Well we had been in hospital for 10 nights now and the hospital were thinking about us being able to go home. At Southampton hospital we had been given a 'blue book'. These are similar to the red books children have when they are small recording weight, height etc. This one was A4 sized full of all kinds of information, telephone numbers for the hospitals and nurses, what to do if Billy was neutropenic, explaining all about the lumber punctures and bone marrow. A leaflet explaining the side effects of the steroids, diet sheets, blood count results etc.
I new nothing about blood counts before Billy was diagnosed but within a week or two I would become an expert. I can tell you what high and low counts in White Blood Cells, Neutrophils, Red Cells and Platelets mean and what effects they can have on Billy. I also know what to look out for which may tell me if his counts are high or low.
The Blue Book was to be taken everywhere with us. Any hospital would find it useful and know what to do with Billy when they saw it. It would have treatment records and current medications. The nurses and doctors went through lots of things with me and showed how to fill in the count results and why height, weight and other things are so important.
Even after everything being explained to me and me getting used to all the medications and temperatures etc I was still scared to death about taking Billy home. In some ways it reminded me of taking him home for the first time as a baby. It would all be new to me. I would have to do medications and temperatures at least twice a day. A high temperature is one of the first signs that he could have an infection. A high temperature is Billy's body's way of telling us something is wrong. If he had a temperature over 37.5 I would have to monitor him very carefully. If the temperature was over 38 phone the ward for advice and over 38.5 go straight to hospital.
Billy is most susceptible to infection if he is neutropenic. This is when his neutrophil count is below .75 which effectively means he has no immune system which obviously means he can pick up everything. What was worse was Billy hadn't had chicken pox which was very serious to immniosupressed patients.
Now you can probably see why I was so scared. Billy had always been a little toughie that was hardly ever ill and now this! I had been told that some children go through treatment without hardly ever getting neutropenic and ending up ill but this was very very rare. I had visions of Billy not being able to have any kind if life but being wrapped up in cotton wool and in a face mask. Would this be the only way to keep him safe and sound?
Billy was in a nursery year at his school and was missing his friends lots, the hospital said one of the best things would be to get him home and get him back into a routine. To me this seemed mad, all I wanted to do was make him safe, keep him away from everything and make sure he wasn't ill. My child had cancer why would I want him any more ill?
So after a few chats with the doctors and nurses we decided it was best if we stayed in another night just to relay my fears and give me another night to get used to all the new routines. Another part of me was petrified that I would get it wrong and make Billy seriously ill. It was one hell of a responsibility and was I up to it? What if I got it wrong? What if I measured the drugs wrong or if Billy refused them?
Its a lot to take in, life was going to be so so different, Billy was scared but coping, I was totally petrified...
Monday, 30 January 2012
Sunday, 29 January 2012
Nearer Home
From the moment we got back to our local hospital both of us felt a bit better. Our local hospital is much newer than Southampton and the kids ward is all uptogether, its all clean and fresh. All the staff on Piam Brown are excellent and so so friendly but the ward is depressing and old. We were given a lovely room away from everything with a few outside with windows that were double glazed and shut! Just little things like that raised our spirits. The room had a bathroom and a bed for me to sleep in, it seemed like heaven!
Billy was made to feel special from the moment we arrived, the nurses were fab and the auxiliaries made sure he wanted for nothing! Within an hour or so he had them all wrapped around his little finger and was being quite the charmer! He had a dinner ordered just for him exactly what he wanted and they made sure there were lots of snacks in for him with his steroids!
I managed to give Billy a lovely bath and one of our friends dropped him in new pj's so he felt so much better. The same wonderful friend had brought me in a lovely ready meal for tea and some magazines so I felt more at home and loved!! Billy had his toys and TV and was happy.
The nurses came in and sorted out Billy with meds and learnt all his odd habits, he will only have medicine out of a paper medicine cup! Gave me an extra digital thermometer as Billy would only use them not the hospital ones! They explained a bit more about his meds, as it was calmer for all of us I was taking in more!
After tea Dr Martin came in to see us, he was on great form and made us laugh. He had another of the community nurses and she talked to me and settled a few fears and assured us we were in the best place and went through a few things. It felt good to be somewhere quiet where I could shut the door and we could have peace!
We both slept well that night and Billy was excellent about taking his meds. His appetite was growing almost by the hour, one of the side effects of the Dex. More doctors came round in the morning and we were introduced to Dr Martins deputy Mark who was lovely. I felt a lot happier, we were one of a couple of oncology patients not one of many.
I was nowhere near calm and happy I don't think you ever are again after the news we had but I felt safer, a bit calmer and more comfortable here. I even managed to get home for an hour on the Wednesday and that felt so good!! Being able to have a drink and a bath and do some washing, things people take for granted but that you can't do when you are away. I realised that Billy coming home would be such a huge huge deal, things wouldn't be anything like the way they were before he was diagnosed.
