After 11 nights the doctors decided Billy was ready to go home. It was a friday so we would have the weekend with people around and no major treatment. I was petrified. I never thought I would be scared to go home I thought I would be so glad to see the back of the hospital I would be breaking the doors down to go home!
This was the day that Billy's lovely teacher and TA had come in to see him and make him feel confident about going back in. They brought a lovely card that his class had made and there were lots of pictures of the other kids. Billy loved it. His teacher and TA were both so wonderful, they obviously loved him and were so positive around him. We all had a little cry as well.
Billy had started to change a bit, the steroids which he had now been on for a week had started to effect his behaviour, eating and weight. He had become very stroppy, easily getting cross and emotional whereas before he had always been a chilled out boy. His eating habits were very strange, he was eating so much, weird combinations of things too, things that he had never eaten before he was wolfing down. This had an effect on his weight too, he had lost a bit when he was first diagnosed and treatment started but the weight was going on again well.
The day he was due to go home I went with one of my wonderful friends and did a big shop in our local supermarket. Billy at this point was craving ham and cucumbers so I brought that, yogurts, fruit, veg and treats. I thought I had everything we needed. It felt weird going back to normality and doing things like food shopping again. Just getting out of the hospital buying groceries and seeing people felt odd, in the hospital we were so cocooned against everything. The outside world seemed so bright and noisy!
Seeing people I knew out who knew about Billy was another eye opener. Some people were great, came over and chatted, talked about Billy, gave me a hug and offered help. Some literally walked the other way and didn't know what to say to me. This would get better but to start off it upset me a bit as I needed people to support us.
At 5 o'clock the doctors and nurses were there to discharge us, we had a huge bag full of meds and nurse Ali had written a reminder poster for me to get the meds right! Not that I am stupid but it felt better to have it written down in black and white. Waving goodbye to the staff felt so weird and actually quite emotional.
Then we were out of the hospital and in the car on the way home. We got in shut the door and looked around, both of us didn't know what to do to start off with. This is the first time we had been just us for nearly 2 weeks. Billy was pleased to see the TV so he could watch Ben 10 and other cartoon he liked! Not long after we got in he was starving again! this was something else I was going to have to get used to!
It was a lovely sunny evening so I opened the windows and enjoyed the fresh air. We were both exhausted to decided to leave going out and about till next morning. Both of us had a bath, how amazing did it feel to have a bath then chill on the sofa? It was total heaven and the quietness after the hospital was great!
I made sure Billy had the evening meds, the first time was quite scary but nothing as bad as I had built it up in my head! In fact I was quite proud of myself, I had managed it without panicking and Billy had taken it just fine. Maybe being home and keeping the meds and other things right wouldn't be so hard after all.
Our phone rang and rang, it was lovely to know people cared about us and we had all kinds of offers of visits. In the end we just had a couple of close Friends round for an hour and it was nice to see them and be normal and have a cup of tea and a chat!
Then it was bedtime. Heaven my own bed! I was so so looking forward to it and so was Billy. As the steroids cause sleep problems he didn't go straight off but watched TV for a while. Finally he fell asleep! I thought I would be straight after him but no, my mind went into overdrive. The tears came and i phoned my friend. Just being able to talk helped. This was scary. Billy was home but he has leukaemia. That word again Leukaemia.
My head was so messed up, i was so scared and this time properly on my own. All the worst cases scenarios were going through my head. To add to it I was so worried about getting the meds wrong or Billy dropping them and me not knowing. I was worried sick. I was on my own too. It was just me I was 100% responsible for him. Would I be able to do this. I wasn't wonder woman I was just a normal woman.
The tears and fears were there. It seemed to hit me all over again. The blame questions, was it my fault, could I have stopped him getting it etc ? They were all in my head. Suddenly I was wondering if we should have stayed in hospital. Luckily my friend calmed me down and made me think rationally about looking after Billy. I had done tonight's meds
It was like being a new mum all over again. I remember someone saying just do things the way that works best for you. Thats what I had done when Billy was a baby. So within reson I would try that again with this. After all apart from the leukaemia we never really had any problems. Reassured I managed to try to sleep...
Tuesday 31 January 2012
Monday 30 January 2012
getting ready to go home
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...
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...
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?
Monday 16 January 2012
What next....
So i've told Billy, in my own way but i've told him. Luckily the way I have chosen doesn't seem to have bothered him too much. He still wasn't keen on taking the meds but he did start being a little bit more cooperative. He seemed to adapt to all the new changes and challenges we were experiencing.
My friends and family were great, I had lots of texts, calls and FB messages. I used facebook as an easy way to keep people up to date without having to talk to them all. I was so so thankful for my iphone, it became my link with the outside world. It was amazing just how many people cared, the messages of support were amazing. I remember a really good friend of mine actually writing me a letter. A proper letter not a text or call but a letter. That really helped me, she was so so complimentary about me and the way Billy and I were. She peppered the letter with lots of funny pictures and jokes that we shared. I have kept that letter and I still look at it from time to time.
My oldest friend who is scared of driving on motorways spent most of Wednesday day time with us, somehow she conquered her fears to help us. Just seeing her walk onto the ward was amazing, she has always been there for me and we are still as close as the day we met. Being a mum herself she understood everything i was feeling especially as she had had a poorly child when he was very young. She made me go downstairs to the shop for 5 minutes to get some food and drink, apart from that I didn't leave the ward that day.
Billy was still full of energy and loved the playroom as it had lots of new toys in it. He seemed so well in himself and i felt guilty in some ways him being on the ward with children who were really ill. The play leader Caron was fantastic, she could see how worried I was about everything and she said she would come and explain to Billy about his operation for the next day and what it would mean. She brought in a dummy which had a port to show Billy. He thought it was great especially when the black currant squash they were using as flood leaked everywhere!!
Caron provided us all with a laugh when she brought in a blanket for Billy to choose. Each child on the ward get to choose a blanket made by a charity to make something familiar and cosy when they come into hospital, they take it home and its theirs. When she brought Billy a few to choose from one had flowers on, his face was a picture he was so so cross! I'm a boy he said, boys don't have things with flowers on them! He was so so funny.
Billy was quite excited by the fact his food was brought into him, he could chose what he wanted and then it was there! He managed to eat quite well. I on the other hand seemed to survive on toast and tea, i didn't want to go downstairs as it meant leaving Billy which I didn't want to do, even when others were there I was still worried 'just incase'.
The weather had started to warm up and it was warm on the ward as it was right at the top of the hospital, we could see all the lovely sun out of our window. I also didn't have many clothes so I had to beg friends and family to bring me in a few cooler bits to get me through. Toiletries I needed too and luckily a very good friend brought me a lovely set in.
Day time and early evening was full of friends, my wonderful, amazing friends who thought nothing of driving 40 miles, paying a fortune to park, just to be there for us. How lucky am I, by the end of the 3rd day we had over 15 visitors. But when they went home was when I started to think, as soon as Billy was asleep and I was on my own the tears came. I read some of the books and leaflets I had been given and to be honest they made things worst, seeing everything in black and white was awful.
That was what was wrong with Billy, he had this horrible scary disease. The facts showed me what we had coming, what the chemo could do, how ill he probably would get. My baby was so well, had I made the right decision. Id the chemo was going to make him so ill how could i sit and watch? I knew there was no other option but this didn't stop me wishing there was something i could do that would make him get better without the nasty bits.
I saw the children without hair and it made me cry. The poor innocent little babies, why was this happening to them? I couldn't imagine Billy being too tired and ill to do things, would his friends still want to play with him if he couldn't do things???
Thoughts, sometimes they do you no good.....
you can see the blanket he chose!
My friends and family were great, I had lots of texts, calls and FB messages. I used facebook as an easy way to keep people up to date without having to talk to them all. I was so so thankful for my iphone, it became my link with the outside world. It was amazing just how many people cared, the messages of support were amazing. I remember a really good friend of mine actually writing me a letter. A proper letter not a text or call but a letter. That really helped me, she was so so complimentary about me and the way Billy and I were. She peppered the letter with lots of funny pictures and jokes that we shared. I have kept that letter and I still look at it from time to time.
