The Big Steep Hill

This blog is a lazy one I have to admit. I have stolen it from a past post I have written before on Facebook. 

I was doing training for my fun runs ( why they are called fun runs I'll never know!)  this morning and it was hill runs! A tough task that I never look forward to but love it when I finish them. It involves sprinting up the hill, to walk back down to turn around and do it all over again another 11 times. 

While I was distracting my self from the pain I was reminded of this post I had written around this time last year and found it appropriate to share. The hills may have become even easier still to accomplish and we have also gathered more support and grown as people.

So without further ado here is a post from early this year when Cadel was admitted......

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"Jan 9

So for the past week or so I have been keeping myself sane during this admission by getting out and going for a walk. On the first walk I decided to take a different path then I have used on previous admissions. The signs said "caution step path ahead" I pushed on regardless. It was a tough hill as are most around the hospital but I made it! Today I did the hill quicker and more easily then that first day and as I turned around and looked down at the steep path I had just walked I started to reflect on the last two years. 

Our family has had no choice but to take on the steep path and battle alongside Cadel with his illness. It has gotten easier as time goes on to deal with the steep path and it has made us all a lot stronger too! I myself have changed from the people pleaser I was into someone who is comfortable saying no if it doesn't suit me. I have learned to ask for help a little more too ( still a work in progress!). I think Lo and Xav have become very resilient kids and are more compassionate for seeing all that they do in the hospital. Cadel well he is just wise beyond his years and very well rounded with all that has happened. Scott, I should let speak for himself but I believe our relationship has strengthened where others may have cracked. 

There have been many friends who have found our path too steep and dropped off but more importantly there are those who have reached out their hand and given us the boost and help that we sometimes need to reach the top. Most of the time without us even asking. 

So thank you all for joining us on our journey with Cadel and CF. Your kind words and positive vibes help us tackle our steep path a little easier every day."

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Our support network has grown to even complete strangers with whom we share our story, we hope you continue to learn, share and help push us along.  

K

Counting my blessings.

My day has been a really shitty one! You know the ones where nothing seems to go in your favour. 

It all started in the shower when trying to shave my armpits the razor was blunt, it made me angry. Then my deodorant ran out, this made me mad,  my breakfast wasn't one of my favs but I ate it anyway, thinking about what I would really like to be eating and it made me mad.  ( I'm doing a 12 week program of planned out food and diet). I had dramas parking my car in the school car park this morning and it made me angry. My newish car got a little ding in it, completely not my fault (honestly I had nothing to do with it) I got angry. You can see where I am going with this. To top it all off Cadel's feeding tube became blocked and I had to remove it completely to unblock it. ( this involves removing the whole thing from his tiny little belly and leaving a gaping, stomach content leaking hole while I unblock it. Stomach juices don't phase me anymore obviously but sorry if you are reading while eating!) Then I had to reinsert the bugger, it had only been out for a few minutes and poor munchkin was asleep so it needed a little force. Have to say that in this moment I am not a Mum, I'm a carer.  A mum could never do it as she sees pain cross the face of sleeping child as she pushes a plastic tube into a surgically made hole in the front of a tiny stomach. As a carer it's something I've done several times and will probably do again in the future. Needless to say it was not how I wanted to end my Monday night and it made me really angry and wish the day was done. 

That was until I was having a shower preparing for bed ( why do all the moments of clarity strike you in the shower, a blog for another time perhaps) that I thought oh the day is almost done. I then thought why am I thinking this way. I get to kiss all my children goodnight as I do my last laps of the hallways checking all the obstacles for late night dashes to screaming children are packed up, I get to kiss my husband goodnight as he sleeps beside me, stumbling in after falling asleep on the couch and checking on the kids too. 

I am lucky. We are lucky. Things could of been very different for our family right now if the Drs predictions were right. They didn't think Cadel would be here with us right now. He is though. He is living proof to never give up and to never take any day, shitty, mediocre or good for granted. I am lucky and tonight as I close my eyes and nod off to sleep (after I've cleared out all these thoughts into a blog) I'll remind my self to count my blessings as I am lucky to be able to say that small things made my day shitty and that one big thing hasn't destroyed me or my family. 

