Well a couple of glasses of wine in I can perhaps broach a topic that I dare not broach with most people most of the time!!!
I do not want my gorgeous Harry to die, I really, really do not, but sometimes I think of the enormity of the process to try and kill his neuroblastoma and I think about the impact on our family and what if we do not survive to be a family unit at the end of this? My little Callum he has the right to access to both his parents too. But currently and for the current future we are split trying to meet the needs of both our boys.
Also if all the treatment is in vain, yes we do go there, we have both had thoughts of the inevitable, well I think most parents do. To let Harry die now, well I think social services would intervene and a best interest decision made and currently there is the option of treatment, although survival isn't the best odds compared to other cancers, but I think a best interest decision would say yes to treatment and that is the band wagon we are on.
So yes Harry is having good days, but next week he is expected to dip again. this rollercoaster is going to be with us for months. Then I read on an internet site that if Harry survives then he has a 66% chance of having problems in the future in 20 -30 years time. though by the time Hary is 20 - 30 I am sure mediacl science will have advanced yet again. Hearing loss a typical side effect then I read so is a learning disability. My beautiful, bright Harry who prior to this disease, I believe had the capabilities to do anything in life, well the consequences to treatment are not worth giving much thought to. However, they are there.
Medical science is fantastic and without it Harry would not have a hope in hell.
However, all medical science has its possible side effects. Also, what if we endure the next year of splitting ourselves in two for the cancer to come back, or as I read can come back in the form of a different cancer. well i have no idea how we would cope.
My mother met someone on the ward today whom said they were saving up for treatment in America and told her to start saving!!!! I am not sure, I do believe as said before that anything happening in the world that is a trial or in any way legitimate we would have access to.
Oh and what price would you put on your child's life? A funny statement, but what if you remortgaged and it did not work and you are left with a huge debt and trying to keep the rest of your family goimg. A dark place to go I know, but we will see what happens.
I did meet someone the other day, whom 18 month old had spent the last 8 months almost solely in hospital. It seemed the situation had been a huge strain as expected on the rest of the family.
Though to let Harry die would be a very painful process without trying the treatments on offer. It does seem that that he has improved following his initial chemo treatment.
The place we were in a week ago, was quite dark, cos although at the time none of us actually said to the other how we felt. On recent discussions we were all of the opinion that Harry was very much slipping through our fingers. Thus the chemo treatment started and with that, he has had some good days this week. He has smiled, played and been able to enjoy life a bit. He has noticed his scar on his tummy and the questions then tumble out as to what it is, how thay opened him up etc.
So, we are grateful to medical science for keeping Harry going, but at the same time scared of the consequences of the treatment and where will we be this time next year?
As said hope will be the word for 2012 and hopefully Harry will be at the Whartons schools with his friends, playing and learning as any old 5 year old should be.
Saturday, 26 November 2011
26.11.11
Well Harry has had a happy day. He really enjoyed having El, Jenny, Michael and James to visit this am. He enjoyed still being isolated as he had the whole bay to play on the cars and even had a petrol station in the room. He had both El and Jenny chasing him with his trolley of feed and fluids. He tires easily though and enjoyed doing painting and colouring with his friends, before retiring to his bed to watch a postman pat DVD. His Granny and Grandad came this afternoon and played with him whilst mummy and daddy went out for lunch. He loved the new game sent in by Terri - thank you!
We found a quiet pub to have lunch so we could catch up, the first time in what seems like an age. We talked lots about Harry, about the road ahead, the need to cancel our centre parcs holiday, but have no idea when would be possible be an ideal time to rearrange the dates to. For those that know us we always like to know that there is some kind of break on the horizon, where we get together as a family and have quality time together. This has always been important to us and with Paul's busy work schedule and me working too, it has always set aside time for the 4 of us to do something, without cars, DIY etc getting in the way. Well I think the best idea is to get past Christmas and Harry's 80 day scan and book last minute in a window of opportunity and hope Paul can get the time off work.
Hope I think is going to be the word for 2012.
It was good to go for a meal, but having craved over the last months (even before Harry was poorly) time out the thing I think we both wanted to do was to have a saturday back, where we would go to High Royds Social Club with the boys and friends, then retire to watch the X Factor with a glass of wine. Probably because that would be normality. The things we all do and take for granted.
