What next....

So i've told Billy, in my own way but i've told him.  Luckily the way I have chosen doesn't seem to have bothered him too much.  He still wasn't keen on taking the meds but he did start being a little bit more cooperative.  He seemed to adapt to all the new changes and challenges we were experiencing.

My friends and family were great, I had lots of texts, calls and FB messages.  I used facebook as an easy way to keep people up to date without having to talk to them all.  I was so so thankful for my iphone, it became my link with the outside world.  It was amazing just how many people cared, the messages of support were amazing.  I remember a really good friend of mine actually writing me a letter.  A proper letter not a text or call but a letter.  That really helped me, she was so so complimentary about me and the way Billy and I were.  She peppered the letter with lots of funny pictures and jokes that we shared.  I have kept that letter and I still look at it from time to time.

My oldest friend who is scared of driving on motorways spent most of Wednesday day time with us, somehow she conquered her fears to help us.  Just seeing her walk onto the ward was amazing, she has always been there for me and we are still as close as the day we met.  Being a mum herself she understood everything i was feeling especially as she had had a poorly child when he was very young.  She made me go downstairs to the shop for 5 minutes to get some food and drink, apart from that I didn't  leave the ward that day.

Billy was still full of energy and loved the playroom as it had lots of new toys in it.  He seemed so well in himself and i felt guilty in some ways him being on the ward with children who were really ill.  The play leader Caron was fantastic, she could see how worried I was about everything and she said she would come and explain to Billy about his operation for the next day and what it would mean.  She brought in a dummy which had a port to show Billy.  He thought it was great especially when the black currant squash they were using as flood leaked everywhere!!

Caron provided us all with a laugh when she brought in a blanket for Billy to choose.  Each child on the ward get to choose a blanket made by a charity to make something familiar and cosy when they come into hospital, they take it home and its theirs.  When she brought Billy a few to choose from one had flowers on, his face was a picture he was so so cross!  I'm a boy he said, boys don't have things with flowers on them!  He was so so funny.

Billy was quite excited by the fact his food was brought into him, he could chose what he wanted and then it was there!  He managed to eat quite well.  I on the other hand seemed to survive on toast and tea, i didn't want to go downstairs as it meant leaving Billy which I didn't want to do, even when others were there I was still worried 'just incase'.

The weather had started to warm up and it was warm on the ward as it was right at the top of the hospital, we could see all the lovely sun out of our window.  I also didn't have many clothes so I had to beg friends and family to bring me in a few cooler bits to get me through.  Toiletries I needed too and luckily a very good friend brought me a lovely set in.

Day time and early evening was full of friends, my wonderful, amazing friends who thought nothing of driving 40 miles, paying a fortune to park, just to be there for us.  How lucky am I, by the end of the 3rd day we had over 15 visitors.  But when they went home was when I started to think, as soon as Billy was asleep and I was on my own the tears came.  I read some of the books and leaflets I had been given and to be honest they made things worst, seeing everything in black and white was awful.

That was what was wrong with Billy, he had this horrible scary disease.  The facts showed me what we had coming, what the chemo could do, how ill he probably would get.  My baby was so well, had I made the right decision.  Id the chemo was going to make him so ill how could i sit and watch? I knew there was no other option but this didn't stop me wishing there was something i could do that would make him get better without the nasty bits.

I saw the children without hair and it made me cry.  The poor innocent little babies, why was this happening to them?  I couldn't imagine Billy being too tired and ill to do things, would his friends still want to play with him if he couldn't do things???

Thoughts, sometimes they do you no good.....

you can see the blanket he chose!

Telling Billy

So I have just been given the worst news I have ever had in my life and I've now got to think about how and what I tell Billy.  They do have play leaders and story books to help but I knew Billy well enough to know that he would rather it came from me.  I didn't want him worried about what he had but I also didn't want him to have to go through medicines, obs, operation etc without knowing why and getting worried that way.

