3rd December RMH Christian started his delayed intensification. On this day he had MRD( example from bone marrow to see how he is doing),LP ( chemo into his spinal fluid), Doxorubicin ( one of the chemo drugs going into his blood stream, takes one hour) and Peg Asparaginase ( chemo drug goes in to his muscle).
Christian is fine, he loves playing in the play room, not crying anymore when put to sleep, sits on my lap and watches Tom&Jerry while they put drugs in to his line and fells asleep. Wen he wakes up he is also not too bad usually he screams and kicks and wants to run just uncontrollable and it takes us an hour to calm him down.
After more chemo he is chasing nurses down the corridor and being very chatty and happy, only gets tired on the way home when chemo starts to take affect on him.
4Th December East Surrey hospital for vincristine ( another chemo) this one has nasty side affects on him like constipation, joint, muscle aches.
He is also starting on the high dose of steroids and they usually make him very moody, aggressive, hungry (this one I don't mind, he usually doesn't eat anything).
10Th RMH for more chemo, Christian is still feeling fine and we secretly hope this time the drugs will not have such a bad side affects.
17Th RMH vincristine & Doxorubicin again daddy had to take him because I and Sebastian are not well and don't want to pass it to other children in hospital. It is his first time without me, but he was fine played in a playroom with daddy and read books while was having a chemo :).
Christian will have a brake now until 6Th of January and if his blood counts will be fine ( which they never are) will start his next chemo drugs in this block on the 6Th.
We also were asked if we want to enter the trial and after lot of thinking said yes, but because it is randomised, computer did not choose him so he will have two intensification blocks instead of one. Basically the aim of the trial is to see whether children who are in a low risk group and are in remission( like Christian), can be successfully treated with less chemo, however he was not chosen so he will go through the standard treatment now.
21Th December side affects are kicking in Christian is not well, his body is so stiff he seems so uncomfortable, also very tired and very angry and irritated. He also is very constipated and his stomach is hard and blown up. He cries allot and asks me to change his nappy all the time, because he thinks he has done a poo, but he hasn't. So Ill just pretend to be changing it.
He also doesn't want his brother or daddy only mummy, so to have a shower is a challenge, because he just screams for me. He is also staring to rub his face, basically he is doing all the things he used to at the beginning of his treatment and having the same side affects.
Steroids make him very hungry, but chemo drugs change the taste buds so anything he tries he doesn't like and I keep making different foods that he asks me, but he tries them and spits them out. The only thing I found he likes at the moment is baked beans so baked beans for breakfast , lunch and dinner and lots of milk during the night. He must wake up for milk at least 4-5 times at night, worse than newborn :).
Anyway I don't mind I am used to this he has been consistently waking up for milk every night since started his treatment. ( I am known in hospital as sleepwalking mother with bottle of milk in my hand). After all at the moment milk is his main food and if he didn't drink that he would be tub fed.
We have seen dietitians couple of times but nothing worked, I was told not to give milk and he end up going off the milk us well and not eating either. He was also prescribed milk shakes but doesn't like them.
His hair also are felling out , but that is the least of our worries.
Because of this intensive block he is also very prone to infections ( his neutraphils are 0.1 anything under 1 and they become neutraphinic-easy to catch anything).
Even the food have to be carefully prepared, not reheated twice, no live bio yogurts, no see food, anything that can carry a bacteria. I also keep the house very clean, moping , hoovering, dusting is every day routine, the same as is constant hand washing, bedding changing every other day.
Sebastian is very good washes his hands all the time, by the end of it we all will be obsessed with germs :)
It will be a very quiet Christmas for us, but I am sure the boys will enjoy, because they do have a lots of presents, so they will be spoilt this Xmas!
Tuesday, 23 December 2008
November 2008
10Th November told to stop Mercaptopurine ( oral chemo) because Christians blood counts are too low to continue, will have to wait until his next blood results.
Our community nurse comes every Monday to do blood tests.
17Th November blood neutrophils still too low so no mercaptopurine for another week.