Our phone kept ringing or receiving texts, so many people were interested in Billy and how he was coping. It felt so nice to have so many positive thoughts going his way. Being nearer home meant more people could get in, the good thing is there are no real restrictions on visiting so he was able to have lots of different people including some of his school friends which boosted his spirits. It also meant I had some of my closest friends who I was able to talk to and be honest about my feelings to.
None of the nurses minded me crying. I was still breaking down when Billy was asleep or at silly things and they were great. They had a few funny stories or advice for me which helped. One of the best things was the fact I didn't have to see lots of other oncology patients. Sounds odd but I wasn't ready to face all of what Billy was going to have to go through yet, here I could block it out for a little while longer until I was ready.
Billy's treatment was still ongoing, the antibiotics were stopped and the port was healing well. Martin reiterated to me that Billy had a very good chance and they were doing the treatment to cure him not because they thought it might. None of this really went into my head. I was still just wanting it over and done with, I am not sure wether the fact it was going to be 3 and a half years of treatment really registered with me.
On the rare occasions that the reality hit me I was petrified. What was going to happen to my baby boy? Were the doctors being 100% truthful? Why us?
Billy was made to feel special from the moment we arrived, the nurses were fab and the auxiliaries made sure he wanted for nothing! Within an hour or so he had them all wrapped around his little finger and was being quite the charmer! He had a dinner ordered just for him exactly what he wanted and they made sure there were lots of snacks in for him with his steroids!
I managed to give Billy a lovely bath and one of our friends dropped him in new pj's so he felt so much better. The same wonderful friend had brought me in a lovely ready meal for tea and some magazines so I felt more at home and loved!! Billy had his toys and TV and was happy.
The nurses came in and sorted out Billy with meds and learnt all his odd habits, he will only have medicine out of a paper medicine cup! Gave me an extra digital thermometer as Billy would only use them not the hospital ones! They explained a bit more about his meds, as it was calmer for all of us I was taking in more!
After tea Dr Martin came in to see us, he was on great form and made us laugh. He had another of the community nurses and she talked to me and settled a few fears and assured us we were in the best place and went through a few things. It felt good to be somewhere quiet where I could shut the door and we could have peace!
We both slept well that night and Billy was excellent about taking his meds. His appetite was growing almost by the hour, one of the side effects of the Dex. More doctors came round in the morning and we were introduced to Dr Martins deputy Mark who was lovely. I felt a lot happier, we were one of a couple of oncology patients not one of many.
I was nowhere near calm and happy I don't think you ever are again after the news we had but I felt safer, a bit calmer and more comfortable here. I even managed to get home for an hour on the Wednesday and that felt so good!! Being able to have a drink and a bath and do some washing, things people take for granted but that you can't do when you are away. I realised that Billy coming home would be such a huge huge deal, things wouldn't be anything like the way they were before he was diagnosed.
Our phone kept ringing or receiving texts, so many people were interested in Billy and how he was coping. It felt so nice to have so many positive thoughts going his way. Being nearer home meant more people could get in, the good thing is there are no real restrictions on visiting so he was able to have lots of different people including some of his school friends which boosted his spirits. It also meant I had some of my closest friends who I was able to talk to and be honest about my feelings to.
None of the nurses minded me crying. I was still breaking down when Billy was asleep or at silly things and they were great. They had a few funny stories or advice for me which helped. One of the best things was the fact I didn't have to see lots of other oncology patients. Sounds odd but I wasn't ready to face all of what Billy was going to have to go through yet, here I could block it out for a little while longer until I was ready.
Billy's treatment was still ongoing, the antibiotics were stopped and the port was healing well. Martin reiterated to me that Billy had a very good chance and they were doing the treatment to cure him not because they thought it might. None of this really went into my head. I was still just wanting it over and done with, I am not sure wether the fact it was going to be 3 and a half years of treatment really registered with me.
On the rare occasions that the reality hit me I was petrified. What was going to happen to my baby boy? Were the doctors being 100% truthful? Why us?
Friday, 27 January 2012
Moving Hospitals
We got through Sunday and Monday we were moved back onto the 4 bed ward, hell for a night but they promised we could go back to our local hospital. It was so hard to sleep but i reasoned it was just for on night, I could get through it, Billy was the important thing. It sounds silly but this to me was amazing news being able to be near home would be fab. Nearby the hospital was a park so I was looking forward to seeing some fresh air.
Although Billy had to have another lumber puncture and IV chemo before we went it was the end of the stay up there. Billy was looking forward to going back and hopefully seeing some of his friends again. He was getting better at taking his meds without arguing and had even started to help by pressing buttons when the blood pressure was done! I had started to notice that the side effects from the steroids that I was warned about had started. His appetite had suddenly increased hugely he seemed to be eating so much more than normal. He had started to get awful mood swings and would snap and get upset for no reason.