My oldest friend who is scared of driving on motorways spent most of Wednesday day time with us, somehow she conquered her fears to help us. Just seeing her walk onto the ward was amazing, she has always been there for me and we are still as close as the day we met. Being a mum herself she understood everything i was feeling especially as she had had a poorly child when he was very young. She made me go downstairs to the shop for 5 minutes to get some food and drink, apart from that I didn't leave the ward that day.
Billy was still full of energy and loved the playroom as it had lots of new toys in it. He seemed so well in himself and i felt guilty in some ways him being on the ward with children who were really ill. The play leader Caron was fantastic, she could see how worried I was about everything and she said she would come and explain to Billy about his operation for the next day and what it would mean. She brought in a dummy which had a port to show Billy. He thought it was great especially when the black currant squash they were using as flood leaked everywhere!!
Caron provided us all with a laugh when she brought in a blanket for Billy to choose. Each child on the ward get to choose a blanket made by a charity to make something familiar and cosy when they come into hospital, they take it home and its theirs. When she brought Billy a few to choose from one had flowers on, his face was a picture he was so so cross! I'm a boy he said, boys don't have things with flowers on them! He was so so funny.
Billy was quite excited by the fact his food was brought into him, he could chose what he wanted and then it was there! He managed to eat quite well. I on the other hand seemed to survive on toast and tea, i didn't want to go downstairs as it meant leaving Billy which I didn't want to do, even when others were there I was still worried 'just incase'.
The weather had started to warm up and it was warm on the ward as it was right at the top of the hospital, we could see all the lovely sun out of our window. I also didn't have many clothes so I had to beg friends and family to bring me in a few cooler bits to get me through. Toiletries I needed too and luckily a very good friend brought me a lovely set in.
Day time and early evening was full of friends, my wonderful, amazing friends who thought nothing of driving 40 miles, paying a fortune to park, just to be there for us. How lucky am I, by the end of the 3rd day we had over 15 visitors. But when they went home was when I started to think, as soon as Billy was asleep and I was on my own the tears came. I read some of the books and leaflets I had been given and to be honest they made things worst, seeing everything in black and white was awful.
That was what was wrong with Billy, he had this horrible scary disease. The facts showed me what we had coming, what the chemo could do, how ill he probably would get. My baby was so well, had I made the right decision. Id the chemo was going to make him so ill how could i sit and watch? I knew there was no other option but this didn't stop me wishing there was something i could do that would make him get better without the nasty bits.
I saw the children without hair and it made me cry. The poor innocent little babies, why was this happening to them? I couldn't imagine Billy being too tired and ill to do things, would his friends still want to play with him if he couldn't do things???
Thoughts, sometimes they do you no good.....
you can see the blanket he chose!
Sunday 15 January 2012
Telling Billy
So I have just been given the worst news I have ever had in my life and I've now got to think about how and what I tell Billy. They do have play leaders and story books to help but I knew Billy well enough to know that he would rather it came from me. I didn't want him worried about what he had but I also didn't want him to have to go through medicines, obs, operation etc without knowing why and getting worried that way.
I left the quiet room where Juliet had given us the news and walked back to our room. My head was spinning, there were all kinds of thoughts inside my head and I was still tearful. As soon as I walked into the room Billy jumped on me for a cuddle, I cuddled him back like I would never let him go. I knew the next few months were going to be the hardest thing we have ever been though.
Suddenly as I was sat there with him an he was showing me all his Ben 10 toys I had an idea how to tell him!! Billy was so obsessed with Ben 10 and actually thought that he was Ben 10 sometimes so maybe I could use this.
So I decided on a way that I would tell him. I would use the Ben 10 scenario. This would be a way to explain but in a way he wouldn't be scared! He was already struggling with the temperatures, blood pressure etc so I thought it may help. Although he wasn't really scared of being in hospital he was getting fed up of being looked at and having to take medicine.
After my parents had gone and we had eaten I sat and explained to him that he had a bad Alien called Leukaemia inside him and that the doctors were going to give him medicine good aliens to go in and fight off the bad one. He thought this was excellent! He didn't seem scared at all. He was interested in what the good aliens would be called and how big they would be! Luckily he was far too young to understand exactly what he had and what the worse case scenario would be.
I told him that on Thursday he would be having another operation to put a 'landing port' for the good aliens in to make it easier for them to get in and fight the bad aliens. This all made perfect sense to him! One of the nurses came in then and she thought it was a great way to explain to someone as bright and inquisitive as Billy. Hopefully this should make it easier for him to take the medicine and not fight us so much.
Maybe some people will think I handled this wrong and maybe I shouldn't have explained as much as I did. I have always been honest with Billy and I thought I owed it to hm to carry on being as honest as I could now. He did ask why I had been crying and I just said it was because I was tired. At his age he was able to accept that life was that simple and to trust Mum and that everything would be ok. I just wish I thought the same, I was still angry and upset.
Its awful but I was wishing that it had happened to someone else. Selfishly I wished it was someone that had lots of children not me with just one. What had I done that meant my child was singled out and had this terrible disease. As Juliet had explained it might be caused by a virus I racked my brains to try and think where he could have got it. Should I had tried to find a job with less hours so he wasn't in childcare which could have been where it happened. Should I have moved where we now lived and if I had stayed where we were he might not have got it?
So much was going on in my head ,the hardest thing is when you are a single parent you have no one else to turn to. I didn't really have someone to tell my deepest darkest fears to who would understand completely. He was my child no one else's. I could talk to other people but they weren't as close as I was didn't feel that fear and worry that I did. Of course people would understand to a extent but unless its your child you cant 100% understand.
Although I had explained to Billy that he was poorly he didn't feel or even look poorly, he was a live wire up and down, in and out the playroom and playing in the corridor. I kept asking him to come back in, stop making noise. Then one of the nurses said to me, make the most of it in a few weeks you will be wishing that he was doing it. If he was being a nuisance they would say.
Now that was another reality check, what would happen? Would Billy be able to walk? Would he just want to stay in bed. Would he change? I saw other children on the ward some with no hair, some with a little hair and some with lots. Some children looked really ill some didn't. Some children were in pain. How would Billy be? Would he cope?
He seemed very excited about the way I had explained the whole Ben 10 Alien scenario and was quite sure that the good aliens would fight the bad ones! Maybe I had explained it the right way he certainly had spirit and fight in him.
The next few days would tell...
I left the quiet room where Juliet had given us the news and walked back to our room. My head was spinning, there were all kinds of thoughts inside my head and I was still tearful. As soon as I walked into the room Billy jumped on me for a cuddle, I cuddled him back like I would never let him go. I knew the next few months were going to be the hardest thing we have ever been though.
Suddenly as I was sat there with him an he was showing me all his Ben 10 toys I had an idea how to tell him!! Billy was so obsessed with Ben 10 and actually thought that he was Ben 10 sometimes so maybe I could use this.
So I decided on a way that I would tell him. I would use the Ben 10 scenario. This would be a way to explain but in a way he wouldn't be scared! He was already struggling with the temperatures, blood pressure etc so I thought it may help. Although he wasn't really scared of being in hospital he was getting fed up of being looked at and having to take medicine.
After my parents had gone and we had eaten I sat and explained to him that he had a bad Alien called Leukaemia inside him and that the doctors were going to give him medicine good aliens to go in and fight off the bad one. He thought this was excellent! He didn't seem scared at all. He was interested in what the good aliens would be called and how big they would be! Luckily he was far too young to understand exactly what he had and what the worse case scenario would be.
I told him that on Thursday he would be having another operation to put a 'landing port' for the good aliens in to make it easier for them to get in and fight the bad aliens. This all made perfect sense to him! One of the nurses came in then and she thought it was a great way to explain to someone as bright and inquisitive as Billy. Hopefully this should make it easier for him to take the medicine and not fight us so much.
Maybe some people will think I handled this wrong and maybe I shouldn't have explained as much as I did. I have always been honest with Billy and I thought I owed it to hm to carry on being as honest as I could now. He did ask why I had been crying and I just said it was because I was tired. At his age he was able to accept that life was that simple and to trust Mum and that everything would be ok. I just wish I thought the same, I was still angry and upset.
Its awful but I was wishing that it had happened to someone else. Selfishly I wished it was someone that had lots of children not me with just one. What had I done that meant my child was singled out and had this terrible disease. As Juliet had explained it might be caused by a virus I racked my brains to try and think where he could have got it. Should I had tried to find a job with less hours so he wasn't in childcare which could have been where it happened. Should I have moved where we now lived and if I had stayed where we were he might not have got it?
