July 2012-The bug (finally) goes.Just in time for mum and dad's arrival
It seems a long time since I wrote my last blog and it was all quite doom and gloom after a few hospital admissions and the fact that Charlie wasn't showing any sign of recovery.Well, after 9 weeks of the Cryptosporidium parasite,and feeling completely exhausted and overwhelmed with it all,Charlie did what he does best and fought it off.
Although we understood and recognised Thomas's change in personality when Charlie was hospitalised and unwell, I don't think we realised how much it impacted on him and how much he had missed his brother when
Charlie was "out of action". Thomas was very emotional both at home and school and cried at the simplest thing. Once Charlie recovered things changed and he was back to being Tom.They are the best of friends and of course have the odd
tiff but seeing them both healthier and happy again makes us thankful
for Charlie's recovery from the dreaded bug. Thomas is the best tonic
for Charlie as he just perks him up and keeps him going with all his
imaginary games-and bossiness!Sometimes we underestimate Tom and the impact this dreadful disease must be having on him as Charlies brother. As a six year old,how can you understand why your little brother no longer plays with you and just wants to lie there. I took Thomas to his Occupational Therapy appointment and he drew a picture of himself playing with Charlie only he then drew a bed around Charlie with him playing at the bottom of Charlie's bed. He was very matter of fact about it and it didn't seem to be an issue,just part of the process. Thomas's understanding of Charlie's Cancer is that he will be well again once he is 5 and no longer need medicine to kill the bad guys in his blood.Sounds good to me!
The boys have been so pleased to spend time with their grandma and grandad and they have dressed up as superheroes most days to play with grandad,who is the bad guy-I'm sure dad enjoys the game just as much as the boys do! They have certainly had quality time with their grandparents during this trip and it will be hard to let them go back home but I know they're needed there just as much.Since mum and dad have been here its meant Paul and myself have been able to have the odd bit of time to ourselves and I now get my ironing done,cleaning,cooking,the list goes on...I could get use to this!! I booked that much talked about 2 nights away in the rainforest retreat for myself and Paul and we can not wait!! We go on Monday and fingers crossed,all will be well here for us to escape!
We were given the green light from the Consultant that we could do a short flight with Charlie (under certain restrictions). We flew up to the Whitsundays last week and it was beautiful.We went on a cruise around the various islands and also ventured on the local crocodile safari whilst up there which was just brilliant.The crocs were only feet away from us in their natural habitat which was just mesmerizing.I'm just glad we were in the safety of the boat!(see the video I posted below)
Since Charlies recovery we have made the most of his new found energy (though listened to him when he's needed a days rest). We took the boys out on a family bike ride and it was great to see the smiles on their faces. Thomas has had 2 weeks of school holidays and spent a lot of time catching up on missed play dates with his brother. They went with mum and dad today to see glow worms in the caves an hours drive from here and they loved it. Charlie felt short changed however,and on coming out,asked mum if they could go see the worms now- he thought the worms were lights!
Thursday is Charlie's next big hospital day. He will be nil by mouth from 3am and go into theatre around 11am-he will be starving by then,I know I would be!He will have a lumbar puncture (where they take fluid from his spine), and intravenous chemotherapy administered during this time. He is still on daily chemo which I administer to him at home plus steroids 5 days of each month as well as other drugs to "keep him going". We are very lucky to have a great health care provider and thankful Charlie is currently responding well to the treatment he is receiving.Whilst away,we noticed that his toe nails are dropping off which is very cringy for us and painful for him. We ensured he didn't go in any water (taking no chances after the last bug he got from water) which was a little difficult in the beautiful,tempting surroundings we were in. The irony is that Thomas was the one who came home with something-impetigo! Now we just need to ensure this doesn't pass to Charlie-aggh!
Life with Charlie's illness is a daily struggle as you never quite know what's around the corner,but then again,who does? The words of the nurse who told us on day 1 of his diagnosis to "take things one day at a time" still ring in my ears and that is exactly what we do. We have no real control over what will happen and my job (more so) from that day onwards was to put my needs to one side and be there for all my boys.The stresses we had before Charlie's diagnosis were non existent and we were such a carefree family. Living in Oz has both its ups and downs. We are so far away from what we knew and the comfort of familiarity,friends,family,support the list goes on. However, for now,we realise that home has to be here in Brisbane,in this beautiful country with wonderful people and lots of opportunities Charlie would otherwise be shut off from. So life is difficult,but not all bad!
(Paul will soon be competing in his mammoth 2 day cycle for Cancer and if there's anyone who still wants to sponsor him, please click here )