24Th November the same story again no oral chemo.
26Th Supposed to start his intensive block but canceled , blood count too low again.
So again not much happening in November because of the blood counts, Christian spend nearly the whole month without chemo. He is feeling good, no chemo-no side affects, but we area bit worried because don't want to delay chemo for so long, but doctors reassure as that this happens and not to worry. It is safer to wait for his blood to recover than start chemo.
Christian was invited to Christmas party at Harrods and we spend a lovely time there!
October 2008
1St of October Christian finally started his next block of chemo. This block is less intensive so less visits to hospital. He will start his oral chemo and I will have to give it to him. I have to wear protective gloves,apron, try not to inhale it and have to be careful not to spill it and dispose in a special bag. I asked the doctors what could it do to me if I am not careful and they sad it could affect my ovaries. I am also supposed to wear gloves when changing him, because obviously it stays in his urine and dispose nappy's in bags.
Anyway we had so much struggle with him taking medicines, I have to put them in the syringes and he would scream and kick and spit them or put his tongue in front or not open his mouth. We used to just hold him and bit by bit put it in his mouth, but he always managed to spit some out. At his age it is difficult to explain to him, that he needs this medicines to get well, he is to young to understand and they taste awful too.
Doctors were getting concerned, because if he is not getting enough medicines inside him it will affect his treatment, so we were told to put tube down his nose in to his stomach.
We asked them to give us one more try and tried our hardest to make sure he gets all of it and it paid off. He started to accept that he can cry or kick or spit but he is having the medicine and he started taking it and not spiting it. It took us 3 month, but it was worth the struggle.
Christian is feeling better, playing again, running around being very active, like the child in his age should be. His hair also are starting to grow back.
22 October Christian started to complain about his leg were he has his injections. Basically he has insuflon in his thigh ( little tube, so I don't have to stub him every day when I give an injection and it is changed every week). We have had some problems with this insuflon before sometimes if his platelets are low he will bruise or bleed from it. Couple of times when it was taken out he would not stop bleeding for all day until he would get platelet transfusion.
Anyway I went to check his leg, because it was hurting him so much he stooped walking and discovered very red bruise. It looked bad so I called the hospital and he was admitted.
Anyway we had so much struggle with him taking medicines, I have to put them in the syringes and he would scream and kick and spit them or put his tongue in front or not open his mouth. We used to just hold him and bit by bit put it in his mouth, but he always managed to spit some out. At his age it is difficult to explain to him, that he needs this medicines to get well, he is to young to understand and they taste awful too.
Doctors were getting concerned, because if he is not getting enough medicines inside him it will affect his treatment, so we were told to put tube down his nose in to his stomach.
We asked them to give us one more try and tried our hardest to make sure he gets all of it and it paid off. He started to accept that he can cry or kick or spit but he is having the medicine and he started taking it and not spiting it. It took us 3 month, but it was worth the struggle.
Christian is feeling better, playing again, running around being very active, like the child in his age should be. His hair also are starting to grow back.
22 October Christian started to complain about his leg were he has his injections. Basically he has insuflon in his thigh ( little tube, so I don't have to stub him every day when I give an injection and it is changed every week). We have had some problems with this insuflon before sometimes if his platelets are low he will bruise or bleed from it. Couple of times when it was taken out he would not stop bleeding for all day until he would get platelet transfusion.
Anyway I went to check his leg, because it was hurting him so much he stooped walking and discovered very red bruise. It looked bad so I called the hospital and he was admitted.
They were not sure if it was an infection or allergic reaction to insuflon or the medicine itself. We stayed in hospital overnight and by morning the bruising was better so they put insuflon in another leg and let us go home. By next day bruising appeared on other leg also, so went to hospital again ant they decided to try just injection without insuflon. However after 2 injections he reacted again and finally they decided that it must be medicine.