I left the quiet room where Juliet had given us the news and walked back to our room.  My head was spinning, there were all kinds of thoughts inside my head and I was still tearful.  As soon as I walked into the room Billy jumped on me for a cuddle, I cuddled him back like I would never let him go.  I knew the next few months were going to be the hardest thing we have ever been though.

Suddenly as I was sat there with him an he was showing me all his Ben 10 toys I had an idea how to tell him!! Billy was so obsessed with Ben 10 and actually thought that he was Ben 10 sometimes so maybe I could use this. 

So I decided on a way that I would tell him. I would use the Ben 10 scenario.  This would be a way to explain but in a way he wouldn't be scared!  He was already struggling with the temperatures, blood pressure etc so I thought it may help.  Although he wasn't really scared of being in hospital he was getting fed up of being looked at and having to take medicine.

After my parents had gone and we had eaten I sat and explained to him that he had a bad Alien called Leukaemia inside him and that the doctors were going to give him medicine good aliens to go in and fight off the bad one.  He thought this was excellent!  He didn't seem scared at all.  He was interested in what the good aliens would be called and how big they would be!  Luckily he was far too young to understand exactly what he had and what the worse case scenario would be.

I told him that on Thursday he would be having another operation to put a 'landing port' for the good aliens in to make it easier for them to get in and fight the bad aliens.  This all made perfect sense to him!  One of the nurses came in then and she thought it was a great way to explain to someone as bright and inquisitive as Billy.  Hopefully this should make it easier for him to take the medicine and not fight us so much.

Maybe some people will think I handled this wrong and maybe I shouldn't have explained as much as I did.  I have always been honest with Billy and I thought I owed it to hm to carry on being as honest as I could now.  He did ask why I had been crying and I just said it was because I was tired.  At his age he was able to accept that life was that simple and to trust Mum and that everything would be ok.  I just wish I thought the same, I was still angry and upset.

Its awful but I was wishing that it had happened to someone else.  Selfishly I wished it was someone that had lots of children not me with just one.  What had I done that meant my child was singled out and had this terrible disease. As Juliet had explained it might be caused by a virus I racked my brains to try and think where he could have got it.  Should I had tried to find a job with less hours so he wasn't in childcare which could have been where it happened.  Should I have moved where we now lived and if I had stayed where we were he might not have got it?

So much was going on in my head ,the hardest thing is when you are a single parent you have no one else to turn to.  I didn't really have someone to tell my deepest darkest fears to who would understand completely.  He was my child no one else's.  I could talk to other people but they weren't as close as I was didn't feel that fear and worry that I did.  Of course people would understand to a extent but unless its your child you cant 100% understand.

Although I had explained to Billy that he was poorly he didn't feel or even look poorly, he was a live wire up and down, in and out the playroom and playing in the corridor.  I kept asking him to come back in, stop making noise.  Then one of the nurses said to me, make the most of it in a few weeks you will be wishing that he was doing it.  If he was being a nuisance they would say.

Now that was another reality check, what would happen? Would Billy be able to walk? Would he just want to stay in bed.  Would he change?  I saw other children on the ward some with no hair, some with a little hair and some with lots.  Some children looked really ill some didn't.  Some children were in pain.  How would Billy be? Would he cope?

He seemed very excited about the way I had explained the whole Ben 10 Alien scenario and was quite sure that the good aliens would fight the bad ones!  Maybe I had explained it the right way he certainly had spirit and fight in him.

The next few days would tell...

See what I mean - ben 10 mad!

Getting Through It

As I have mentioned we are now nearly 21 months into treatment and to say its a roller coaster ride is an understatement.  Nothing can prepare you for the hospital admissions when Billy has an infection or for the times they have to stop treatment due to a low blood count.  Being in hospital has to be one of the worst things, you know an admission means at least 3 nights in.  As I am a single mum I am the one who is there all the time, although out local hospital provides put up beds there is no way you can sleep on them!

