Blog 15-The bug saga continues....

 

 Maybe I was a little premature in my previous blog by claiming 2012 was going to be our year as we've already had a bit of a hiccup as far as Charlie's health is concerned. I tried to put off writing this blog in the hope that something positive may happen to us but in truth,lifes pretty grim for us all at the moment. Living with cancer is such a worrying and stressful thing at the best of times and living so far away from home makes it all the harder. Five weeks ago Charlie became ill and had to be taken by ambulance to hospital as he was very weak,couldn't hold his own weight,wasn't eating or drinking enough and was vomiting. Had this been Thomas I would have been worried as any parent would be, but knowing Charlie's vulnerability,it takes the whole meaning to a different level-it was one of the scariest moments of my life.

Luckily we still had my sister and Mark around to look after Thomas, and Oliver and Hattie to entertain him which meant we could focus solely on Charlie and getting him seen to at A and E.( I have never seen anyone jump out of bed in the early hours of the morning as fast as Mark did when I knocked on his bedroom door to tell him we had to go to the hospital)!

After a few weeks of going in and out of hospital for treatment,and not really knowing what was wrong with him,it was discovered that Charlie had contracted a parasite bug called cryptosporidium.This can be potentially life threatening to those like Charlie,who are immunocompromised.He was soon placed on anti-biotics which I was told cost the equivalent of £650 a bottle!You can see why they only administer them to those who REALLY need them at that price.Luckily we didn't have to foot the whole of the bill! That was last week and we are now onto week 5 and he's still being sick in the night (and day) and is so weak.He told me yesterday "mummy,my power has all gone". He is needing to be carried virtually everywhere and his little legs gave way yesterday-he'd only stood for a minute.


Seeing your 3 year old child sitting around all day for weeks on end, doing virutally nothing when you try to encourage them to play,draw, make play-doh-just anything, is the most upsetting thing.He should be playing,running,causing mischief (I may live to regret that comment) not sitting on the sofa with no energy to do anything except cuddle his toy dog "Fluffy" and suck his thumb. His new favourite dvd is watching real life tractors working on the farm which is fine the first couple of times but he has it on repeat (thanks Pam and Frank)!!He asked Paul if he could be a farmer when he grows up and was delighted when Paul said yes "Oh thank you daddy" was his very cute response.


Thomas has yet again been a star with everything that's going on.Its so easy to overlook him and take the small things out on him when you know its unreasonable to do so.When you are exhausted and have no reserves left, I think this is understandable but not acceptable and I have had to apologise on a few occasions!Thomas has clearly been affected by the goings on with Charlie and the juggling act of trying to keep things normal whilst going in and out of hospital gets a little tricky at times but we work through it. They don't call it the "family illness" for nothing!


It was Pauls birthday last Friday and although he couldn't remember how old he was (yes seriously,he asked ME then proceeded to work it out from his birth date).I decided to let him off for his senility and took him out for a birthday meal which was lovely-the company wasn't bad either! Spending time with one another is majorly limited so it's made all the more special when we can get out and spend quality time together. One huge reason we're looking forward to and counting down the days until my parents arrive is that this will hopefully give us the rest and time together we need (and of course we can't wait to see them either)!!


Things were getting a little miserable with Charlie being ill for such a long period so I took it upon myself to look into a short break for us all to go to the Whitsundays.I found a great deal then realised it involved flying (which Charlie can't do)!Anyway, I decided not to get too disheartened and thought I'd ask our Consultant if it would be possible (afterall, its only 1.5hours away). To our delight she told us that so long as Charlies port hasn't been accessed 5 days before flying and we stay on the mainland we should be fine-lets just hope she signs the medical form as I booked a trip there as soon as she said we could go then remembered there were a few more (minor) clauses in her agreement-oops!


Paul went on an 80km bike ride on Sunday in preperation for his two day charity cycle in August which he really enjoyed. He asked me to thank all of you who have already sponsored him and to remind those of you who need another nudge,the link is on blog 13! (or just ask and we can send it to you).

Getting out is proving very difficult but so vital to Paul and myself at the moment. Going out and enjoying the beautiful sunshine and fantastic facilities Brisbane has to offer is not an option during the day until Charlie improves. Instead,I have made it my mission to get out and socialise/exercise on an evening with friends whenever possible. Somehow we need to keep our sanity and "escaping" from the house and switching off is a great way of doing this!


This blog wasn't written to raise sympathy. I thought about putting off writing anything until things picked up at the risk of sounding "poor me" but then thought,"this is life".This is MY life and my friends and family want to hear what's happening,good or bad. I can't always sugar-coat or put a positive spin on what's happening here-although I do try, this is one time I think it is clear I can't do this. Its hard.Its really bloody hard and sometimes I just want to sit and cry and ask why him? What have we done to deserve such a horrible thing to happen to us.We've always done the best for our boys and been devoted parents.

Things are crap for us but sitting in the house all day bored out of my mind is nothing compared to what Charlie has to go through. His smile lights up the room and he has plenty of them.He is such a strong little boy who will keep on fighting this horrible disease until he is cured. I told him Thomas was going to the hospital (Occupational Therapist) and his immediate response was "will it hurt him mummy". The correlation he has between hospitals and pain is so clear and who am I to disagree considering the experiences he has?

Life is so precious and those of us who are lucky to have our health should not moan at the small things and instead recognise how lucky we are. It's easy to sit back and blame everyone else for our misfortunes but it's only really us that can control what path our life takes.Charlie and other children like him are so courageous and don't mope and sit around blaming others-when they so easily and understandably could. They put up with the crap and the pain and get on with life. This experience has taught Paul and myself to NEVER take anything for granted as you just don't know what's round the corner-and believe me,we have learnt the hard way.