We had to go to RMH for a scan and it showed no blood cot :))))) so we were told that it is OK to stop it altogether. Of course we are very happy because this was becoming a big problem and lot of pain for Christian. On the other hand we are a bit concerned because he seems to be developing allergic reactions to medicines.
second bruising, the one we stayed in hospital with was even worse
Monday, 22 December 2008
September 2008
Not much happened in September compare how busy we have been before. Christian was due to start his next block of chemo but was delayed for 22 days because his blood counts were too low and they have to be certain level to start the next block.
He also had several blood and platelet transfusions.He started to walk again and feeling a lot better, because of delay he is not suffering from side affects as much.
So in all quite a good month for Christian.
He also had several blood and platelet transfusions.He started to walk again and feeling a lot better, because of delay he is not suffering from side affects as much.
So in all quite a good month for Christian.
About the treatment
Treatment for Leukaemia is 2years for girls and 3 years for boys. Christian has Acute Lymphoblastic Leukaemia ( ALL)-the commonest form of childhood cancer. It is rapidly progressing cancer of the blood which affects those white blood cells known as lymphocytes.
Treatment consists of chemotherapy and steroids.
Chemotherapy can be given orally , by injection into vein and injection into muscle. Christian is having all of these and also intrathecal chemotherapy which is injected into his spinal fluid under general anesthetic.
The treatment is outpatient so we just have to go in for a day, also certain chemo drugs nurses can come and give at home and I also give him oral chemo drugs.
We were so confused at first-all these drugs and names it is like a different language, but we know them all now. Took some time though :)
Obviously chemotherapy has side effects. Christian gets constipated, joint aches,tiredness.
Steroids also have very nasty side effects. Christian gets very hungry all the time, day and night, but because chemotherapy changes taste buds food doesn't taste nice to him. So he is hungry but not eating its like a wishes circle. Also he gets very angry, moody , they just completely change his personality. We were warned about it so we know it is not him, it is the steroids making him behave like this.
He also sweats a lot and his skin gets incredibly dry. At the beginning of his treatment when he was on the high dose of steroids I used to change his clothes all the time , because he would sweat so much, especially nights.
Treatment goes according on the regiment you are in, Christian is on Regiment B which is intermediate risk group, because his white blood counts were very high at the diagnosis, so he is getting a bit more chemo than regiment A.
Chemotherapy goes into the blocks and each block is for several weeks. He has finished his induction, consolidation ( very intensive blocks) and interim maintenance (not so intensive), he is now block 4 delayed intensification which is quite intensive. He will have 2 of these blocks and then for 2/5 years maintenance chemotherapy to make sure leukaemia will not come back.
As always there is this chance of it coming back and nobody can guaranty it will not but we just stay positive and hope that it will never come back.
Chemotherapy drugs damage fast growing cells. As well as destroying cancer sells,they also cause damage to normal cells. Therefore Christian is prone to infections, viruses if his white blood counts and neutrophils (they help to fight infections) are low and if he has temperature he has to go to hospital for few days for intravenous antibiotics.
Also it can affect his red blood cells and if they too low they cause anemia and he needs a blood transfusion ( he had many of them). It also affect platelet counts so he may bruise and bleed more easily and then he needs a platelet transfusion( had many of them also).
Treatment consists of chemotherapy and steroids.
Chemotherapy can be given orally , by injection into vein and injection into muscle. Christian is having all of these and also intrathecal chemotherapy which is injected into his spinal fluid under general anesthetic.
The treatment is outpatient so we just have to go in for a day, also certain chemo drugs nurses can come and give at home and I also give him oral chemo drugs.
We were so confused at first-all these drugs and names it is like a different language, but we know them all now. Took some time though :)
Obviously chemotherapy has side effects. Christian gets constipated, joint aches,tiredness.
Steroids also have very nasty side effects. Christian gets very hungry all the time, day and night, but because chemotherapy changes taste buds food doesn't taste nice to him. So he is hungry but not eating its like a wishes circle. Also he gets very angry, moody , they just completely change his personality. We were warned about it so we know it is not him, it is the steroids making him behave like this.