So much was going on in my head ,the hardest thing is when you are a single parent you have no one else to turn to. I didn't really have someone to tell my deepest darkest fears to who would understand completely. He was my child no one else's. I could talk to other people but they weren't as close as I was didn't feel that fear and worry that I did. Of course people would understand to a extent but unless its your child you cant 100% understand.
Although I had explained to Billy that he was poorly he didn't feel or even look poorly, he was a live wire up and down, in and out the playroom and playing in the corridor. I kept asking him to come back in, stop making noise. Then one of the nurses said to me, make the most of it in a few weeks you will be wishing that he was doing it. If he was being a nuisance they would say.
Now that was another reality check, what would happen? Would Billy be able to walk? Would he just want to stay in bed. Would he change? I saw other children on the ward some with no hair, some with a little hair and some with lots. Some children looked really ill some didn't. Some children were in pain. How would Billy be? Would he cope?
He seemed very excited about the way I had explained the whole Ben 10 Alien scenario and was quite sure that the good aliens would fight the bad ones! Maybe I had explained it the right way he certainly had spirit and fight in him.
The next few days would tell...
See what I mean - ben 10 mad!
Saturday 14 January 2012
Getting Through It
As I have mentioned we are now nearly 21 months into treatment and to say its a roller coaster ride is an understatement. Nothing can prepare you for the hospital admissions when Billy has an infection or for the times they have to stop treatment due to a low blood count. Being in hospital has to be one of the worst things, you know an admission means at least 3 nights in. As I am a single mum I am the one who is there all the time, although out local hospital provides put up beds there is no way you can sleep on them!
The nurses and doctors are brilliant they know what a worrying time it it. Billy has picked up serious infections that could have killed him. Nothing can prepare you for that. It is the worst feeling because there is really nothing you can do to help you are in the hands of others and you have to trust 100% that they know what they are doing.
When we are out of hospital and Billy is well we fill our time with lots of fun things. Billy loves music too, thankfully my music taste has rubbed off on him and he loves rock and metal. His favourite bands at the moment are Judas Priest, Motorhead and Alice Cooper. I have used this to my advantage ad we have become regular festival goers. Before he was diagnosed we used to go to one a year now its more like 4 a year!
We go to Download, Sonisphere and Camp Bestival every year and then add another on. The rock festivals are the best, the people are so so friendly and really take an interest in Billy. He normally gets to head bang on people's shoulders so he can see the stage! He has seen some of the best bands in the world and I wonder if he wasn't diagnosed with Leukaemia would I have done so much? It was almost a wake up call that life is so precious and so short and you need to make the most of it.
The nurses and doctors are brilliant they know what a worrying time it it. Billy has picked up serious infections that could have killed him. Nothing can prepare you for that. It is the worst feeling because there is really nothing you can do to help you are in the hands of others and you have to trust 100% that they know what they are doing.
When we are out of hospital and Billy is well we fill our time with lots of fun things. Billy loves music too, thankfully my music taste has rubbed off on him and he loves rock and metal. His favourite bands at the moment are Judas Priest, Motorhead and Alice Cooper. I have used this to my advantage ad we have become regular festival goers. Before he was diagnosed we used to go to one a year now its more like 4 a year!
We go to Download, Sonisphere and Camp Bestival every year and then add another on. The rock festivals are the best, the people are so so friendly and really take an interest in Billy. He normally gets to head bang on people's shoulders so he can see the stage! He has seen some of the best bands in the world and I wonder if he wasn't diagnosed with Leukaemia would I have done so much? It was almost a wake up call that life is so precious and so short and you need to make the most of it.
But I now am grateful for every minute that we have and I am trying to make every minute count for us. As well as the festivals, we love the cinema, eating out and travelling. am a big cook so I make lots of lovely treats for us too and love having friends round to eat as we can't always go out if Billy is under the weather. Although its hard to go abroad at the moment due to insurance and treatment we have managed it! I am lucky that I have some very good friends and family around me who are there when i need to talk, sometimes that's all you need a person to listen who doesn't judge! I think what i am trying to say s live every moment you have, make it amazing, make it exciting and make it worth remembering!!!
The picture is Billy at Download 2011
Friday 13 January 2012
Tuesday Continued
So Billy was back and awake. I was so so relieved. Against all the consultants predictions Billy wolfed the whole bar of dairy milk straight down. He then managed to eat toast and marmite and some cereal. He seemed completely non plussed by the whole thing. He wasn't even in any pain from the two procedures! This made me feel better, surely if he wasn't in any pain then he couldn't be ill could he? I went from convinced he had Leukaemia to convinced that they must all be wrong and he had the virus that there was an outside chance it could have been and not Leukaemia.
As the day went on Billy was feeling lots better, although he was still on the IV antibiotics he was in the playroom and then running around the corridors like a madman. This was even better as far as I was concerned, he just had so much energy and was eating well! We now had our own room which was so much better as we didn't have to share a toilet or could just stay in the room and watch TV. The room had a massive window which gave us a view of the city and surrounding area and we loved watching the cars and people.
After lunch my parents came in and although they didn't share my optimism that Billy was ok they tried to be cheerful. I even managed to get lunch and enjoyed it.
Then late afternoon Juliet came back and said she needed to talk to me as she had the results. My dad stayed with Billy whilst my mum came with me to the quiet room, which is totally different to the normal consulting rooms, all sofas and niceness, to get the results. She brought nurse Mel in with her and sat us down.
Billy has Acute Lymphoblastic Leukaemia was what she said. Oh my god, the worst possible thing that she could have said. What was this, what did it mean? I broke down, didn't even try to hide it. I couldn't stop crying, why is this happening to us? Hadn't we been through enough already? Why my son.
Juliet let this sink in and let me try and compose myself then she began to explain more. Acute Lymphoblastic Leukaemia is most common in boys age 2-4 ( Billy was 3 ) it also was a Leukaemia they knew well how to treat. If he had to get Leukaemia then this was 'the best one' to get - Juliets words. The treatment was all Chemotherapy and they would be starting as soon as possible if Iagreed. Of course I was going to agree I said, Juliet said I had made the right choice in having the chemo but in my mind there was no choice. I had to give Billy every chance that he could to beat this disease and to get better.
Juliet gave me lots of leaflets / books on Leukaemia and in particular ALL and said it would be best if I take in what I could now and then read more later, Juliet then explained all she could about ALL, i did listen but to be honest I can remember very little of what she said to me now. One of the things I do remember her saying is that they think it is caused by a virus and if they can find it then they can eradicate it.
Juliet explained that the treatment would be a long time, at least 3 and a half years. This had been worked out through years of research and for some reason boys need a year longer than girls. It would be periods of intensive treatment and periods of maintenance treatment. Billy would need lots of different drugs. She also said that the bone marrow was being sent away to be looked at so the genetic make up of the Leukaemia cells would be determined which again would dictate what level of treatment, ie how much of the intensive treatment he would need.
Juliet said it was great that Billy had been diagnosed so early but this made no difference to wether they could cure hm just on how well he could cope with the chemotherapy. She also explained that he would definitely lose his hair.
Juliet then explained that as a lot of the chemo is intravenous (IV) I would have to decide wether Billy would have a hickman line, sometimes called a wiggly which is a line outside the body or a port a cath which is implanted under the skin and accessed when treatment is given. As Billy was quite an active child and also enjoyed swimming she recommended the port-a-cath. She explained that this would be put in under general anaesthetic and the it would be there for the whole treatment time.
I went along with Juliet and chose the port- a - cath. I thought thus would enable Billy to have as much of a normal life as he could. I as told that the treatment would start properly on Thursday which was went he would have the operation to have the port put in. Thursday seemed an eternity away but there was nothing that could be done until then. Fear gripped me what if he needed treatment now? Juliet answered a few more questions and reiterated that Billy had a very good chance and then we went back in to Billy.
I didn't know what to say or do, how to you tell a child they have Leukaemia....
