Blog 21-Winter 2013 Connors Visit to Oz

During the past few weeks,we have had the pleasure of family visiting from the UK in the form of Michelle,Tim,Isla and Niamh. It has been a very chaotic and fun few weeks where the kids,particularly Thomas and Isla,have had a whale of a time playing.
It was the first time we had met Niamh and she has proven to be very cute-just like Isla I may add. Due to us having minimal "girls toys" in the house, Isla is now trained in playing Skylanders,Ninjas,Ben 10,Bionicles,Hero Factories...the list goes on. All of which I'm sure will come in handy for when she goes back to school! Charlie has been trying his best to keep up with the other kids and is doing well. However,he pushes himself too much sometimes,then gets beyond tired. He is unable to walk distances whenever we go out and still rides in his buggy/pushchair for any outings which can be hard to watch when all the other children his age are happily running around and he's either flat out, or reserving his energy for the important stuff. For me and Paul there are clear differences in his inability to do things that the other children naturally do, but so long as Charlie is comfortable and happy,then that's fine with us and his time will come!

We ventured up the coast for a few days and stopped off in Noosa then went onto Rainbow Beach.We were met at both places with sunshine and beautiful accommodation. Tim and Michelle were amazed by the apartments we'd hired and they were in the outdoor pool in the blink of an eye (though it was chillier than they expected I think)! Charlie had to watch on from the balcony whilst the others frolicked in the water so we decided it was probably only fair to pop to the beach where Charlie could join in this time (less germs).
After hiring a boat,doing a spot of shopping at the markets and playing on the beach our time in Noosa was up and we headed up to Rainbow Beach. Isla held her 6th birthday at this gorgeous spot and we all got up early and went to feed some dolphins on her special day,which was amazing.

The day prior, the Barratts had booked in to do kayaking with the dolphins and whales whilst the Connors went exploring Fraser Island. Unfortunately we were unable to do the kayak tour as Charlie was too young.We didnt waste our day though and headed to the beach where Paul "fished" (I'm sure that Oceans empty) and the boys and I played on the beach. A few more adventures and a couple more BBQ's later and we headed back to Brisbane.

Charlie's treatment day loomed and the Connors headed off to Sydney for a week to do more sightseeing. They travelled by sleeper train and had a great time in Sydney once they arrived. That week gave us the opportunity to manage the side effects of Charlies treatment which were BAD! I never want to take steroids in my life after seeing what they do to his little body and mind. He was a crazy little monster that week and it was a very stressful time. Once its over with,we're on with the next stage,no time to dwell but it was another difficult week. Charlies next treatment day is Thursday the 5th September and instead of taking part in his school transition day where he would meet teachers,peers and learn a little about the school he's starting in January, he will instead be in theatre having a lumbar puncture,chemotherapy,steroids...

The Connors arrived back from Sydney and we all headed off to see Paul finish his second Ride to Conquer Cancer cycle. Knowing that all the money raised on the day goes directly to the research centre to help find a cure for Cancer, makes the ride so worthwhile. Thank you so much to each of you who supported the cause financially or otherwise. Paul and Kevin did a remarkable job and Paul now has the cycling competition bug,argh!!

This last weekend, we went to Sea World where the kids had the best time but seemed pretty shattered by the end of it.

Michelle and myself took ourselves off for a long overdue massage yesterday (seen as Paul bought me the voucher 5 months ago I thought I better use it)! We had a quick trip to the Lookout at Mt Coot tha then headed home for dinner.

Today is the final day of their visit and I hope that they have felt welcomed and enjoyed their stay with us as it has been jam packed with fun and mayhem! xxx

Blog 20-April/May 2013

Yikes! I haven't blogged for a while so here I am, ready and raring to give you a little insight into our goings on in Oz for this year.

After our initial concerns regarding Charlie starting Kindy,he is loving it! He is having the best time and making lots of new friends and having heaps of fun. They go at his pace and don't rush him to do anything which is so reassuring.It's such a positive,nurturing environment where he is so happy. Today we popped by,it wasn't his usual Kindy day, but the teachers had asked the police to come in to chat to the children.I was just praying he didn't mention all the cussing me and Paul do about the cops hiding behind trees to catch you speeding! I made it out alive and no secrets revealed,phew!