Good night, sweet dreams and hope you all count your blessings too. 

K

Sticks and Stones

"Sticks and stones can break my bones but words will never hurt me."

This children's rhyme has a deep meaning for me this week. After watching another story on bullying I realised that sometimes we forget words can hurt! They can hurt a lot actually. 

I was bullied in primary school, year 6 was probably the worst and I was almost moved schools because my parents could see how much it was affecting me. 

I was lucky though, lucky that I didn't live in the world of fast paced technology that we live in today. Bullying never stops now, with Facebook, Twitter and other social media sites the bullying continues and follows you home. Keyboard warriors  forget that even though they sit behind a computer or phone screen that the words the type are hurting someone and that there is a real person on the other side of their viciousness. 

As a parent I fear for my children everyday that they will be a victim of bullying. I'm even more fearful that they will be a bully. I would be so devastated to learn that my child had made another child feel less valued to the community then they are. 

One way in which I'm trying to be a good example to my children is to not use certain words in every day language.  A couple of years ago I decided to make a list of words I don't think we should use and put them up for everyone to see. 

The list consisted of words that I think are not nice words and that are words that are used to harm others and thrown around too flippantly today. I also think that they are words that I think are lazy, I think my kids are better than that and need to really think about all the words they use as sometimes words can be sharper then knives. 

Some examples of my words on the list are: 

FAT. This is a word that I really dislike, I think when used to describe someone it is a vicious word and I have been on the pointy end of this word. My kids don't hear this word used in a negative way to describe anyone and I still remember poor Lorelei bringing home a reader in Prep and it was about five fat fish, she was reading it, came to the word stopped and looked at me like she didn't know if she should say it. I explained that it's okay in the reader but we need to choose our words carefully and we shouldn't use words in a bad way. 

HATE. Hate is such a strong word and I don't think should be used lightly. There are many other words that can be used instead. 

STUPID. I know it sounds strange but again it's a very strong word that can cut to the bone and words like silly can be used instead and doesnt have the power that stupid does. 

That's my point I think, is that some words have a lot of power and can harm , so using different words that have the same meaning but less impact can teach my kids that words can really hurt, sometimes more then sticks and stones. 

They also learn that words can make someone feel very good and special so we teach them to compliment people and to say thank you and make people feel appreciated. 

K

Admission adventures.

Well we have recently just come out of the latest hospital admission for Cadel that was half expected but also a surprise.  We had a planned admission for Cadel that was a 24hour admission to do a top up of IV vitamins. Cadel has on previous admissions had this top up of IV vitamins so now it is almost a necessity to keep his vitamin levels up. It is typically a 20 hour infusion which means that a set volume of liquid vitamins is pumped into his blood stream over a 20 hour period. When we arrived at the hospital though we were given the news that they would like to keep Cadel admitted for a 10 day 'tune up'. For those not in the know about CF a 'tune up' is a term used to describe a course of IV antibiotics to help improve the patients chest hence a 'tune up'.  Cadel had been 16 weeks between admissions and had made it through winter, which totally amazed us and the Doctors but they wanted to just make sure his chest was back up to his baseline as it had dipped a little in the previous month. 

So off we set on the new adventure of this admission. It was tough keeping a relatively well, almost 3 year old occupied busy and happy in a room measuring about 4x4 metres square, as he was hooked up to different IV antibiotics, IV vitamins and feeding pumps. We managed and I think I kept my sanity but I just wanted to share with you how an admission for Cadel typically goes and what happens especially in the first few hours. 

We knew this admission was happening and on which day but we were unsure if Cadel had a bed available so we had to wait for the hospital to call us, this is how our day played out. Yes it is frustrating and tough and it is something we have done over 20 times. It doesn't get any easier, I think we just adapt quicker and take it all on board. 

9.30 We got the call that the CF Clinical Nurse Consultant ( CF CNC) had been to the hospital bed meeting ( a morning meeting everyday to discuss available beds in each ward) and they should have one today but unsure what time as they were waiting for the patient to leave.

