Just after 6 weeks into treatment my fears were realised. Billy had been for a lumber puncture that morning and when we came home he just went downhill. He had seemed fine, obviously hungry but fine. I checked his temperature and it was 37.8. Panic time!!! I looked in the book and it said to check again in 4 hours. I couldn't wait that long, I left it 45 mins and it had gone up to 38.3. I phoned the local hospital who said to bring him straight in.
I wasn't sure what to pack etc so just grabbed a bunch of odd bits, the book and a few things to eat and off we went. What was later to become routine to me, Billy was admitted as we have what is called open access. This means we go straight up to the ward and into a bed. He had to be swabbed, wee in a bottle and then have his port accessed for bloods, again all this would become part of his routine every single time he was admitted.
I was getting a bit jumpy because he just went downhill so quickly and by this point his temperature had gone up to 39. The nurses were fab and just said don't worry, he is in the best place. Although I knew this was true, seeing your child being admitted to hospital for the second time in just over a month is quite scary. Again I was in the position where I couldn't do anything to help Billy and make things better.
The doctors came and took a look at him, listened to his chest, looked in his ears and checked everything. They couldn't find anything obvious so prescibed IV antibiotics which they started straight away. They assured me he would be right as rain within a few days. Billy was lying in the bed so so hot and looking so poorly by this point. He wasn't really interested in food but with a lot of cajoling he drank something.
It was so so scary for me. He looked so so tiny and he was so unhappy, he just wanted me he didn't want to be looked at and poked around. He kept saying his port was really hurting when they accessed it but I was told it looked fine and was working well when I asked for it to be looked at. I was so pleased that we had our own room as it meant I would be able to have some sleep.
It was the start of the half term and we had planned a few things to do so I kept talking to Billy about these to try and keep his spirits up. He just seemed so so poorly, he was lifeless. The nurses said not to worry within a few days on antibiotics he would be well on the way to recovery. He was being given calpol every 4 hours to manage his temperature and then they introduced ibuprofen as his temperature was so high.
It was a night full of worry, every time the drugs wore off his temperature spiked up again. I didn't knwo what to do, i tried stripping him off and putting the fan on him. Nothing worked, the temperature stayed up. I didn't sleep at all just stayed up holding his hand and trying to comfort him, what else could I do.
The doctors didn't seem that worried they thought it was an infection and the antibiotics would work. No one seemed to think it was anything unusual, to me it was a huge deal as it was the first febrile neutrophenic episode we had. And that was the start of a week in hospital....
Monday 20 February 2012
Sunday 19 February 2012
The way is was going to be
Well life had changed. Well when I say changed I mean totally and utterly changed. To be honest I doubt that I would recognise our old life now. Every morning and evening, and several time in between if I was worried, I was taking Billy's temperature. I was so paranoid about it, what if it was up, was he ill, what did I do? He also had to have medicines morning and night, extra ones at weekends and I had it all down to a quite good routine now.
The hospital visits became second nature to us now and Billy was becoming very used to the way things happened when we were there and becoming very used to the staff. It made things a bit more bearable, as going into see the consultant knowing that your child was going to have to have something done isn't nice. I still don't think that I am used to that even now, nearly 22 months later. Your first instinct is to protect them and not let anyone hurt them so having him upset is the worst thing in the world.
Although you know that this is the best thing for them and the only way of beating this nasty disease the mum part of you hates it. I remember holding Billys hand and covering his eyes so he wouldn't cry as much. Heartbreaking especially when they are looking at you to stop this and stop them being hurt. You could tell some things really hurt him and being on my own there was no one else I could ask to go in with him, it was all down to me.
Being on my own with Billy did have a lot of advantages through the treatment though. On the bad days when Billy was under the weather or tired we could go to bed or have a duvet day without having to worry about anyone else's feelings or do things we didn't want to in order to fit around someone else.
Billy was getting used to being back at school, I think just seeing his friends and being back to being a normal boy boosted his spirits. With the exception of the Piam Brown appointments we were quite lucky and managed to work them around school. He did give me one major scare though, not long after he started back. I had dropped Billy off and then gone to a Comet to order us a new fridge after one of the charities had given us a voucher for a new one. Now the comet store is literally a 3 mile drive from school and I'd gone straight there. Whilst I was finishing buying the fridge a had a call on the mobile, it was the school. My heart dropped, I felt sick. His TA said that Billy had said he wasn't feeling well and wanted to go home. I was out of comet like a shot and at the school. When I picked him up he looked fine, didn't have a temperature. We got in the car and me being fussy, panicky mum was asking whats wrong, are you ok? Billy just looked straight at me and said Yes Mum, I just didn't feel like school today!!
I must admit I saw the funny side to that, and took him home. It just showed he still had his sense of humour and he was still a right cheeky little boy with a massive personality! There were so many things that happened that made me realise that although certain aspects of our lives had changed we were both still the same underneath.
I have mentioned before that the diagnosis has made me look at life differently, made me realise that life is for living and that you need to make everyday worth it. We have done things that we may well not have done if Billy hadn't been diagnosed. The life was totally different, the bits we needed to take if we went out, the countless hospital visits, the many phone calls. The having to watch my child unhappy as he was having various procedures. But we have tried to be positive and I think this has made a difference in our lives.
Don't get me wrong I still have days when I want to shut the door, close the curtains and cry my eyes out, but I try and do lots with Billy, go lots of places, see lots of things. These memories make the darker days easier to cope with and give us something to focus on when things are bad. Planning things although not easy if we can gives us something to aim for.
Life is for living and we are trying to make sure we do.
The hospital visits became second nature to us now and Billy was becoming very used to the way things happened when we were there and becoming very used to the staff. It made things a bit more bearable, as going into see the consultant knowing that your child was going to have to have something done isn't nice. I still don't think that I am used to that even now, nearly 22 months later. Your first instinct is to protect them and not let anyone hurt them so having him upset is the worst thing in the world.
Although you know that this is the best thing for them and the only way of beating this nasty disease the mum part of you hates it. I remember holding Billys hand and covering his eyes so he wouldn't cry as much. Heartbreaking especially when they are looking at you to stop this and stop them being hurt. You could tell some things really hurt him and being on my own there was no one else I could ask to go in with him, it was all down to me.
Being on my own with Billy did have a lot of advantages through the treatment though. On the bad days when Billy was under the weather or tired we could go to bed or have a duvet day without having to worry about anyone else's feelings or do things we didn't want to in order to fit around someone else.
Billy was getting used to being back at school, I think just seeing his friends and being back to being a normal boy boosted his spirits. With the exception of the Piam Brown appointments we were quite lucky and managed to work them around school. He did give me one major scare though, not long after he started back. I had dropped Billy off and then gone to a Comet to order us a new fridge after one of the charities had given us a voucher for a new one. Now the comet store is literally a 3 mile drive from school and I'd gone straight there. Whilst I was finishing buying the fridge a had a call on the mobile, it was the school. My heart dropped, I felt sick. His TA said that Billy had said he wasn't feeling well and wanted to go home. I was out of comet like a shot and at the school. When I picked him up he looked fine, didn't have a temperature. We got in the car and me being fussy, panicky mum was asking whats wrong, are you ok? Billy just looked straight at me and said Yes Mum, I just didn't feel like school today!!
I must admit I saw the funny side to that, and took him home. It just showed he still had his sense of humour and he was still a right cheeky little boy with a massive personality! There were so many things that happened that made me realise that although certain aspects of our lives had changed we were both still the same underneath.