I would find in the next few weeks and months the side effects aren't easy to cope with but the first time I was relieved in a way because to me it showed the drugs were working. I was quite pleased we were on the ward as I could imagine Billy might not be too pleased about having to be starved for the anaesthetic for the Lumber Puncture.
We were used to the routine of Piam Brown, used to seeing the consultants every morning and have them give Billy a complete examination daily. Used to the nurses only dealing with cancer patients and knowing what they are going through. In some ways it was a safe cocoon for us and as much as I wanted to go I was a bit apprehensive as well.
On the day we were due to leave they had one of the leaders of the political parties who were campaigning in the election doing a broadcast from the ward. They took over everything they had a massive entourage and film crew, you couldn't move without beign in 'their' way. This annoyed me a lot, this was a cancer ward not somewhere to score political points!! They wanted to film Billy but I refused. If they had really wanted to do some good they should have had a look at the real state of the ward, the broken and leaking showers etc and fixed them.
My lovely friend Lauren came up and helped us to pack and then early afternoon they said we were allowed to go! The first time we had been out in the air for 8 days!! I was so glad to get in the car and go away, it was sunny and lovely and we were off!! Billy was really pleased to be going nearer home, he had had enough of the ward and wanted different toys and people and I think he was getting fed up of being looked at! We had bags of belongings and meds and off we went...
The next chapter began!
Although Billy had to have another lumber puncture and IV chemo before we went it was the end of the stay up there. Billy was looking forward to going back and hopefully seeing some of his friends again. He was getting better at taking his meds without arguing and had even started to help by pressing buttons when the blood pressure was done! I had started to notice that the side effects from the steroids that I was warned about had started. His appetite had suddenly increased hugely he seemed to be eating so much more than normal. He had started to get awful mood swings and would snap and get upset for no reason.
I would find in the next few weeks and months the side effects aren't easy to cope with but the first time I was relieved in a way because to me it showed the drugs were working. I was quite pleased we were on the ward as I could imagine Billy might not be too pleased about having to be starved for the anaesthetic for the Lumber Puncture.
We were used to the routine of Piam Brown, used to seeing the consultants every morning and have them give Billy a complete examination daily. Used to the nurses only dealing with cancer patients and knowing what they are going through. In some ways it was a safe cocoon for us and as much as I wanted to go I was a bit apprehensive as well.
On the day we were due to leave they had one of the leaders of the political parties who were campaigning in the election doing a broadcast from the ward. They took over everything they had a massive entourage and film crew, you couldn't move without beign in 'their' way. This annoyed me a lot, this was a cancer ward not somewhere to score political points!! They wanted to film Billy but I refused. If they had really wanted to do some good they should have had a look at the real state of the ward, the broken and leaking showers etc and fixed them.
My lovely friend Lauren came up and helped us to pack and then early afternoon they said we were allowed to go! The first time we had been out in the air for 8 days!! I was so glad to get in the car and go away, it was sunny and lovely and we were off!! Billy was really pleased to be going nearer home, he had had enough of the ward and wanted different toys and people and I think he was getting fed up of being looked at! We had bags of belongings and meds and off we went...
The next chapter began!
Wednesday, 25 January 2012
Moving Rooms
Sunday morning came and we were given some news that I was dreading - we were going to moved out of our lovely room as it was needed and into a shared ward again. The news upset me. I phoned my friend and just sobbed down the phone. It was the first time I had really had a semi meltdown since it had all happened and it was all over moving rooms!
It sounds quite silly now and probably to anyone who has not spent anything more than a night in hospital with a child it is hard to understand. Billy was only 3 and was still struggling himself with where he was and what was happening to him so wanted his mum. He wanted to be able to cuddle up and be quiet when he wanted.
All of a sudden we were back seeing people, instead of being able to close the door when we wanted and shut out the world we wouldn't have that choice. The nurses completely understood but their hands were tied and there was nowhere else we could go. We didn't have a lot of stuff it was just that I really didn't want to have to be where people could see me and have to make conversation unless i wanted to.
The thought of sharing a toilet and shower again with quite a few others wasn't appealing either. The shared wards are noisy and there is no way of shutting the door! It seemed like everything was out of our control, all I wanted was a little bit of privacy for both myself and for Billy. He was still having odd accidents and at least in our own room I could just clear him up without anyone really seeing him and he had his dignity.
It wasn't even like we could go home, we were being kept in as Billy had his port in and they wanted to monitor it and they wanted to see how he was coping with treatment. I would have given anything to have been able to go home for one night, its the silly things like washing clothes, making a cup of tea, watching TV and sleeping in your own bed you miss.