11.30am We get another phone call from the CF CNC that the bed should be available by 2pm. 

1.15pm We pack up the car and head in down to the Hospital. 

2.10pm We arrive at the hospital, load up as much as we can and head on into admissions. 

2.30pm We finish all the paperwork at admissions and they send us on up to the ward. We are told on the ward that the room hasn't been cleaned yet so we will have to wait. We head on downstairs to just relax on the lawn. Luckily Cadel is alseep and misses all the drama! 

4pm we get the call from the ward that the room is cleaned and ready for us now so we head up. 

4.15pm a researcher from the Liver research team that Cadel is participating in has caught on that Cadel has been admitted, she asks if they can do this regular ultrasound for research purposes. 

4.30pm Scott arrives at the hospital and both Cadel and I are happy to see him as he is a big support for both of us during admissions. The Dr also arrives at this time and proceeds to tell us it is going to be a 10 day admission and discusses the medications etc. 

5pm Cadel's feeding tube becomes blocked and luckily his Dr is still on hand to help unblock it! Phew! 

7pm Cadel has his port needled. Cadel has had many admissions as you all know and his veins don't cope well with the IV lines so they decided over 12 months ago to give him a port-a-cath* this is a process that Cadel has to go through every 6 weeks as they need to flush it regularly to maintain the line and make sure it doesn't get blocked with clots. During admissions the needles are changed every 7 days to lessen the risk of infection. Although this happens regularly it is not a nice process as Scott and I have to hold Cadel down as the nurses insert the needle and take blood samples. Sometimes the port can be tricky and it may take a few attempts. Hard to explain to a toddler to just keep still when all he sees are needles coming at him. Scott had to leave not long after. We miss him and the big kids already. 

8pm Cadel is connected to his usual overnight feed. He also finally settles and goes to sleep. 

10pm The first of the antibiotics are finally started and I finally can settle down to get some rest myself. 

The next day and everyday after for the 10 day admission is different as they try and fit the meds in around his Physio times and letting us escape etc some points to share though are that at 

8am, 12pm and 3pm everyday is a Physio session. 

IV antibiotics are hooked up for periods lasting up to an hour at 6am, 8am, 1pm, 10pm and 12am. 

He has blood tests at 10am and 2pm on his second day of admission to make sure the levels of the antibiotics are not toxic but are enough to be effective. These blood tests are unable to be taken from the port as it is where the antibiotics are administered and may give a false reading. They typically do a finger prick and then squeeze the required about of blood into a test tube. Hard to watch and again hard to explain to a toddler. 

2pm on the second day the 20 hour infusion of IV Vitamins is hooked up, this now means he must remain connected up to the machines and therefore stay in the room. 

Hope this has given you all a quick insight into our admission. Maybe I will do a post on a typical 24 hours at home for Cadel. Well Cadel isn't so called ' typical' but you all know what I mean. 

K

*In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

Sitting on the edge.....

With Cadel being so well at the moment and avoiding admissions. We as a family have been busy during the weekends just doing everyday things and some extraordinary things. 

Because of Cadel's health we haven't been able to visit my parents who live in a small coastal town 4 hours away for over 18 months. Although we have seen my parents as they have visited us, it's always nice to go back to your home town, even if it is to remind your self why you left in the first place. ( Bit cheeky I know!) 

Not being able to visit for so long has meant that I haven't seen my grandfather in many months also. With the use of some technology it has been great to see him on Skype but there is nothing like giving him a hug! 

I am happy to report that just this past weekend we made the trip down, with the clearance of Cadel's CF team. We had to pack a few extra items then the normal road trip but we made it down and really enjoyed ourselves.  It was great catching up with my grandfather and going back to my hometown. 

CF and Cadel's condition are never far from our mind even when we are enjoying ourselves on trips like this or just hanging out at home. Every step of the way, every where we go CF is always lurking in the shadows, waiting to give you that jolt back to the fact that we have a child with a limited life. 