I have mentioned before that the diagnosis has made me look at life differently, made me realise that life is for living and that you need to make everyday worth it. We have done things that we may well not have done if Billy hadn't been diagnosed. The life was totally different, the bits we needed to take if we went out, the countless hospital visits, the many phone calls. The having to watch my child unhappy as he was having various procedures. But we have tried to be positive and I think this has made a difference in our lives.
Don't get me wrong I still have days when I want to shut the door, close the curtains and cry my eyes out, but I try and do lots with Billy, go lots of places, see lots of things. These memories make the darker days easier to cope with and give us something to focus on when things are bad. Planning things although not easy if we can gives us something to aim for.
Life is for living and we are trying to make sure we do.
Monday 13 February 2012
The Steroids took effect..
I have explained before that part of Billy's treatment meant that he needed to have steroids, dexamethasone. I was warned at the start of treatment that the steroids would cause some nasty side effects, such as weight gain, mood swings, lack of sleep and food cravings. I was even given a leaflet explaining them and advice on how to handle them but nothing could prepare me for the reality of what the drugs were going to do to Billy.
He would spend the first 4 weeks of treatment on a high dose of steroids and then 2 more where the dose would be gradually decreased as part of the start treatment or the intensive treatment. He would then need to take them in other intensive treatments and as part of the maintenance treatment cycle for 5 days every 28 days.
Billy started the steroids whilst we were still inpatients at Piam Brown and the first few days seemed to have very little effect on him, whether this was down to the fact he had just had an operation to insert his port and he had just started gruelling chemotherapy. I must admit a bit of me though well this isn't going to be too bad, all this fuss and look he's fine, no side effects or anything. But within a couple of days this started to change.
The first thing I really noticed was Billy's appetite increasing, and it wasn't by a small amount. He was suddenly starving all the time, and wanting things that he never really ate before. Luckily on Piam Brown it was quite easy to satisfy the appetite as they are quite used to it. Still it was costing me as I was having to run to the shop downstairs for little top up things. He seemed to want salty foods to start off with, he went right off of chocolate and sweet things, he loved twiglets and french fry crisps. He also wanted apples.
Then the mood swings started. I mean mood swings too. One minute he was quite happy the next either full of tears or really really angry. This would just come on with no warning whatsoever and could be over the most silly things. It ws such a shock as Billy had always been the most easy going and placid child around. I had watched him play with others and also been told many times by nursery or school about how he never reacted badly to things and then suddenly this.
With the mood swings came the lack of sleep and the constant waking in the night, first of all I put this down to being in the hospital with all the strange noises and the obs checks. By the time we were transferred back to our local hospital it was very obvious this was getting worse.
There was also the weight gain. Billy had always been a little skinny boy and then the steroids started to do their stuff. I felt so sorry for Billy by the end of the first few weeks as he was blown up like balloon and he struggled to walk or sit down or really do anything. He was obviously in pain too but he was so so good and didn't complain.
The steroids either came in tablet or liquid form, I preferred the liquid as it was easier to get into Billy. To start off I mixed it with the laxative as it made it taste better for him. Now he can take tablets either form is fine for us.
By the time we were discharged from hospital to go home Billy's appetite was crazy. The food cravings tended to change almost daily. Sometimes it was ham and cucumber, other days it was fresh spaghetti and sausages and some days it was chips and apples. I found it very hard to do a big shop as Billy would suddenly go off something and I would be left with a big supply of a food I didn't eat! friends did well with the leftovers!!
The amount of money that it was costing me was unbelievable, thank god for Clic Sargent who gave us a grant to help us. It was another way that our lives were changing and it was a hard thing to have to deal with.
I found the whole steroids periods draining. It was like having a tiny baby again, waking constantly during the night and demanding food. At the end Billy would wake up at 5, unable to sleep anymore, after going to sleep at 12. I would get up make him 4 slices of toast and marmite, leave him some milk and yogurt and try and go back to bed to sleep. By 7 ish he was starving again! That was how our lives went on. Tired wasn't the word for it, I honestly felt that I needed match sticks to stay awake, but I had to make do with red bull and diet coke!
The weight gain was hard for both of us. As it all seemed to be going on the top half his legs struggled to support him so I was carrying him around indoors or using his buggy when we were out and about. Even at school he struggled to get around anywhere. He looked so so uncomfortable and I had to buy age 7 clothes just to fit him!!
When we had to go to Southampton for lumber punctures they tried to get him first on the list so he didn't have to be starved too long but the last week of the high dose was hell. He had no comprehension or reasoning due to the drugs and it was heartbreaking as he cried non stop until they put him under. When he woke up he demolished a mountain of food.
The behaviour changes were awful. I can't count the amount of times that he had a major meltdown in a shop or while we were out and about. People looked at me like I was the worst mother in the world and only a few was I able to explain the reasons for it to. I remember being in out local supermarket where the staff knew us and a woman tutting and complaining about my 'naughty' child and one of the cashiers telling her exactly what was wrong, did she look embarrassed!!
I cried so much during this time as the changes to my lovely Billy were so so hard to cope with and I despaired of ever being able to go back to normal again. I was assured that he would go back once the steroids were finished but I couldn't see it. He put on over 6 kilos in 3 weeks and looked nothing like himself. But I had to put up with it and get through it. After all if he didn't he could die....
This was how Billy looked after the weight went on...
He would spend the first 4 weeks of treatment on a high dose of steroids and then 2 more where the dose would be gradually decreased as part of the start treatment or the intensive treatment. He would then need to take them in other intensive treatments and as part of the maintenance treatment cycle for 5 days every 28 days.
Billy started the steroids whilst we were still inpatients at Piam Brown and the first few days seemed to have very little effect on him, whether this was down to the fact he had just had an operation to insert his port and he had just started gruelling chemotherapy. I must admit a bit of me though well this isn't going to be too bad, all this fuss and look he's fine, no side effects or anything. But within a couple of days this started to change.
The first thing I really noticed was Billy's appetite increasing, and it wasn't by a small amount. He was suddenly starving all the time, and wanting things that he never really ate before. Luckily on Piam Brown it was quite easy to satisfy the appetite as they are quite used to it. Still it was costing me as I was having to run to the shop downstairs for little top up things. He seemed to want salty foods to start off with, he went right off of chocolate and sweet things, he loved twiglets and french fry crisps. He also wanted apples.
Then the mood swings started. I mean mood swings too. One minute he was quite happy the next either full of tears or really really angry. This would just come on with no warning whatsoever and could be over the most silly things. It ws such a shock as Billy had always been the most easy going and placid child around. I had watched him play with others and also been told many times by nursery or school about how he never reacted badly to things and then suddenly this.
With the mood swings came the lack of sleep and the constant waking in the night, first of all I put this down to being in the hospital with all the strange noises and the obs checks. By the time we were transferred back to our local hospital it was very obvious this was getting worse.
There was also the weight gain. Billy had always been a little skinny boy and then the steroids started to do their stuff. I felt so sorry for Billy by the end of the first few weeks as he was blown up like balloon and he struggled to walk or sit down or really do anything. He was obviously in pain too but he was so so good and didn't complain.
The steroids either came in tablet or liquid form, I preferred the liquid as it was easier to get into Billy. To start off I mixed it with the laxative as it made it taste better for him. Now he can take tablets either form is fine for us.
By the time we were discharged from hospital to go home Billy's appetite was crazy. The food cravings tended to change almost daily. Sometimes it was ham and cucumber, other days it was fresh spaghetti and sausages and some days it was chips and apples. I found it very hard to do a big shop as Billy would suddenly go off something and I would be left with a big supply of a food I didn't eat! friends did well with the leftovers!!
The amount of money that it was costing me was unbelievable, thank god for Clic Sargent who gave us a grant to help us. It was another way that our lives were changing and it was a hard thing to have to deal with.
