Travelling

Now before Billy was diagnosed he and I loved getting away, wether it was somewhere sunny, somewhere cold or just somewhere fun we were there!  I had travelled abroad a lot before I had Billy so I was confident about taking him away on his own just the two of us.  He was quite a seasoned traveller, he loves planes, always did and usually is asleep within 5 minutes of getting on!

After he was diagnosed this all changed.  Straight away we had to cancel the holiday that we had booked and it was in the middle of an intensive phase of treatment so the hospital wouldn't allow us to travel, looking back this was a good thing as he was in no state to travel when he was that poorly.  To be honest i also became a bit scared to travel with him.

Its very daunting when you have a poorly child when you are away from home, for the first few months i wouldn't even stay at my families.  I live a 5 minute walk from the hospital and this made me feel safe and secure, if anything happened I could be there within minutes.

Billy had a lot of hospital admissions within the first few months with infections and temperatures and he was constantly neutropenic.  The hospital again aren't happy with you going away if they are the slightest bit under the weather, I can totally understand why if they are taken ill which can happen quite suddenly then its best for everyone if they are near a hospital that they know and that know him.

We booked to go to a local festival for 2 nights and that was touch and go right up till 3pm on the afternoon it started.  We did go and we had a great time, the combination on new surroundings and fresh air and sunshine did him the world of good!  It was so scary though, i must have checked his temperature 10 times a day!  It was like a chemist in our Teepee too.  The amount of meds we had were quite amusing!  When they asked at check in if we had any glass bottles they had a shock!!

It also gave me a bit of confidence in being somewhere that wasn't 5 minutes from the hospital as well.  I realised that we could go away, obviously providing Billy was well enough.  We then felt brave enough to go to a Centre Parcs a month or so later and a couple months later than that we went abroad.

Although we can only go abroad for a few days at a time it is great, just what we both need and Billy always comes back recharged and looking so much better.  We still look like a mobile chemist when we travel but we have it down to a fine art now.  We try and get away a lot as it really helps both of us.  Obviously we can't go abroad lots but we manage it a couple times a year.  We do a lot of UK trips though.

Its a huge deal when we go away, the hospital need to know and need to speak to a nearby hospital.  Billy needs to have good blood results and needs to look and be feeling well.  We need extra insurance when we go abroad and its still a bit scary!

The end result is worth it.  To have seen some of the places that we have been and the look on Billy's face when he see's some of the sights and people make it all worthwhile.  To us getting away helps us a lot, its given us a lot of amazing memories.  It also seems to help Billy when he is on the steroids, maybe the distractions and other activities stimulate his mind and stop the tantrums and mood swings.

Maybe its not the right idea for every child with Leukaemia but fpr us it works...

Time...

They say that time is a great healer and that giving something time makes it better.  We are over 2 years into our journey and to be honest I still get as scared about Billy having Leukaemia as I did the first day he was diagnosed.  I still wake up in the night in a dead panic... wondering what I am going to do, how we are going to get through this.

I must admit that I do worry if the treatment is going to work, how will they know if it is or if it isn't?  I have heard stories of patients getting all the way through the treatment and then not long after it finishes the Leukaemia comes back and it all starts again.

The first few weeks after Billy was diagnosed was the worst thing I have ever been through.  I can still remember the feelings that went through my head after he was diagnosed.  The sheer terror as to what was going to happen.  The panic as to wether I was making the right decisions.  I am on my own so actually having to make every single decision for Billy without having anyone I can talk to and someone that could share that process is hard.  Its also very scary.  Will Billy be gratefull that I made the choices that I did in the future???

I have tried to make every single moment count, do things that we have always said we would.  See things that I think he should see, have lots of great experiences, all whilst making sure the boring things such as school are kept up.    If there is one thing that I think I have learnt from this whole awful time is to do everything that you can as soon as you can.  Don't put things off till tomorrow, live for the moment and make every moment a great memory.

2 years down the line and i am still as worried as i was when we first found out what was wrong with Billy and what we would have to go through.  I hope that Billy will look back and remember the fun things that we did no the bad times and all the hospital visits.  They say time is a great healer so maybe a few years after treatment we will both see the positive side.......