The nurses and doctors are brilliant they know what a worrying time it it.  Billy has picked up serious infections that could have killed him.  Nothing can prepare you for that.  It is the worst feeling because there is really nothing you can do to help you are in the hands of others and you have to trust 100% that they know what they are doing.

When we are out of hospital and Billy is well we fill our time with lots of fun things.  Billy loves music too, thankfully my music taste has rubbed off on him and he loves rock and metal.  His favourite bands at the moment are Judas Priest, Motorhead and Alice Cooper.  I have used this to my advantage ad we have become regular festival goers.  Before he was diagnosed we used to go to one a year now its more like 4 a year!

We go to Download, Sonisphere and Camp Bestival every year and then add another on.  The rock festivals are the best, the people are so so friendly and really take an interest in Billy.  He normally gets to head bang on people's shoulders so he can see the stage!  He has seen some of the best bands in the world and I wonder if he wasn't diagnosed with Leukaemia would I have done so much? It was almost a wake up call that life is so precious and so short and you need to make the most of it.

But I now am grateful for every minute that we have and I am trying to make every minute count for us.  As well as the festivals, we love the cinema, eating out and travelling.  am a big cook so I make lots of lovely treats for us too and love having friends round to eat as we can't always go out if Billy is under the weather.  Although its hard to go abroad at the moment due to insurance and treatment we have managed it!  I am lucky that I have some very good friends and family around me who are there when i need to talk, sometimes that's all you need a person to listen who doesn't judge!  I think what i am trying to say s live every moment you have, make it amazing, make it exciting and make it worth remembering!!!

The picture is Billy at Download 2011

Tuesday Continued

So Billy was back and awake.  I was so so relieved.  Against all the consultants predictions Billy wolfed the whole bar of dairy milk straight down.  He then managed to eat toast and marmite and some cereal.  He seemed completely non plussed by the whole thing.  He wasn't even in any pain from the two procedures!  This made me feel better, surely if he wasn't in any pain then he couldn't be ill could he? I went from convinced he had Leukaemia to convinced that they must all be wrong and he had the virus that there was an outside chance it could have been and not Leukaemia. 

As the day went on Billy was feeling lots better, although he was still on the IV antibiotics he was in the playroom and then running around the corridors like a madman.  This was even better as far as I was concerned, he just had so much energy and was eating well!  We now had our own room which was so much better as we didn't have to share a toilet or could just stay in the room and watch TV. The room had a massive window which gave us a view of the city and surrounding area and we loved watching the cars and people.

After lunch my parents came in and although they didn't share my optimism that Billy was ok they tried to be cheerful.  I even managed to get lunch and enjoyed it. 

Then late afternoon Juliet came back and said she needed to talk to me as she had the results.  My dad stayed with Billy whilst my mum came with me to the quiet room, which is totally different to the normal consulting rooms, all sofas and niceness, to get the results.  She brought nurse Mel in with her and sat us down.

Billy has Acute Lymphoblastic Leukaemia was what she said. Oh my god, the worst possible thing that she could have said.  What was this, what did it mean?  I broke down, didn't even try to hide it.  I couldn't stop crying, why is this happening to us?  Hadn't we been through enough already? Why my son.

Juliet let this sink in and let me try and compose myself then she began to explain more.  Acute Lymphoblastic Leukaemia is most common in boys age 2-4 ( Billy was 3 ) it also was a Leukaemia they knew well how to treat.  If he had to get Leukaemia then this was 'the best one' to get - Juliets words. The treatment was all Chemotherapy and they would be starting as soon as possible if Iagreed.  Of course I was going to agree I said, Juliet said I had made the right choice in having the chemo but in my mind there was no choice.  I had to give Billy every chance that he could to beat this disease and to get better.

Juliet gave me lots of leaflets / books on Leukaemia and in particular ALL and said it would be best if I take in what I could now and then read more later,  Juliet then explained all she could about ALL, i did listen but to be honest I can remember very little of what she said to me now.  One of the things I do remember her saying is that they think it is caused by a virus and if they can find it then they can eradicate it.