I really think that the Government should provide much better facilities for children and parents on the wards of cancer units. The staff are all fabulous and they do the best job in the whole world and deserve nothing but the up most praise. Its the 'managment' of the hospitals who you can imagine have massive offices and expense accounts etc who should be considering how children who are going through an awful and traumatic time could be made more comfortable. I am not asking for silk sheets and Jacuzzis, just every patient having their own room with a bathroom so they have dignity and somewhere for their parents to rest to help them.
In this day and age you would have thought this would be the least that would happen. Unfortunately Piam Brown is an old old ward that is done up well in some bits but the rest is just getting through until the new ward is opened when funding comes but this is not a good enough excuse! Sort it government and NHS managers!!
Right rant over but you can see where I am coming from!! Well the first night we were moved out of our room we got put in to a 2 bed ward and the other patient didn't turn up so it wasn't to bad, it was just scary being taken away from our comfort zone and being made to feel uncomfortable, not an easy way to spend our sunday.......
But things could only get better, couldn't they???
It sounds quite silly now and probably to anyone who has not spent anything more than a night in hospital with a child it is hard to understand. Billy was only 3 and was still struggling himself with where he was and what was happening to him so wanted his mum. He wanted to be able to cuddle up and be quiet when he wanted.
All of a sudden we were back seeing people, instead of being able to close the door when we wanted and shut out the world we wouldn't have that choice. The nurses completely understood but their hands were tied and there was nowhere else we could go. We didn't have a lot of stuff it was just that I really didn't want to have to be where people could see me and have to make conversation unless i wanted to.
The thought of sharing a toilet and shower again with quite a few others wasn't appealing either. The shared wards are noisy and there is no way of shutting the door! It seemed like everything was out of our control, all I wanted was a little bit of privacy for both myself and for Billy. He was still having odd accidents and at least in our own room I could just clear him up without anyone really seeing him and he had his dignity.
It wasn't even like we could go home, we were being kept in as Billy had his port in and they wanted to monitor it and they wanted to see how he was coping with treatment. I would have given anything to have been able to go home for one night, its the silly things like washing clothes, making a cup of tea, watching TV and sleeping in your own bed you miss.
I really think that the Government should provide much better facilities for children and parents on the wards of cancer units. The staff are all fabulous and they do the best job in the whole world and deserve nothing but the up most praise. Its the 'managment' of the hospitals who you can imagine have massive offices and expense accounts etc who should be considering how children who are going through an awful and traumatic time could be made more comfortable. I am not asking for silk sheets and Jacuzzis, just every patient having their own room with a bathroom so they have dignity and somewhere for their parents to rest to help them.
In this day and age you would have thought this would be the least that would happen. Unfortunately Piam Brown is an old old ward that is done up well in some bits but the rest is just getting through until the new ward is opened when funding comes but this is not a good enough excuse! Sort it government and NHS managers!!
Right rant over but you can see where I am coming from!! Well the first night we were moved out of our room we got put in to a 2 bed ward and the other patient didn't turn up so it wasn't to bad, it was just scary being taken away from our comfort zone and being made to feel uncomfortable, not an easy way to spend our sunday.......
But things could only get better, couldn't they???
Monday, 23 January 2012
The next few days
Well what was going to be an overnight stay at Southampton hospital was turning into much longer. To be honest as much as I didn't like being in hospital I was pleased that Billy was there getting the treatment that he needed by people that could help him. Although I had given Billy the normal medicines like calpol and antibiotics I wasn't sure I was ready to do this big list of medicines that he was now having. Being in hospital gave both of us chance to get used to the new routine.
It was a scary thought being responsible for all the medicines, antibiotics, steroids, laxatives and others. What if I got them wrong? What if I forgot a dose of them? Everything went through my head. Although I knew that I was a organised person that didn't forget things and had routines it was still in my head. I know being a mum is a huge responsibility on its own but to then become a mum to a child with Leukaemia and be responsible for everything was scaring me.
So for those days I was more than happy to watch and to learn our new routines. As the nurses are all so experienced they all knew different ways to encourage children to take meds and ways to help me ensure he would take them properly.
The weekend came round, we had just moved into a really hot spell and being at the top of the hospital was very very warm. It was torture to look out the window and see that beautiful sunshine and not be able to go and enjoy it. When we were at home we loved being out in the park making the most of the sun and playing. There were fans and the windows opened a little bit so there was a bit of a breeze but it was still uncomfortable.
Thankfully one friend brought me in some flip flops, another a dress and tshirts and my mum brought me in a few more bits. Thank god for them, I literally packed a few bits for us. Billy was getting brought lots of new PJ's and tshirts so he was fine but I was living in jeans, trainers and a jumper as it was colder when we were admitted.
We had lots of visitors at the weekend which cheered both of us up. The fact people had to travel for at least an hour made it even more special. One of the ladies from Billy's nursery came to see him and was fantastic, Billy decided to have an accident just as she turned up and I was so embarrassed but Carol just brushed it off and helped me clean him up, Friends like that are worth everything in life. Just knowing people cared mattered. I had a few friends who visited more than once and that was incredible to us.