I found the whole steroids periods draining. It was like having a tiny baby again, waking constantly during the night and demanding food. At the end Billy would wake up at 5, unable to sleep anymore, after going to sleep at 12. I would get up make him 4 slices of toast and marmite, leave him some milk and yogurt and try and go back to bed to sleep. By 7 ish he was starving again! That was how our lives went on. Tired wasn't the word for it, I honestly felt that I needed match sticks to stay awake, but I had to make do with red bull and diet coke!
The weight gain was hard for both of us. As it all seemed to be going on the top half his legs struggled to support him so I was carrying him around indoors or using his buggy when we were out and about. Even at school he struggled to get around anywhere. He looked so so uncomfortable and I had to buy age 7 clothes just to fit him!!
When we had to go to Southampton for lumber punctures they tried to get him first on the list so he didn't have to be starved too long but the last week of the high dose was hell. He had no comprehension or reasoning due to the drugs and it was heartbreaking as he cried non stop until they put him under. When he woke up he demolished a mountain of food.
The behaviour changes were awful. I can't count the amount of times that he had a major meltdown in a shop or while we were out and about. People looked at me like I was the worst mother in the world and only a few was I able to explain the reasons for it to. I remember being in out local supermarket where the staff knew us and a woman tutting and complaining about my 'naughty' child and one of the cashiers telling her exactly what was wrong, did she look embarrassed!!
I cried so much during this time as the changes to my lovely Billy were so so hard to cope with and I despaired of ever being able to go back to normal again. I was assured that he would go back once the steroids were finished but I couldn't see it. He put on over 6 kilos in 3 weeks and looked nothing like himself. But I had to put up with it and get through it. After all if he didn't he could die....
This was how Billy looked after the weight went on...
Friday 10 February 2012
Work
So now, three weeks after that hospital appointment when I was told that Billy had leukaemia you are probably wondering what i was doing about work. Well the simple answer at this point was nothing! I had been signed off for 2 weeks when Billy was first diagnosed and then after going to the doctor again was signed off for another 3 weeks.
This is standard procedure when you have a child who is diagnosed with something like Leukaemia. When Billy was transferred to Piam Brown to have it confirmed Dr Martin had already contacted my GP and organised that I would be signed off. It enables you to have the time off with worrying and hopefully with getting paid as well. It is such a stressful time you know that if you had to worry about what you were doing for work you would lose the plot!
Now I work for a big, big company. They are a multinational company who turn over millions every year. I had worked there for over 3 years when Billy was diagnosed. Although my colleagues and my immediate manager were fantastic the rest of the company weren't great! I appreciate that it is a unique circumstance that I was in but I was quite surprised about the way things went. I was always there, never off sick, always punctual and not to be big headed good at my job.
When Billy was first in hospital I had quite a lot of phone calls from work asking various things about clients, bookings etc. Sometimes i was getting up to 20 calls an hour, I even wrote notes on everyone and what to do to try and help. I understood that they needed to know how to cover my job and I was more than prepared to help them. Sometimes it was difficult to talk but I made sure I called back.
My lovely colleagues send me a card which I still have to this day and most of them contacted me either via text, facebook, card or phone. It was nice to know that so many of them cared about us. A lot had met Billy and the cards he was sent was so lovely. I was quite upset that our section manager, a lady I had worked closely with for years, was one of the few who didn't contact me. It was quite a shock as she always seemed to like me, although she was quite brash and had tendencies to bully other women she worked with.
After I was signed off for the second time the attitude of the senior managers started to change a bit. Although I do appreciate that it was difficult for them me being off, my son had just being diagnosed with leukaemia and I was still waiting to find out a bit more about what his treatment was going to be and how long etc etc. Our big boss had a nephew who had actually died from ALL a few years before so I was hoping he might understand. He even knew a few of the oncology team from when his nephew was ill.
I got a phone call saying that the personnel manager and our big boss would like a meeting with me, at this point I had only been off 2 and a bit weeks. I agreed that they could come round to our home the next Tuesday. I didn't know but this was actually against the staff handbook! I was so scared though, my son was ill and I didn't know 100% what was going on and work were asking for a meeting. I knew what my contract said but I didn't need any hassle at this point in our life.
I was so petrified about what they were going to say, although everyone told me they couldn't force me to come straight back and that I had to put Billy first I was nervous about it. The consultant and the outreach nurses were fantastically supportive and Pippa even rang in to speak to the big boss to try and stop me worrying and make things easier for us. The big boss even told Pippa how he would do everything he could to help.
The day of the meeting came, looking back now I should have cancelled it as Billy was getting really bad with the side effects of the steroids. But truth be told I was too scared to. They came in and I made them a cup of tea and tried to talk to them, but as Billy was feeling both unwell and very insecure with strangers being in his home wanted my attention. He then was starving as the steroids were doing their worst. At this point he had put on a lot of weight and the poor little boy was struggling to walk so I was carrying him. These two were sat there giving me a hard time as I was trying to cope with my son being so poorly.
It was like they had no compassion at all, they really couldn't have cared less. They kept asking me when exactly I was planning to come back, a question that I couldn't answer. At one point I was even asked if I would be better not coming back. This is typical bullying tactics but at the time I was scared to death, what was I going to do, it sounded like If I didn't go back full time soon then I would lose my job and there where would i be? I had a home and bills to worry about but they weren't my top priority Billy was. How could they be this cruel when they could see how ill my son was?
After they had left I phoned my mum in tears, she was actually really shocked at the way I had been treated and wondered if I had taken it the wrong way. The next meeting would prove to her that I hadn't though!!
One more added bit of stress in our lives. The one thing I hadn't bargained for was the support of friends and family who researched and looked into and found that actually they couldn't do what they were trying to, but more of that another time.......
This is standard procedure when you have a child who is diagnosed with something like Leukaemia. When Billy was transferred to Piam Brown to have it confirmed Dr Martin had already contacted my GP and organised that I would be signed off. It enables you to have the time off with worrying and hopefully with getting paid as well. It is such a stressful time you know that if you had to worry about what you were doing for work you would lose the plot!
Now I work for a big, big company. They are a multinational company who turn over millions every year. I had worked there for over 3 years when Billy was diagnosed. Although my colleagues and my immediate manager were fantastic the rest of the company weren't great! I appreciate that it is a unique circumstance that I was in but I was quite surprised about the way things went. I was always there, never off sick, always punctual and not to be big headed good at my job.
When Billy was first in hospital I had quite a lot of phone calls from work asking various things about clients, bookings etc. Sometimes i was getting up to 20 calls an hour, I even wrote notes on everyone and what to do to try and help. I understood that they needed to know how to cover my job and I was more than prepared to help them. Sometimes it was difficult to talk but I made sure I called back.
My lovely colleagues send me a card which I still have to this day and most of them contacted me either via text, facebook, card or phone. It was nice to know that so many of them cared about us. A lot had met Billy and the cards he was sent was so lovely. I was quite upset that our section manager, a lady I had worked closely with for years, was one of the few who didn't contact me. It was quite a shock as she always seemed to like me, although she was quite brash and had tendencies to bully other women she worked with.
After I was signed off for the second time the attitude of the senior managers started to change a bit. Although I do appreciate that it was difficult for them me being off, my son had just being diagnosed with leukaemia and I was still waiting to find out a bit more about what his treatment was going to be and how long etc etc. Our big boss had a nephew who had actually died from ALL a few years before so I was hoping he might understand. He even knew a few of the oncology team from when his nephew was ill.