Juliet explained that the treatment would be a long time, at least 3 and a half years.  This had been worked out through years of research and for some reason boys need a year longer than girls.  It would be periods of intensive treatment and periods of maintenance treatment.  Billy would need lots of different drugs.  She also said that the bone marrow was being sent away to be looked at so the genetic make up of the Leukaemia cells would be determined which again would dictate what level of treatment, ie how much of the intensive treatment he would need.

Juliet said it was great that Billy had been diagnosed so early but this made no difference to wether they could cure hm just on how well he could cope with the chemotherapy.  She also explained that he would definitely lose his hair.

Juliet then explained that as a lot of the chemo is intravenous (IV) I would have to decide wether Billy would have a hickman line, sometimes called a wiggly which is a line outside the body or a port a cath which is implanted under the skin and accessed when treatment is given.  As Billy was quite an active child and also enjoyed swimming she recommended the port-a-cath.  She explained that this would be put in under general anaesthetic and the it would be there for the whole treatment time.

I went along with Juliet and chose the port- a - cath.  I thought thus would enable Billy to have as much of a normal life as he could.  I as told that the treatment would start properly on Thursday which was went he would have the operation to have the port put in.  Thursday seemed an eternity away but there was nothing that could be done until then.  Fear gripped me what if he needed treatment now?  Juliet answered a few more questions and reiterated that Billy had a very good chance and then we went back in to Billy.

I didn't know what to say or do, how to you tell a child they have Leukaemia....

Tuesday

After a night of next to no sleep for me, but a surprisingly good night for Billy Tuesday came. This should have been a sign for me of how well I would be come acquainted with Red Bull and other caffeine based drinks!  The noises of the ward were all around us, nurses talking, phones ringing and doors opening and shutting.

Billy wasn't allowed to eat as he was having a general anaesthetic and he was actually very good about it.  I was feeling very nervous, nervous enough to make me sick.  What answers would I get today, were they going to be good or bad?

Billy was right near the top of the list of paitients who were going to have procedures.  This meant it should be over and done with quite quickly without much waiting about.  The waiting is the worst.  You have to try to amuse the kids whilst keeping their minds off the fact they are hungry and that they are about to have anaesthetic.

The Nurses came round again, made sure his blood pressure, temperature and other obs were all ok.  He had more antibiotics then the consultant came round to check we were ok, explain again what was happening and to get me to sign a couple of consent forms.  When you actually read them they are scary.  A whole list of things that could happen if things went wrong.  Although its a small chance its enough to make you think.  My nerves were bad enough then to read the forms thing were magnified again.  Was this the right thing to do?  Was it right or was it all a big mistake?

Next thing i knew it was the time to take him to the room where he would have his anaesthetic.  I carried him in my arms and he seemed quite cheerful.  He asked me to make sure he had a big bar of chocolate for when he woke up as that was what he wanted! I remember the consultant saying get him one but only a small one as he might not feel ready for it. 

We walked into the room, I was so so scared. This was it, real again.  Was e going to be ok? There was what seemed a massive amount of people ( although it was probably only 5). They laid him on the bed at which point he started to get a bit worried and ask me what was going on.  This broke my heart.  He wanted me to cuddle him which they let me do.  Then the anaesthetic was put into his arm, suddenly that was it he was floppy and asleep.

That was it, I broke down.  It was too much, I kissed him and they ushered me out.  I didn't want to go, I didn't want to leave him.  He looked so little so on his own.  Watching your child being put to sleep is the worse thing in the world I imagined it was what it would be like to watch him die, one minute there the next nothing.  It was horrible I just wanted my baby awake.  Why was this happening. I was there on my own which probably make it worse.

One of the doctors followed me out of the room and asked me to sign more paperwork.  One of the things that they wanted me to sign for was the chemo.  Me sign for chemo to say it was right, what sis I know?  How could I sign for something?  This was getting more and more scary,  They assured me it was all ok and off they went.