Veins

Billy has been having a lot of trouble with his veins lately.  When he was first diagnosed he had a port-a-cath which was inserted under his skin directly into a vein.  Unfortunately he was very unlucky and within 6 months it had nearly come out and had to be removed.  We were lucky that the doctor spotted it when he did and an emergency operation saved Billy being seriously ill.

  Prior to it being removed Billy had complained that it was really really painful.  The doctors didn't take any notice of this and thought he was making it up. The poor little  boy was in a lot of pain and now looking back I feel so guilty for not trusting my instincts and believing him.

Billy has been petrified of any IV's since this.  All IV chemo he has is now done via veins in his hands.  Last week the doctor had a lot of trouble finding a vein.  The first vein wouldn't accept the canula, the second blew and he was in pain and the lump that came up when it was flushed looked awful.  On the third attempt the vein the doctor chose was a success and the chemo was administered.

I am hoping the next time will be easier, it was awful watching him in pain and seeing his face and watching the emotions and fear on it.  He finds it hard to trust the hospital after the problems before so he does worry a lot.

He is still smiling though and always fighting through.  I am so so proud to call him my son.

Helping Others

As you may have read in earlier blogs I am aiming to fundraise in order to help others that out in the same situation as us.  I am so awae exactly how hard it is to try and get through the hardest time in your life which is the only way that I can describe what we went through.

Have a look at our new twitter account @billyshelp and our FB.  Its going to be ding big things in the next few weeks!!

Thank you to everyone who has helped and supported us so far, all the tweets and mentions mean so much to both of us/

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!!

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!!

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.

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?

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.

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!

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....

Going Home

After 11 nights the doctors decided Billy was ready to go home.  It was a friday so we would have the weekend with people around and no major treatment.  I was petrified.  I never thought I would be scared to go home I thought I would be so glad to see the back of the hospital I would be breaking the doors down to go home!

This was the day that Billy's lovely teacher and TA had come in to see him and make him feel confident about going back in.  They brought a lovely card that his class had made and there were lots of pictures of the other kids.  Billy loved it.  His teacher and TA were both so wonderful, they obviously loved him and were so positive around him.  We all had a little cry as well.

Billy had started to change a bit, the steroids which he had now been on for a week had started to effect his behaviour, eating and weight.  He had become very stroppy, easily getting cross and emotional whereas before he had always been a chilled out boy.  His eating habits were very strange, he was eating so much, weird combinations of things too, things that he had never eaten before he was wolfing down.  This had an effect on his weight too, he had lost a bit when he was first diagnosed and treatment started but the weight was going on again well.

The day he was due to go home I went with one of my wonderful friends and did a big shop in our local supermarket.  Billy at this point was craving ham and cucumbers so I brought that, yogurts, fruit, veg and treats.  I thought I had everything we needed.  It felt weird going back to normality and doing things like food shopping again.  Just getting out of the hospital buying groceries and seeing people felt odd, in the hospital we were so cocooned against everything.  The outside world seemed so bright and noisy!

Seeing people I knew out who knew about Billy was another eye opener.  Some people were great, came over and chatted, talked about Billy, gave me a hug and offered help.  Some literally walked the other way and didn't know what to say to me.  This would get better but to start off it upset me a bit as I needed people to support us.

At 5 o'clock the doctors and nurses were there to discharge us, we had a huge bag full of meds and nurse Ali had written a reminder poster for me to get the meds right!  Not that I am stupid but it felt better to have it written down in black and white.  Waving goodbye to the staff felt so weird and actually quite emotional.

Then we were out of the hospital and in the car on the way home.  We got in shut the door and looked around, both of us didn't know what to do to start off with.  This is the first time we had been just us for nearly 2 weeks.  Billy was pleased to see the TV so he could watch Ben 10 and other cartoon he liked!  Not long after we got in he was starving again! this was something else I was going to have to get used to!