We did go for a walk and was in the thick of Christmas shoppers and felt like we were standing still with everyone else buzzing around us with a purpose. That's because everyone was busy into Christmas and we are not sure of what to plan. Harry should be at home and fingers crossed he will be, but we have to be aware that at the drop of a hat he could get an infection and be back in hospital. Therefore I think Christmas will be low key and easily changeable. As it does not really matter which day it is celebrated on and Callum will adjust to whatever!!! The joys of being 2!
I think I seem to feel like a led balloon alot and despite not really physically doing much, the emotional rollercoaster that we are on is very, very draining.
I am so pleased that Harry has had all his initial tests though and we can concentrate on his chemo treatment and trying to get the level of feeds right for him as he does still keep being sick. He is also losing weight. I do though feel in incredibly good hands with the team at the hospital and trust them implicitly with advising on the right course of action for Harry.
Harry had the results of his poo specimen today and it confirmed that he did not have a bug or virus, which is good. The downside is that immediately another baby was moved into his bay. He was sad about this as he did not want to share his space, as there would not be room to play. But on telling him that as he was not isolated anymore he could go on his car down the corridor he brightened up, but daddy's face dropped, knowing he would be in tow with his trolley!!!! That is as mummy was getting to go home!
Callum has had a lovely day with friends, Sarah, Richard and their liitle girl Olivia. Even Uncle Conrad popped over to say hello. Callum was full of it when I came home and his new haircut looks fab on him! a very smart little boy. Callum enjoyed reading a new book sent by friends Laura and Jim I think, about a bear and a bear star just before bed. I don't want to speak too soon as in usually these cases trouble starts, but Callum seems really settled on a night and therefore any changes to a bed will be halted as long as possible! The thought of Callum getting out of bed by himself does not bear thinking about at the mo!!!!!
We found a quiet pub to have lunch so we could catch up, the first time in what seems like an age. We talked lots about Harry, about the road ahead, the need to cancel our centre parcs holiday, but have no idea when would be possible be an ideal time to rearrange the dates to. For those that know us we always like to know that there is some kind of break on the horizon, where we get together as a family and have quality time together. This has always been important to us and with Paul's busy work schedule and me working too, it has always set aside time for the 4 of us to do something, without cars, DIY etc getting in the way. Well I think the best idea is to get past Christmas and Harry's 80 day scan and book last minute in a window of opportunity and hope Paul can get the time off work.
Hope I think is going to be the word for 2012.
It was good to go for a meal, but having craved over the last months (even before Harry was poorly) time out the thing I think we both wanted to do was to have a saturday back, where we would go to High Royds Social Club with the boys and friends, then retire to watch the X Factor with a glass of wine. Probably because that would be normality. The things we all do and take for granted.
We did go for a walk and was in the thick of Christmas shoppers and felt like we were standing still with everyone else buzzing around us with a purpose. That's because everyone was busy into Christmas and we are not sure of what to plan. Harry should be at home and fingers crossed he will be, but we have to be aware that at the drop of a hat he could get an infection and be back in hospital. Therefore I think Christmas will be low key and easily changeable. As it does not really matter which day it is celebrated on and Callum will adjust to whatever!!! The joys of being 2!
I think I seem to feel like a led balloon alot and despite not really physically doing much, the emotional rollercoaster that we are on is very, very draining.
I am so pleased that Harry has had all his initial tests though and we can concentrate on his chemo treatment and trying to get the level of feeds right for him as he does still keep being sick. He is also losing weight. I do though feel in incredibly good hands with the team at the hospital and trust them implicitly with advising on the right course of action for Harry.
Harry had the results of his poo specimen today and it confirmed that he did not have a bug or virus, which is good. The downside is that immediately another baby was moved into his bay. He was sad about this as he did not want to share his space, as there would not be room to play. But on telling him that as he was not isolated anymore he could go on his car down the corridor he brightened up, but daddy's face dropped, knowing he would be in tow with his trolley!!!! That is as mummy was getting to go home!
Callum has had a lovely day with friends, Sarah, Richard and their liitle girl Olivia. Even Uncle Conrad popped over to say hello. Callum was full of it when I came home and his new haircut looks fab on him! a very smart little boy. Callum enjoyed reading a new book sent by friends Laura and Jim I think, about a bear and a bear star just before bed. I don't want to speak too soon as in usually these cases trouble starts, but Callum seems really settled on a night and therefore any changes to a bed will be halted as long as possible! The thought of Callum getting out of bed by himself does not bear thinking about at the mo!!!!!