I got a phone call saying that the personnel manager and our big boss would like a meeting with me, at this point I had only been off 2 and a bit weeks. I agreed that they could come round to our home the next Tuesday. I didn't know but this was actually against the staff handbook! I was so scared though, my son was ill and I didn't know 100% what was going on and work were asking for a meeting. I knew what my contract said but I didn't need any hassle at this point in our life.
I was so petrified about what they were going to say, although everyone told me they couldn't force me to come straight back and that I had to put Billy first I was nervous about it. The consultant and the outreach nurses were fantastically supportive and Pippa even rang in to speak to the big boss to try and stop me worrying and make things easier for us. The big boss even told Pippa how he would do everything he could to help.
The day of the meeting came, looking back now I should have cancelled it as Billy was getting really bad with the side effects of the steroids. But truth be told I was too scared to. They came in and I made them a cup of tea and tried to talk to them, but as Billy was feeling both unwell and very insecure with strangers being in his home wanted my attention. He then was starving as the steroids were doing their worst. At this point he had put on a lot of weight and the poor little boy was struggling to walk so I was carrying him. These two were sat there giving me a hard time as I was trying to cope with my son being so poorly.
It was like they had no compassion at all, they really couldn't have cared less. They kept asking me when exactly I was planning to come back, a question that I couldn't answer. At one point I was even asked if I would be better not coming back. This is typical bullying tactics but at the time I was scared to death, what was I going to do, it sounded like If I didn't go back full time soon then I would lose my job and there where would i be? I had a home and bills to worry about but they weren't my top priority Billy was. How could they be this cruel when they could see how ill my son was?
After they had left I phoned my mum in tears, she was actually really shocked at the way I had been treated and wondered if I had taken it the wrong way. The next meeting would prove to her that I hadn't though!!
One more added bit of stress in our lives. The one thing I hadn't bargained for was the support of friends and family who researched and looked into and found that actually they couldn't do what they were trying to, but more of that another time.......
Wednesday 8 February 2012
Giving Blood
The interview that I did yesterday for a campaign to get more people to give blood is the inspiration behind this post. Before Billy was diagnosed I had given blood a couple of times, albeit very sporadically and didn't realise what a big deal it is.
I had it in my head that is was mainly used for victims of car crashes and maybe the odd operation. I had no idea that children ( and of course adults ) who are on treatments like Billy need it and when they are on intensive treatment they need it quite often. This is why the campaign that is being run is proving so successful, because it is showing people the different people that need blood and who rely on people like us who are able to donate to give a pint!
I am now very vocal in encouraging people to give blood if they are able to. I have had a few friends use the old excuse 'but I am scared of needles'. Oh please, some of these people have countless tattoos and some have a few piercings. I do appreciate that there are genuinely some people who have a proper phobia of needles and this I understand, but the ones who may just be a bit squeamish? Get over it! Its nothing, it lasts a few minutes and the blood you donate could literally save someones life. Surely thats a reason to do it?
For the squeamish ones just think of this. My son, who was 3 when he starting having needle regularly stuck into him to take blood had no choice. He has to put up with it. And he is so so brave, he never complains or makes a fuss, he just gets on with it! If a child can do it with no fuss on a regular basis then you can.
Billy has received both blood and platelet transfusions on a number of occasions, one time it was literally life saving so I am more than aware of the good it does. I was so grateful to the wonderful people who had given their time and their blood to help.
I must admit since Billy has been poorly I have been giving blood every 4 months. I am so proud that Billy has inspired a lot of other people, friends, family, friends of friends etc to donate blood and the lucky few platelets too. Its normally men that can give platelets but they are just as crucial as blood donations and they can help so many people. Thats another reason I gave the interview to show how brave Billy is in the hope this would encourage others to help.
Billy being poorly has opened my eyes to the amount of ways that I can help others and if one of those ways is by giving blood then I am all for it. I do understand if there is a medical reason why you can't but if its at all possible just give a pint.... or two!!
I had it in my head that is was mainly used for victims of car crashes and maybe the odd operation. I had no idea that children ( and of course adults ) who are on treatments like Billy need it and when they are on intensive treatment they need it quite often. This is why the campaign that is being run is proving so successful, because it is showing people the different people that need blood and who rely on people like us who are able to donate to give a pint!
I am now very vocal in encouraging people to give blood if they are able to. I have had a few friends use the old excuse 'but I am scared of needles'. Oh please, some of these people have countless tattoos and some have a few piercings. I do appreciate that there are genuinely some people who have a proper phobia of needles and this I understand, but the ones who may just be a bit squeamish? Get over it! Its nothing, it lasts a few minutes and the blood you donate could literally save someones life. Surely thats a reason to do it?
For the squeamish ones just think of this. My son, who was 3 when he starting having needle regularly stuck into him to take blood had no choice. He has to put up with it. And he is so so brave, he never complains or makes a fuss, he just gets on with it! If a child can do it with no fuss on a regular basis then you can.
Billy has received both blood and platelet transfusions on a number of occasions, one time it was literally life saving so I am more than aware of the good it does. I was so grateful to the wonderful people who had given their time and their blood to help.
I must admit since Billy has been poorly I have been giving blood every 4 months. I am so proud that Billy has inspired a lot of other people, friends, family, friends of friends etc to donate blood and the lucky few platelets too. Its normally men that can give platelets but they are just as crucial as blood donations and they can help so many people. Thats another reason I gave the interview to show how brave Billy is in the hope this would encourage others to help.
Billy being poorly has opened my eyes to the amount of ways that I can help others and if one of those ways is by giving blood then I am all for it. I do understand if there is a medical reason why you can't but if its at all possible just give a pint.... or two!!
Tuesday 7 February 2012
Billy's birthday
Not long after we came out of hospital it was Billy's 4th birthday. I wanted to make it the best birthday he had ever had. I had bought a couple of presents before he was diagnosed and you need to buy things when you see them on offer! He was very excited about it and as he was managing to go to school every afternoon that week, my friend Heather and I went into town to get some bits.
I wanted the whole room to be bright, exciting and fun. I wanted from the second he woke up it to be special and him to be thrilled and happy. I must admit I wanted to spoil him rotten to make up for all the horrible nasty things he has been going through. Make things all happy and amazing and for just a short while for him to be able to forget that life was different and that he had leukaemia and just be a little boy who's birthday it was and have some fun.
Although I couldn't have the party that we had booked as it was at a farm and it was to much of a risk for Billy so I decided at very short notice to do a little party for him at home with some of his very best friends and family. I thought i would try and do it all as a surprise just to make him feel extra special and extra loved.
The steroids were starting to really kick in and Billy had started to put on a bit of weight and also wasn't sleeping well and got very cross or upset easily so I thought if I could make this day extra special it might help him all round. I bought a couple of big helium balloons to put in the lounge and some banners and bought some party food and made others. AS he was Ben 10 mad I found an amazing cake at Tesco with some 'flare' candles. Billy was obsessed with party bags so I made some for his friends that were coming.
Then I went present shopping. I know I went a bit over the top but I think one of your first instincts in a situation like this is to make everything good and better for them. I was helpless making him better that was in the hands of the doctors but I could buy him presents that would provide him with enjoyment and make him smile so I spent a small fortune in toys r us.
I even got him a blue DS with some money from my grandma that she had given me for my birthday and Billy for his. This may seem a very grown up present but it has been a godsend for the hospital. It has killed time, taken his mind of what is happening and just helped him exercise his mind. It goes everywhere with us and has been worth every penny.
The night before his birthday Billy struggled with the steroids to go to sleep so it was very very late by the time I got to put things up but it was so worth it to see his little face in the morning. I had found some great Ben 10 wrapping paper so he loved that and the cards. He became the little boy that he was before this had started. He was full of excitement and was so animated when unwrapping his presents. Everything was great and he looked so happy.