It was a lovely sunny evening so I opened the windows and enjoyed the fresh air.  We were both exhausted to decided to leave going out and about till next morning.  Both of us had a bath, how amazing did it feel to have a bath then chill on the sofa?  It was total heaven and the quietness after the hospital was great!

I made sure Billy had the evening meds, the first time was quite scary but nothing as bad as I had built it up in my head!  In fact I was quite proud of myself, I had managed it without panicking and Billy had taken it just fine.  Maybe being home and keeping the meds and other things right wouldn't be so hard after all.

Our phone rang and rang, it was lovely to know people cared about us and we had all kinds of offers of visits.  In the end we just had a couple of close Friends round for an hour and it was nice to see them and be normal and have a cup of tea and a chat!

Then it was bedtime.  Heaven my own bed!  I was so so looking forward to it and so was Billy.  As the steroids cause sleep problems he didn't go straight off but watched TV for a while.  Finally he fell asleep! I thought I would be straight after him but no, my mind went into overdrive.  The tears came and i phoned my friend.  Just being able to talk helped.  This was scary.  Billy was home but he has leukaemia.  That word again Leukaemia.

My head was so messed up, i was so scared and this time properly on my own.  All the worst cases scenarios were going through my head.  To add to it I was so worried about getting the meds wrong or Billy dropping them and me not knowing.  I was worried sick.  I was on my own too.  It was just me I was 100% responsible for him.  Would I be able to do this.  I wasn't wonder woman I was just a normal woman. 

The tears and fears were there.  It seemed to hit me all over again.  The blame questions, was it my fault, could I have stopped him getting it etc ? They were all in my head.  Suddenly I was wondering if we should have stayed in hospital.  Luckily my friend calmed me down and made me think rationally about looking after Billy.  I had done tonight's meds

It was like being a new mum all over again.  I remember someone saying just do things the way that works best for you.  Thats what I had done when Billy was a baby. So within reson I would try that again with this.  After all apart from the leukaemia we never really had any problems.  Reassured I managed to try to sleep...

getting ready to go home

Well we had been in hospital for 10 nights now and the hospital were thinking about us being able to go home.  At Southampton hospital we had been given a 'blue book'.  These are similar to the red books children have when they are small recording weight, height etc.  This one was A4 sized full of all kinds of information, telephone numbers for the hospitals and nurses, what to do if Billy was neutropenic, explaining all about the lumber punctures and bone marrow.  A leaflet explaining the side effects of the steroids, diet sheets, blood count results etc.

I new nothing about blood counts before Billy was diagnosed but within a week or two I would become an expert.  I can tell you what high and low counts in White Blood Cells, Neutrophils, Red Cells and Platelets mean and what effects they can have on Billy.  I also know what to look out for which may tell me if his counts are high or low.

The Blue Book was to be taken everywhere with us.  Any hospital would find it useful and know what to do with Billy when they saw it.  It would have treatment records and current medications.  The nurses and doctors went through lots of things with me and showed how to fill in the count results and why height, weight and other things are so important.

Even after everything being explained to me and me getting used to all the medications and temperatures etc I was still scared to death about taking Billy home.  In some ways it reminded me of taking him home for the first time as a baby.  It would all be new to me.  I would have to do medications and temperatures at least twice a day.  A high temperature is one of the first signs that he could have an infection.  A high temperature is Billy's body's way of telling us something is wrong.  If he had a temperature over 37.5 I would have to monitor him very carefully.  If the temperature was over 38 phone the ward for advice and over 38.5 go straight to hospital.

Billy is most susceptible to infection if he is neutropenic.  This is when his neutrophil count is below .75 which effectively means he has no immune system which obviously means he can pick up everything.  What was worse was Billy hadn't had chicken pox which was very serious to immniosupressed patients.

Now you can probably see why I was so scared.  Billy had always been a little toughie that was hardly ever ill and now this!  I had been told that some children go through treatment without hardly ever getting neutropenic and ending up ill but this was very very rare.  I had visions of Billy not being able to have any kind if life but being wrapped up in cotton wool and in a face mask.  Would this be the only way to keep him safe and sound?