Friday, 25 November 2011
25.11.11
Well Harry has had a good day. He has been driving his bike in his isolated bay and having me chase after him again with his trolley of drips. He's done painting this afternoon and then zonked around tea time. He has been sick again, but from talking to the consultant this is expected for the number of days post chemo treatment he is. He keeps having antisickness drugs to help him. No loose poos though.
He is off the morphine drip, which is good and on codine pain relief. Known for causing constipation, so I am sure we will end up with him being bunged up again before long.
We have spoken to the consultant today and they have all the test results through. The scan shows that Harry has neuroblastoma in all his bones apart from his skull as well as the main Tumour in his tummy thought to be attached to his adrenal gland. So one area is saved!!! That part is good as neuroblastoma could make the area round his eyes darken and make his eyes bulge, so at least even if he not very mobile he shouldn't look too different facially. Not to sound vain, but the poor chap has enough to contend with!!! He will loose his hair in a couple of weeks too. I didn't think I would be bothered about this prospect as he is not a girl with flowing locks, keen to have platted, but it will alter his identity.
In a way the cold weather that is supposed to come on being winter will mean woolly hats will be clad by most when outside.
The consultant is positive and he has a long journey ahead of him as we do too. Harry will have his poorly days, but we have to try and make the most of the good days.
As I may have said previously, no food is provided for parents staying even though we provide a good deal of care for our children. I found my bread mouldy this am and so asked Harry to order me some toast with his breakfast. He followed my request and ordered toast but added that it was for mummy! The lady making breakfast did good though and gave me some toast drenched in butter - Yum!
Tomorrow if all goes to plan Paul and I should have lunch out, not in the hospital and not a ready meal!!! Can't wait. A little normality.
Harry has his second lot of chemo on Mon and Tues next week. If he is well then he can come home Wed for a few days. I am looking forward to this but as expected also worried about how we will manage without the support of the team here. We will have a Macmillan nurse visiting as Harry has to have an injection I think it is 6 out of the 10 day cycle and I don't want to give this as he screams when it is done. We do have to learn how to manage the Ng feed system, so that will be enough to take on. Then also to monitor Harry's temperature as if it hits 38.5 we have to come straight back to the ward so he can have IV antibiotics. I also have to monitor if I think he is particularly lethergic or has a nose bleed as that could mean his blood count is low, so could mean he has to come back to the clinic for a blood transfusion. So lots to think about as well as not forgetting Callum. It will be nice to come home as be a family. I know Harry will have to get used to sharing us with Callum as he has had so much attention and one of us sleeping next to him. But it can only be a good thing not to be coming backwards and forwards to LGI even for a few days.
He is off the morphine drip, which is good and on codine pain relief. Known for causing constipation, so I am sure we will end up with him being bunged up again before long.
We have spoken to the consultant today and they have all the test results through. The scan shows that Harry has neuroblastoma in all his bones apart from his skull as well as the main Tumour in his tummy thought to be attached to his adrenal gland. So one area is saved!!! That part is good as neuroblastoma could make the area round his eyes darken and make his eyes bulge, so at least even if he not very mobile he shouldn't look too different facially. Not to sound vain, but the poor chap has enough to contend with!!! He will loose his hair in a couple of weeks too. I didn't think I would be bothered about this prospect as he is not a girl with flowing locks, keen to have platted, but it will alter his identity.
In a way the cold weather that is supposed to come on being winter will mean woolly hats will be clad by most when outside.
The consultant is positive and he has a long journey ahead of him as we do too. Harry will have his poorly days, but we have to try and make the most of the good days.
As I may have said previously, no food is provided for parents staying even though we provide a good deal of care for our children. I found my bread mouldy this am and so asked Harry to order me some toast with his breakfast. He followed my request and ordered toast but added that it was for mummy! The lady making breakfast did good though and gave me some toast drenched in butter - Yum!
Tomorrow if all goes to plan Paul and I should have lunch out, not in the hospital and not a ready meal!!! Can't wait. A little normality.
Harry has his second lot of chemo on Mon and Tues next week. If he is well then he can come home Wed for a few days. I am looking forward to this but as expected also worried about how we will manage without the support of the team here. We will have a Macmillan nurse visiting as Harry has to have an injection I think it is 6 out of the 10 day cycle and I don't want to give this as he screams when it is done. We do have to learn how to manage the Ng feed system, so that will be enough to take on. Then also to monitor Harry's temperature as if it hits 38.5 we have to come straight back to the ward so he can have IV antibiotics. I also have to monitor if I think he is particularly lethergic or has a nose bleed as that could mean his blood count is low, so could mean he has to come back to the clinic for a blood transfusion. So lots to think about as well as not forgetting Callum. It will be nice to come home as be a family. I know Harry will have to get used to sharing us with Callum as he has had so much attention and one of us sleeping next to him. But it can only be a good thing not to be coming backwards and forwards to LGI even for a few days.
