Sorry

I haven't been very good at all about posting lately, in fact its been over 2 months since I last posted.  Life has been pretty busy for us, Billy has actually been really well over the last couple of months so we have been able to do a lot more.  This has been great but it also means Billy has been a lot more tired and wanting a lot more cuddles than before.

He is also far more aware than we was as to what having Leukaemia means.  He is now aware that some people die from it.  This has been a very hard time as he is struggling to understand how or why he got it and why he is having to have such a long amount of treatment to make him better.  This has upset me a lot, having to try to explain to your child things that you really wish that you never had to explain is so hard.

Its very hard especially trying to word it in such a way that its not scary for him but yet to help him realise how important all the treatment is and how he has to realise and accept that there are a lot of things that other children do that he can't.  For example the school had baby chicks that the kids watch hatch and watched grow.  All the other children could handle them but poor Billy couldn't.  The school were brilliant and made sure there was no way that Billy could pick up any kind of germs or bugs from them and at least he could see them from a distance.

I am also a bit hurt by the attitude of others around us.  There are a gaggle of mums at the school who seem to be under the impression that because Billy's hair has grown back and because he is not on intensive treatment then he is better and should not be treated any different to other children.  If only people understood. Its so hard as Billy still wakes a lot at night, even when he is not on the steroids.  The steroids effect his behaviour so so much, for at least 10 days a month he is really hard work, he has no comprehension of things and gets so so upset.

I would love to be able to educate others on exactly what having a child with Leukaemia entails.  What all the different drugs mean and what they do and how they effect life.  What different bugs can do and how horrible it is to see your child ill.  It is something that I am seriously considering how to go about.  To have other people understand would make life a lot easier.

 I think people think that because I am not working the hours I worked before Billy was ill then it must mean my life is easy.  I would give anything to make it that my son was better, being a full time carer and working is hard going.  I am so so so proud of my son for the courage, tolerance and strength that he shows on a daily basis and he is my inspiration and my reason for smiling even when things seem bad.

where have i been

I haven't posted for nearly a month... was finding it all a bit too hard reminiscing about what has happened over the last 2 years... bringing back a lot of memories that maybe were better off locked away in the deepest bits of my mind.

Although it has been a horrible hard time for the both of us, we have met some wonderful people and made the most of everything that has been shown to us.  We have been to some wonderfull places and seen some wonderfull sights.

I will start writing the blog again this week.  Then you can catch up with the whole story again. :)

Infection...

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....

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 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...

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.......

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!!