Billy had got more confident with staying with the play leaders and a couple of times I went to the canteen with friends and managed to eat proper food! Just that half hour out of the ward let me recharge a bit and made me feel human even if it was only short. There was a shop that sold clothes and I even ventured in there.
I hated leaving Billy but he wasn't allowed off the ward due to him being poorly and on a drip. The first few days of the dexamethasone weren't affecting him too badly and he seemed to be coping with it, no mood swings and no major appetite change. The first chemo made him a bit poorly and he felt a bit sick but nothing as bad I was expecting.
I still cried but mainly now at night or when someone I hadn't seen came in, the shock of telling someone knew never got any better. It felt weird to say my son has Leukaemia. I read a lot of the literature I was given so I could explain a bit more to people who asked me questions. I was more confident in asking the nurses and other staff questions without worrying as to what the answer would be.
It was in this time that the granddaughter of a lady i knew through work was also diagnosed with Leukaemia. She was diagnosed with a different type to Billy but we both bonded and we are in touch to this day, her daughter had to have 5 months treatment and that was it but although Billy will have at least 3 and a half years she is the person who understands me most.
It was so nice to talk to someone who understood and understood 100% its a horrible way to make a friendship but I know Jo will always be a part of our lives. I remember the days when neither of us slept but were like walking zombies.
Billy still had his bandage on over his port site but he wasn't complaining of pain. Although he wasn't the child he was a week ago for lots of different reasons he was my Billy and he was determined to fight it. He would tell everyone that he would beat the 'bad aliens' that were inside him. That was my Billy and how proud was I...
It was a scary thought being responsible for all the medicines, antibiotics, steroids, laxatives and others. What if I got them wrong? What if I forgot a dose of them? Everything went through my head. Although I knew that I was a organised person that didn't forget things and had routines it was still in my head. I know being a mum is a huge responsibility on its own but to then become a mum to a child with Leukaemia and be responsible for everything was scaring me.
So for those days I was more than happy to watch and to learn our new routines. As the nurses are all so experienced they all knew different ways to encourage children to take meds and ways to help me ensure he would take them properly.
The weekend came round, we had just moved into a really hot spell and being at the top of the hospital was very very warm. It was torture to look out the window and see that beautiful sunshine and not be able to go and enjoy it. When we were at home we loved being out in the park making the most of the sun and playing. There were fans and the windows opened a little bit so there was a bit of a breeze but it was still uncomfortable.
Thankfully one friend brought me in some flip flops, another a dress and tshirts and my mum brought me in a few more bits. Thank god for them, I literally packed a few bits for us. Billy was getting brought lots of new PJ's and tshirts so he was fine but I was living in jeans, trainers and a jumper as it was colder when we were admitted.
We had lots of visitors at the weekend which cheered both of us up. The fact people had to travel for at least an hour made it even more special. One of the ladies from Billy's nursery came to see him and was fantastic, Billy decided to have an accident just as she turned up and I was so embarrassed but Carol just brushed it off and helped me clean him up, Friends like that are worth everything in life. Just knowing people cared mattered. I had a few friends who visited more than once and that was incredible to us.
Billy had got more confident with staying with the play leaders and a couple of times I went to the canteen with friends and managed to eat proper food! Just that half hour out of the ward let me recharge a bit and made me feel human even if it was only short. There was a shop that sold clothes and I even ventured in there.
I hated leaving Billy but he wasn't allowed off the ward due to him being poorly and on a drip. The first few days of the dexamethasone weren't affecting him too badly and he seemed to be coping with it, no mood swings and no major appetite change. The first chemo made him a bit poorly and he felt a bit sick but nothing as bad I was expecting.
I still cried but mainly now at night or when someone I hadn't seen came in, the shock of telling someone knew never got any better. It felt weird to say my son has Leukaemia. I read a lot of the literature I was given so I could explain a bit more to people who asked me questions. I was more confident in asking the nurses and other staff questions without worrying as to what the answer would be.
It was in this time that the granddaughter of a lady i knew through work was also diagnosed with Leukaemia. She was diagnosed with a different type to Billy but we both bonded and we are in touch to this day, her daughter had to have 5 months treatment and that was it but although Billy will have at least 3 and a half years she is the person who understands me most.
It was so nice to talk to someone who understood and understood 100% its a horrible way to make a friendship but I know Jo will always be a part of our lives. I remember the days when neither of us slept but were like walking zombies.
Billy still had his bandage on over his port site but he wasn't complaining of pain. Although he wasn't the child he was a week ago for lots of different reasons he was my Billy and he was determined to fight it. He would tell everyone that he would beat the 'bad aliens' that were inside him. That was my Billy and how proud was I...