I had arranged it for various family members and friends to pop round at different times in the morning so he was kept busy for most of it. He didn't want to go to school as he wanted to play but when i told him he was having a party he was reluctant but went in.
He had a few friends round and he loved it, they had party food and played and he had so much fun. It was great to see him being the way he was. Just for one day he managed to battle against the steroids and be a normal little boy again. What a star!!
I wanted the whole room to be bright, exciting and fun. I wanted from the second he woke up it to be special and him to be thrilled and happy. I must admit I wanted to spoil him rotten to make up for all the horrible nasty things he has been going through. Make things all happy and amazing and for just a short while for him to be able to forget that life was different and that he had leukaemia and just be a little boy who's birthday it was and have some fun.
Although I couldn't have the party that we had booked as it was at a farm and it was to much of a risk for Billy so I decided at very short notice to do a little party for him at home with some of his very best friends and family. I thought i would try and do it all as a surprise just to make him feel extra special and extra loved.
The steroids were starting to really kick in and Billy had started to put on a bit of weight and also wasn't sleeping well and got very cross or upset easily so I thought if I could make this day extra special it might help him all round. I bought a couple of big helium balloons to put in the lounge and some banners and bought some party food and made others. AS he was Ben 10 mad I found an amazing cake at Tesco with some 'flare' candles. Billy was obsessed with party bags so I made some for his friends that were coming.
Then I went present shopping. I know I went a bit over the top but I think one of your first instincts in a situation like this is to make everything good and better for them. I was helpless making him better that was in the hands of the doctors but I could buy him presents that would provide him with enjoyment and make him smile so I spent a small fortune in toys r us.
I even got him a blue DS with some money from my grandma that she had given me for my birthday and Billy for his. This may seem a very grown up present but it has been a godsend for the hospital. It has killed time, taken his mind of what is happening and just helped him exercise his mind. It goes everywhere with us and has been worth every penny.
The night before his birthday Billy struggled with the steroids to go to sleep so it was very very late by the time I got to put things up but it was so worth it to see his little face in the morning. I had found some great Ben 10 wrapping paper so he loved that and the cards. He became the little boy that he was before this had started. He was full of excitement and was so animated when unwrapping his presents. Everything was great and he looked so happy.
I had arranged it for various family members and friends to pop round at different times in the morning so he was kept busy for most of it. He didn't want to go to school as he wanted to play but when i told him he was having a party he was reluctant but went in.
Monday 6 February 2012
Back to School
Hopefully you have worked out from my various posts and tweets and earlier blogs Billy is a tough little fighter. This was proven to me yet again when just two weeks after he was diagnosed and a week and a half after treatment was started he felt ready enough to go back to school. Proud wasn't the word for what I felt about it. He was outstanding and so brave in wanting to go back. Billy was only 3 but we have a school that has a nursery year where children go from the september after they turn 3, they only go for 2 and a half hours a day but it was still good for him to go back and see all of the other children and try to be normal.
I had spoken to the teachers and teaching assistant for his class and also they had spoken to the hospital and had basic training from the peadiactric outreach nurse. One good thing is that Billy had been attending school for 2 terms already and the teacher and TA knew him well so hopefully would pick up on any changes to him.
Billy had missed 2 weeks of school whilst he was in hospital but the doctors were happy and they thought it would be a good idea for him to go back. I was so so nervous. I had visions of him picking him up and he would have picked up all kinds of bugs. What if he got really ill by going back to school, should i just keep him off for a couple months and make sure he couldn't get any bugs?
I went through my fears with Pippa who was brilliant. She said these were the fears any parent going through what I was would have. She said I couldn't wrap him up in cotton wool, he could pick some of the bugs up from anywhere, any visitors coming round to see us could have a bug so what was I going to do, stay in and not go anywhere or see anyone or let Billy have a bit of normality? She even pointed out he could pick something up at hospital which we had to go to.
She also made me see that it was better for Billy if he was well enough to go to school and see all the other children, It would help his self confidence and make him feel less like he was different with the changes to him with the treatment. It would also help the other children accept things more eaily as they would get used to the gradual changes as opposed to him being off for ages and going back looking totally different, especially with his hair which would come out over a matter of time.
I knew what they were saying was true but it still didn't stop me worrying. I had just found out one of the most worst things possible about Billy and now I was letting him be 'taken' away from where I could protect him. I admit I was scared and I was so so worried that if he got ill it could kill him. This may seem a bit over the top but I had no idea what was going to happen if he got chicken pox or anything else at all.
That first afternoon back I made sure he had eaten and drunk well, made sure he had enough clothes incase he got could and packed a bag with his blue book, thermometer and other bits. I drove him down rather than walk cause I was so scared about him getting cold or getting germs! When we got to go school the other mums at the gate were lovely and the kids were pleased to see him.. The teacher and TA were great and made Billy feel right at home straight away. I thought he might be a bit clingy but he was fine.
Walking away and leaving him at school felt so so odd. They had promised to call me if anything happened or if he felt at all ill. He was still very embarrassed about his port and he didn't like anyone seeing or touching it and the school were very aware they needed to be a bit careful of the port and that it ws still healing. I knew they would look after him, but there was still a nagging doubt in my head incase I was doing the wrong thing.
Its one of the things they tell you about, the guilt, the blame. When I first read it in one of the leaflets I was sure I wouldn't let it effect me but it does. I felt so guilty for everything, was it my fault he has leukaemia, had I done something that had caused him to develop it? And now was i doing the right thing in letting him go back?
I was waiting for a phone call the whole time he was there. But one didn't come, when I picked him up he was so excited full of the joys of being back. The teachers said he had a brilliant day and was a joy to have back. It seemed to have done his confidence a bit of good and he had enjoying just being a child not being a child who has leukaemia.
Maybe things were going to go back a bit more to normal.
I had spoken to the teachers and teaching assistant for his class and also they had spoken to the hospital and had basic training from the peadiactric outreach nurse. One good thing is that Billy had been attending school for 2 terms already and the teacher and TA knew him well so hopefully would pick up on any changes to him.
Billy had missed 2 weeks of school whilst he was in hospital but the doctors were happy and they thought it would be a good idea for him to go back. I was so so nervous. I had visions of him picking him up and he would have picked up all kinds of bugs. What if he got really ill by going back to school, should i just keep him off for a couple months and make sure he couldn't get any bugs?
I went through my fears with Pippa who was brilliant. She said these were the fears any parent going through what I was would have. She said I couldn't wrap him up in cotton wool, he could pick some of the bugs up from anywhere, any visitors coming round to see us could have a bug so what was I going to do, stay in and not go anywhere or see anyone or let Billy have a bit of normality? She even pointed out he could pick something up at hospital which we had to go to.
She also made me see that it was better for Billy if he was well enough to go to school and see all the other children, It would help his self confidence and make him feel less like he was different with the changes to him with the treatment. It would also help the other children accept things more eaily as they would get used to the gradual changes as opposed to him being off for ages and going back looking totally different, especially with his hair which would come out over a matter of time.
I knew what they were saying was true but it still didn't stop me worrying. I had just found out one of the most worst things possible about Billy and now I was letting him be 'taken' away from where I could protect him. I admit I was scared and I was so so worried that if he got ill it could kill him. This may seem a bit over the top but I had no idea what was going to happen if he got chicken pox or anything else at all.