He also sweats a lot and his skin gets incredibly dry. At the beginning of his treatment when he was on the high dose of steroids I used to change his clothes all the time , because he would sweat so much, especially nights.
Treatment goes according on the regiment you are in, Christian is on Regiment B which is intermediate risk group, because his white blood counts were very high at the diagnosis, so he is getting a bit more chemo than regiment A.
Chemotherapy goes into the blocks and each block is for several weeks. He has finished his induction, consolidation ( very intensive blocks) and interim maintenance (not so intensive), he is now block 4 delayed intensification which is quite intensive. He will have 2 of these blocks and then for 2/5 years maintenance chemotherapy to make sure leukaemia will not come back.
As always there is this chance of it coming back and nobody can guaranty it will not but we just stay positive and hope that it will never come back.
Chemotherapy drugs damage fast growing cells. As well as destroying cancer sells,they also cause damage to normal cells. Therefore Christian is prone to infections, viruses if his white blood counts and neutrophils (they help to fight infections) are low and if he has temperature he has to go to hospital for few days for intravenous antibiotics.
Also it can affect his red blood cells and if they too low they cause anemia and he needs a blood transfusion ( he had many of them). It also affect platelet counts so he may bruise and bleed more easily and then he needs a platelet transfusion( had many of them also).
Thursday, 18 December 2008
Wednesday, 17 December 2008
August 2008
August was spent 10 days in East Surrey Hospital , because of temperature and low sodium.
Christian was having every week blood and platelet transfusions.
Still having injections in his thighs for a blood clot.
Also having medication for his high blood pressure.
Also 4 days in RMH for his LP ( lumbar puncture-chemo in his spinal fluid under general anesthetic, to prevent from leukaemia going int to spinal fluid and brain) and chemo.
Also had nurses coming home giving more chemo and me giving oral chemo.
Very busy month again I can't even remember everything as I am writing 6 month after he started his treatment.
Christian still not walking, but feeling little bit better.
Christian was having every week blood and platelet transfusions.
Still having injections in his thighs for a blood clot.
Also having medication for his high blood pressure.
Also 4 days in RMH for his LP ( lumbar puncture-chemo in his spinal fluid under general anesthetic, to prevent from leukaemia going int to spinal fluid and brain) and chemo.
Also had nurses coming home giving more chemo and me giving oral chemo.
Very busy month again I can't even remember everything as I am writing 6 month after he started his treatment.
Christian still not walking, but feeling little bit better.
St Georges Hospital 2008
29Th of July we have arrived in ST Georges Hospital and were waiting for an operation. We were told he was going in at afternoon. He had been starving since last night and anybody who has a child on steroids will know what does it mean not to give them any food. He is absolutely starving and it is hard to explain to him why mummy and daddy are so mean and not giving him anything to eat or drink. He is not allowed even a water.
The nurses are not very nice in here and nobody is telling us what is going to happen. As it gets to 6pm we gather that he is not going in after all, and doctor confirms it. Obviously we are upset because he has been starving for so long. We were told he is first on the list for next morning.
30Th of July we are still waiting and only by 5 o clock in afternoon he is in for operation ( last on the list, not first like we were told). The operation will last for 2 hours and he will have his line removed and other put in on the right side.
We are so upset with nurses in this ward, they don't seem to care about patients. Earlier this day they have burned his hand in two places. I just can not believe how many bad things are happening to Christian. Day before he had Amitop cream put on his arm in two places, it numbs the area, before they put in cannula. He had developed a red rush and I was told it is allergic reaction. So next day when he needs more blood tests and they put the cream in the same areas ( they can not use other arm because of the blood clot). I am told by the nurse that it is another cream Emila , because obviously he can not have Amitop.
But turned out it was Amitop and he has burns and they still try to put cannula in his burned arm. Christian is screaming and crying like never before, and they don't care. She is pushing needle in his burned arm, it must hurt so much.
Anyway he is out of the theater safe and everything went well ( apart from cannula in his left arm, that has thrombosis and not allowed to be touched let alone cannula, and burns or bruises ( doctors not sure) all over his body.