Thursday, 24 November 2011
24.11.11
Well we were finally moved to our own bay at 11.15pm last night. In fact back to the first bed we were in when we arrived on this ward on 13.11.11. The night was not as quiet as anticipated due to Harry doing more poos through the night and me the new nurse Sarah had to come to his rescue!! Well at least we were not disturbing others.
I have to say that having moved beds a couple of times already I have found myself entering the wrong room and then dawning on me that it is the wrong child there! I am only emotionally all over the place, let alone all those people I deal with in hospital in relation to my job, whom have dementia and are moved from different bays and wards several times during their stays. I really understand now how they get disorientated easily!!!
I have also a recognition on a higher level through experience, just how many different people do get involved in one persons care. The nurses, the doctors, the student doctor, more nurses, the dietician, the social worker, then the chaplain, all by 11am and all I wanted this am was to give Harry a bath. It was lunch time by the time he was a clean boy again. Then he was that tired from being prodded, talked to and bathed he fell asleep before eating his lunch!
The one thing I can so highly commend about the oncology ward though is the cleanliness. The floor is cleaner than my plates at home, I am sure. When we left the bay we were in last night a team of cleaners came to wipe down every nook and crany and even the curtains around the bay were taken down to be laundered. The fact that we were isolated as soon as strategically possible was an excellant protacol. I can't say too much as I am not sure who is reading this, but I feel if this level of detail to cleaning was only able to be delivered to every single ward in the country for what ever age group or diagnosis then I am sure infection control would be amazingly controlled!!!!
Harry has been very tired today and not interested in anything apart from watching the TV. He has also been sick a couple of times, which could be side affects to his chemo, not tolerating his feed through his NG tube or just a bug. More likley the first two though.
The down side to being isolated is that Harry is not allowed out of his room, apart from to have a bath. Therefore discussions with other parents has been minimal. Harry has been very clingy to me and I was only able to escape for 40 mins when he fell asleep and Grandma and Grandad were there. I had a look around the German market, which was a lovely diversion if only brief.
Since Callum has been in nursery the last 2 days and chicken pox is going round Paul has stayed at home with Callum this afternoon, for fear he may be in the early stages of chicken pox and spread the virus on the ward, which can be a problem. Chemo wipes out previous built up immunities and so if a child on chemo comes into contact with someone with chicken pox they need an injection to boost their immunity. Just another added complication as Callum has not had chicken pox yet, in some ways if he gets it whilst Harry is in hospital it will save separating them at a later point when Harry is home. The conundrums!
Thanks though to El who took Callum to have his hair cut today, I haven't seen the result but an amazing job! It usually takes 2 of us, one to hold his hands from hitting you and one to hold his head still! Thanks for looking after him too on your child free morning!
The other thing I was going to comment on today was the services, the people now interested cos Harry has cancer. When Harry had a 'virus' nobody wanted to know me or offer help so easily. The virus if it had been, could have gone on for weeks and I am sure I would have been told, he'll get better see how he is in a couple of weeks. I rang the Health visiting team when Harry had the 'virus' trying to find a source of support. I was told to get his nursery involved in terms of addressing my issues around him being withdrawn and generally told or it seemed to me to see how he goes. Now it seems a different story and the Health Visiting Team are getting in contact with me and seem to be there to offer support where they can. Resources are so limited that I am aware they are saved and targeted at specifics of which cancer support is one. But there are many, many people whom fall between diagnosis and are following that winding path of not knowing quite how to get the services and support needed. I am so grateful though that we are within this massive team of support on the oncology ward and the wider charity groups and support networks as we will need it all.
Tomorrow we should get the rest of Harry's test results back and I pray that they are as expected and no real surprises as to where the cancer has spread to.
I have to say that having moved beds a couple of times already I have found myself entering the wrong room and then dawning on me that it is the wrong child there! I am only emotionally all over the place, let alone all those people I deal with in hospital in relation to my job, whom have dementia and are moved from different bays and wards several times during their stays. I really understand now how they get disorientated easily!!!