I refer to it as sitting on the edge of a cliff, waiting and worrying that someone is going to knock you off. Staring down at the black hole that is the unknown. Its like a terrible waiting game. Yes Cadel has been well lately and has avoided an admission for 13 weeks now,  but the fact that the Dr's told us in January that he may only have months left is stuck on loop in my head. Those words have never left me and as each month passes, hubby and I high five but we never stop worrying about the next month.  So even when he is well we are concerned about what's around the corner.  We remain positive and hopeful that Cadel will be a statistic of a good type. We want him to have the story to tell at his wedding that at age two he was told he had months left to live and that he proved the Drs wrong. Oh and don't worry this Mum will invite those Drs to the party, not to gloat but to thank them for all their efforts and for never giving up. 

As a Mum of a child with a terminal illness I don't think that I will ever stop sitting on the edge of the cliff but I know that I can look around and see the family and friends who are waiting to grab me. My support group, my safety net, my harness, they make it possible for me to just function daily but I know that they also genuinely care about Cadel's health too, sometimes they even sit down beside me on the cliff. 

K

My wish for you....

As I sit waiting for my princess to do her Jazz and Ballet classes for the next two hours I think about how hard it is for girls to grow up these days. It has always been hard but I think society has made it even harder. So there are a few things that I wish I had of known when growing up and I thought I would share what I wish for my little chicken! 

****WARNING this blog will be full of positivity and lots of inspiring affirmations! *****

My wishes for you my chicken little:

❤ Always be yourself. Don't change who you are to fit in or make someone like you. If they don't like you for you or take you the way you are they aren't worth your time. 

❤ Appreciate your brothers. They are the ones that will always be there for you and stick up for you. You may need to look after them sometimes too! 

❤ Be kind to yourself. Don't get sucked into what the magazines say you should look like. Women are all different shapes and sizes and no one is perfect. Even models have something they don't like about themselves. Some people are tall some are short, some women have bigger breasts and some smaller. Love the body you got as its the only one you have. Also know that beauty comes from within and shines outside. 

❤ Be your own person. Like what you like and what you don't like. We are all different and if we all liked the same things it would be a very boring world. Don't give in to the pressures to do something just because someone else has the idea that doing that it can be cool or good for them. Make your decisions wisely and with much care. 

❤ Create your own path. Don't follow in the footsteps of others. Nothing good ever comes easily. If you work hard at something you can look back and be proud that you have achieved something special and know that you gave it your all and that no one else did it for you. 

❤ You are awesome. You are smart. You are beautiful. You are kind. You are unique. Have great self esteem and don't let anyone or anything strip it away. But don't be too proud to admit that you are only human. You can be strong but humble. 

❤ Don't be too proud to admit when you have made mistakes. Mistakes mean that you have tried and are living. Learn from your mistakes though and move on. Don't over analyse moments in time that can't be changed or taken back. 

❤ Girls can be nasty and cruel creatures if they want to be.  Don't be a 'mean' girl. Stay clear of these types of people in general. Surround yourself with positive people. 

❤ Choose your battles. Sometimes it's best to let the little things slide. Fight for the big things and be strong about what you believe in. 

❤ Boys, where do I begin! Some will become great friends others will float in and out of your life. The really special ones will love you for you and build you up and never tear you down. Love isn't all Fairytales and Prince Charming but, you will find your soulmate, maybe when you least expect it!  

❤ Be kind to your parents! When you become a parent yourself you will know how much we did, do and have done for you. 

❤ Be kind to everyone you meet as everyone has their own struggles and battles to deal with. 

❤ Be compassionate and treat others how you would want to be treated. 

❤ Smile, be you and love will shine from you and be returned to you! 

K

"Let me be, Mum"

So sometimes it's easy to forget that Cadel is also an ordinary 2 year old as well as a two year with chronic lung disease, liver disease and sufferers from CF. 

Last week I had a few reminders! 