Saturday, 21 January 2012
Chemo
Well the day after the port was put in, the chemo started. As much as I had been prepared, seen the treatment plans for the first 8 weeks to actually start them was another milestone. Again it brought back the reality of what he had again. I had all kinds of visions, none of them good as to what the chemo would do to him. I saw the other children on the ward and saw how the chemo had changed them and to be honest I was scared.
One of the things I had been told is that Billy could have a severe reaction to any one of the drugs. At the time I was told I didn't really consider this but as it was about to start I did. I suddenly though what if the drugs they are giving him to get rid of the leukaemia make him react badly and die? I know this sounds a bit silly now but at the time it didn't. I was then thinking what am I doing, have I made the right choice?
The first thing was to start Billy on steroids. The steroids he was give, and is still on monthly now, was Dexamethasone. Sounds quite a nice name for a drug but believe me its the one with one of the nastiest side effects, but more about that another time! In Southampton they were tablet form and as I wasn't sure wether Billy would be able to swallow tablets the wonderful nurses crushed them and mixed them in a tiny bit of squash. Billy wasn't stupid tho, he knew it was a medicine but luckily he wasn't too bad about taking them.
They did warn me about the side effects of the Dex, the eating, the mood swings, the sleep less nights and the nightmares but for the first few days he actually was a complete angel on them! He was also on antibiotics, firstly for the suspected infection and i believe some to prevent infection after the port had gone in. He was still all bandaged up and he was very self conscious of the port and didn't want me looking at it, but he didn't complain.
Around this time Billy started having an upset tummy, both ends. I was quite worried, after stupidly googling the chemo and from what people, other parents included had told me this could be a sign of things to come. The nurses assured me that it wasn't a problem it was just his body with the antibiotics but if it dd continue he could have anti sickness drugs. I was also told as long as he wasn't sick for 20 minutes after having meds it was ok.
He then had his first dose of Vincristine. This is the chemo drug he has had the most. It was a clear liquid that was given via the IV line. I was warned that this might make him lose his hair, in fact they were sure that the first intensive weekly doses of it would definitely make him lose his hair. This was one of the things that really upset Billy, I remember my dad offering to shave his head if Billy lost his hair and he was inconsolable. As it happened I came up with a much better idea, but that's for a later blog!!
There are different stages of treatment, the intensive periods which is very full on, large doses of all the drugs which is there to get rid of the leukaemia and then the maintenance stages which are still a lot for a child but less than the maintenance. Depending on how the leukaemia cells are made up genetically and other factors including how well the child responds to the first intensive period depends on how many total periods of intensive treatments they have.
Another thing that the testing of the bone marrow etc tells the doctors is how many leukaemia cells percentage wise there are. I remember Billy's original figure was 56%. At the time i remember thinking this was awful because it was over half.
The different medicines the kids have to take include a drug called peg asparaginase. This was injected directly into Billy's thigh muscle. The fun we had holding him down once he saw the size of the syringe was unbelievable. I think though that I did manage to get through to him that again it was anther way for the good aliens to get in and fight the bad aliens away!
Although Billy had been quite well when we first came into the hospital the operations and the various drugs began to take its toll quite quickly. People who had been in a few days before saw such a difference, I tried to put on a brave face but inside I was worried to death. At this time, Billy who didn't like being examined already became a lot worse. I really felt for both the doctors and for him, I don't think i would like to be prodded about all the time!
The amount of meds he was having seemed huge to me, I was worried how I would cope when we were finally allowed home, it seemed so so much to be responsible for. But we both wanted to be home so I would have to learn...
One of the things I had been told is that Billy could have a severe reaction to any one of the drugs. At the time I was told I didn't really consider this but as it was about to start I did. I suddenly though what if the drugs they are giving him to get rid of the leukaemia make him react badly and die? I know this sounds a bit silly now but at the time it didn't. I was then thinking what am I doing, have I made the right choice?
The first thing was to start Billy on steroids. The steroids he was give, and is still on monthly now, was Dexamethasone. Sounds quite a nice name for a drug but believe me its the one with one of the nastiest side effects, but more about that another time! In Southampton they were tablet form and as I wasn't sure wether Billy would be able to swallow tablets the wonderful nurses crushed them and mixed them in a tiny bit of squash. Billy wasn't stupid tho, he knew it was a medicine but luckily he wasn't too bad about taking them.
They did warn me about the side effects of the Dex, the eating, the mood swings, the sleep less nights and the nightmares but for the first few days he actually was a complete angel on them! He was also on antibiotics, firstly for the suspected infection and i believe some to prevent infection after the port had gone in. He was still all bandaged up and he was very self conscious of the port and didn't want me looking at it, but he didn't complain.
Around this time Billy started having an upset tummy, both ends. I was quite worried, after stupidly googling the chemo and from what people, other parents included had told me this could be a sign of things to come. The nurses assured me that it wasn't a problem it was just his body with the antibiotics but if it dd continue he could have anti sickness drugs. I was also told as long as he wasn't sick for 20 minutes after having meds it was ok.