We just don't know how much more we can take. And then when I go to ask one of the nurses when Christian will have his injection for the blood clot, she says I have done it.
I just can't believe what I am hearing, I have never done an injection in my life and now they telling me I have done it!!
1st August still at St Georges hope to go home today. Christian has cried a lot, but not because of the operation and the scars, but because of his burned arm, it is hurting so much. As if he doesn't have enough to go through, bloody careless nurses!!!
Every hospital you have doctor coming in a morning to see a patient, but not here. It is nearly 2pm and nobody has been to see my son and he had surgery day before!! This is when I broke down..Adonis is on his way, nobody can believe what is going on in this hospital, Adonis cousin Dina calls one of the managers and makes a complain. Sister of the ward comes in and talks to us and apologises...anyway I am happy to see the doctor at last and she is from RMH and knows us.
Although Christian has a bit temperature she let us go home, have a shower and go back to our local hospital and that is what we do and hope that we will never have to go to this hospital again( probably we will at the end of his treatment to take the line out).
The nurses are not very nice in here and nobody is telling us what is going to happen. As it gets to 6pm we gather that he is not going in after all, and doctor confirms it. Obviously we are upset because he has been starving for so long. We were told he is first on the list for next morning.
30Th of July we are still waiting and only by 5 o clock in afternoon he is in for operation ( last on the list, not first like we were told). The operation will last for 2 hours and he will have his line removed and other put in on the right side.
We are so upset with nurses in this ward, they don't seem to care about patients. Earlier this day they have burned his hand in two places. I just can not believe how many bad things are happening to Christian. Day before he had Amitop cream put on his arm in two places, it numbs the area, before they put in cannula. He had developed a red rush and I was told it is allergic reaction. So next day when he needs more blood tests and they put the cream in the same areas ( they can not use other arm because of the blood clot). I am told by the nurse that it is another cream Emila , because obviously he can not have Amitop.
But turned out it was Amitop and he has burns and they still try to put cannula in his burned arm. Christian is screaming and crying like never before, and they don't care. She is pushing needle in his burned arm, it must hurt so much.
Anyway he is out of the theater safe and everything went well ( apart from cannula in his left arm, that has thrombosis and not allowed to be touched let alone cannula, and burns or bruises ( doctors not sure) all over his body.
We just don't know how much more we can take. And then when I go to ask one of the nurses when Christian will have his injection for the blood clot, she says I have done it.
I just can't believe what I am hearing, I have never done an injection in my life and now they telling me I have done it!!
1st August still at St Georges hope to go home today. Christian has cried a lot, but not because of the operation and the scars, but because of his burned arm, it is hurting so much. As if he doesn't have enough to go through, bloody careless nurses!!!
Every hospital you have doctor coming in a morning to see a patient, but not here. It is nearly 2pm and nobody has been to see my son and he had surgery day before!! This is when I broke down..Adonis is on his way, nobody can believe what is going on in this hospital, Adonis cousin Dina calls one of the managers and makes a complain. Sister of the ward comes in and talks to us and apologises...anyway I am happy to see the doctor at last and she is from RMH and knows us.
Although Christian has a bit temperature she let us go home, have a shower and go back to our local hospital and that is what we do and hope that we will never have to go to this hospital again( probably we will at the end of his treatment to take the line out).
Blood clot July 2008
Christian is not having much luck. We have been in and out of hospital and now he has developed a blood clot and thrombosis in his arm.
On 27Th July just as he was feeling a little bit better, I noticed his left arm a bit swollen and bluish colour. We had to go to our local hospital for blood and platelet transfusion so I mentioned it to the doctor. He measured both arms and told nurses not to use the line for a transfusions, so he had to have cannula in his right arm ( lots of crying and screaming again).
His line has never worked very well, we actually had so much trouble with it. Every time nurses tried to get blood out it would not work or would work in certain positions. Usually they had to put some medicine to thin the blood and we would have to come back after 24 hours. That meant lots of trips to hospital , delayed blood tests and chemo.