Cadel had a massive tantrum. It wasn't about anything in particular but it was a terrible two tantrum because he didn't want to have a sleep. He was so, so tired and was just fighting it so much. I was holding him as he squirmed and squealed at me for the half hour that it took for him to calm down. I kept reminding myself this is normal, this is normal and then it came to me, I'm not holding him down fighting with him as they needle his port or take some blood instead I'm just dealing with 'normal' two year old behaviour (if there is such a thing as normal two year old behaviour) and I smiled. I know strange that I'm smiling as my nerves are frayed by the screaming and squirming but I was happy in the fact that Cadel was able to be a two year old for once. 

The same week Cadel was having some bad dreams ( probably explained the above tiredness) and just wanted Mum to sleep in his bed to know that I was there. Again I was grumpy that I was having interrupted sleep but then reminded that I wasn't getting up to an alarm on his high flow oxygen machine or because his overnight tube feed machine  was alarming. I was getting up to my son who just wanted his Mum. It's nice to have those moments. To be a Mum and I know that as a parent we all take on many roles but it feels so great to be Cadel's Mum and not Cadel's carer. 

Another moment was letting Cadel play in the park with his friends and brother and sister. It was fantastic and heart warming to see him playing without a care. I can't say that it was the same for me in this instance. It was a park that was covered in sand. 

I was panicking on the inside about any bugs that could be hiding in the sand that any other parent wouldn't have to worry about. Resting assured that I was probably just being over cautious. 

I was panicking about the bugs or viruses left behind on the rails of the stairs as he climbed the stairs for the slide. Reminding myself that I had hand sanitizer to wash his hands when he had finished playing. 

I was panicking about the sand that was now everywhere and now making its way into the area around his button. Upon inspection I found the sand had made its way into the delicate area around his button but I decided it was bath time when we got home to make sure it wouldn't cause any complications. 

On the outside I was smiling and enjoying the park play but inside I was screaming with anxiety. It's a battle to control that screaming and anxiety and keep it on the inside but it is important to do that so that Cadel can be a two year old and not always be a sick two year old. He needs to enjoy the small things as so do we as we watch with so much delight as he discovers all the goodness that this wonderful world has and not just the terrible sterile hospital environments. 

It's also important for his big sister and brother to see him play and have those memories and not just have memories of treatments and seeing Cadel unwell. 

Once more I found myself letting go a little bit more of those little anxiety demons but know as any parent knows you will always worry for your child regardless if they are well or unwell and knowing to learn what I can and can't control is the biggest lesson I could I ever take from all that life has thrown at us. 

K

Precious Little Fighter

It's currently 3.57am on a Sunday morning and I just can't sleep. I was laying there thinking about a friend of mine and all that she and her family are going through. 

I've known this friend ever since she was born as our families grew up together. Her and her sisters are like family to us and she is going through a really tough time at the moment and I am constantly thinking about her but have no idea how to help her. 

About a week ago her second daughter was born at just 25 weeks into her pregnancy. I have no experience whatsoever with a premmie baby and cannot even begin to try and understand what pain and heartache she is going through. 

Yes Cadel has health issues and has his own diagnosis that scares us everyday and makes my heartbreak every time I look at him playing and giggling with his brother and sister but at least I know (well sort of) what's going on. 

My friend has been sent home already from the hospital, while her baby fights away in the NICU, how hard would that be to leave your tiny little baby who needs so much help. I know that she is in the best of care but as a mother you just want to fix things and know what's going on, that's why I'm lucky to be able to stay with Cadel when he is admitted and we are able to always able to know what's going on ( well, most of the time!) 

To not even know what sort of effect if any the early birth will have on this precious pink bundle must feel unfair and scary. To try and explain everything about what's going on to her older daughter who is only young would be tough too. To function as a person and as a mother in the real world but making the time to sit and wish to hold your newborn, another tough task. 

I'm always thinking of you my friend and wish there were something I could do to make it all better. 

I would like my friend to know that I wish her to have the power of advancing time. I wish we could fast forward and they could be home enjoying their new little baby and not have to sit and listen and watch those blinking numbers on the monitors that tower over the precious little body. I also wish you my friend strength. You will need it I'm sure as you watch your little one fight and to guide you through tough times ahead. Also if I have learnt anything from Cadel's health issues it is to lean on the people around you. You can only be strong for so long. Don't see it as a weakness but more as a way to regather and draw more strength. 