As the day went on Billy was feeling lots better, although he was still on the IV antibiotics he was in the playroom and then running around the corridors like a madman. This was even better as far as I was concerned, he just had so much energy and was eating well! We now had our own room which was so much better as we didn't have to share a toilet or could just stay in the room and watch TV. The room had a massive window which gave us a view of the city and surrounding area and we loved watching the cars and people.
After lunch my parents came in and although they didn't share my optimism that Billy was ok they tried to be cheerful. I even managed to get lunch and enjoyed it.
Then late afternoon Juliet came back and said she needed to talk to me as she had the results. My dad stayed with Billy whilst my mum came with me to the quiet room, which is totally different to the normal consulting rooms, all sofas and niceness, to get the results. She brought nurse Mel in with her and sat us down.
Billy has Acute Lymphoblastic Leukaemia was what she said. Oh my god, the worst possible thing that she could have said. What was this, what did it mean? I broke down, didn't even try to hide it. I couldn't stop crying, why is this happening to us? Hadn't we been through enough already? Why my son.
Juliet let this sink in and let me try and compose myself then she began to explain more. Acute Lymphoblastic Leukaemia is most common in boys age 2-4 ( Billy was 3 ) it also was a Leukaemia they knew well how to treat. If he had to get Leukaemia then this was 'the best one' to get - Juliets words. The treatment was all Chemotherapy and they would be starting as soon as possible if Iagreed. Of course I was going to agree I said, Juliet said I had made the right choice in having the chemo but in my mind there was no choice. I had to give Billy every chance that he could to beat this disease and to get better.
Juliet gave me lots of leaflets / books on Leukaemia and in particular ALL and said it would be best if I take in what I could now and then read more later, Juliet then explained all she could about ALL, i did listen but to be honest I can remember very little of what she said to me now. One of the things I do remember her saying is that they think it is caused by a virus and if they can find it then they can eradicate it.
Juliet explained that the treatment would be a long time, at least 3 and a half years. This had been worked out through years of research and for some reason boys need a year longer than girls. It would be periods of intensive treatment and periods of maintenance treatment. Billy would need lots of different drugs. She also said that the bone marrow was being sent away to be looked at so the genetic make up of the Leukaemia cells would be determined which again would dictate what level of treatment, ie how much of the intensive treatment he would need.
Juliet said it was great that Billy had been diagnosed so early but this made no difference to wether they could cure hm just on how well he could cope with the chemotherapy. She also explained that he would definitely lose his hair.
Juliet then explained that as a lot of the chemo is intravenous (IV) I would have to decide wether Billy would have a hickman line, sometimes called a wiggly which is a line outside the body or a port a cath which is implanted under the skin and accessed when treatment is given. As Billy was quite an active child and also enjoyed swimming she recommended the port-a-cath. She explained that this would be put in under general anaesthetic and the it would be there for the whole treatment time.
I went along with Juliet and chose the port- a - cath. I thought thus would enable Billy to have as much of a normal life as he could. I as told that the treatment would start properly on Thursday which was went he would have the operation to have the port put in. Thursday seemed an eternity away but there was nothing that could be done until then. Fear gripped me what if he needed treatment now? Juliet answered a few more questions and reiterated that Billy had a very good chance and then we went back in to Billy.
I didn't know what to say or do, how to you tell a child they have Leukaemia....
Thursday 12 January 2012
Tuesday
After a night of next to no sleep for me, but a surprisingly good night for Billy Tuesday came. This should have been a sign for me of how well I would be come acquainted with Red Bull and other caffeine based drinks! The noises of the ward were all around us, nurses talking, phones ringing and doors opening and shutting.
Billy wasn't allowed to eat as he was having a general anaesthetic and he was actually very good about it. I was feeling very nervous, nervous enough to make me sick. What answers would I get today, were they going to be good or bad?
Billy was right near the top of the list of paitients who were going to have procedures. This meant it should be over and done with quite quickly without much waiting about. The waiting is the worst. You have to try to amuse the kids whilst keeping their minds off the fact they are hungry and that they are about to have anaesthetic.
The Nurses came round again, made sure his blood pressure, temperature and other obs were all ok. He had more antibiotics then the consultant came round to check we were ok, explain again what was happening and to get me to sign a couple of consent forms. When you actually read them they are scary. A whole list of things that could happen if things went wrong. Although its a small chance its enough to make you think. My nerves were bad enough then to read the forms thing were magnified again. Was this the right thing to do? Was it right or was it all a big mistake?
Next thing i knew it was the time to take him to the room where he would have his anaesthetic. I carried him in my arms and he seemed quite cheerful. He asked me to make sure he had a big bar of chocolate for when he woke up as that was what he wanted! I remember the consultant saying get him one but only a small one as he might not feel ready for it.
We walked into the room, I was so so scared. This was it, real again. Was e going to be ok? There was what seemed a massive amount of people ( although it was probably only 5). They laid him on the bed at which point he started to get a bit worried and ask me what was going on. This broke my heart. He wanted me to cuddle him which they let me do. Then the anaesthetic was put into his arm, suddenly that was it he was floppy and asleep.
That was it, I broke down. It was too much, I kissed him and they ushered me out. I didn't want to go, I didn't want to leave him. He looked so little so on his own. Watching your child being put to sleep is the worse thing in the world I imagined it was what it would be like to watch him die, one minute there the next nothing. It was horrible I just wanted my baby awake. Why was this happening. I was there on my own which probably make it worse.
One of the doctors followed me out of the room and asked me to sign more paperwork. One of the things that they wanted me to sign for was the chemo. Me sign for chemo to say it was right, what sis I know? How could I sign for something? This was getting more and more scary, They assured me it was all ok and off they went.
I was told to go downstairs get what i needed form the shops and when I came back we were being moved into a room. I thought we were only there for one night, what was going on?? I did literally run downstairs to the shops and get a few bits but I was up and down in about 10 minutes. I wanted to be there to wait for Billy waking up. Why wasn't he straight awake and ready? Whilst he was still asleep they helped me to move all of our stuff into a room.
My phone kept beeping with supportive texts. This didn't really help much although it was nice to hear people cared. I just wanted to have someone there to give me a cuddle, tell me it was all going to be ok and to make everything all right. But there was no one. When was Billy going to wake up, he was my world and I was his....
Billy wasn't allowed to eat as he was having a general anaesthetic and he was actually very good about it. I was feeling very nervous, nervous enough to make me sick. What answers would I get today, were they going to be good or bad?
Billy was right near the top of the list of paitients who were going to have procedures. This meant it should be over and done with quite quickly without much waiting about. The waiting is the worst. You have to try to amuse the kids whilst keeping their minds off the fact they are hungry and that they are about to have anaesthetic.
The Nurses came round again, made sure his blood pressure, temperature and other obs were all ok. He had more antibiotics then the consultant came round to check we were ok, explain again what was happening and to get me to sign a couple of consent forms. When you actually read them they are scary. A whole list of things that could happen if things went wrong. Although its a small chance its enough to make you think. My nerves were bad enough then to read the forms thing were magnified again. Was this the right thing to do? Was it right or was it all a big mistake?
Next thing i knew it was the time to take him to the room where he would have his anaesthetic. I carried him in my arms and he seemed quite cheerful. He asked me to make sure he had a big bar of chocolate for when he woke up as that was what he wanted! I remember the consultant saying get him one but only a small one as he might not feel ready for it.
We walked into the room, I was so so scared. This was it, real again. Was e going to be ok? There was what seemed a massive amount of people ( although it was probably only 5). They laid him on the bed at which point he started to get a bit worried and ask me what was going on. This broke my heart. He wanted me to cuddle him which they let me do. Then the anaesthetic was put into his arm, suddenly that was it he was floppy and asleep.
That was it, I broke down. It was too much, I kissed him and they ushered me out. I didn't want to go, I didn't want to leave him. He looked so little so on his own. Watching your child being put to sleep is the worse thing in the world I imagined it was what it would be like to watch him die, one minute there the next nothing. It was horrible I just wanted my baby awake. Why was this happening. I was there on my own which probably make it worse.
One of the doctors followed me out of the room and asked me to sign more paperwork. One of the things that they wanted me to sign for was the chemo. Me sign for chemo to say it was right, what sis I know? How could I sign for something? This was getting more and more scary, They assured me it was all ok and off they went.