Thomas is really happy at school and managed to get himself a Merit Award last week for all his hard work. He's as helpful (and excitable) as ever and Charlie and him seem to continue to be the best of buddies which we love to watch and see their relationship flourish.

Easter proved to be a tricky time this year as my good friend Kate (who's also from the UK) had the sad news that her husband had blacked out and lost his memory.Andrew was taken to hospital and underwent various tests to establish what had happened. During this unbelievably scary time,we 'pinched' her 8 year old son Che, and added him to our brood until Andrew was able to return home to be cared for. Andrews diagnosis was Encephalitis and Kate is doing a fantastic job of juggling hospital appointments,school runs and her own sanity, with the tricky job of supporting her husband in his recovery!We do joke that we could write a book about the dangers of moving to Australia and how bad it is for your health. We try to keep each other positive in such surreal circumstances and it seems to be working!

Thomas,Charlie & Che on egg hunt

Things both here and back home are a little full on at times. On top of the Charlie saga we also are trying to sell our home in order to keep afloat during this tricky period in out life. My grandad has just taken a turn for the worse and is currently in hospital after being diagnosed with Lung and Liver Cancer so things are still very much up and down for us. It was extremely hard for me last week finding out about him, as in any normal situation,I would have boarded a plane to be there with him and my family at such a sad time. The decision was finally made though and I wont be coming back as its just not feasible to leave Charlie here with Paul, in case he becomes ill too (then where would we be)!

On the whole,Charlie is doing remarkably well in dealing with the Cancer and all the horrible procedures that go hand-in-hand with fighting it. He is continuing to have his daily Chemo and regular steroids,bloods taken, hospital visits for more chemo and after 2 years, it is becoming the norm-though he still gets distressed at the thought of the visits but who can blame him? He has been experiencing headaches lately which the Consultant is concerned about so this will be monitored at home and fingers crossed, he'll be fine. Here's a snapshot of Charlie's daily medication,him in hospital having his port accessed for the chemo and a must do shopping trip the day after chemo which I felt so guilty about as he was so weak but we needed food!

It was Anzac Day on Thursday and the boys have been learning about this important occasion at school/Kindy and showed their respect to the fallen soldiers and those still fighting to keep us safe. Later that same day, we took off for a little break which was relaxing,refreshing and lots of fun.

Our adventures took us to Noosa which is a beautiful coastal area approx 2 hours drive from Brisbane. We went with our friends Kevin,Lori and their son Ben and met up with Kate,Andy and Che whilst up there. We all had a great time and Paul did a spot of fishing (and he won a fishing rod in a raffle on his birthday!)whilst I snook off and went to the famous Eumundi markets with Lori-no kids!! We all hired a boat later in the day, and dreamt about the million dollar mansions we'd purchase along the Noosa river,if won the lottery. They were breathtaking properties and not bad as a second home!

Tom & Ben sailing

Paul and Kevin did an 85km cycle in preparation for the big Ride to Conquer Cancer cycle they embark on in August. They did really well, although they were understandably shattered afterwards.



 Paul enjoyed his birthday celebrations and as you can see,loved his Leeds Utd top! You can take the boy out of Leeds,but not Leeds out of the boy!

I'll leave you with a few chosen pictures from our past few outings and hopefully you'll come back to read the next installment of Barratts in Oz!

As a bit of a cheeky reminder,Paul needs to raise $2500 in order to compete in the Ride to Conquer Cancer cycle in August and he isn't doing well with sponsors so far (partly because we hate asking for money)! If we can be cheeky and ask if you can put the word around via email about the cycle,we'd be so grateful. If he doesn't reach the target,he can't take part.

Thanks so much xxx

This is the address for any donations/sharing of the event.
http://br13.conquercancer.org.au/site/TR/Events/Brisbane2013?px=1077539&pg=personal&fr_id=1110

Blog 19.Its the festive period 29.12.12

Where has the past year gone?! It's flown by and it's now coming up for 2 years since we packed up our belongings and embarked on this Adventure in Oz-which was only meant to be for a year I might add! We have certainly had an adventure since moving to Australia which has included both highs and extreme lows but whatever,we can say its been an adventure that wont ever be forgotten.