I have also a recognition on a higher level through experience, just how many different people do get involved in one persons care. The nurses, the doctors, the student doctor, more nurses, the dietician, the social worker, then the chaplain, all by 11am and all I wanted this am was to give Harry a bath. It was lunch time by the time he was a clean boy again. Then he was that tired from being prodded, talked to and bathed he fell asleep before eating his lunch!
The one thing I can so highly commend about the oncology ward though is the cleanliness. The floor is cleaner than my plates at home, I am sure. When we left the bay we were in last night a team of cleaners came to wipe down every nook and crany and even the curtains around the bay were taken down to be laundered. The fact that we were isolated as soon as strategically possible was an excellant protacol. I can't say too much as I am not sure who is reading this, but I feel if this level of detail to cleaning was only able to be delivered to every single ward in the country for what ever age group or diagnosis then I am sure infection control would be amazingly controlled!!!!
Harry has been very tired today and not interested in anything apart from watching the TV. He has also been sick a couple of times, which could be side affects to his chemo, not tolerating his feed through his NG tube or just a bug. More likley the first two though.
The down side to being isolated is that Harry is not allowed out of his room, apart from to have a bath. Therefore discussions with other parents has been minimal. Harry has been very clingy to me and I was only able to escape for 40 mins when he fell asleep and Grandma and Grandad were there. I had a look around the German market, which was a lovely diversion if only brief.
Since Callum has been in nursery the last 2 days and chicken pox is going round Paul has stayed at home with Callum this afternoon, for fear he may be in the early stages of chicken pox and spread the virus on the ward, which can be a problem. Chemo wipes out previous built up immunities and so if a child on chemo comes into contact with someone with chicken pox they need an injection to boost their immunity. Just another added complication as Callum has not had chicken pox yet, in some ways if he gets it whilst Harry is in hospital it will save separating them at a later point when Harry is home. The conundrums!
Thanks though to El who took Callum to have his hair cut today, I haven't seen the result but an amazing job! It usually takes 2 of us, one to hold his hands from hitting you and one to hold his head still! Thanks for looking after him too on your child free morning!
The other thing I was going to comment on today was the services, the people now interested cos Harry has cancer. When Harry had a 'virus' nobody wanted to know me or offer help so easily. The virus if it had been, could have gone on for weeks and I am sure I would have been told, he'll get better see how he is in a couple of weeks. I rang the Health visiting team when Harry had the 'virus' trying to find a source of support. I was told to get his nursery involved in terms of addressing my issues around him being withdrawn and generally told or it seemed to me to see how he goes. Now it seems a different story and the Health Visiting Team are getting in contact with me and seem to be there to offer support where they can. Resources are so limited that I am aware they are saved and targeted at specifics of which cancer support is one. But there are many, many people whom fall between diagnosis and are following that winding path of not knowing quite how to get the services and support needed. I am so grateful though that we are within this massive team of support on the oncology ward and the wider charity groups and support networks as we will need it all.
Tomorrow we should get the rest of Harry's test results back and I pray that they are as expected and no real surprises as to where the cancer has spread to.
Wednesday, 23 November 2011
23.11.11
Well home last night. Was lovely to be in my own home, own bed, own everything.
Callum woke at 8.30am which was fantastic, not sure if it was cos he was exhausted from nursery yesterday or the Piriton given to help the last red bits of his rash fade!!! Hey ho who cares, I appreciated the sleep.
Callum was in a fab mood this morning. We went to Wacky and met friends up with their little ones. Callum actually went off and played, he seems to be turning a corner socially perhaps that's because he has just turned 2! It was lovely to catch up with friends and have a chat and be out of the stuffy hospital ward. I had exchanged places with Paul who was on night duty and in charge of Harry's final scan for a few weeks. Yippee. Although results not through and we pretty much know that the results will show that Harry has neuroblastoma in several other places, the relief of the tests coming to an end is great. Harry has started to flinch when anyone unfamiliar comes to his bed for fear of being prodded or poked, or taken somewhere mysterious where he is put to sleep! Hopefully if he remians stable he can come home for a couple of days next week.
He has needed a blood transfusion today as his blood count is low. He has been busy painting today, but has become very lethargic as the afternoon has gone on. This is due to his low blood count. Low blood count is typical of his treatment plan and he will likely need many blood transfusions or platelet transfusions over the coming weeks. Which also brings me to the topic of giving blood or platelets. I have never done this enormously good deed, but has certainly made me think how fantastic it is that people do give blood. Apparently blood pools historically dip this time of year, prob cos people out chrimbo shopping amongst other reasons for people not to give up time to give blood, but without this blood Harry would be in serious trouble.