He then had his first dose of Vincristine. This is the chemo drug he has had the most. It was a clear liquid that was given via the IV line. I was warned that this might make him lose his hair, in fact they were sure that the first intensive weekly doses of it would definitely make him lose his hair. This was one of the things that really upset Billy, I remember my dad offering to shave his head if Billy lost his hair and he was inconsolable. As it happened I came up with a much better idea, but that's for a later blog!!
There are different stages of treatment, the intensive periods which is very full on, large doses of all the drugs which is there to get rid of the leukaemia and then the maintenance stages which are still a lot for a child but less than the maintenance. Depending on how the leukaemia cells are made up genetically and other factors including how well the child responds to the first intensive period depends on how many total periods of intensive treatments they have.
Another thing that the testing of the bone marrow etc tells the doctors is how many leukaemia cells percentage wise there are. I remember Billy's original figure was 56%. At the time i remember thinking this was awful because it was over half.
The different medicines the kids have to take include a drug called peg asparaginase. This was injected directly into Billy's thigh muscle. The fun we had holding him down once he saw the size of the syringe was unbelievable. I think though that I did manage to get through to him that again it was anther way for the good aliens to get in and fight the bad aliens away!
Although Billy had been quite well when we first came into the hospital the operations and the various drugs began to take its toll quite quickly. People who had been in a few days before saw such a difference, I tried to put on a brave face but inside I was worried to death. At this time, Billy who didn't like being examined already became a lot worse. I really felt for both the doctors and for him, I don't think i would like to be prodded about all the time!
The amount of meds he was having seemed huge to me, I was worried how I would cope when we were finally allowed home, it seemed so so much to be responsible for. But we both wanted to be home so I would have to learn...
Wednesday, 18 January 2012
Thursday
Well after a very sleepless night for me Thursday came, the day of the big operation. The operation to insert the port a cath in. Billy was allowed to eat by 7 in the morning so i made sure he had something as after this he was starved before the anaesthetic. He seemed full of life and instead of being worried at all he was happy, full of beans and generally normal!
My best friend came down on a combination of buses and trains to be with me and I was so glad to see her. She asked the questions I didn't want to or hadn't thought of and let me talk and talk. She was fantastic when the Clic Sargent social worker came in and helped me fill out some of the forms. She had brought her daughter down with her and Billy was so pleased to see her and had fun in the playroom with her.
The morning still dragged though, it was a waiting game and I kept staring at the clock wishing it was that evening and it was all over and done with. I wished he had been on the morning list so it would have been all over with by now. He was on the list that started at 1 and the ward were told he would be one of the first down, this comforted me as I knew it would be easier.
It was so hard as Billy started to get hungry by 11 but was quite good when we said no to him, it was hard though when the food for the ward came up. You could smell it too which must have been so hard, he even went up and looked at the trolley. Kirsty was fantastic and didn't eat in front of hm and they went down to get some food.
As the waiting continued the more things went on in my head. Was this the right thing to do for him, was the port completely safe? Did they ever go wrong, would it hurt much? Would he get used to it? The consultants and nurses had assured me that it was completely safe. They worked really well and there were next to no problems. Billy would be able to do so much more with the port and his life would be so much easier and would be more back to normal. I kept mulling it over but I was sure that they were right.
So much for us being first on the list, 2 o'clock came then 3. The ward phoned up as Billy was starting to get very hungry and very upset. He was only 3 and was really struggling with not being able to eat. I think he also just wanted to get down there, it must have been hard for him as he had been prepared by so many people and they still kept coming back to do obs!
Finally about 3.45 they came to get him, he got a bit scared then, so I carried him down there. The operating theatre is on the floor below but it seemed like it was in the next time. He was really good though and they let me stay with him and hold his hand until he went to sleep. I still wasn't used to watching my son go under, I still don't think I am now, its awful one minute they are there the next not and they are so floppy. I left him in tears and went back to the ward. The nurses tried to comfort me as we went up but no one could.
All kinds of thing were going through my head, would he wake up, was he going to be alright? What if they found something else when they did the op? He was my baby, my little boy and he was going to come back different, with something inside him. They had shown us picture of how the port would stick out and I just worried.
Kirst was fab and made me go downstairs and eat a burger king! Bizarrely it was the best thing I had ever eaten, just what I needed. We ate, had a look around the shops bought some magazines and supplies for later and cards for Billy. We saw a balloon in the next shop and I just had to get it ready for him coming back to the room.
We went back upstairs and Billy wasn't back and he wasn't even ready to come back. The next half hour or so seemed to drag and we tried to take me mind off it. Then i heard them say he's ready!! I was so excited, they said he was awake, I was so so relieved. They then told me to be prepared as he was quite distressed. When we got downstairs I could hear him before I could see him.