I was told to go downstairs get what i needed form the shops and when I came back we were being moved into a room. I thought we were only there for one night, what was going on?? I did literally run downstairs to the shops and get a few bits but I was up and down in about 10 minutes. I wanted to be there to wait for Billy waking up. Why wasn't he straight awake and ready? Whilst he was still asleep they helped me to move all of our stuff into a room.
My phone kept beeping with supportive texts. This didn't really help much although it was nice to hear people cared. I just wanted to have someone there to give me a cuddle, tell me it was all going to be ok and to make everything all right. But there was no one. When was Billy going to wake up, he was my world and I was his....
Wednesday 11 January 2012
next hospital!
So that was it, we were on our way to another hospital, this was the hospital who would tell us exactly what was what. Stupidly I googled leukaemia before we left so I had all sorts going on in my head. Billy slept most of the way, I spent the time texting or calling people who needed to know what was going on. The fear was still there inside me, I can't remember much of that journey.
We got there and went up to level G where I got my first view of Piam Brown Ward. Bizarrely all I can remember as a first impression is the parrot they have drawn on the wall! They got us straight into a web on the 4 bed ward and looked Billy over. He was quite scared now but he let them do his obs. He had a bit of a temperature so they decided that he needed to have antibiotics to be on the safe side so they put a cannula in. Billy didn't like that.
I met our consultant Juliet for the first time. She is lovely and made me feel that we were definitely in the right hand and that we were going to be looked after well. She explained what would happen the next day, Billy would be put under and a bone marrow sample taken and a does of chemo into his spinal fluid would be administered. I asked did it mean that he definitely had leukaemia, I was still clinging to that small hope. Juliet said they were pretty sure he did and that they needed to start chemo asap.
That was it, reality again, I remember being sat in the playroom when Billy's teacher phoned and breaking down in floods of tears to her. No one could make it right, I felt totally and utterly helpless, normally there is something you can do but there was nothing, it was all out of my hands. What could I do? Was everything ever going to be ok again?
They then gave Billy a fluid drip as he was a bit dehydrated. He didn't like the drip as it restricted him. They brought us some food and we curled up together, Billy went to sleep and then the tears came again. I closed the curtains round the bed to give us some privacy and to be honest I didn't really want to talk to anyone at all. I didn't want to hear anyone elses story just wanted to be us. Really all I wanted was to pack up our stuff and go home and it all be a bad dream.
The texts were coming in thick and fast, so many people cared about us which was amazing, i text back as many as I could. My saving grace over that night and the next few days was my iphone. I could be in touch with the outside world! I had te Internet and facebook and email what else did I need!
Billy wanted to cuddle me all night so mot much sleep as he was so hot and the drip kept beeping and he needed obs done. I was too worried to sleep really, what would tomorrow bring, would it be good news or would it be bad? Billy must have been worried as well but at least he managed to get some rest. I was worried about te general anaesthetic too, he had never had one, would he be ok? Would he be in pain when he woke up, even would he wake up?
Scared wasn't the word, I don't even know how to describe it. Adrenalin and worry took over so the lack of sleep didn't matter. Tomorrow would tell where we stood.
We got there and went up to level G where I got my first view of Piam Brown Ward. Bizarrely all I can remember as a first impression is the parrot they have drawn on the wall! They got us straight into a web on the 4 bed ward and looked Billy over. He was quite scared now but he let them do his obs. He had a bit of a temperature so they decided that he needed to have antibiotics to be on the safe side so they put a cannula in. Billy didn't like that.
I met our consultant Juliet for the first time. She is lovely and made me feel that we were definitely in the right hand and that we were going to be looked after well. She explained what would happen the next day, Billy would be put under and a bone marrow sample taken and a does of chemo into his spinal fluid would be administered. I asked did it mean that he definitely had leukaemia, I was still clinging to that small hope. Juliet said they were pretty sure he did and that they needed to start chemo asap.
That was it, reality again, I remember being sat in the playroom when Billy's teacher phoned and breaking down in floods of tears to her. No one could make it right, I felt totally and utterly helpless, normally there is something you can do but there was nothing, it was all out of my hands. What could I do? Was everything ever going to be ok again?
They then gave Billy a fluid drip as he was a bit dehydrated. He didn't like the drip as it restricted him. They brought us some food and we curled up together, Billy went to sleep and then the tears came again. I closed the curtains round the bed to give us some privacy and to be honest I didn't really want to talk to anyone at all. I didn't want to hear anyone elses story just wanted to be us. Really all I wanted was to pack up our stuff and go home and it all be a bad dream.
The texts were coming in thick and fast, so many people cared about us which was amazing, i text back as many as I could. My saving grace over that night and the next few days was my iphone. I could be in touch with the outside world! I had te Internet and facebook and email what else did I need!
Billy wanted to cuddle me all night so mot much sleep as he was so hot and the drip kept beeping and he needed obs done. I was too worried to sleep really, what would tomorrow bring, would it be good news or would it be bad? Billy must have been worried as well but at least he managed to get some rest. I was worried about te general anaesthetic too, he had never had one, would he be ok? Would he be in pain when he woke up, even would he wake up?
Scared wasn't the word, I don't even know how to describe it. Adrenalin and worry took over so the lack of sleep didn't matter. Tomorrow would tell where we stood.
Tuesday 10 January 2012
5 little words
Well that was it, five little words, 'we think Billy has leukaemia' and my world was destroyed. Not turned upside down, not a bit different, destroyed. The 19th April 2010 the day our world was never the same again. I can honestly say that I have never ever been told news like it. Billy was my baby, my world. I felt sick, I felt dizzy I felt numb. My immediate reaction was to grab hold of Billy and hold him tight. He just decided to shout at the consultant and ask him why he had made his mum cry! He had no idea what the words meant, this I guess is a good thing.
Martin, Nikki and my mum were great, I think they could see I was in so much shock. Martin did try and say more but I couldn't tell you what he said. What was I going to do? Why was this happening to us? Was he right, was Billy ill.
The first thing I said was "are you sure". I needed someone to say no actually we might be wrong he could have something else, something that wasn't a cancer. But Martin replied we are 99.9% sure there is a small possibility is could be a rare virus but that is a minute chance. Ok so this was as bad as it could get, or could it be the virus. My mind was on overdrive.
I remember just holding Billy and then looking at him, wondering why this had happened to him, he was just a baby, an innocent, a child with so much life in front of him. I was vaguely aware of my mum trying to hug me and being in tears herself. I think Nikki tried to hold my hand but I can't be sure the whole thing is a blur.
Martin gave me a minute then told me what was going to happen next. We needed to go to Southampton hospital for a Bone Marrow test the next morning. This would confirm Billy had leukaemia and what type of leukaemia he had. I wasn't even aware there were different types of Leukaemia, now I'm a bit of an expert. He said they were expecting us this afternoon by 3 so they could talk to me, see Billy and start things going. It was best if we went then as Billy would need to be starved from midnight.
Then suddenly, bang, another emotion took over, fear. Was my baby going to be ok? Was my baby going to die, I didn't know a lot about Leukaemia at all at this point all I knew was it was a cancer and in my mind cancer was deadly. Oh my god, my child had cancer. Why did he have it, what was going to happen to him. I couldn't cope with this at all. You hear the stories of children dying from Leukaemia was this going to happen to Billy?
Its just me and Billy so I didn't have anyone who could really truly share what I was feeling, he's just my son and no one would understand.
I made my worst fear vocal, I asked Martin was he going to die? Martin couldn't answer that. That made me worse, tears were falling at a mad speed now. All that was going through my mind was the worst case scenario, why was this happening? Was it my fault? Through all this Martin and Nikki were brilliant, they didn't try and stop me from saying what I needed to and made me feel like they had all the time in the world.
Martin said use his phone to phone whoever I needed to somehow I managed to phone work. Tina was amazing, she let me cry down the phone as I explained I wouldn't be back in and I wasn't sure when I would be back. Unbeknown to me Martin had already spoken to my gp and arranged a sick note to cover the first two weeks I would need. I then phoned Billy's nursery to let them know he wouldn't be back in and could they let the school know.
Nursery too were great, I sobbed my heart out as I tried to explain. The manager said he would sort everything, not to worry just to get myself and Billy sorted out. I made one more phone call in the office to my good friend Steve and asked him to let a few others know. Once I had told people it was even more real, there was still a part of me hoping that they were wrong it was a virus but in my heart of hearts I knew.