That first afternoon back I made sure he had eaten and drunk well, made sure he had enough clothes incase he got could and packed a bag with his blue book, thermometer and other bits. I drove him down rather than walk cause I was so scared about him getting cold or getting germs! When we got to go school the other mums at the gate were lovely and the kids were pleased to see him.. The teacher and TA were great and made Billy feel right at home straight away. I thought he might be a bit clingy but he was fine.
Walking away and leaving him at school felt so so odd. They had promised to call me if anything happened or if he felt at all ill. He was still very embarrassed about his port and he didn't like anyone seeing or touching it and the school were very aware they needed to be a bit careful of the port and that it ws still healing. I knew they would look after him, but there was still a nagging doubt in my head incase I was doing the wrong thing.
Its one of the things they tell you about, the guilt, the blame. When I first read it in one of the leaflets I was sure I wouldn't let it effect me but it does. I felt so guilty for everything, was it my fault he has leukaemia, had I done something that had caused him to develop it? And now was i doing the right thing in letting him go back?
I was waiting for a phone call the whole time he was there. But one didn't come, when I picked him up he was so excited full of the joys of being back. The teachers said he had a brilliant day and was a joy to have back. It seemed to have done his confidence a bit of good and he had enjoying just being a child not being a child who has leukaemia.
Maybe things were going to go back a bit more to normal.
Sunday 5 February 2012
Getting used to our new life..
As the week went on we began to see how much our life would change. I had to get used to the new medicines, how to give them when to give them. We had a lot of hospital appointments for chemotherapy, another lumbar puncture and just for a check up. It is weird how you start to adapt quite quickly to the changes.
You begin to learn where all the wards are, who the staff are and what all the different names for the medicines are. It was so strange to be back learning how to look after your child all over again. I began to quickly work out Billy's little ways of wanting things to be done to make things easy for him. I could tell how scared he was, all of a sudden he had all these people looking at him, sticking needles in him and giving him funny tasting medicines. I hope that I did manage to try and help him with some of his fears and make the time as easy as it was possible to do.
One good thing is the hospitals have play rooms which are full of every kind of toy imaginable, from computers to games consoles to jigsaws to cars. Billy was fascinated with new toys and it took his mind off of some of the nastier sides to hospital visits because he had the playroom to go in and have a look at all the new toys.
I was getting less scared of giving him the medicines and making sure he didn't have a temperature. Every day my confidence in being able to look after him well grew. I am not saying I was 100% sure of everything but I wasn't as scared as I was when we first came home. Billy on the whole was quite co-operative with taking his meds and letting me do temperatures. He did have times though when he wanted some control back over his life and refused his meds. That was scary and so hard to cope with, I knew how important it was to get things done the right way. We started a sticker chart where he would earn rewards for taking meds or having his temperature done which seemed to work really well for us.
All of the staff in the hospitals were great. They could tell that as it was all new to both of us we were both a bit scared and they did everything they could to make us more relaxed and confident about being in. They explained everything and had great ideas with how to do things to make life easier for us. They didn't mind me asking lots of questions and were so patient with showing me how to do things and showing me again!
As well as the local based community nurses there are social workers and a paediatric oncology outreach nurse from Piam Brown who are assigned to you. Our poon, Pippa was amazing she is really down to earth, approachable and honest. I felt that there was nothing you couldn't ask Pippa. She also got in touch with Billy's nursery and school and was going in to train them how to cope with Billy and what to do. I would also be involved in this just so I knew what they were told and if there was anything I felt they needed to know.
The support network was great and much needed especially when you are at the start of the treatment. They understand you, they know how horrible it is. They don't pretend its just going to get better overnight. It is helpful to have that honesty. You need people who give you a true picture of how your life will change so you can start to adjust. They are also fab at telling you when you are doing a good job which again you need to hear.
I was scared still but I knew the help and support was there. It is hard sometimes to ask for help, but the teams we have around us are aware of that. They make a point of calling or popping in a lot at the start just to check on how you are. The amount of tearful conversations i had must have made them think i was mad!!!
The new life was moving on, we had an idea of what the treatment would be like and we were coping ok so far, what was coming next though?
You begin to learn where all the wards are, who the staff are and what all the different names for the medicines are. It was so strange to be back learning how to look after your child all over again. I began to quickly work out Billy's little ways of wanting things to be done to make things easy for him. I could tell how scared he was, all of a sudden he had all these people looking at him, sticking needles in him and giving him funny tasting medicines. I hope that I did manage to try and help him with some of his fears and make the time as easy as it was possible to do.
One good thing is the hospitals have play rooms which are full of every kind of toy imaginable, from computers to games consoles to jigsaws to cars. Billy was fascinated with new toys and it took his mind off of some of the nastier sides to hospital visits because he had the playroom to go in and have a look at all the new toys.
I was getting less scared of giving him the medicines and making sure he didn't have a temperature. Every day my confidence in being able to look after him well grew. I am not saying I was 100% sure of everything but I wasn't as scared as I was when we first came home. Billy on the whole was quite co-operative with taking his meds and letting me do temperatures. He did have times though when he wanted some control back over his life and refused his meds. That was scary and so hard to cope with, I knew how important it was to get things done the right way. We started a sticker chart where he would earn rewards for taking meds or having his temperature done which seemed to work really well for us.
All of the staff in the hospitals were great. They could tell that as it was all new to both of us we were both a bit scared and they did everything they could to make us more relaxed and confident about being in. They explained everything and had great ideas with how to do things to make life easier for us. They didn't mind me asking lots of questions and were so patient with showing me how to do things and showing me again!
As well as the local based community nurses there are social workers and a paediatric oncology outreach nurse from Piam Brown who are assigned to you. Our poon, Pippa was amazing she is really down to earth, approachable and honest. I felt that there was nothing you couldn't ask Pippa. She also got in touch with Billy's nursery and school and was going in to train them how to cope with Billy and what to do. I would also be involved in this just so I knew what they were told and if there was anything I felt they needed to know.
The support network was great and much needed especially when you are at the start of the treatment. They understand you, they know how horrible it is. They don't pretend its just going to get better overnight. It is helpful to have that honesty. You need people who give you a true picture of how your life will change so you can start to adjust. They are also fab at telling you when you are doing a good job which again you need to hear.
I was scared still but I knew the help and support was there. It is hard sometimes to ask for help, but the teams we have around us are aware of that. They make a point of calling or popping in a lot at the start just to check on how you are. The amount of tearful conversations i had must have made them think i was mad!!!
The new life was moving on, we had an idea of what the treatment would be like and we were coping ok so far, what was coming next though?
Friday 3 February 2012
Changes to life
Well we were back home now but how different was our life going to be. The medicines took a lot of getting used to but we were getting used to them. The food cravings with the steroids were again a shock but I was getting used to that as well. I no longer tried to do a weeks shop but went to the shop daily for what ever Billy fancied, sometimes more than once a day! The cravings were odd, some things I had never really seen him eat before but he loved now. It cost a fortune, when he was craving sausages and fresh spaghetti i think i was spending nearly £15 a day on food for him!
One of the changes i hasn't really got my head around was not being able to go away. Although this was explained to me at hospital and I nodded my head and made the right noises that I understood I don't think it really got through to me until we were home. WE had a holiday to menorca booked, we were due to go 7 weeks after Billy was diagnosed and I naively asked if we really had to cancel it, was there any chance that Billy would be well enough to go as he was looking forward to it. The consultant was lovely and just put it gently that he probably wouldn't and the best thing would be to cancel it.
The travel agents were fab and managed to get a lot of the money back and only a bit went through the travel insurance. I had to sort out his swimming lessons because for obvious reasons, the port, lumbar punctures etc he wouldn't be able to go for a bit. The manager at the pool, Mel, was brilliant. She told me not to worry they would hold his place until he was well enough and I wouldn't be charged, how lovely was that?