Billy was in a nursery year at his school and was missing his friends lots, the hospital said one of the best things would be to get him home and get him back into a routine.  To me this seemed mad, all I wanted to do was make him safe, keep him away from everything and make sure he wasn't ill. My child had cancer why would I want him any more ill?

So after a few chats with the doctors and nurses we decided it was best if we stayed in another night just to relay my fears and give me another night to get used to all the new routines.  Another part of me was petrified that I would get it wrong and make Billy seriously ill.  It was one hell of a responsibility and was I up to it?  What if I got it wrong?  What if I measured the drugs wrong or if Billy refused them?

Its a lot to take in, life was going to be so so different, Billy was scared but coping, I was totally petrified...

Nearer Home

From the moment we got back to our local hospital both of us felt a bit better.  Our local hospital is much newer than Southampton and the kids ward is all uptogether, its all clean and fresh.  All the staff on Piam Brown are excellent and so so friendly but the ward is depressing and old.  We were given a lovely room away from everything with a few outside with windows that were double glazed and shut!  Just little things like that raised our spirits.  The room had a bathroom and a bed for me to sleep in, it seemed like heaven!

Billy was made to feel special from the moment we arrived, the nurses were fab and the auxiliaries made sure he wanted for nothing! Within an hour or so he had them all wrapped around his little finger and was being quite the charmer!  He had a dinner ordered just for him exactly what he wanted and they made sure there were lots of snacks in for him with his steroids!

I managed to give Billy a lovely bath and one of our friends dropped him in new pj's so he felt so much better.  The same wonderful friend had brought me in a lovely ready meal for tea and some magazines so I felt more at home and loved!!  Billy had his toys and TV and was happy.

The nurses came in and sorted out Billy with meds and learnt all his odd habits, he will only have medicine out of a paper medicine cup!  Gave me an extra digital thermometer as Billy would only use them not the hospital ones!  They explained a bit more about his meds, as it was calmer for all of us I was taking in more!

After tea Dr Martin came in to see us, he was on great form and made us laugh.  He had another of the community nurses and she talked to me and settled a few fears and assured us we were in the best place and went through a few things.  It felt good to be somewhere quiet where I could shut the door and we could have peace!

We both slept well that night and Billy was excellent about taking his meds.  His appetite was growing almost by the hour, one of the side effects of the Dex.  More doctors came round in the morning and we were introduced to Dr Martins deputy Mark who was lovely.  I felt a lot happier, we were one of a couple of oncology patients not one of many. 

I was nowhere near calm and happy I don't think you ever are again after the news we had but I felt safer, a bit calmer and more comfortable here.  I even managed to get home for an hour on the Wednesday and that felt so good!!  Being able to have a drink and a bath and do some washing, things people take for granted but that you can't do when you are away.  I realised that Billy coming home would be such a huge huge deal, things wouldn't be anything like the way they were before he was diagnosed.

Our phone kept ringing or receiving texts, so many people were interested in Billy and how he was coping.  It felt so nice to have so many positive thoughts going his way.  Being nearer home meant more people could get in, the good thing is there are no real restrictions on visiting so he was able to have lots of different people including some of his school friends which boosted his spirits.  It also meant I had some of my closest friends who I was able to talk to and be honest about my feelings to.

None of the nurses minded me crying.  I was still breaking down when Billy was asleep or at silly things and they were great.  They had a few funny stories or advice for me which helped.  One of the best things was the fact I didn't have to see lots of other oncology patients.  Sounds odd but I wasn't ready to face all of what Billy was going to have to go through yet, here I could block it out for a little while longer until I was ready.

Billy's treatment was still ongoing, the antibiotics were stopped and the port was healing well.  Martin reiterated to me that Billy had a very good chance and they were doing the treatment to cure him not because they thought it might.  None of this really went into my head. I was still just wanting it over and done with, I am not sure wether the fact it was going to be 3 and a half years of treatment really registered with me.

On the rare occasions that the reality hit me I was petrified.  What was going to happen to my baby boy? Were the doctors being 100% truthful? Why us? 