Since writing my last blog in September,Charlie has had his 4th birthday which we held at the local mountain with a great turn out
of friends. Charlie found it to be a little overwhelming and wanted to go home (yes, from his own party!), halfway through as he was tired. Nonetheless he had a great morning and it was lovely to see the kids having so much fun.

Blog 18-29.9.12 Decisions decisions

Hi again and welcome back to our blog.It's now Spring in Oz and starting to hot up again.The boys have all ventured into the pool and not out of choice, so have I! Charlie forgot he hadn't got his life jacket on last week and jumped in the pool,closely followed by a fully clothed me!!It must have been a funny sight with my skirt floating around the surface of the water and my white t-shirt now soaked- and see through! Luckily there was only Lori and Kevin there to see my disgrace!But at least I saved my son-though not my dignity!

Thomas and his Spiderman cake

Thank you for all the kind birthday wishes,cards,emails and pressies we received as this time of year really is a busy one for celebrating in the Barratt household.

I can honestly say that I had a fantastic birthday this year.Paul and my friends made it very special and actually made me realise for the first time in years that you can't forget to treat yourself just because you have children.I felt really special and had a great time shopping with Kate and Lori for my gifts then going on to have a lovely dinner. I think I was lead astray on the spending front though!!Yeah right.

As you may remember from the last blog, we were due to go to Moreton Island with our good friends Lori,Kevin and Ben. This was a great adventure with the boys having loads of fun whale watching,swimming in the ocean,building sand castles and the dads doing a spot of fishing (or trying to, as all the fish seemed to have miraculously disappeared the day they decided to have a go)! It was such a lovely place to visit though there were some bush fires which got a little too close for comfort at one point and we were certainly glad to get off the island that day as a result. The whale watching was amazing and I had one of those WOW moments whilst standing on the boat watching them swim under and around the boat.It truly was an amazing experience and one which I won't forget in a hurry.

Thomas had a fantastic time celebrating his birthday with friends and he was treated to a special party at Laser force.They had a blast and it was a great success.I'm now busy planning Charlies 4th birthday party for next Sunday and although he asked for a street party,he is getting a Mount Coot-tha party!Basically,we're having a bbq in the local forest area with a few party games and a pinata thrown in for good luck. The street party will have to wait for our return to the UK!

Action shot

Quiet time

 The school holidays are here and I don't know about the boys,but I am shattered!They have been really good but entertaining them is so full on as any mum out there will relate to.This is when 1). I wish I worked and 2).I wish I had family around to help out as that 1 or 2 hours "time out" would make all the difference to my sanity!hehe. Thank god for meeting up with friends and their kids as at least they occupy one another better than we do!

Tom with Sassy

Thomas was invited to participate in a new Children's tv programme out here and he loved every second of it!He met the star of the show "Sassy"and educated her on many things I didn't even know he knew about!As you can see,I was sat watching him from a side room and I had a few chuckles to myself with how funny he was.He was then invited back for a second interview and to his delight, met a couple of Sassys friends. He should be on tv here next year so watching this space!

On a more serious note,we had some bad news this week which has really put us in a financial predicament.On moving out to Oz, there was an incentive to entice us over.This involved payment towards monthly rent and food as the cost of living out here is ridiculously high and the tax is just crazy.The government have now decided to put a stop to this (for workers from overseas but not their own citizens) which means that we are now having to decide what to do for the imminent future.This incentive has been running for years and is typical that it stops once we arrive!We don't really have many options due to Charlies health situation i.e. I can't work as he's too ill,we can't fly home so the only other feasible option (which we are trying our damnedest not to have to do),is sell our UK house as the mortgage on that will also go up as of October and we just can't keep losing money on it. It seems like we have one challenge on top of another with not many ways out. If only we could win the lottery hey! In all honesty, if we could fly home,I think we would as it is a very unsettling situation to be in knowing there isn't a way around it whilst we live in Oz. Having said that,we do still love it out here and don't feel we have served our time as yet. Money doesn't buy happiness but it certainly eases the burden.It will all sort itself out I'm sure but in the meantime I have one very stressed and worried hubby!

