Blog 14-30.1.12 A year since diagnosis

Welcome to the lastest blog where I try to give an overview of the past year now we've officially been in Oz a year. Its hard to write this blog and not talk about the life changing experience we had once we arrived here.

We reached our year anniversary of arriving in Australia at the beginning of January which was met with a mixture of feelings.Australia is a beautiful country which we can't wait to explore further once we get the green light to travel further afield.The boys have such a good quality of life here with beaches,bbq's,play areas on every corner the list goes on.But the downside is being so far away from those you love.

As most of you will know,its coming up to a year since Charlie was diagnosed with Cancer-Monday 30th January to be exact. He has gone through so much in the last year and it has been the most testing and difficult year of our life.To leave our wonderful family and friends behind to embark on what we hoped would be the adventure of a lifetime,turned into our very own living nightmare within 3 weeks of arriving in the "land of opportunity". On receiving the shocking news of Charlie's diagnosis,which seems like only yesterday,we have been on a constant and unpredictable roller coaster ride of emotions.

In a funny way,and this may sound crazy,we are thankful that we went through some of the past year alone as seeing Charlie in the first 10 months of his treatment was not a pretty sight. He went through a new "budda" look,he lost his mobility for a couple of months,he lost complete interest in anything other than food,he had the worst screaming fits,didnt sleep at all day or night,had the constant munchies,and many other nightmarish changes which were all due to the drugs he was taking.Most people back home don't truly know what's been going on here as like anything, its difficult to comprehend without seeing it. Life for us has been a huge challenge since moving to Oz. At times it's been a struggle with trying to juggle everything between the two of us.I imagine that not having people close to us see how ill Charlie was/is has made the tough times easier to get through as you don't have the emotions of others to also try to manage as its hard enough containing your own!

There have been many times we have wanted a rest,just someone to take over for an hour whilst we recharge our depleting batteries.There have been days when we have been completely exhausted and just wanted to sleep but hospital would be calling-or one of the boys! I miss family so much and know that the support would be there in a shot if we lived back home but it's not to be,for now.

At times,things are still very stressful and worrying and we have to always think about Charlie's health before commiting to any social invites. Not good when you're trying to build new friendships in a new country when you just want to say YES but have to decline,but people understand.

It has been a very difficult year and thank god for skype! The number of calls I've made to my mum when I've been tired beyond belief and found things really hard to cope with-its a good job its free as Paul wouldn't like that bill! Her words have always been encouraging and positive and put me back in the space I needed to be in. Not sure what I would have done without the support from her and of course so many others who have sent wonderful messages our way.Thank you as your support never goes without recognition from us and picks me up at those moments when it's needed most.

Anyway,onto the good stuff! As you know, we have been house hunting for a rental with a pool and finally our luck changed this week and our application was accepted,Yipee!The pool was a necessity for Charlie.After taking him along to Tom's swimming lessons and seeing his eagerness at wanting to join in with the other kids, it became vital that we got a pool as he is still unable to use public pools due to the high risk of infection.Our luck is changing!It will be a bit of a drive to school but for the boys to be able to step out of their back door and have a splash in their very own pool,it will be worth it.Just in time for my sister and her monkeys to join in the fun!!

Rather than dwell on the 1 year anniversary of Charlie's diagnosis,Paul has enrolled himself,(and now roped quite a few other people) into doing a 124 mile cycle in August,to raise money to fight cancer.He has become very competitive already and is trying to raise as much money as he can for such a great cause by pitting the Aussie donations against the Brits to see which "team" contributes the most.So please show your support and give whatever you can
by clicking here.
Thomas is back at school this week (phew)so things have quietened down at home.The last couple of months have been the first time that Charlie has been a normal noisy,boisterous child which I have to keep reminding myself is better than the alternative that we had last year where he sat on the bed watching dvd's and having books read to him-not so easy to remember when he's screaming though!

It was Australia day on Thursday and I finally got to spend some 1-to-1 time with Thomas which was well overdue.We went to see a film of his choice (Chipmunks),had some lunch of his choice(Mc D's but dont tell Paul)then bought a small treat from the toy shop. He's also gone through so much this past year which is easy to forget,and hearing parents comments about how confident and well adjusted he is makes me so proud as you do worry that the focus has been taken from him or that he has suffered from whats been going on in some way.

The friends we have made over here continue to be very supportive and caring which makes life easier.It has been a very surreal year which I would like to say thank you for helping us through.It has been hard not having direct contact with you and that would have been so fantastic if it was possible but we have fought on and got through (hopefully) the worst of it. We had no choice other than to find that inner strength and get through it together as a family and I think we've done OK up to now. I miss you all and wish so much we could fly home to see you (and for that much needed rest)!Just you wait,when we arrive on British soil,we will have the biggest celebration ever as that will mark the fact that Charlie is well again!I dream of that day...and it will happen!

Just to show you that it does rain down under.We took the boys out in their puddlesuits for a splash in the local forest today-and it was wet!