Martin went through the arrangements, what we would need, who to ask for etc. To be honest a lot of this went over my head, i still kept cuddling Billy. The only question I asked was would we be able to shower up there.Bizarre but that's what went though my head! I didn't want him out of my sight or even out of my arms. My mum then phoned my Dad to see if he would take us to Southampton hospital as I wasn't in the frame of mind to drive.
After what now seems like 15 minutes but what must have been about an hour, I got up to go. When I stood up I was shaking. When I walked into the room life was normal, now what was going to happen to us, was life going to be normal ever again? I remember walking out of the ward thinking everyone was staring at me as I was crying, truth is I doubt anyone was but it felt like it.
I arranged what time I would be picked up then we walked out into the sunshine. I phoned Steve back and was shaking and crying he was so so good, just told me everything was going to be ok
Somehow I made it home, its only a mile away but it seemed further. Billy was asking me the whole way what was wrong. I had to pull myself together and act normal so he didn't get worried. I told him we were going on a little holiday so they could make him better. He seemed fine with this and we got home, got packed and washed and ready. He took some of his toys, including the new bakugan I'd bought him. I had a few more tears when he wasn't watching.
My best friend phoned, she could barely understand me but when she did she was in tears too. I was under strict instructions to phone as soon as I knew more. Suddenly my parents were there to take us to Southampton. The next part was about to begin...
Martin, Nikki and my mum were great, I think they could see I was in so much shock. Martin did try and say more but I couldn't tell you what he said. What was I going to do? Why was this happening to us? Was he right, was Billy ill.
The first thing I said was "are you sure". I needed someone to say no actually we might be wrong he could have something else, something that wasn't a cancer. But Martin replied we are 99.9% sure there is a small possibility is could be a rare virus but that is a minute chance. Ok so this was as bad as it could get, or could it be the virus. My mind was on overdrive.
I remember just holding Billy and then looking at him, wondering why this had happened to him, he was just a baby, an innocent, a child with so much life in front of him. I was vaguely aware of my mum trying to hug me and being in tears herself. I think Nikki tried to hold my hand but I can't be sure the whole thing is a blur.
Martin gave me a minute then told me what was going to happen next. We needed to go to Southampton hospital for a Bone Marrow test the next morning. This would confirm Billy had leukaemia and what type of leukaemia he had. I wasn't even aware there were different types of Leukaemia, now I'm a bit of an expert. He said they were expecting us this afternoon by 3 so they could talk to me, see Billy and start things going. It was best if we went then as Billy would need to be starved from midnight.
Then suddenly, bang, another emotion took over, fear. Was my baby going to be ok? Was my baby going to die, I didn't know a lot about Leukaemia at all at this point all I knew was it was a cancer and in my mind cancer was deadly. Oh my god, my child had cancer. Why did he have it, what was going to happen to him. I couldn't cope with this at all. You hear the stories of children dying from Leukaemia was this going to happen to Billy?
Its just me and Billy so I didn't have anyone who could really truly share what I was feeling, he's just my son and no one would understand.
I made my worst fear vocal, I asked Martin was he going to die? Martin couldn't answer that. That made me worse, tears were falling at a mad speed now. All that was going through my mind was the worst case scenario, why was this happening? Was it my fault? Through all this Martin and Nikki were brilliant, they didn't try and stop me from saying what I needed to and made me feel like they had all the time in the world.
Martin said use his phone to phone whoever I needed to somehow I managed to phone work. Tina was amazing, she let me cry down the phone as I explained I wouldn't be back in and I wasn't sure when I would be back. Unbeknown to me Martin had already spoken to my gp and arranged a sick note to cover the first two weeks I would need. I then phoned Billy's nursery to let them know he wouldn't be back in and could they let the school know.
Nursery too were great, I sobbed my heart out as I tried to explain. The manager said he would sort everything, not to worry just to get myself and Billy sorted out. I made one more phone call in the office to my good friend Steve and asked him to let a few others know. Once I had told people it was even more real, there was still a part of me hoping that they were wrong it was a virus but in my heart of hearts I knew.
Martin went through the arrangements, what we would need, who to ask for etc. To be honest a lot of this went over my head, i still kept cuddling Billy. The only question I asked was would we be able to shower up there.Bizarre but that's what went though my head! I didn't want him out of my sight or even out of my arms. My mum then phoned my Dad to see if he would take us to Southampton hospital as I wasn't in the frame of mind to drive.
After what now seems like 15 minutes but what must have been about an hour, I got up to go. When I stood up I was shaking. When I walked into the room life was normal, now what was going to happen to us, was life going to be normal ever again? I remember walking out of the ward thinking everyone was staring at me as I was crying, truth is I doubt anyone was but it felt like it.
I arranged what time I would be picked up then we walked out into the sunshine. I phoned Steve back and was shaking and crying he was so so good, just told me everything was going to be ok
Somehow I made it home, its only a mile away but it seemed further. Billy was asking me the whole way what was wrong. I had to pull myself together and act normal so he didn't get worried. I told him we were going on a little holiday so they could make him better. He seemed fine with this and we got home, got packed and washed and ready. He took some of his toys, including the new bakugan I'd bought him. I had a few more tears when he wasn't watching.
My best friend phoned, she could barely understand me but when she did she was in tears too. I was under strict instructions to phone as soon as I knew more. Suddenly my parents were there to take us to Southampton. The next part was about to begin...
Monday 9 January 2012
Diagnosis part 2
Well waiting is horrible isn't it. As it turned out we only had to wait six days, but six days is a long time when you want to know whats wrong with your child. Luckily one thing that took my mind off things was work. My job is quite stress full and it made me think about something other than the hospital and the tests and when I would know.
My manager Tina was wonderful, she seemed to know instinctively when i needed cheering up, when I needed to talk and even when I needed a few tears. All my colleagues with the exception of one were amazing, they made me laugh and distracted me. They let me know they cared and were thinking of us but were very good at making me work!
Billy didn't show any cares at all. He was happy at nursery and his school has a nursery year where he had been since September and he was learning loads! He had done so well with the blood tests on Tuesday and was showing off the mark!
Friday came and Billy and I had a lovely tea and were just settling down to watch a DVD when the phone rang. It was Martin the consultant asking me all kinds of questions, had Billy been near woods where deer played, had he been scratched by a cat or near a rat. I said no to all of them and then he said maybe it was glandular fever. He would need to do more bloods on Monday so I was to make sure they hospital put on magic cream first to hurry things along before we saw him.
I couldn't put my finger on why but that call unnerved me, made me feel scared and nervous. That night I got Billy to sleep, he was shattered and went off easily, then I got on the phone to my friends. I talked and talked and everyone was there to listen to me, they offered advice and shared my fears but no one could take away the feelings. I was convinced it was serious and I hardly slept a wink.
Saturday I took Billy swimming and if you had seen him you wouldn't have thought there was a thing wrong with him, he loved the pool! We went shopping the had friends round for takeaway that night just the normal way our lives were, probably the last 'normal' weekend we would have.
Next day was lovely and sunny so we went to the shops then to our local park. As Billy had been so god at the hospital I treated his to a new toy, his first ever bakugan a blue one. Funny how things like that stick in your head. Our park is gorgeous right next to the sea, full of open spaces to run in. I sat down with the paper and Billy's buggy which he insisted I bring as he didn't want to walk much, I wasn't sure if he was being lazy or not.
I chilled out and read the paper and Billy played. After only a few minutes Billy was back. He said that he was tired and needed to rest. Surely a 3 year old should be running around having fun in the sun? We stayed out for a while then home for dinner and chill out time.
Monday morning came just like normal, got Billy ready for nursery and took him in then I went to work. I got in a bit early as I knew I needed to make up the time for the hospital appointment. It just seemed a normal morning, busy but just like normal. I left at 11.30 to go and get Billy, I didn't say any real goodbyes as I thought I would be back later.
I met my mum at the hospital and we went and checked in. I told the receptionist Billy needed magic cream on but she said no he didn't. I argued the point but she said no. I remember moaning to my mum that now we would be here longer, how shallow was I? Worried more about getting back to work that what Billy needed.