Moving Hospitals

We got through Sunday and Monday we were moved back onto the 4 bed ward, hell for a night but they promised we could go back to our local hospital. It was so hard to sleep but i reasoned it was just for on night, I could get through it, Billy was the important thing.  It sounds silly but this to me was amazing news being able to be near home would be fab.  Nearby the hospital was a park so I was looking forward to seeing some fresh air.

Although Billy had to have another lumber puncture and IV chemo before we went it was the end of the stay up there.  Billy was looking forward to going back and hopefully seeing some of his friends again.  He was getting better at taking his meds without arguing and had even started to help by pressing buttons when the blood pressure was done!  I had started to notice that the side effects from the steroids that I was warned about had started.  His appetite had suddenly increased hugely he seemed to be eating so much more than normal.  He had started to get awful mood swings and would snap and get upset for no reason.

I would find in the next few weeks and months the side effects aren't easy to cope with but the first time I was relieved in a way because to me it showed the drugs were working.  I was quite pleased we were on the ward as I could imagine Billy might not be too pleased about having to be starved for the anaesthetic for the Lumber Puncture.

We were used to the routine of Piam Brown, used to seeing the consultants every morning and have them give Billy a complete examination daily.  Used to the nurses only dealing with cancer patients and knowing what they are going through.  In some ways it was a safe cocoon for us and as much as I wanted to go I was a bit apprehensive as well.

On the day we were due to leave they had one of the leaders of the political parties who were campaigning in the election doing a broadcast from the ward. They took over everything they had a massive entourage and film crew, you couldn't move without beign in 'their' way.  This annoyed me a lot, this was a cancer ward not somewhere to score political points!!  They wanted to film Billy but I refused.  If they had really wanted to do some good they should have had a look at the real state of the ward, the broken and leaking showers etc and fixed them.

My lovely friend Lauren came up and helped us to pack and then early afternoon they said we were allowed to go!  The first time we had been out in the air for 8 days!!  I was so glad to get in the car and go away, it was sunny and lovely and we were off!!  Billy was really pleased to be going nearer home, he had had enough of the ward and wanted different toys and people and I think he was getting fed up of being looked at!  We had bags of belongings and meds and off we went...

The next chapter began!

Moving Rooms

Sunday morning came and we were given some news that I was dreading - we were going to moved out of our lovely room as it was needed and into a shared ward again.  The news upset me.  I phoned my friend and just sobbed down the phone.  It was the first time I had really had a semi meltdown since it had all happened and it was all over moving rooms!

It sounds quite silly now and probably to anyone who has not spent anything more than a night in hospital with a child it is hard to understand.  Billy was only 3 and was still struggling himself with where he was and what was happening to him so wanted his mum.  He wanted to be able to cuddle up and be quiet when he wanted.

All of a sudden we were back seeing people, instead of being able to close the door when we wanted and shut out the world we wouldn't have that choice.  The nurses completely understood but their hands were tied and there was nowhere else we could go.  We didn't have a lot of stuff it was just that I really didn't want to have to be where people could see me and have to make conversation unless i wanted to.

The thought of sharing a toilet and shower again with quite a few others wasn't appealing either.  The shared wards are noisy and there is no way of shutting the door!  It seemed like everything was out of our control, all I wanted was a little bit of privacy for both myself and for Billy.  He was still having odd accidents and at least in our own room I could just clear him up without anyone really seeing him and he had his dignity.

It wasn't even like we could go home, we were being kept in as Billy had his port in and they wanted to monitor it and they wanted to see how he was coping with treatment.  I would have given anything to have been able to go home for one night, its the silly things like washing clothes, making a cup of tea, watching TV and sleeping in your own bed you miss.

I really think that the Government should provide much better facilities for children and parents on the wards of cancer units.  The staff are all fabulous and they do the best job in the whole world and deserve nothing but the up most praise.  Its the 'managment' of the hospitals who you can imagine have massive offices and expense accounts etc who should be considering how children who are going through an awful and traumatic time could be made more comfortable.  I am not asking for silk sheets and Jacuzzis, just every patient having their own room with a bathroom so they have dignity and somewhere for their parents to rest to help them.