I was told to go downstairs get what i needed form the shops and when I came back we were being moved into a room.  I thought we were only there for one night, what was going on??  I did literally run downstairs to the shops and get a few bits but I was up and down in about 10 minutes.  I wanted to be there to wait for Billy waking up.  Why wasn't he straight awake and ready? Whilst he was still asleep they helped me to move all of our stuff into a room.

My phone kept beeping with supportive texts.  This didn't really help much although it was nice to hear people cared.  I just wanted to have someone there to give me a cuddle, tell me it was all going to be ok and to make everything all right.  But there was no one.  When was Billy going to wake up, he was my world and I was his....

next hospital!

So that was it, we were on our way to another hospital, this was the hospital who would tell us exactly what was what.  Stupidly I googled leukaemia before we left so I had all sorts going on in my head. Billy slept most of the way, I spent the time texting or calling people who needed to know what was going on. The fear was still there inside me, I can't remember much of that journey.

We got there and went up to level G where I got my first view of Piam Brown Ward.  Bizarrely all I can remember as a first impression is the parrot they have drawn on the wall! They got us straight into a web on the 4 bed ward and looked Billy over.  He was quite scared now but he let them do his obs. He had a bit of a temperature so they decided that he needed to have antibiotics to be on the safe side so they put a cannula in. Billy didn't like that.

I met our consultant Juliet for the first time.  She is lovely and made me feel that we were definitely in the right hand and that we were going to be looked after well.  She explained what would happen the next day, Billy would be put under and a bone marrow sample taken and a does of chemo into his spinal fluid would be administered.  I asked did it mean that he definitely had leukaemia, I was still clinging to that small hope.  Juliet said they were pretty sure he did and that they needed to start chemo asap.

That was it, reality again, I remember being sat in the playroom when Billy's teacher phoned and breaking down in floods of tears to her.  No one could make it right, I felt totally and utterly helpless, normally there is something you can do but there was nothing, it was all out of my hands. What could I do? Was everything ever going to be ok again?

They then gave Billy a fluid drip as he was a bit dehydrated. He didn't like the drip as it restricted him.  They brought us some food and we curled up together, Billy went to sleep and then the tears came again.  I closed the curtains round the bed to give us some privacy and to be honest I didn't really want to talk to anyone at all. I didn't want to hear anyone elses story just wanted to be us. Really all I wanted was to pack up our stuff and go home and it all be a bad dream.

The texts were coming in thick and fast, so many people cared about us which was amazing, i text back as many as I could.  My saving grace over that night and the next few days was my iphone.  I could be in touch with the outside world! I had te Internet and facebook and email what else did I need!

Billy wanted to cuddle me all night so mot much sleep as he was so hot and the drip kept beeping and he needed obs done.  I was too worried to sleep really, what would tomorrow bring, would it be good news or would it be bad?  Billy must have been worried as well but at least he managed to get some rest.  I was worried about te general anaesthetic too, he had never had one, would he be ok?  Would he be in pain when he woke up, even would he wake up?

Scared wasn't the word, I don't even know how to describe it. Adrenalin and worry took over so the lack of sleep didn't matter. Tomorrow would tell where we stood.

5 little words

Well that was it, five little words, 'we think Billy has leukaemia' and my world was destroyed. Not turned upside down, not a bit different, destroyed. The 19th April 2010 the day our world was never the same again. I can honestly say that I have never ever been told news like it.  Billy was my baby, my world.  I felt sick, I felt dizzy I felt numb. My immediate reaction was to grab hold of Billy and hold him tight.  He just decided to shout at the consultant and ask him why he had made his mum cry! He had no idea what the words meant, this I guess is a good thing.

Martin, Nikki and my mum were great, I think they could see I was in so much shock. Martin did try and say more but I couldn't tell you what he said.  What was I going to do? Why was this happening to us? Was he right, was Billy ill.