Last night I had a lovely evening out with my good friend Sharron.We went to see the theatre production of Jersey Boys and it was fab.We had a great time and it was just what we both needed. The show did remind me of my mum (she wanted to see it when she was over but we just couldn't fit it in) and I had to (rub it in) give her a quick ring when I got in at midnight to tell her all about it.

Before I sign off,I just want to say a massive thank you to Rhianna and everyone else who is involved in today's CLIC Sargent event.It would be so lovely if we could teleport ourselves over to join in the fun but Paul still hasn't quite finished the telport machine yet so that will have to wait I'm afraid! I can't wait to hear all about it and see all the fab photos.Thank you to all of you and especially to Rhianna,you are a star arranging such a big event as it can't have been easy.Well done and it should be amazing! (Kirklands Centre,Menston,11-2pm Saturday 29th Sept for those not in the know about it).

Sometimes being a brother is even better than being a superhero!

Blog 17-A busy month for the Barratt's

Things have been pretty busy this month with lots of excitement around the build up to Paul's cycle ride in aid of Cancer Research, along with the much anticipated dads and lads weekend away fishing and camping.

Last time we were in the pool was April

The Winter months out here are beautiful and we have been making the most of the cooler days with plenty of play dates,meeting up with friends for walks by the river,bbq's and fun days out. The temperature is on average about 22ºC at the moment and the sun is out everyday.It's still too cold to jump in the pool but another month or so and hopefully we'll be back in there!

This month has proven to yet again, be full of ups and downs-but where would a Barratt's in Oz blog be without that?!

Thomas in his school uniform

Thomas has really settled back into school life and is visibly a much happier little boy now that Charlie is bug free!He is a very caring big brother who (most of the time) involves Charlie in everything he does and they have such a special bond. He has asked recently about Charlies medication and what happens if he doesn't take it and hopefully the answers he got were satisfactory (I seem to be a pro at answering those types of questions now)!! He is doing well in school and has a group of lovely friends. Thomas will be 7 next month and it shocks me to think how quickly that time has passed by. This time last year,Charlie was going through the most intense period of his Chemotherapy which had a knock on effect to Thomas's birthday celebrations (or lack of them). So this year, he will be having a Laserforce party which both him and Paul are very excited about!

Watching dvd whilst having his chemo

Such a big chair for such a little man

Charlie's hospital appointment was 3 weeks ago and as many of you will have read from my Facebook page,it was a very upsetting and emotionally charged day. Seeing all the other children so frail and ill, and seeing Charlie hooked up to the machine next to them really hit home. I found it so hard this month and had to stop myself from crying on a few occasions. This experience never gets any easier for any of us.Seeing your child going through the things Charlie and all the other courageous children on that ward go through shouldn't have to be witnessed by a parent once, never mind on a daily basis.This period in our life is as much of a nightmare now,as it was back in January 2011 when he was first diagnosed. Not having family support around the corner is the hardest part of this experience for me. I have always been close to my family and not having the choice to be able to fly back home and spend time with them is very difficult. I would love so much to see all the beautiful children we left behind (and some which have arrived since) but for another 2 years,that won't be possible. Having said all this, Charlie is the happiest child.He puts many of us adults to shame with his resilience and positive attitude. He always has a smile and is a very easy going, loving little boy who adores cuddles-the more the better!!

Larking about with my little sidekick

On a more positive note,we had the great news last week that Charlie got into the Kindy (pre-school for us Brits) we had hoped for. This is excellent news as the kindy is close to Thomas's school and it is a beautiful place which I am sure he will love and make lots of new friends-we can't wait (well maybe a little as I'll miss my sidekick)!

Many of you will have seen the extremely generous fund raising which has been taking place thanks to our friends Kate and Andy-and now many other people too! Kate is a good friend I made over here who is from the UK. She approached me last month as she felt strongly that we didn't have the choice to fly home to be with loved ones for Christmas. After seeing the difference having my parents over here made to all of us,she wanted to do something to help and asked if she could do some fund raising to pay towards a family member coming out for Christmas.After the initial shock,we thought it would be a great idea as we really do need any support we can get and having mum here would be fantastic(not that that's the only reason mum)! Living at the other side of the world when you are use to spending so much time with your mum and can't do anything about going to see her and all the other fabulous people in your life is very hard so this was a fantastic idea. We have been truly overwhelmed with the support and gobsmacked with the amount of people who have kindly asked if they can do organised races on his behalf in order to raise money. Visiting Oz is so expensive and this will help enormously. Having such great support around the world is humbling and makes us very grateful for having such wonderful people around us.

