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....