The first thing I said was "are you sure". I needed someone to say no actually we might be wrong he could have something else, something that wasn't a cancer.  But Martin replied we are 99.9% sure there is a small possibility is could be a rare virus but that is a minute chance. Ok so this was as bad as it could get, or could it be the virus.  My mind was on overdrive.

I remember just holding Billy and then looking at him, wondering why this had happened to him, he was just a baby, an innocent, a child with so much life in front of him.  I was vaguely aware of my mum trying to hug me and being in tears herself. I think Nikki tried to hold my hand but I can't be sure the whole thing is a blur.

Martin gave me a minute then told me what was going to happen next.  We needed to go to Southampton hospital for a Bone Marrow test the next morning.  This would confirm Billy had leukaemia and what type of leukaemia he had.  I wasn't even aware there were different types of Leukaemia, now I'm a bit of an expert. He said they were expecting us this afternoon by 3 so they could talk to me, see Billy and start things going.  It was best if we went then as Billy would need to be starved from midnight.

Then suddenly, bang, another emotion took over, fear. Was my baby going to be ok? Was my baby going to die, I didn't know a lot about Leukaemia at all at this point all I knew was it was a cancer and in my mind cancer was deadly.  Oh my god, my child had cancer. Why did he have it, what was going to happen to him. I couldn't cope with this at all.  You hear the stories of children dying from Leukaemia was this going to happen to Billy?

Its just me and Billy so I didn't have anyone who could really truly share what I was feeling, he's just my son and no one would understand.

I made my worst fear vocal, I asked Martin was he going to die? Martin couldn't answer that. That made me worse, tears were falling at a mad speed now. All that was going through my mind was the worst case scenario, why was this happening? Was it my fault? Through all this Martin and Nikki were brilliant, they didn't try and stop me from saying what I needed to and made me feel like they had all the time in the world.

Martin said use his phone to phone whoever I needed to somehow I managed to phone work. Tina was amazing, she let me cry down the phone as I explained I wouldn't be back in and I wasn't sure when I would be back. Unbeknown to me Martin had already spoken to my gp and arranged a sick note to cover the first two weeks I would need.  I then phoned Billy's nursery to let them know he wouldn't be back in and could they let the school know.

Nursery too were great, I sobbed my heart out as I tried to explain. The manager said he would sort everything, not to worry just to get myself and Billy sorted out. I made one more phone call in the office to my good friend Steve and asked him to let a few others know.  Once I had told people it was even more real, there was still a part of me hoping that they were wrong it was a virus but in my heart of hearts I knew.

Martin went through the arrangements, what we would need, who to ask for etc. To be honest a lot of this went over my head, i still kept cuddling Billy. The only question I asked was would we be able to shower up there.Bizarre but that's what went though my head!  I didn't want him out of my sight or even out of my arms.  My mum then phoned my Dad to see if he would take us to Southampton hospital as I wasn't in the frame of mind to drive.

After what now seems like 15 minutes but what must have been about an hour, I got up to go.  When I stood up I was shaking.  When I walked into the room life was normal, now what was going to happen to us, was life going to be normal ever again?  I remember walking out of the ward thinking everyone was staring at me as I was crying, truth is I doubt anyone was but it felt like it.

I arranged what time I would be picked up then we walked out into the sunshine.  I phoned Steve back and was shaking and crying he was so so good, just told me everything was going to be ok

Somehow I made it home, its only a mile away but it seemed further.  Billy was asking me the whole way what was wrong.  I had to pull myself together and act normal so he didn't get worried.  I told him we were going on a  little holiday so they could make him better.  He seemed fine with this and we got home, got packed and washed and ready.  He took some of  his toys, including the new bakugan I'd bought him.  I had a few more tears when he wasn't watching.

My best friend phoned, she could barely understand me but when she did she was in tears too.  I was under strict instructions to phone as soon as I knew more.  Suddenly my parents were there to take us to Southampton.  The next part was about to begin...