On 28TH morning Christian had a scan and it appeared he had a blood clot, so we were told the line has to be removed immediately and for that Christian had to be taken to St Georges Hospital in London by ambulance.
On 27Th July just as he was feeling a little bit better, I noticed his left arm a bit swollen and bluish colour. We had to go to our local hospital for blood and platelet transfusion so I mentioned it to the doctor. He measured both arms and told nurses not to use the line for a transfusions, so he had to have cannula in his right arm ( lots of crying and screaming again).
His line has never worked very well, we actually had so much trouble with it. Every time nurses tried to get blood out it would not work or would work in certain positions. Usually they had to put some medicine to thin the blood and we would have to come back after 24 hours. That meant lots of trips to hospital , delayed blood tests and chemo.
On 28TH morning Christian had a scan and it appeared he had a blood clot, so we were told the line has to be removed immediately and for that Christian had to be taken to St Georges Hospital in London by ambulance.
Saturday, 13 December 2008
Back home July 2008
After 17 days in hospital, last 5 of them in isolation, because Christian developed a line infection, we were allowed to go home.
Oh and also he had contracted virus from me and was very poorly, coughing up the blood, high temperature. He had to be given an antibiotics and after few days was feeling better.
It was heartbreaking to see him from feeling well suddenly go very poorly. We were told by doctors, that he will become worse before he will get better.
Christian didn't look like the same boy, he has had his beautiful curly hear cut off. We were told that in next few days they will start coming off, and I didn't want to see his locks on the pillow.
Christian is feeling not too bad, a bit tired and constipated, but happy to go home.
Oh and also he had contracted virus from me and was very poorly, coughing up the blood, high temperature. He had to be given an antibiotics and after few days was feeling better.
It was heartbreaking to see him from feeling well suddenly go very poorly. We were told by doctors, that he will become worse before he will get better.
Christian didn't look like the same boy, he has had his beautiful curly hear cut off. We were told that in next few days they will start coming off, and I didn't want to see his locks on the pillow.
Christian is feeling not too bad, a bit tired and constipated, but happy to go home.
Christian before and after the haircut ( not very happy about it)
I had mixed feelings about going home happy, but also very scared, I felt he was safe in hospital and didn't know how I will cope at home. I'm sure other parents feel the same way in my situation.
It was Sebastian's birthday in 2 days so we spend the next day preparing for his party. He was having all his class over and we didn't think that canceling it would be fare on Sebastian.On Sebastian's birthday Christian and I stayed upstairs in a bedroom while Sebastian had his party downstairs.
After his party had finished we received a phone call from RMH (Royal Marsden Hospital) that blood tests showed he had 2 line infections so had to go back to our local East Surrey Hospital.
Christian had more antibiotics and we stayed for another 5 days.
During next week he needed blood and platelet transfusions. He became very weak, stoped talking, walking, still very constipated and screaming and wanting me to change his nappy every 15 minutes, because he thinks he has done number 2, but he hasn't and I just have to pretend that I am putting new one on otherwise he will scream. And this goes on during the night too , so no sleep. But my lack of sleep is nothing compare to his suffering.
He would sleep in my bedroom upstairs an watch " The Monster INC" over and over. He also would rub his face until his skin would become sore and then he would rub it even more until it starts to bleed. It looks like a psychological thing, because of how much he has been going through lately.
Photos of Christian in Royal Marsden Hospital
Christian during his blood transfusion
still posing
Christian with cannula in his foot and arm
bruised lip is looking much better
fluids going in to his blood stream
Friday, 12 December 2008
Royal Marsden Hospital
On 19Th June afternoon Christian was taken to RMH in Sutton by ambulance, his dad went with him. I had to go home and pack my suitcase ( men are useless in packing :). We were told we will have to stay for 2-3 weeks there.