On the topic of fund raisers,I know that Rhianna has been a busy bee organising her own fund raiser due to take place on September 29th at Menston Kirklands Centre from 11- 2.30pm in aid of CLIC Sargent (support service for those families who have a child with Cancer). I don't think I need to explain why she chose this charity!If there's anyway you can support this fundraiser,Rhianna would love to hear from you so please just ask for her contact details if you need them and I'll pass them on. The other day, I found myself (for about 10 minutes or so), trying to work out how we could make it to the event ourselves as we would love to be there. Only to realise that it really wasn't possible and I soon brought myself back to reality!

 Paul took part in the"Ride to Conquer Cancer" cycle 2 weeks ago and it went really well. He personally raised $3535 (£2316) and the whole event raised $5.4million! Every $ of that goes towards the cause and not a cent goes towards the food,shelter etc provided for the weekend. Paul competed as a team (from work) and they certainly had a challenging weekend with all those hills! On top of that,Paul completed the 200km's whilst fighting a virus so he did extremely well. We were there to cheer him on over the finish line and were extremely proud of him for completing the course.Thank you for all the support around this and the great news is that Pauls team have all signed up to take part again next year!

A well deserved relaxing weekend away followed for Paul and Thomas as they embarked on their lads and dads weekend.By all accounts this involved lots of playing,fishing,camp fires and good old fashioned fun! (and beer too of course)!!Charlie and myself had our own fun whilst they were away,meeting up with friends and having lovely relaxing walks and a good old natter!

As many of you know,September/October wasn't very well thought out all those years ago in our household! In the space of a month, we have my birthday,Toms birthday,our wedding anniversary and then Charlies birthday.To celebrate all of them collectively, we have a little break planned for next weekend which should be fantastic. We are spending the weekend with some good friends at Moreton Island and whilst there,we have booked to go Whale watching and also plan to feed the wild dolphins so it should be a memory packed weekend.

Charlies counts are currently low and its clear to see as he's very weak and tires easily.He takes his daily chemo and other medications so maturely and understands that they play an important part in "killing the bad guys" and keeping him out of hospital. He has just asked me if he no longer has to go to the hospital as I'd told him earlier what a great job he was doing zapping the bad guys.Charlies interpretation was that he'd killed all the baddies in his blood and was better now. It amazes us when he comes out with these little things as it shows that he does have some understanding and is able to ask quite challenging questions too.

As you can see,things are still very much up and down and I can't wait for the time to arrive when we are a normal family again, no longer needing to write such blogs to inform everyone of how good/bad life is living with this dreadful disease.That special day when Charlie is given the all clear can't come soon enough for us.We will be able to start living normally again. Doing what we want to and not having the worry of the big "C" looming over us wherever and whatever we do. We never know when the next up or down is coming,but I suppose that's life! None of us know whats around the corner and the added uncertainty we have of having a child with Cancer makes that all the more clearer. We are extremely blessed to have the daily support from friends out here and family and friends back home. I can not thank those people enough who take the time to email,call and contact us on a regular basis to see how we are doing. Having that support is the key to keeping us positive and fighting this battle. It could easily be out of sight out of mind, as we know everyone has busy lives,but the support we get is amazing so thank you so much from the bottom of our hearts.

I couldn't resis

Blog 16-The bug (finally) goes.Just in time for mum and dad's arrival

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!

Living so far away from family and friends can be difficult at the best of times so seeing mum and dad arrive at the airport was the best medicine of all, and great timing after a turbulent few months. I took the boys to meet them and what a fabulous reunion it was. They have been doing dance shows practically every night for us to go watch (cute at first as we get given a ticket,fruit and a drink) but after the 10th time its a little wearing.

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 )

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.