For the little one I wish health, healing and time. I wish her the best medical team to help her grow big and strong and be the best person she can be. I also wish her strength. Strength to fight. Fight to be home and to get to know her big sister, her Mum and Dad and her Aunties, Uncles cousins and Grandparents. 

Fight and be strong little one and soon we will meet you. 

K

Dreaming and Making Memories.

Well we have just had a long weekend and it was a rainy and dreary grey weekend but we still made the most of it. 

The first couple of days we spent snuggled up in bed watching DVD's and the last we we went for a scenic drive and had a picnic ( under cover of course). 

The day spent watching DVD's and snuggling is just as important as the scenic drive. We just hung out all together at home caught up in our own little world with no cares and just soaked in the family time. 

We need to take this moments to make special family memories and I remember as a kid going on road trips close to home and exploring great little towns. The kids were so great and really loved being away from the screens of technology as did hubby and I. We took our time and explored the many lookouts in the rain forest and read the educating signs strategically placed around the place. Although it was still drizzling we made the most of it. 

It was great finding a scenic lookout ( although there was so much fog we really couldn't see whatever it was we were supposed to see)  where we enjoyed our hot chocolate, brownies and listened to the bell birds singing. We then drove on checking out little secluded spots and soaking in all the fresh air. We found a great covered area to have our picnic. 

As much as it was great to refresh our souls (I know, bloody Hippy Dippy saying!) it is important to make these memories. Sometimes we forget about Cadel's illness and feel just like a so called 'average' family and I hope the kids cherish those moments that hubby and I work so hard at making for them. We took the obligatory selfie photos  and family photos and tried to take some 'arty' shots of the beautiful rain forest. It was great to have a day where we weren't irritating each other, there was no yelling and screaming at each other, no bickering and there was plenty of 

smiles, giggles and happy sounds. 

I think the kids enjoyed it as much as we did and hopefully they lock it away in their memory bank. Hubby and I were checking out the cottages for sale, dreaming about buying a little run down cottage to renovate into an open one room little get away with great views, a cosy fire and no TV or phone reception where we can escape the real world and enjoy our family time. Wouldn't it be great. One little cottage in the hills to escape to in winter and then another by the beach with just the basics to enjoy the warmer months. 

Oh well I can dream anyway, have to buy some lotto tickets and cross our fingers and toes to help this dream come true. But that is what life is all about making plans and dreaming and working at those dreams to make them happen. 

K

Rudely Interrupted!

Scott and I since Cadel's diagnosis have always said that CF would have to fit into our lives and as much as we practically can we don't let it interfere with our day to day living. 

The past week we have had two rude interruptions from CF and it all became too much. 

I had organised to treat some lovely friends to a special catered for high tea. It was a way to say thank you from Scott and I to friends who are forever helping us out especially when Cadel is admitted.  I organised it all from the hospital via emails and we sorted out a date that suited everyone ( not always an easy task). I kept the fact that it was catered for and a high tea a secret, well that was until CF interrupted! 

Two of the three friends kids had been sick so being good friends (one having a CF child herself too) and knowing how devastating Cadel getting sick can be said they couldn't make the afternoon tea. Well I have to say I immediately started crying, not just tears but I had my ugly cry going.  You know the one I'm talking about the one where you just have no control over it and you know that it doesn't look attractive! Definitely not the delicate cry you see in the movies! There was also the obligatory CF sucks with loads of swearing before and after those words. 

After much messaging back and forth, a phone call, spoiling my secret plans by telling the girls and a lovely, fantastic husband who cleaned up the yard in record time, we sorted it all out, had the afternoon tea in an outdoor area with no contact and we got to say thank you. It was a lovely afternoon beside the pool, waited on with lovely food and great company and we got to feel lady like with our tea cups and cucumber sandwiches, the conversation may have not all been ladylike though, mostly it was oh hell, who am I kidding that's what friends are for! 