I rushed back to hospital just in time for Christians arrival. I can only describe walking in to the ward as walking in to another world unknown and frightening. And it has become our world now. I can describe it as living in this bubble, life outside goes on, but not ours, ours have stoped, our life is all about getting Christian through this and we know that even when it is all over our lives will never be the same.
I was so scared and didn't know if I will be strong enough to deal with seeing other seriously ill children with cancer,seeing Christian go through all the procedures and pain, but when you in that situation, you have no choice, but to deal with it and to be strong for your little boy. And that is what we are doing, being strong and positive and believe that everything will turn out right.
I am very emotional person and would cry seeing ill children on the television and now we were in that situation and it was happening to our child.
Christian has more blood tests and still has fluids going in his blood to prepare him for upcoming chemo therapy.
On 20Th June he has to have his bone marrow to see what kind of Leukaemia he has. I didn't even know there were different types. He has to have general anaesthetic for this procedure, it was very disturbing, but he was fine afterwards. The tests show that he has Acute Lymphoblastic Leukaemia, the most common type in children and most treatable.
I must say it never crossed my mind "why us?", " why my child?" ...it's like saying why mine why not somebody's else child.. , because nobody , no child deserves to have cancer ..
On 21St was the first night I slept . Wake up feeling numb that's how I can describe, completely numb, but with inner strength and realisation that I am strong enough and I will do what ever it takes to pull my son through this..and we are going to beat it.
Dina ( Adonis cousin) and Sebastian came to visit, Adonis has tonsillitis so was told to stay away for couple of days. Sebastian seemed fine , he did not understand what was happening and
thinks Christian has got chicken pox. Bless him:)
Doctor came to explain what was going to happen, what treatment he is about to have, side effects. I have already read numerous times through all the information leaflets, it seemed like a whole new language, very hard to take it all in, but I and Adonis wanted to know as much as possible. It made us feel more in control, more confident about the whole situation.
On 22ND Sebastian and Paris ( my brother in law) came to visit. Adonis still not well. Christian was very excited to see his brother. He is so active, it is a challenge to keep him on the bed ( he still has fluids going in) , I look at him and can not believe he is ill. He does not look ill at all and I was shocked to know that he had only few weeks left if he hadn't been treated.
Christian has to have blood tests every four hours and it is a struggle to find a vein to put cannula in. He has one in his foot now and it was the only one they could find.
It takes me, Adonis, nurse and doctor to put cannula in. He is so strong, he cries so much until he is all sweaty and it makes my heart brake.
On 23 June Adonis came to visit, he is better now. Christian is fine just crying a lot when he has his blood taken. He also had his heart checked and it is OK. He has been a bit bad tempered from steroids his taking, but we don't mind.
On 24Th June Christian is going in to the theatre to have his port inserted. It allows easy access to his blood and also for giving chemo and other medicines. We are happy in a way , because I don't think I can take any more his crying when they trying to find a vein. It should all be easier now. He also is having Lumbar Puncture ( chemo in his spinal fluid).
It all went well, Christian was screaming after he wake up from general anaesthetic, but calmed down after an hour.
I rushed back to hospital just in time for Christians arrival. I can only describe walking in to the ward as walking in to another world unknown and frightening. And it has become our world now. I can describe it as living in this bubble, life outside goes on, but not ours, ours have stoped, our life is all about getting Christian through this and we know that even when it is all over our lives will never be the same.
I was so scared and didn't know if I will be strong enough to deal with seeing other seriously ill children with cancer,seeing Christian go through all the procedures and pain, but when you in that situation, you have no choice, but to deal with it and to be strong for your little boy. And that is what we are doing, being strong and positive and believe that everything will turn out right.
I am very emotional person and would cry seeing ill children on the television and now we were in that situation and it was happening to our child.
Christian has more blood tests and still has fluids going in his blood to prepare him for upcoming chemo therapy.
On 20Th June he has to have his bone marrow to see what kind of Leukaemia he has. I didn't even know there were different types. He has to have general anaesthetic for this procedure, it was very disturbing, but he was fine afterwards. The tests show that he has Acute Lymphoblastic Leukaemia, the most common type in children and most treatable.