Martin called us in, he had a community nurse in with him and offered us tea and biscuits. This didn't register that there was someone else ill. I was just so wanting to know what he had found out about Billy being ill. Billy of course wanted biscuits so I said I would have a cup of tea. Martin introduced us to Nikki the nurse. It was all very nice and pleasant and Billy was loving the biscuits.
Then Martin said " we think Billy has Leukaemia". Five words. My whole world collapsed. I remember feeling sick, then hot and cold the the tears came. To be honest I can't remember what was said next. All i do remember is that Nikki, Martin and my mum tried to console me or give me tissues. At this point Billy turned round and shouted at Martin, " you've made my mum cry, you nasty man".
Five words, no more normality. How life was going to change...
My manager Tina was wonderful, she seemed to know instinctively when i needed cheering up, when I needed to talk and even when I needed a few tears. All my colleagues with the exception of one were amazing, they made me laugh and distracted me. They let me know they cared and were thinking of us but were very good at making me work!
Billy didn't show any cares at all. He was happy at nursery and his school has a nursery year where he had been since September and he was learning loads! He had done so well with the blood tests on Tuesday and was showing off the mark!
Friday came and Billy and I had a lovely tea and were just settling down to watch a DVD when the phone rang. It was Martin the consultant asking me all kinds of questions, had Billy been near woods where deer played, had he been scratched by a cat or near a rat. I said no to all of them and then he said maybe it was glandular fever. He would need to do more bloods on Monday so I was to make sure they hospital put on magic cream first to hurry things along before we saw him.
I couldn't put my finger on why but that call unnerved me, made me feel scared and nervous. That night I got Billy to sleep, he was shattered and went off easily, then I got on the phone to my friends. I talked and talked and everyone was there to listen to me, they offered advice and shared my fears but no one could take away the feelings. I was convinced it was serious and I hardly slept a wink.
Saturday I took Billy swimming and if you had seen him you wouldn't have thought there was a thing wrong with him, he loved the pool! We went shopping the had friends round for takeaway that night just the normal way our lives were, probably the last 'normal' weekend we would have.
Next day was lovely and sunny so we went to the shops then to our local park. As Billy had been so god at the hospital I treated his to a new toy, his first ever bakugan a blue one. Funny how things like that stick in your head. Our park is gorgeous right next to the sea, full of open spaces to run in. I sat down with the paper and Billy's buggy which he insisted I bring as he didn't want to walk much, I wasn't sure if he was being lazy or not.
I chilled out and read the paper and Billy played. After only a few minutes Billy was back. He said that he was tired and needed to rest. Surely a 3 year old should be running around having fun in the sun? We stayed out for a while then home for dinner and chill out time.
Monday morning came just like normal, got Billy ready for nursery and took him in then I went to work. I got in a bit early as I knew I needed to make up the time for the hospital appointment. It just seemed a normal morning, busy but just like normal. I left at 11.30 to go and get Billy, I didn't say any real goodbyes as I thought I would be back later.
I met my mum at the hospital and we went and checked in. I told the receptionist Billy needed magic cream on but she said no he didn't. I argued the point but she said no. I remember moaning to my mum that now we would be here longer, how shallow was I? Worried more about getting back to work that what Billy needed.
Martin called us in, he had a community nurse in with him and offered us tea and biscuits. This didn't register that there was someone else ill. I was just so wanting to know what he had found out about Billy being ill. Billy of course wanted biscuits so I said I would have a cup of tea. Martin introduced us to Nikki the nurse. It was all very nice and pleasant and Billy was loving the biscuits.
Then Martin said " we think Billy has Leukaemia". Five words. My whole world collapsed. I remember feeling sick, then hot and cold the the tears came. To be honest I can't remember what was said next. All i do remember is that Nikki, Martin and my mum tried to console me or give me tissues. At this point Billy turned round and shouted at Martin, " you've made my mum cry, you nasty man".
Five words, no more normality. How life was going to change...
Sunday 8 January 2012
Diagnosis
Well this is a hard post to write. Even now 20 months on I still find the feelings and emotions I felt this time so hard and so raw. I can honestly say I would want my worst enemy to go through what I did, but we've made it this far so I guess I am doing something right!
I had known that something was wrong with Billy for a few months, don't ask me how I knew I just knew. I started taking him to the doctors just before Christmas as his glands in his neck were up like little peas. I didn't get our doctor but one of the others at the surgery who put it down to the fact he had the swine flu jab a few weeks before. In January his glands were still the same, his nursery had spotted it too and mentioned to me so back off to the doctors we went. Again a different doctor and again I was told it was nothing, he had a cold or a virus.
This process was repeated a couple more times and I began to doubt myself, was I being a neurotic mother? I went back just before Easter for the 5th time and the doctor we saw, who I will be forever grateful to, said that if they were still up in a month he would refer Billy for blood tests. I went home a bit more relieved that someone was taking me seriously but I still had nagging in my head. I was sure that there was something very badly wrong.
It wasn't like Billy was what anyone would call 'ill'. It was just a number of things. He seemed to be a lot more tired, having afternoon sleeps again which he hadn't for a year or so. He had less energy than before, wasn't interested in much. He seemed to be getting more bruises than before and to me he seemed pale. A few friends and family said they couldn't see it but i could.
After a bad night worrying about everything I phoned and spoke to the doctor and said I would like the test sooner and even if I had to pay could i get them done? He said straight away if it was worrying me this much then he would organise it asap. As it was Easter the next appointment we could have was the next Wednesday morning.
Easter came and went, we surrounded ourselves with friends and had a great time, lots of lovely food and I did an Easter Egg hunt indoors for Billy. I did confide in my closest friends I was worried but they kept my spirits up!
Wednesday morning came and off we went, magic cream was applied and the blood test done, even that was quite scary for us, but Billy took it in his stride and went straight back to nursery after ward. The next night I had a phone call from the doctor saying that he had reviewed our notes and Billy was going to be referred to a consultant. He said not to panic but it might be quite soon as Billy was young. It did seem odd to me but was pleased something was happening. The next night, Friday, i got a phone call from Martin, who is now our consultant, at 7.30 at night saying he would like to see Billy asap, which was Tuesday at 11am.
Now this scared the life out of me, I honestly realised that my worst fears were starting to come true. I phoned my mum and close friends and they all seemed a bit concerned for us too. I decided I needed a glass or two of wine to calm me down, well who wouldn't!! I am lucky that I had a few friends to talk to death that night.
I took Billy on the Tuesday to see the consultant and my mum came along. At one point my mum had said I was wasting people's time and Billy was fine, how she would come to regret that. The consultant was lovely, made me feel at ease, examined Billy all over. Typically Billy was Billy, full of life, full of 3 year old attitude and full of himself!The consultant's thought the glands being up was odd and the reason needed to be found. He actually said he was 99% sure that Billy didn't have leukaemia as he looked too well but he was going to have to test to rule it out.
Billy had to go and have another blood test and a chest xray and then we could go. I was fitting these appointments into my lunch hours so I was rushing about a lot, the guilt of a working mum. Billy went back to nursery again quite happily and I remember my mum saying at least it was nothing horrible like Leukaemia.
I remember all this like it was yesterday, the fear and up and downs I was experiencing were very bad, I had stoped smoking a few months before, I had never smoked in front of Billy just the odd cigarette when I was out, and even this didn't make me crave. I went through various outcomes in my head, googled his symptoms which to be honest was the worst thing that I could have done. I was then presented with lots of differnt scenarios from Leukaemia to Hogkins Lymphoma. Why oh why did I google it?
What was wong with my son? Was I a bit paranoid or was I doing the right thing? The blood tests were upsetting for him. One of the reasons I was so pushy is that Billy had been hospitalized 2 years previously with infected Lymph glands that required a lot of treatment and no one could explain why he had them. A doctor told me at the time that if they came up again within the year Billy could have an immune system problem. Although it was over the year was this it? Did he have an issue with his immune system?
As I have said before I am a single mum and it is just the two of us, no one else. His dad is not involved with us, but thats another story. I had to make all the decisions on my own, no one to discuss it with, no one to really be able to talk my fears over with. In the middle of the night when I was in tears who could i tell? who could i bounce thoughts off? I could cope with being a single mum but this added a whole new dimension to it. What if I should have done more? Should I have pushed for more tests before?