We went into the recovery room and there was my gorgeous little Billy on a bed crying. I just ran up and held his hand, I couldn't cuddle him properly because of the bandages. He was so unhappy, obviously in pain and couldn't work out where he was. This scared the life out of me but I had to mask these feeling and just be there. He didn't look alright at all. What had I agreed to? Was this a taste of what we had coming?
Back on the ward Kirsty was waiting for us, bless her she waited even thought she had a long journey back ahead of her. I could see her face when we came back in and she was shocked too. The nurses were amazing and got him some painkillers. They didn't seem to do anything and he wouldn't eat and was very distressed. The doctors suggested everyone but me leave the room as he was so unhappy. felt awful but they understood.
Watching Billy in bed, wired up to all kinds of machines, on all kins of medicines was awful. You never imagine this will happen to your child. He was 3 that is no age, why on earth was this happening to us? I was scared a lot as to what the future would bring, what effects would the chemo have on him, would it change him.
This day had changed things even more for us, It made things even more real. Made me face what was coming and left me wondering how I would get through it and would I be strong enough to help Billy get through it?
My best friend came down on a combination of buses and trains to be with me and I was so glad to see her. She asked the questions I didn't want to or hadn't thought of and let me talk and talk. She was fantastic when the Clic Sargent social worker came in and helped me fill out some of the forms. She had brought her daughter down with her and Billy was so pleased to see her and had fun in the playroom with her.
The morning still dragged though, it was a waiting game and I kept staring at the clock wishing it was that evening and it was all over and done with. I wished he had been on the morning list so it would have been all over with by now. He was on the list that started at 1 and the ward were told he would be one of the first down, this comforted me as I knew it would be easier.
It was so hard as Billy started to get hungry by 11 but was quite good when we said no to him, it was hard though when the food for the ward came up. You could smell it too which must have been so hard, he even went up and looked at the trolley. Kirsty was fantastic and didn't eat in front of hm and they went down to get some food.
As the waiting continued the more things went on in my head. Was this the right thing to do for him, was the port completely safe? Did they ever go wrong, would it hurt much? Would he get used to it? The consultants and nurses had assured me that it was completely safe. They worked really well and there were next to no problems. Billy would be able to do so much more with the port and his life would be so much easier and would be more back to normal. I kept mulling it over but I was sure that they were right.
So much for us being first on the list, 2 o'clock came then 3. The ward phoned up as Billy was starting to get very hungry and very upset. He was only 3 and was really struggling with not being able to eat. I think he also just wanted to get down there, it must have been hard for him as he had been prepared by so many people and they still kept coming back to do obs!
Finally about 3.45 they came to get him, he got a bit scared then, so I carried him down there. The operating theatre is on the floor below but it seemed like it was in the next time. He was really good though and they let me stay with him and hold his hand until he went to sleep. I still wasn't used to watching my son go under, I still don't think I am now, its awful one minute they are there the next not and they are so floppy. I left him in tears and went back to the ward. The nurses tried to comfort me as we went up but no one could.
All kinds of thing were going through my head, would he wake up, was he going to be alright? What if they found something else when they did the op? He was my baby, my little boy and he was going to come back different, with something inside him. They had shown us picture of how the port would stick out and I just worried.
Kirst was fab and made me go downstairs and eat a burger king! Bizarrely it was the best thing I had ever eaten, just what I needed. We ate, had a look around the shops bought some magazines and supplies for later and cards for Billy. We saw a balloon in the next shop and I just had to get it ready for him coming back to the room.
We went back upstairs and Billy wasn't back and he wasn't even ready to come back. The next half hour or so seemed to drag and we tried to take me mind off it. Then i heard them say he's ready!! I was so excited, they said he was awake, I was so so relieved. They then told me to be prepared as he was quite distressed. When we got downstairs I could hear him before I could see him.
We went into the recovery room and there was my gorgeous little Billy on a bed crying. I just ran up and held his hand, I couldn't cuddle him properly because of the bandages. He was so unhappy, obviously in pain and couldn't work out where he was. This scared the life out of me but I had to mask these feeling and just be there. He didn't look alright at all. What had I agreed to? Was this a taste of what we had coming?
Back on the ward Kirsty was waiting for us, bless her she waited even thought she had a long journey back ahead of her. I could see her face when we came back in and she was shocked too. The nurses were amazing and got him some painkillers. They didn't seem to do anything and he wouldn't eat and was very distressed. The doctors suggested everyone but me leave the room as he was so unhappy. felt awful but they understood.
Watching Billy in bed, wired up to all kinds of machines, on all kins of medicines was awful. You never imagine this will happen to your child. He was 3 that is no age, why on earth was this happening to us? I was scared a lot as to what the future would bring, what effects would the chemo have on him, would it change him.
This day had changed things even more for us, It made things even more real. Made me face what was coming and left me wondering how I would get through it and would I be strong enough to help Billy get through it?
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