I must say it never crossed my mind "why us?", " why my child?" ...it's like saying why mine why not somebody's else child.. , because nobody , no child deserves to have cancer ..
On 21St was the first night I slept . Wake up feeling numb that's how I can describe, completely numb, but with inner strength and realisation that I am strong enough and I will do what ever it takes to pull my son through this..and we are going to beat it.
Dina ( Adonis cousin) and Sebastian came to visit, Adonis has tonsillitis so was told to stay away for couple of days. Sebastian seemed fine , he did not understand what was happening and
thinks Christian has got chicken pox. Bless him:)
Doctor came to explain what was going to happen, what treatment he is about to have, side effects. I have already read numerous times through all the information leaflets, it seemed like a whole new language, very hard to take it all in, but I and Adonis wanted to know as much as possible. It made us feel more in control, more confident about the whole situation.
On 22ND Sebastian and Paris ( my brother in law) came to visit. Adonis still not well. Christian was very excited to see his brother. He is so active, it is a challenge to keep him on the bed ( he still has fluids going in) , I look at him and can not believe he is ill. He does not look ill at all and I was shocked to know that he had only few weeks left if he hadn't been treated.
Christian has to have blood tests every four hours and it is a struggle to find a vein to put cannula in. He has one in his foot now and it was the only one they could find.
It takes me, Adonis, nurse and doctor to put cannula in. He is so strong, he cries so much until he is all sweaty and it makes my heart brake.
On 23 June Adonis came to visit, he is better now. Christian is fine just crying a lot when he has his blood taken. He also had his heart checked and it is OK. He has been a bit bad tempered from steroids his taking, but we don't mind.
On 24Th June Christian is going in to the theatre to have his port inserted. It allows easy access to his blood and also for giving chemo and other medicines. We are happy in a way , because I don't think I can take any more his crying when they trying to find a vein. It should all be easier now. He also is having Lumbar Puncture ( chemo in his spinal fluid).
It all went well, Christian was screaming after he wake up from general anaesthetic, but calmed down after an hour.
Christian's diagnosis
Hi and welcome to our blog. We ( Christian's parents Ilze and Adonis) have decided to write about Christian's treatment for Leukaemia so we can keep the family and friends updated on his progress. Christian was diagnosed with leukaemia on 19Th June 2008 age 2 and 3 month.
His diagnosis came as a massive shock to us, because he has not been unwell beforehand.
On 18Th June I ( his mum) took him to EA at Hayward's Heath Princes Royal Hospital. The reason I took him there was because I noticed some unusual bruising on his legs ( little bleeds under his skin) and also he has fell and hurt his lip an hour earlier and it got very swollen and black in colour. I knew that something is not right ( as we mothers usually do) and asked my brother in law (Adonis was at work) to take as to EA.
Doctor examined him and looked a bit concerned. At that point I also noticed bruises all over his body and he also had a blood in his nappy.
We were told to go to Brighton Hospital and do some blood tests. At this point I did not no what was wrong with him, I was just told that something is not wright with his blood , because it is not clotting properly.
I called Adonis and he rushed straight to Brighton from his work. Christian had cannula inserted in his arm and bloods taken and we were told to wait for the results.
Around midnight we were called in to a room and doctor kept asking about any blood disorders history in our families. And than he said that it could be 50/50 chance that Christian had Leukaemia. I can not describe in words the shock, devastation...we could not believe what we were hearing...it felt like our world just fell apart...it was very hard to take in...it felt like a bad dream...
I had to stay in Hospital and Christian was put on the system to get some fluids in his blood. Adonis had to go home, because Sebastian was so tired and did not understand what was happening. He just wanted to go to his bed.
It was the longest night of our lives and we cried and prayed that he didn't have Leukaemia, but deep down we knew...
After more blood tests it was confirmed and now we had to go to Royal Marsden Hospital in Sutton to do more tests to see which type of Leukaemia he had and to start treatment.
Subscribe to:
Posts (Atom)