I had to sort out his nursery, who again were fab and didn't charge me full price. I had a birthday party booked for Billy at a local farm park. They were the only people who were difficult and to this day they still have a half payment for his party. As Billy is very susceptible to a bug called crypto sporidium which can be fatal to immniosupprssed patients I was advised not to have it till he is better. He ended up seriously ill after getting crypto sporidium through a school trip so I won't be having it there and I think he will be too grown up for it when he is finally allowed.
I had to get used to travelling with a bag again for billy, like a baby bag when they are younger. It had to have his blue book, meds etc just so if anything happened I would be able to get him the right care he needed. It was a scary thing having to check we had things every time we left the house.
I was also petrified of taking him near to many people, we popped into town briefly and the supermarket but tried not to get him near anyone in case they had any germs he could pick up. I still wasn't 100% sure what everything could mean to us so was slightly paranoid about everything and anything.
Things would get to be routine but those first few days were really shockingly scary. I was scared of everything I literally wrapped up Billy in cotton wool. If is was slightly cold he had a hat scarf and gloves on, bearing in mind it wasn't very cold at all, it was may! If he had a temperature that may have been at all warm I had to check it every ten minutes! To be honest I was probably a bit of a nervous wreck, god knows what people must have thought about me!
I made sure I ran the cold water for at least 30 seconds before I filled a glass for Billy, rigidly stuck to diet advice from the hospital and did everything that they told us. Again it was like having a new baby again! I think even Billy felt a bit suffocated by me asking every ten seconds if he was ok. I was determined he was going to get better whatever it took.
One of the changes i hasn't really got my head around was not being able to go away. Although this was explained to me at hospital and I nodded my head and made the right noises that I understood I don't think it really got through to me until we were home. WE had a holiday to menorca booked, we were due to go 7 weeks after Billy was diagnosed and I naively asked if we really had to cancel it, was there any chance that Billy would be well enough to go as he was looking forward to it. The consultant was lovely and just put it gently that he probably wouldn't and the best thing would be to cancel it.
The travel agents were fab and managed to get a lot of the money back and only a bit went through the travel insurance. I had to sort out his swimming lessons because for obvious reasons, the port, lumbar punctures etc he wouldn't be able to go for a bit. The manager at the pool, Mel, was brilliant. She told me not to worry they would hold his place until he was well enough and I wouldn't be charged, how lovely was that?
I had to sort out his nursery, who again were fab and didn't charge me full price. I had a birthday party booked for Billy at a local farm park. They were the only people who were difficult and to this day they still have a half payment for his party. As Billy is very susceptible to a bug called crypto sporidium which can be fatal to immniosupprssed patients I was advised not to have it till he is better. He ended up seriously ill after getting crypto sporidium through a school trip so I won't be having it there and I think he will be too grown up for it when he is finally allowed.
I had to get used to travelling with a bag again for billy, like a baby bag when they are younger. It had to have his blue book, meds etc just so if anything happened I would be able to get him the right care he needed. It was a scary thing having to check we had things every time we left the house.
I was also petrified of taking him near to many people, we popped into town briefly and the supermarket but tried not to get him near anyone in case they had any germs he could pick up. I still wasn't 100% sure what everything could mean to us so was slightly paranoid about everything and anything.
Things would get to be routine but those first few days were really shockingly scary. I was scared of everything I literally wrapped up Billy in cotton wool. If is was slightly cold he had a hat scarf and gloves on, bearing in mind it wasn't very cold at all, it was may! If he had a temperature that may have been at all warm I had to check it every ten minutes! To be honest I was probably a bit of a nervous wreck, god knows what people must have thought about me!
I made sure I ran the cold water for at least 30 seconds before I filled a glass for Billy, rigidly stuck to diet advice from the hospital and did everything that they told us. Again it was like having a new baby again! I think even Billy felt a bit suffocated by me asking every ten seconds if he was ok. I was determined he was going to get better whatever it took.
Thursday 2 February 2012
Hair
Now as I said before we were told by the consultants that Billy would definitely loose his hair. It wasn't something he had really been bothered with before. He never had much hair at all until he was nearly 2 when he had his first haircut. I used to keep in quite short because he liked it that way and he looked quite smart. I used to take him to the barber and they did a grade two back and sides and longer on top.
He was quite upset when he was told his hair would come out. I saw him looking at other children on Piam Brown who had lost hair and it seemed to bother him a lot. When my dad said he would shave his off to match Billy's when it came out he was inconsolable. He just kept crying and saying don't take my hair away.
Everyone who came in to visit always asked the question would he lose it. I had to tell them out of earshot yes he would. I decided that when his started coming out I would dye mine bright colours. A couple of my friends said they would do the same to support Billy as well. Billy was at that age where kids say things without thinking and I was worried what this might do to him if another child said something about his hair. It seems quite a minor thing with what else he was up against but I didn't want anything making it even harder for him.
The first morning we were home something was on the TV about hair and it made Billy upset and question things again. Right well there was only one thing for it. I packed him up into his buggy and off we went to town. I told him we were going to find some bright hair dye, he could choose whatever colour he wanted and I would dye my hair so people would look at me and not him. He loved this idea so we went into town and into the shop I knew had the brightest colours and biggest range of different colours to choose from.
There was a colour chart and this made Billy smile, they had almost every colour of the rainbow from pink to blue to red to yellow. I was lucky as i had blonde hair which should take the colours well. We chose a bright pink, called cerise for me and Billy asked if he could dye his blue. Well as it was probably going to come out anyway i thought what the hell if it makes him feel better then we will do it!
We went back home with our amazing colour dyes and I put mine on, I left it the required time and then off it came! Wow it was bright. I loved it, Billy loved it. I was 100% sure that no one would be taking a bit of notice of Billy's hair when mine was cerise pink. Billy changed his mind as he was a bit scared of having his dyed but it didn't matter.
From day one I was very pleased of my hair, it was a small thing I could do to make Billy feel better and that was the important thing, trying to help him anyway I could by helping him feel happier. When we went out and about I got some comments, the vast majority of them positive but once I explained why I had done it everyone was full of praise. I always remember one older lady in sainsbury's saying to me she loved my hair and she wished she was young enough to do it. When i told her why I had done it she was so lovely it overwhelmed me. It just showed how little things could really touch people. It was also a great conversation starter and I spoke to lots of people I probably would never have done.
My friends who said they would also do it were first of all a tiny bit annoyed for me doing it without them but once I explained why they totally understood. People didn't really notice Billy and how he was looking just me which was the reason for doing it.
As the months went on I had pink hair, blue hair, purple hair and red hair. People began to look and see what colour I had gone now. Billy even plucked up the courage to dye his blue before it all fell out on the second period of intensive treatment. Billy still says to this day that my hair was lovely and sometimes it even matched my dresses.
It was a small way of us getting through this awful time and i must admit that it made things a slightly bit easier for us, its easy to look back at the pictures now. I had to change my hair back to blonde when I went back to work which I hated, I really wish work would have let me keep it, after all I had a really good reason for it! Especially at the time Billy had no hair at all. But I think our plan worked, the whole time only 1 child commented on Billy's hair, or lack of it but most of them commented on mine!
It must have helped at school a bit, I didn't have to explain to new parents as others did when they asked about the crazy hair colour woman! One positive thing that we found that worked for us and when he is given the all clear believe me I will be taking time off work and the pink hair will be back!
He was quite upset when he was told his hair would come out. I saw him looking at other children on Piam Brown who had lost hair and it seemed to bother him a lot. When my dad said he would shave his off to match Billy's when it came out he was inconsolable. He just kept crying and saying don't take my hair away.