Anyone who goes through this will tell you this is the scariest thing, the waiting, even though its not that long, the time drags, and drags. Your mind thinks of all kinds of things, then it magnifies those thoughts and it is the only thing that you can think of. The first thing on your mind is your child and the last thing at night.
Still I got up every day and I went to work. I made sure Billy and I did things like normal, he had school and swimming lessons. We has little treats like Dominos Pizza, went to the park, saw friends and I treid to forget it all! I would much rather have been able to be at home and just be me and Billy until we knew what was going on but that wouldn't pay our bills.
If I thought this was bad, it was only going to get worse, sometimes the not knowing is a good thing, knowing just makes it worse! Next blog I will tell you what happened to us next.
I had known that something was wrong with Billy for a few months, don't ask me how I knew I just knew. I started taking him to the doctors just before Christmas as his glands in his neck were up like little peas. I didn't get our doctor but one of the others at the surgery who put it down to the fact he had the swine flu jab a few weeks before. In January his glands were still the same, his nursery had spotted it too and mentioned to me so back off to the doctors we went. Again a different doctor and again I was told it was nothing, he had a cold or a virus.
This process was repeated a couple more times and I began to doubt myself, was I being a neurotic mother? I went back just before Easter for the 5th time and the doctor we saw, who I will be forever grateful to, said that if they were still up in a month he would refer Billy for blood tests. I went home a bit more relieved that someone was taking me seriously but I still had nagging in my head. I was sure that there was something very badly wrong.
It wasn't like Billy was what anyone would call 'ill'. It was just a number of things. He seemed to be a lot more tired, having afternoon sleeps again which he hadn't for a year or so. He had less energy than before, wasn't interested in much. He seemed to be getting more bruises than before and to me he seemed pale. A few friends and family said they couldn't see it but i could.
After a bad night worrying about everything I phoned and spoke to the doctor and said I would like the test sooner and even if I had to pay could i get them done? He said straight away if it was worrying me this much then he would organise it asap. As it was Easter the next appointment we could have was the next Wednesday morning.
Easter came and went, we surrounded ourselves with friends and had a great time, lots of lovely food and I did an Easter Egg hunt indoors for Billy. I did confide in my closest friends I was worried but they kept my spirits up!
Wednesday morning came and off we went, magic cream was applied and the blood test done, even that was quite scary for us, but Billy took it in his stride and went straight back to nursery after ward. The next night I had a phone call from the doctor saying that he had reviewed our notes and Billy was going to be referred to a consultant. He said not to panic but it might be quite soon as Billy was young. It did seem odd to me but was pleased something was happening. The next night, Friday, i got a phone call from Martin, who is now our consultant, at 7.30 at night saying he would like to see Billy asap, which was Tuesday at 11am.
Now this scared the life out of me, I honestly realised that my worst fears were starting to come true. I phoned my mum and close friends and they all seemed a bit concerned for us too. I decided I needed a glass or two of wine to calm me down, well who wouldn't!! I am lucky that I had a few friends to talk to death that night.
I took Billy on the Tuesday to see the consultant and my mum came along. At one point my mum had said I was wasting people's time and Billy was fine, how she would come to regret that. The consultant was lovely, made me feel at ease, examined Billy all over. Typically Billy was Billy, full of life, full of 3 year old attitude and full of himself!The consultant's thought the glands being up was odd and the reason needed to be found. He actually said he was 99% sure that Billy didn't have leukaemia as he looked too well but he was going to have to test to rule it out.
Billy had to go and have another blood test and a chest xray and then we could go. I was fitting these appointments into my lunch hours so I was rushing about a lot, the guilt of a working mum. Billy went back to nursery again quite happily and I remember my mum saying at least it was nothing horrible like Leukaemia.
I remember all this like it was yesterday, the fear and up and downs I was experiencing were very bad, I had stoped smoking a few months before, I had never smoked in front of Billy just the odd cigarette when I was out, and even this didn't make me crave. I went through various outcomes in my head, googled his symptoms which to be honest was the worst thing that I could have done. I was then presented with lots of differnt scenarios from Leukaemia to Hogkins Lymphoma. Why oh why did I google it?
What was wong with my son? Was I a bit paranoid or was I doing the right thing? The blood tests were upsetting for him. One of the reasons I was so pushy is that Billy had been hospitalized 2 years previously with infected Lymph glands that required a lot of treatment and no one could explain why he had them. A doctor told me at the time that if they came up again within the year Billy could have an immune system problem. Although it was over the year was this it? Did he have an issue with his immune system?
As I have said before I am a single mum and it is just the two of us, no one else. His dad is not involved with us, but thats another story. I had to make all the decisions on my own, no one to discuss it with, no one to really be able to talk my fears over with. In the middle of the night when I was in tears who could i tell? who could i bounce thoughts off? I could cope with being a single mum but this added a whole new dimension to it. What if I should have done more? Should I have pushed for more tests before?
Anyone who goes through this will tell you this is the scariest thing, the waiting, even though its not that long, the time drags, and drags. Your mind thinks of all kinds of things, then it magnifies those thoughts and it is the only thing that you can think of. The first thing on your mind is your child and the last thing at night.
If I thought this was bad, it was only going to get worse, sometimes the not knowing is a good thing, knowing just makes it worse! Next blog I will tell you what happened to us next.
Fund Raising
Another reason I thought that i would get back onto twitter is that I want to thank and help the charities that have helped us so far. You honestly don't realise just how important is is to recieve the help that they offer, financially, practically and emotionally. It is just one less thing to worry about and believe me at the time you hae more that enough worries!
A lot of charities have great profiles and a lot of people are aware of them but there are a lot who don't have that and are run completely by volunteers and every single penny raised goes to help people who need it. These people and the charities they work for are total hero's You may see some of them stood in local shops with a collecting tin, but some are completely behind the scenes.
I will never ever take anything for granted again, the help and support I have recived has humbled me totally, to hopefully be able to help them back would be great. I did a small fundraising feature before christmas that made some much needed funds for our local charity and lets hope I can do a lot, lt more to help them in the future.
A lot of charities have great profiles and a lot of people are aware of them but there are a lot who don't have that and are run completely by volunteers and every single penny raised goes to help people who need it. These people and the charities they work for are total hero's You may see some of them stood in local shops with a collecting tin, but some are completely behind the scenes.
I will never ever take anything for granted again, the help and support I have recived has humbled me totally, to hopefully be able to help them back would be great. I did a small fundraising feature before christmas that made some much needed funds for our local charity and lets hope I can do a lot, lt more to help them in the future.
Introduction
This is Billy's Journey. It is the story of how my son has coped with his battle through Leukaemia from diagnosis onwards. Although I am starting this 20 months from when he was diagnosed I am hoping it will be a good record of everything that we have been through!
Billy is 5 now, he as only 3 when he was diagnosed. He has faced this whole thing head on and with extreme courage. I hardy ever hear him complain even when it is obvious that he is in pain or just fed up with the constant steam of hospital visits and different treatments and medication. I thought it is a good idea to do this to show him how proud of him I am and to show the rest of the world just how brave and strong he is!
I like to think that when he is older he will be able to look back at all this and see what he went through, how well he coped and just how amazing he is. I hope it will inspire him to always follow his dreams and achieve everything he always wants. It can't be easy for him at all, in fact I doubt that I would be even half as brave as him if I was in the same boat.
It is only the two of us so I think I can blog the journey we have been through and that we will still be experiencing truthfully and factually. I hope you all enjoy reading this and agree with me how brave my son is!
Billy is 5 now, he as only 3 when he was diagnosed. He has faced this whole thing head on and with extreme courage. I hardy ever hear him complain even when it is obvious that he is in pain or just fed up with the constant steam of hospital visits and different treatments and medication. I thought it is a good idea to do this to show him how proud of him I am and to show the rest of the world just how brave and strong he is!
I like to think that when he is older he will be able to look back at all this and see what he went through, how well he coped and just how amazing he is. I hope it will inspire him to always follow his dreams and achieve everything he always wants. It can't be easy for him at all, in fact I doubt that I would be even half as brave as him if I was in the same boat.
It is only the two of us so I think I can blog the journey we have been through and that we will still be experiencing truthfully and factually. I hope you all enjoy reading this and agree with me how brave my son is!
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