Harry has loose stools this eve, most probably due to the enormous amount of movecol and lactulous he has endured over previous days to get his bowels moving. Due to protocol his poos have to be tested in case there is an infection and these tests take 48 hours to get the results through. The silver lining to this predicament is they have to isolate us. Yey, that means a room to ourselves - peace and quiet and if results take 2 days to come through then that could mean a quiet night tomorrow too!!!!! Think I may do duty here tomorrow night too!!!!
Well will sign off for now, as have to gather belongings, whilst the staff figure who to move around to create us a bay or room to ourselves!
Callum woke at 8.30am which was fantastic, not sure if it was cos he was exhausted from nursery yesterday or the Piriton given to help the last red bits of his rash fade!!! Hey ho who cares, I appreciated the sleep.
Callum was in a fab mood this morning. We went to Wacky and met friends up with their little ones. Callum actually went off and played, he seems to be turning a corner socially perhaps that's because he has just turned 2! It was lovely to catch up with friends and have a chat and be out of the stuffy hospital ward. I had exchanged places with Paul who was on night duty and in charge of Harry's final scan for a few weeks. Yippee. Although results not through and we pretty much know that the results will show that Harry has neuroblastoma in several other places, the relief of the tests coming to an end is great. Harry has started to flinch when anyone unfamiliar comes to his bed for fear of being prodded or poked, or taken somewhere mysterious where he is put to sleep! Hopefully if he remians stable he can come home for a couple of days next week.
He has needed a blood transfusion today as his blood count is low. He has been busy painting today, but has become very lethargic as the afternoon has gone on. This is due to his low blood count. Low blood count is typical of his treatment plan and he will likely need many blood transfusions or platelet transfusions over the coming weeks. Which also brings me to the topic of giving blood or platelets. I have never done this enormously good deed, but has certainly made me think how fantastic it is that people do give blood. Apparently blood pools historically dip this time of year, prob cos people out chrimbo shopping amongst other reasons for people not to give up time to give blood, but without this blood Harry would be in serious trouble.
Harry has loose stools this eve, most probably due to the enormous amount of movecol and lactulous he has endured over previous days to get his bowels moving. Due to protocol his poos have to be tested in case there is an infection and these tests take 48 hours to get the results through. The silver lining to this predicament is they have to isolate us. Yey, that means a room to ourselves - peace and quiet and if results take 2 days to come through then that could mean a quiet night tomorrow too!!!!! Think I may do duty here tomorrow night too!!!!
Well will sign off for now, as have to gather belongings, whilst the staff figure who to move around to create us a bay or room to ourselves!
Tuesday, 22 November 2011
22.11.11 events
Well today started with Harry doing a poo! Yippee, he has been so constipated. However, this was not an easy task. the ward is so short staffed. he wanted to use the toilet. Good I thought, that will get him up and walking. Well, all the pipes coming out of him and the trolley they hang on had been underestimated by me! I got him up and walking, but how he or I did not trip over the wires I am not sure. having arrived at the toilet in one piece, I had to get a cardboard bowl for Harry to poo in, so they can be examined, so propping Harry up, I go and get this. Anyhow a successful trip!
Harry also decided to go on the little car again round the corridors, with me chasing him with his trolley of drips! He tired easily though and retired to bed with the notion of finishing his chocoloate buttons he started 2 days ago only to be told no! he was not able to have food until the scan 4 hours later was complete. As has happened on the several occasions this last week when denied food he starts an obsession and will chant to anyone who will listen that he wants chocolate buttons! The sedation had not entirely worked when first put under the scanner this pm and the chant for chocolate buttons continued as the capsule tightened around him. A tear trickled down my face, but when I truly thought about it would a 4 year old feel claustraphobic - i am not so sure they would have such feelings, plus his chants were of a dreamy type, then he fell well and truly asleep so that was a relief.
Anyhow with scan completed he had his chocolate bottons, plus half a bar of chocolate and half his tea. The most eaten in days. With a smiley Harry I was able to leave him confident that he was progressing, to come home and spend some time with my lovely beautiful Callum, whom is learning new words by the day. Stop it was the phrase of the night!!!!