In this day and age you would have thought this would be the least that would happen.  Unfortunately Piam Brown is an old old ward that is done up well in some bits but the rest is just getting through until the new ward is opened when funding comes but this is not a good enough excuse!  Sort it government and NHS managers!!

Right rant over but you can see where I am coming from!!  Well the first night we were moved out of our room we got put in to a 2 bed ward and the other patient didn't turn up so it wasn't to bad, it was just scary being taken away from our comfort zone and being made to feel uncomfortable, not an easy way to spend our sunday.......

But things could only get better, couldn't they???

The next few days

Well what was going to be an overnight stay at Southampton hospital was turning into much longer.  To be honest as much as I didn't like being in hospital I was pleased that Billy was there getting the treatment that he needed by people that could help him.  Although I had given Billy the normal medicines like calpol and antibiotics I wasn't sure I was ready to do this big list of medicines that he was now having.  Being in hospital gave both of us chance to get used to the new routine.

It was a scary thought being responsible for all the medicines, antibiotics, steroids, laxatives and others.  What if I got them wrong? What if I forgot a dose of them?  Everything went through my head.  Although I knew that I was a organised person that didn't forget things and had routines it was still in my head.  I know being a mum is a huge responsibility on its own but to then become a mum to a child with Leukaemia and be responsible for everything was scaring me.

So for those days I was more than happy to watch and to learn our new routines.  As the nurses are all so experienced they all knew different ways to encourage children to take meds and ways to help me ensure he would take them properly.

The weekend came round, we had just moved into a really hot spell and being at the top of the hospital was very very warm.  It was torture to look out the window and see that beautiful sunshine and not be able to go and enjoy it.  When we were at home we loved being out in the park making the most of the sun and playing.  There were fans and the windows opened a little bit so there was a bit of a breeze but it was still uncomfortable.

Thankfully one friend brought me in some flip flops, another a dress and tshirts and my mum brought me in a  few more bits.  Thank god for them, I literally packed a few bits for us.  Billy was getting brought lots of new PJ's and tshirts so he was fine but I was living in jeans, trainers and a jumper as it was colder when we were admitted.

We had lots of visitors at the weekend which cheered both of us up.  The fact people had to travel for at least an hour made it even more special.  One of the ladies from Billy's nursery came to see him and was fantastic, Billy decided to have an accident just as she turned up and I was so embarrassed but Carol just brushed it off and helped me clean him up,  Friends like that are worth everything in life.  Just knowing people cared mattered.  I had a few friends who visited more than once and that was incredible to us.

Billy had got more confident with staying with the play leaders and a couple of times I went to the canteen with friends and managed to eat proper food!  Just that half hour out of the ward let me recharge a bit and made me feel human even if it was only short.  There was a shop that sold clothes and I even ventured in there.

I hated leaving Billy but he wasn't allowed off the ward due to him being poorly and on a drip.  The first few days of the dexamethasone weren't affecting him too badly and he seemed to be coping with it, no mood swings and no major appetite change.  The first chemo made him a bit poorly and he felt a bit sick but nothing as bad I was expecting.

I still cried but mainly now at night or when someone I hadn't seen came in, the shock of telling someone knew never got any better.  It felt weird to say my son has Leukaemia.  I read a lot of the literature I was given so I could explain a bit more to people who asked me questions.  I was more confident in asking the nurses and other staff questions without worrying as to what the answer would be.

It was in this time that the granddaughter of a lady i knew through work was also diagnosed with Leukaemia.  She was diagnosed with a different type to Billy but we both bonded and we are in touch to this day, her daughter had to have 5 months treatment and that was it but although Billy will have at least 3 and a half years she is the person who understands me most.

It was so nice to talk to someone who understood and understood 100% its a horrible way to make a friendship but I know Jo will always be a part of our lives.  I remember the days when neither of us slept but were like walking zombies.

