipation, he is still in a lot of pain and refuses to sit up or walk.
31st New Years eve Christian still has got temperature so no chance of going home today.
He is still on 4 antibiotics and very constipated. Nurses close up play room for us, we need to make Christian walk to help his bowels to move. He cries in a play room and asks me to pick him up but I keep running away and his running after me and than we hear this noise...and smell..:)
So I change him and we are off to play room again. He did open his bowels 4 times , and even started playing with cars ( he hasn't been playing for a few days). So that's a good sign!
1st January Christian's temperature is going down, he is feeling better and playing. We still can not go home , but hopping in couple of days we will if his condition keeps improving.
Overall good start to the New Year !!!
2ND still in hospital, Christian keeps improving, no temperature and still a bit constipated but not in a pain, like before.
3rd January going home!!!!!! Christian stops antibiotics. His liver is showing signs off being affected probably from anti fungal antibiotics, but doctors hope it will improve.
26Th December Christian woke us up at 3 am crying , because of the constipation and I checked his temperature , because he seemed hot and it was 39 so we called hospital and were told to go in.
The nurse couldn't get his line to work , so she asked another nurse to try. Christian ended up with 4 nurses and a doctor unable to access him and therefore he needed cannula in his arm. It took few attempts to put cannula in his arm, because his veins are so tiny.
He also had an ex ray to see why his line is not working and started 3 antibiotics every 6 hours.
27Th December still in east surrey hospital, Christian still has temperature and is very constipated despite me giving him 2 medicines to relieve the constipation. So far every doctor is telling me his belly is soft and he doesn't seem to be constipated, but I know he is.
28Th Christians temp seem to be on the rise, he has paracetamol every four hours , but temp keeps going up. He also has a bit of cough an runny nose, still on antibiotics.
29Th Oncology nurse comes and tries to access him and she is successful Hallelujah!!! Adonis said if I wouldn't be there he would of kissed her ( cheeky).
Anyway the reason why we were so happy is because we were booked to go to St George's Hospital in London to have his line removed!! That would have been a disaster! It is his second line after all and we hope it will stay until end of his treatment although it has started to play up.
Basically as soon as nurse puts a needle in it should bleed back, but it doesn't he has to sit down, lift his arms, change positions and than it eventually bleeds. This is what happened with his first line.
Christian still has high temperature it should have settled by now. Usually by day 3 he has no temperature , but this time antibiotics doesn't seem to work. He is still constipated, although doctors tell me otherwise.
30Th He has high temp in a morning it was 39.7 , we were told he will have to have ultrasound scan to his abdomen and CT scan off the whole body. Because the antibiotics are not working they are now wondering whether he has a fungal infection and will start on his 4th antibiotic against fungus. Scan reveals that everything is fine apart from that he is very very constipated, which I'm glad now doctors will believe me. He is given Movicol to relieve his constipation, he is still in a lot of pain and refuses to sit up or walk.
31st New Years eve Christian still has got temperature so no chance of going home today.
He is still on 4 antibiotics and very constipated. Nurses close up play room for us, we need to make Christian walk to help his bowels to move. He cries in a play room and asks me to pick him up but I keep running away and his running after me and than we hear this noise...and smell..:)
So I change him and we are off to play room again. He did open his bowels 4 times , and even started playing with cars ( he hasn't been playing for a few days). So that's a good sign!
1st January Christian's temperature is going down, he is feeling better and playing. We still can not go home , but hopping in couple of days we will if his condition keeps improving.
Overall good start to the New Year !!!
2ND still in hospital, Christian keeps improving, no temperature and still a bit constipated but not in a pain, like before.
3rd January going home!!!!!! Christian stops antibiotics. His liver is showing signs off being affected probably from anti fungal antibiotics, but doctors hope it will improve.
Subscribe to:
Posts (Atom)