Everyone who came in to visit always asked the question would he lose it. I had to tell them out of earshot yes he would. I decided that when his started coming out I would dye mine bright colours. A couple of my friends said they would do the same to support Billy as well. Billy was at that age where kids say things without thinking and I was worried what this might do to him if another child said something about his hair. It seems quite a minor thing with what else he was up against but I didn't want anything making it even harder for him.
The first morning we were home something was on the TV about hair and it made Billy upset and question things again. Right well there was only one thing for it. I packed him up into his buggy and off we went to town. I told him we were going to find some bright hair dye, he could choose whatever colour he wanted and I would dye my hair so people would look at me and not him. He loved this idea so we went into town and into the shop I knew had the brightest colours and biggest range of different colours to choose from.
There was a colour chart and this made Billy smile, they had almost every colour of the rainbow from pink to blue to red to yellow. I was lucky as i had blonde hair which should take the colours well. We chose a bright pink, called cerise for me and Billy asked if he could dye his blue. Well as it was probably going to come out anyway i thought what the hell if it makes him feel better then we will do it!
We went back home with our amazing colour dyes and I put mine on, I left it the required time and then off it came! Wow it was bright. I loved it, Billy loved it. I was 100% sure that no one would be taking a bit of notice of Billy's hair when mine was cerise pink. Billy changed his mind as he was a bit scared of having his dyed but it didn't matter.
From day one I was very pleased of my hair, it was a small thing I could do to make Billy feel better and that was the important thing, trying to help him anyway I could by helping him feel happier. When we went out and about I got some comments, the vast majority of them positive but once I explained why I had done it everyone was full of praise. I always remember one older lady in sainsbury's saying to me she loved my hair and she wished she was young enough to do it. When i told her why I had done it she was so lovely it overwhelmed me. It just showed how little things could really touch people. It was also a great conversation starter and I spoke to lots of people I probably would never have done.
My friends who said they would also do it were first of all a tiny bit annoyed for me doing it without them but once I explained why they totally understood. People didn't really notice Billy and how he was looking just me which was the reason for doing it.
As the months went on I had pink hair, blue hair, purple hair and red hair. People began to look and see what colour I had gone now. Billy even plucked up the courage to dye his blue before it all fell out on the second period of intensive treatment. Billy still says to this day that my hair was lovely and sometimes it even matched my dresses.
It was a small way of us getting through this awful time and i must admit that it made things a slightly bit easier for us, its easy to look back at the pictures now. I had to change my hair back to blonde when I went back to work which I hated, I really wish work would have let me keep it, after all I had a really good reason for it! Especially at the time Billy had no hair at all. But I think our plan worked, the whole time only 1 child commented on Billy's hair, or lack of it but most of them commented on mine!
It must have helped at school a bit, I didn't have to explain to new parents as others did when they asked about the crazy hair colour woman! One positive thing that we found that worked for us and when he is given the all clear believe me I will be taking time off work and the pink hair will be back!
Wednesday 1 February 2012
Waking up at home!
Saturday morning, the first morning in nearly two weeks we woke up at home in our own bed. How amazing was that? No hospital smell, no hospital noises. I could wander round in my pj's without having the worry that I was going to scare someone! It was amazing to have a cup of tea without having to pay for it. For the first few seconds when i woke it was like everything was back to normal and everything was good in our world. When reality it it was different though. I remembered what had changed in our life.
Billy had slept quite well, he had woken a couple of times, think we were both used to being woken in the night for obs. As soon as he woke he was starving, and I mean starving. The steroids were doing their thing. He had a boiled egg and soldiers, milk, ham and more toast. Within an hour or so he was hungry again so he had a muesli bar.
As it was the weekend Billy had to have antibiotics as well as steroids. Every weekend right throughout his treatment Billy will have antibiotics called septrin. He is given this to prevent an infection that children on chemo are prone to. He told me this medicine was quite nice and tasted like banana milkshake. To this day that nickname has stuck and we call in the banana milkshake medicine. It felt weird going the medicines but Billy was taking them easily and I seemed to be getting the hang of them.
We had a lot of changes to routine to get used to, his port site had to be checked and made sure it was clean and he had to take care with it for a while. Although we were due back to hospital next week it was still really scary in case something went wrong. I was so apprehensive things would go wrong I was a bit of a nervous wreck.
My friend Debbie came round to see us and see how we were settling in. She was just what I needed, she caught me up on some of the gossip I had missed and she brought some treats in for Billy so he was made to feel special! He loved having people round to see him and was telling them all how pleased he was to be home.
It was noticeable how the steroids were affecting Billy. He was changing a lot, the weight was starting to go on as his appetite was growing. It was so hard to buy food as his tastes were changing. He had started to become cross quite easily and would get very emotional about the silliest of things. He had always been happy so it wasn't nice to see.
I had all kinds of mixed emotions, I was pleased to be home and I could now see that the treatments were doing something to him. On the flip side I was worried, it even used to cross my head that was I doing the right thing for him? I knew I was but it is hard to watch your child going through injections, IV drugs, anaesthetics and other things. It is heartbreaking to watch and comprehend that the only way they will get better it to go through some pain and a lot of discomfort. Your first instinct as a parent is to protect them and stop them hurting but in this case all you can do is watch.
One of the good things being at home was if i did want a cry it was easier to do it so Billy couldn't see. I could hide away in my room, cry in the shower or other things. I know that things were going to be hard but I knew we had it in us to beat this. We had gotten through other bad things that had happened and I knew we could fight....
Billy had slept quite well, he had woken a couple of times, think we were both used to being woken in the night for obs. As soon as he woke he was starving, and I mean starving. The steroids were doing their thing. He had a boiled egg and soldiers, milk, ham and more toast. Within an hour or so he was hungry again so he had a muesli bar.
As it was the weekend Billy had to have antibiotics as well as steroids. Every weekend right throughout his treatment Billy will have antibiotics called septrin. He is given this to prevent an infection that children on chemo are prone to. He told me this medicine was quite nice and tasted like banana milkshake. To this day that nickname has stuck and we call in the banana milkshake medicine. It felt weird going the medicines but Billy was taking them easily and I seemed to be getting the hang of them.
We had a lot of changes to routine to get used to, his port site had to be checked and made sure it was clean and he had to take care with it for a while. Although we were due back to hospital next week it was still really scary in case something went wrong. I was so apprehensive things would go wrong I was a bit of a nervous wreck.
My friend Debbie came round to see us and see how we were settling in. She was just what I needed, she caught me up on some of the gossip I had missed and she brought some treats in for Billy so he was made to feel special! He loved having people round to see him and was telling them all how pleased he was to be home.
It was noticeable how the steroids were affecting Billy. He was changing a lot, the weight was starting to go on as his appetite was growing. It was so hard to buy food as his tastes were changing. He had started to become cross quite easily and would get very emotional about the silliest of things. He had always been happy so it wasn't nice to see.
I had all kinds of mixed emotions, I was pleased to be home and I could now see that the treatments were doing something to him. On the flip side I was worried, it even used to cross my head that was I doing the right thing for him? I knew I was but it is hard to watch your child going through injections, IV drugs, anaesthetics and other things. It is heartbreaking to watch and comprehend that the only way they will get better it to go through some pain and a lot of discomfort. Your first instinct as a parent is to protect them and stop them hurting but in this case all you can do is watch.
One of the good things being at home was if i did want a cry it was easier to do it so Billy couldn't see. I could hide away in my room, cry in the shower or other things. I know that things were going to be hard but I knew we had it in us to beat this. We had gotten through other bad things that had happened and I knew we could fight....
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