Billy still had his bandage on over his port site but he wasn't complaining of pain.  Although he wasn't the child he was a week ago for lots of different reasons he was my Billy and he was determined to fight it.  He would tell everyone that he would beat the 'bad aliens' that were inside him.  That was my Billy and how proud was I...

Chemo

Well the day after the port was put in, the chemo started. As much as I had been prepared, seen the treatment plans for the first 8 weeks to actually start them was another milestone.  Again it brought back the reality of what he had again.  I had all kinds of visions, none of them good as to what the chemo would do to him.  I saw the other children on the ward and saw how the chemo had changed them and to be honest I was scared.

One of the things I had been told is that Billy could have a severe reaction to any one of the drugs.  At the time I was told I didn't really consider this but as it was about to start I did.  I suddenly though what if the drugs they are giving him to get rid of the leukaemia make him react badly and die?  I know this sounds a bit silly now but at the time it didn't.  I was then thinking what am I doing, have I made the right choice?

The first thing was to start Billy on steroids.  The steroids he was give, and is still on monthly now, was Dexamethasone.  Sounds quite a nice name for a drug but believe me its the one with one of the nastiest side effects, but more about that another time!  In Southampton they were tablet form and as I wasn't sure wether Billy would be able to swallow tablets the wonderful nurses crushed them and mixed them in a tiny bit of squash.  Billy wasn't stupid tho, he knew it was a medicine but luckily he wasn't too bad about taking them.

They did warn me about the side effects of the Dex, the eating, the mood swings, the sleep less nights and the nightmares but for the first few days he actually was a complete angel on them!  He was also on antibiotics, firstly for the suspected infection and i believe some to prevent infection after the port had gone in.  He was still all bandaged up and he was very self conscious of the port and didn't want me looking at it, but he didn't complain.

Around this time Billy started having an upset tummy, both ends.  I was quite worried, after stupidly googling the chemo and from what people, other parents included had told me this could be a sign of things to come.  The nurses assured me that it wasn't a problem it was just his body with the antibiotics but if it dd continue he could have anti sickness drugs.  I was also told as long as he wasn't sick for 20 minutes after having meds it was ok.

He then had his first dose of Vincristine. This is the chemo drug he has had the most.  It was a clear liquid that was given via the IV line.  I was warned that this might make him lose his hair, in fact they were sure that the first intensive weekly doses of it would definitely make him lose his hair.  This was one of the things that really upset Billy, I remember my dad offering to shave his head if Billy lost his hair and he was inconsolable.  As it happened I came up with a much better idea, but that's for a later blog!!

There are different stages of treatment, the intensive periods which is very full on, large doses of all the drugs which is there to get rid of the leukaemia and then the maintenance stages which are still a lot for a child but less than the maintenance.  Depending on how the leukaemia cells are made up genetically and other factors including how well the child responds to the first intensive period depends on how many total periods of intensive treatments they have.

Another thing that the testing of the bone marrow etc tells the doctors is how many leukaemia cells percentage wise there are.  I remember Billy's original figure was 56%.  At the time i remember thinking this was awful because it was over half.

The different medicines the kids have to take include a drug called peg asparaginase.  This was injected directly into Billy's thigh muscle.  The fun we had holding him down once he saw the size of the syringe was unbelievable.  I think though that I did manage to get through to him that again it was anther way for the good aliens to get in and fight the bad aliens away!

Although Billy had been quite well when we first came into the hospital the operations and the various drugs began to take its toll quite quickly. People who had been in a few days before saw such a difference, I tried to put on a brave face but inside I was worried to death.  At this time, Billy who didn't like being examined already became a lot worse.  I really felt for both the doctors and for him, I don't think i would like to be prodded about all the time!

The amount of meds he was having seemed huge to me, I was worried how I would cope when we were finally allowed home, it seemed so so much to be responsible for.  But we both wanted to be home so I would have to learn...

Thursday

Well after a very sleepless night for me Thursday came, the day of the big operation. The operation to insert the port a cath in.  Billy was allowed to eat by 7 in the morning so i made sure he had something as after this he was starved before the anaesthetic.  He seemed full of life and instead of being worried at all he was happy, full of beans and generally normal!