Harry also decided to go on the little car again round the corridors, with me chasing him with his trolley of drips! He tired easily though and retired to bed with the notion of finishing his chocoloate buttons he started 2 days ago only to be told no! he was not able to have food until the scan 4 hours later was complete. As has happened on the several occasions this last week when denied food he starts an obsession and will chant to anyone who will listen that he wants chocolate buttons! The sedation had not entirely worked when first put under the scanner this pm and the chant for chocolate buttons continued as the capsule tightened around him. A tear trickled down my face, but when I truly thought about it would a 4 year old feel claustraphobic - i am not so sure they would have such feelings, plus his chants were of a dreamy type, then he fell well and truly asleep so that was a relief.
Anyhow with scan completed he had his chocolate bottons, plus half a bar of chocolate and half his tea. The most eaten in days. With a smiley Harry I was able to leave him confident that he was progressing, to come home and spend some time with my lovely beautiful Callum, whom is learning new words by the day. Stop it was the phrase of the night!!!!
Trials and tribulations
I shed a lot of tears in the couple of weeks prior to Harry being diagnosed, then seem to hold it together through the initial round of meetings with consultants. Whether i went into work mode, as I do attend a lot of case conferences of others I don't know, but it was Paul's turn to shed the majority of tears in disbelief. I was focusing on keeping Harry happy and interested in things. Harry's grandparents - the Buckley side brought in some little lego they had been saving for him. Harry loved this and put together several of the little vehicles brought. However on 13.12.11 when my back was turned for a minute a little voice said that I have a piece of lego stuck up my nose! Well I thought Harry was joking, but sure in enough on closer inspection he had a small piece of orange lego stuck up his nose! Well the nurses thought I was joking when told!!! We did have a surgeon on stand by, but luckily with the help of his dad some hours later, he blew the piece of lego out! His friend Daniel who visited him that day, went to school thinking Harry was in hospital because he had a pieve of lego stuck up his nose. If only life had been that simple!
On admission to LGi we were on ward 51 in a luxurious single room, with ensuite and a big TV screen on the wall. Harry was keen for me to text daddy and tell him the TV was bigger than ours at home, as he knows daddy would love a bigger TV! The ensuite was a godsend, as Harry was not able to eat anything for over 24 hours on admission and screamed when I left him, I would sneak into the ensuite to eat and drink!
However the 4 star room was not to last. On Sunday 13.11.11 we were moved to the oncology ward where we were given a bay, to ourselves, but only for one night. Then it filled up and had a baby and a 2 year old. Going to sleep hearing a baby and a 2 year old vomit due to the side effects, was not easy, but the bed was far more comfortable than that on the previous ward. The sounds you get accustomed to are bizarre and really Harry ended up making the most noise over the next few days, as his pain following his biopsy was immense.
Well I had not anticipated on communal living again quite yet, perhaps when old and in residential care, but hey! The shared fridge, labeling everything etc. When I arrived I did not have any milk, tea or coffe, so the nicking of others stuff was very covert! I soon met someone else not prepared, with a recently diagnosed son, so willingly offered my goods!
Microwave meals here we come!
The showers are very badly designed with little slope into the drain and so I caused havoc on day 1 of being on the ward, whereby I flooded the corridor. Oh well, the glances of those clearing it up did not bother me, I had worse issues to face!
On tues 15th Nov, they had the results of a urine test which definatley diagnosed the tumour to be neuroblastoma. The plus side of this was that a drip could be removed from Harry as this was not applicable for neuroblastoma. Therefore Harry had his freedom, if only for one evening and made me have a huge smile as he negotiated the corridor of the ward on a little car, if only for 20 mins.
The next day he had his biopsy and ended up gaining nearly 3 kilos in weight in fluid. He was not in a good way Fri and his chemo started. His morphine was increased and NG tube fitted whilst I was not there. I could not face this as he would not be sedated. His dad was there, although intially said when told by Kate the nurse this would happen that they should wait till my return. She firmly said I had requested not to be there.
I went into Leeds centre on a mission to buy a new phone, as my pay and go phone was not up to the job of all the texts, phone calls needed. Bearing in mind 6 months ago I gave up on the idea of a new phone as the tarrifs, phones etc is mind blowing, I decided to buy one. My charger being dodgy for existing phone spurred me on.
However, having spent the best part of the week in hospital I was very institutionalised and was so not aware of it being Sat, Christmas, lights on in leeds etc and lost the plot! I so have such a new level of understanding of all those patients I am involved with in hospital whom have stays of several days/weeks then go home. It is overwhelming leaving the bubble that is hospital!
