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.