Blog 13-2.1.12 Christmas

Happy New Year Everyone! We hope you had a fantastic time celebrating the festive period and have recovereed from those hangovers!

The last month has been a very hectic time for the Barratt's in Oz. Thomas completed his first year at school after settling in well and making lots of lovely new friends. Charlie has caused us more grey hairs than I care to think about, and we are now hoping 2012 is going to be a much easier year than 2011.

Being so far away from all our lovely friends and family has been hard throughout the whole year and this was made especially harder at Christmas time. Paul's parents were on hand to help us celebrate our very first Christmas in Australia and I think they managed to withstand the hot conditions very well as a 25 oC Christmas isnt the norm for us Brits! Well done Pam and Frank.

The week before Christmas, Charlie managed to give us yet another fright by developing a rash all over his body which sent me and him on a mad dash to A&E the day before we were set to go on a short break.(which I'd planned since March and we were all looking forward to). After being checked over by various doctors,(who were clearly all being extra cautious) we were finally visited by our consultant who believed it was a reaction to the chemo-phew (I think)!We were sent home with strict instructions to return back if he developed a fever etc overnight and with some medication just in case it was chickenpox (if it had been,then we would have had to stay in hospital to be treated). To say we were relieved was an understatement and this kind of fear is an everyday possibility when living with a child with cancer.

Our trip to Noosa on the coast was lovely. We all tried our hand at fishing and Thomas even managed to catch something within the first 5 minutes,not bad for a first timer. The boys had numerous swims in the river (which is more like the sea as its so pristine) and we spent our final day on the beach catching some waves. Paul enjoyed an early Christmas present and went kayaking which he thoroughly enjoyed and is now talking about buying a kayak of his own. Pam and Frank got to visit a pretty village in the mountains whilst we were there and the break was very enjoyable.

House hunting is top of our agenda at the moment as we really need a house with more space!The current rental was taken as there wasnt much choice at the time with the floods hitting Brisbane and the situation with Charlie so we took what we could. I went to look round a couple of houses with Pam (Paul's mum) and fell in love with one of them.It had everything we wanted (maybe not needed,but wanted)! The swimming pool and outdoor area was amazing and the space inside was equally so. Unfortunately the competition out here is so fierce for renting that we missed out. I will keep looking though and that pool will be ours!

The last month has seen us spend time with friends and family alike and it has been most enjoyable. The living space (as mentioned above) has been limited and challenging at times (Frank taking his time doing his hair in the bathroom on a morning,well what can I say, hehe)! We were very kindly loaned a house for a few days over christmas which gave us the extra space we needed and we even had Christmas day out on the decking as it was a beautiful house, over-looking a park.

Charlie has been consistantly tired and energyless most of the time, then he manages to have a mad 20 minutes where he will drive around on his "little red tractor" (aka trike) only to tire himself out and need a couple of hours rest before starting over again! Thomas has been noisy and excitable with having grandma and grandad here but nothing a quick trip to the park doesnt solve.

Last Thursday was hospital day and as usual, the build up to this was immensely stressful for me and Paul. No one likes to take their child to the hospital/doctor at the best of times but when its for chemptherapy, reality strikes every single time and it dawns on you why you're going. As it coincided with Paul being off work,he took Charlie for his treatment and spent a few hours waiting to see the Dr and have the dreaded chemo. Meanwhile, I frantically packed a bag for us to have a couple of much needed days away in the Rainforest. Charlie was exhausted for the duration of the break,with Paul carrying him most places. It was the rest and relaxation we needed after a stressful week dealing with the hospital.

I had a wonderful facial this morning whilst the boys went on a trip to the zoo with their grandma and grandad. It was a lovely peaceful morning which I could have enjoyed forever! "Time out" is timetabled into my diary from now on as I know I dont look after myself well enough (and am constantly reminded of this by you guys)!

After nearly a year of stress and unease about what will happen with our precious Charlie, I am completely exhausted and really feeling the strain of it all at the moment. We try to fit in fun outings which keep the family as "normal" as we can but the fact that we are unable to come home to be "looked after" and supported more closely, is hard. The support everyone has offered to us hasnt gone unnoticed and we appreciate it so much but being here alone,is bloody hard work and also theres a feeling of being trapped at times. To have someone come in and give us a night or 2 off from this rollercoaster would be immense. Living so far away doesnt allow for this and the near future is in Charlie's hands for now.

All we ask for is that 2012 brings us the luck we deserve. We have worked so hard as a couple to support one another through what can only truly be felt by someone going through the same experience and one which we would never wish upon anyone else to have to go through. We like to think of ourselves as naturally positive people which I feel has helped us get through this. At times you do question why? and "what have I done wrong for something so horrible to happen to my child". Realistically you know the answers but they still pop into your head.

We hope to go from strength to strength this year and are looking forward to seeing Charlie get stronger and keep away from any bugs that may be lurking around the corner! Fingers crossed to a happy new year for everyone and thank you once again for the continued support you've shown to us through this crazy,mad year.