Anyhow I went to the O2 shop and burst into tears when asked why I needed an upgrade. However, when told I could not get the latest version of i phone on the particular tarrif I wanted I still had my wits to leave and search elsewhere! Having gone into my third shop and in the main street of Leeds with the coca cola truck, fake snow and lights I was beginning to lose my senses to emotions of sadness that Harry could not see all this Christmas festivities and when would he be able to. I needed a coffee shop but could not find the one I thought was where it used to be. The hussle and bustle of people was too great and I sought out a police car. They were probably rolling their sleaves up thinking here is a sect 36 on our hands, but luckily Dave Hirst new my husband and our situation. Having shed a few tears i sat in the back of the police car and managed to ring my husband, discuss the potential phone deal and get myself together enough to make the purchase. Without that moment I think I would have been a heap somewhere!
Well I had left the hospital promising Harry I would return with a new phone that had a talking cat on it. so that was the mission.
Mission completed and a smiling Harry on return with talking cat, the mission was worth it!
On admission to LGi we were on ward 51 in a luxurious single room, with ensuite and a big TV screen on the wall. Harry was keen for me to text daddy and tell him the TV was bigger than ours at home, as he knows daddy would love a bigger TV! The ensuite was a godsend, as Harry was not able to eat anything for over 24 hours on admission and screamed when I left him, I would sneak into the ensuite to eat and drink!
However the 4 star room was not to last. On Sunday 13.11.11 we were moved to the oncology ward where we were given a bay, to ourselves, but only for one night. Then it filled up and had a baby and a 2 year old. Going to sleep hearing a baby and a 2 year old vomit due to the side effects, was not easy, but the bed was far more comfortable than that on the previous ward. The sounds you get accustomed to are bizarre and really Harry ended up making the most noise over the next few days, as his pain following his biopsy was immense.
Well I had not anticipated on communal living again quite yet, perhaps when old and in residential care, but hey! The shared fridge, labeling everything etc. When I arrived I did not have any milk, tea or coffe, so the nicking of others stuff was very covert! I soon met someone else not prepared, with a recently diagnosed son, so willingly offered my goods!
Microwave meals here we come!
The showers are very badly designed with little slope into the drain and so I caused havoc on day 1 of being on the ward, whereby I flooded the corridor. Oh well, the glances of those clearing it up did not bother me, I had worse issues to face!
On tues 15th Nov, they had the results of a urine test which definatley diagnosed the tumour to be neuroblastoma. The plus side of this was that a drip could be removed from Harry as this was not applicable for neuroblastoma. Therefore Harry had his freedom, if only for one evening and made me have a huge smile as he negotiated the corridor of the ward on a little car, if only for 20 mins.
The next day he had his biopsy and ended up gaining nearly 3 kilos in weight in fluid. He was not in a good way Fri and his chemo started. His morphine was increased and NG tube fitted whilst I was not there. I could not face this as he would not be sedated. His dad was there, although intially said when told by Kate the nurse this would happen that they should wait till my return. She firmly said I had requested not to be there.
I went into Leeds centre on a mission to buy a new phone, as my pay and go phone was not up to the job of all the texts, phone calls needed. Bearing in mind 6 months ago I gave up on the idea of a new phone as the tarrifs, phones etc is mind blowing, I decided to buy one. My charger being dodgy for existing phone spurred me on.
However, having spent the best part of the week in hospital I was very institutionalised and was so not aware of it being Sat, Christmas, lights on in leeds etc and lost the plot! I so have such a new level of understanding of all those patients I am involved with in hospital whom have stays of several days/weeks then go home. It is overwhelming leaving the bubble that is hospital!
Anyhow I went to the O2 shop and burst into tears when asked why I needed an upgrade. However, when told I could not get the latest version of i phone on the particular tarrif I wanted I still had my wits to leave and search elsewhere! Having gone into my third shop and in the main street of Leeds with the coca cola truck, fake snow and lights I was beginning to lose my senses to emotions of sadness that Harry could not see all this Christmas festivities and when would he be able to. I needed a coffee shop but could not find the one I thought was where it used to be. The hussle and bustle of people was too great and I sought out a police car. They were probably rolling their sleaves up thinking here is a sect 36 on our hands, but luckily Dave Hirst new my husband and our situation. Having shed a few tears i sat in the back of the police car and managed to ring my husband, discuss the potential phone deal and get myself together enough to make the purchase. Without that moment I think I would have been a heap somewhere!
Well I had left the hospital promising Harry I would return with a new phone that had a talking cat on it. so that was the mission.
Mission completed and a smiling Harry on return with talking cat, the mission was worth it!
Subscribe to:
Posts (Atom)