My best friend came down on a combination of buses and trains to be with me and I was so glad to see her.  She asked the questions I didn't want to or hadn't thought of and let me talk and talk.  She was fantastic when the Clic Sargent social worker came in and helped me fill out some of the forms.  She had brought her daughter down with her and Billy was so pleased to see her and had fun in the playroom with her.

The morning still dragged though, it was a waiting game and I kept staring at the clock wishing it was that evening and it was all over and done with.  I wished he had been on the morning list so it would have been all over with by now. He was on the list that started at 1 and the ward were told he would be one of the first down, this comforted me as I knew it would be easier.

It was so hard as Billy started to get hungry by 11 but was quite good when we said no to him, it was hard though when the food for the ward came up.  You could smell it too which must have been so hard, he even went up and looked at the trolley.  Kirsty was fantastic and didn't eat in front of hm and they went down to get some food.

As the waiting continued the more things went on in my head.  Was this the right thing to do for him, was the port completely safe? Did they ever go wrong, would it hurt much? Would he get used to it?  The consultants and nurses had assured me that it was completely safe.  They worked really well and there were next to no problems.  Billy would be able to do so much more with the port and his life would be so much easier and would be more back to normal.  I kept mulling it over but I was sure that they were right.

So much for us being first on the list, 2 o'clock came then 3.  The ward phoned up as Billy was starting to get very hungry and very upset.  He was only 3 and was really struggling with not being able to eat. I think he also just wanted to get down there, it must have been hard for him as he had been prepared by so many people and they still kept coming back to do obs!

Finally about 3.45 they came to get him, he got a bit scared then, so I carried him down there.  The operating theatre is on the floor below but it seemed like it was in the next time.  He was really good though and they let me stay with him and hold his hand until he went to sleep.  I still wasn't used to watching my son go under, I still don't think I am now, its awful one minute they are there the next not and they are so floppy.  I left him in tears and went back to the ward.  The nurses tried to comfort me as we went up but no one could.

All kinds of thing were going through my head, would he wake up, was he going to be alright? What if they found something else when they did the op?  He was my baby, my little boy and he was going to come back different, with something inside him.  They had shown us picture of how the port would stick out and I just worried.

Kirst was fab and made me go downstairs and eat a burger king! Bizarrely it was the best thing I had ever eaten, just what I needed.  We ate, had a look around the shops bought some magazines and supplies for later and cards for Billy.  We saw a balloon in the next shop and I just had to get it ready for him coming back to the room. 

We went back upstairs and Billy wasn't back and he wasn't even ready to come back.  The next half hour or so seemed to drag and we tried to take me mind off it.  Then i heard them say he's ready!!  I was so excited, they said he was awake, I was so so relieved.   They then told me to be prepared as he was quite distressed.  When we got downstairs I could hear him before I could see him.

We went into the recovery room and there was my gorgeous little Billy on a bed crying. I just ran up and held his hand, I couldn't cuddle him properly because of the bandages.  He was so unhappy, obviously in pain and couldn't work out where he was.  This scared the life out of me but I had to mask these feeling and just be there.  He didn't look alright at all.  What had I agreed to? Was this a taste of what we had coming?

Back on the ward Kirsty was waiting for us, bless her she waited even thought she had a long journey back ahead of her.  I could see her face when we came back in and she was shocked too.  The nurses were amazing and got him some painkillers.  They didn't seem to do anything and he wouldn't eat and was very distressed.  The doctors suggested everyone but me leave the room as he was so unhappy.   felt awful but they understood.



Watching Billy in bed, wired up to all kinds of machines, on all kins of medicines was awful. You never imagine this will happen to your child.  He was 3 that is no age, why on earth was this happening to us?  I was scared a lot as to what the future would bring, what effects would the chemo have on him, would it change him.

This day had changed things even more for us, It made things even more real. Made me face what was coming and left me wondering how I would get through it and would I be strong enough to help Billy get through it?