The second interruption occurred the same day! Probably why my emotions were so high! Lorelei loves to write stories and draw pictures so I wasn't surprised when she came to me with a book she had written about our family. The words literally took the wind out of me and scared me for things to come. As most of you know Cadel has been really unwell over his life time and doesn't have the best outlook for the future. For those that don't know in September 2012 the Drs told us that Cadel is unlikely to make it to ten but then after more infections and more interventions the Drs said in January 2013 that it now may only be months ( really tough to actually put that into black and white, the first time I've done it!) Scott and I are forever hopeful that this is not Cadel's fate and we have never mentioned this to Lorelei and Xavier as its just not relevant to them right now but we will discuss it when the appropriate time arises. 

So when Lorelei came to me with her story that read these words I was fearful and completely not ready. 

" Our Family. Once upon a time there was a little boy who had CF and he was sicker then anyone. One day Cadel went to hospital because he was sick. He still gets sick when he has CF. The End. "

We make an effort to explain to the kids that all CF sufferers are different and not all are as sick as Cadel and they have met other CF kids and even met Peebo and Dagwood, the performing clown brothers who both have CF. In their world though Cadel is the sickest person they know. I know the kids know and feel like there is more than what we let on and the day that we have to explain the full diagnosis of CF scares me let alone the conversation about Cadel's diagnosis. 

So as much as daily life carries on around us and we get back into our family routines CF is always lurking in the back of our lives and waiting to rudely interrupt. BUT the way we react to these interruptions is what is important and we are forever in the good fight against the evil that is CF and even little small wins like still being able to thank our friends are wins against CF nonetheless. One day we will have a big win and Cadel will prove the Drs wrong. 

K

Finding the positives in the negatives.

Yes Cadel is admitted again and once more I have missed those moments in time for the older kids and I can't get them back. 

Today marks the 9th day of Cadel's admission and so far this admission I have missed Xavier's Mother's Day afternoon tea and Lorelei will be performing on assembly at school this week and I'll miss that too. If I listed everything I have missed for the older two kids while looking after Cadel when he is admitted it would be very overwhelming for both you and me but I'll list a few. There would be two Christmas mornings, dance open days, Taekwondo gradings, swimming lessons and Mother's Day sleep in, two Mother's Day school days, assembly performances and school holidays as well as two wedding anniversaries with hubby. 

I've cried so many tears over all of this and now I'm just getting angry. I'm angry that this crappy terrible disease takes so much away from me, my family and my friends families. I'm angry that some of the really good CF friends that we made in the last 12 months or so can't get together and have a family BBQ, kids and all, because of the risk of cross infection. I'm angry that CF doesn't get the recognition that other illnesses get because the sufferers don't look sick. I'm angry that we have to beg and plead for help from the government to only be knocked back time and time again because CF doesn't fit into the right category. 

This disease takes so much and it's robbing me of time and precious moments with all my family. I just hope that the kids don't grow up and resent me for missing these moments. I don't think they would as they have become so resilient and just take it all on board. This weekend when. I told Lorelei that I would most likely be missing her assembly performance she just looked back at me and said 'yeah I know Mum'. Lorelei also comforted Xavier when he realised I would miss an event reassuring him that it's ok because he would have Nan there.

It's hard being away from my husband too. I miss our debriefs on the couch of our days, watching our favourite TV shows together and even just kissing him goodnight.  

All of this melts away when we are home and just have fun and be a 'normal' family creating memories. Having a picnic on the floor or having movie night on a Saturday night, splashing around in the pool or running around in the back yard playing with the dogs and chasing each other. 

I may have missed some important moments but I try my hardest to create more that the kids will remember and cherish. 

As I come to the end of my therapeutic writing session I am reminded of the positives that this disease has brought into my life along with its negatives. 

Scott and my relationship has grown stronger with all the challenges we have faced. He is my strength, my courage, my best friend and my partner in crime. He makes me laugh and giggle and feel so loved. He gets up early to come and visit Cadel and I before work but also stays up late to make me dinner for the next night. 

Lorelei and Xavier are compassionate little souls who are able to cope with more than I give them credit for. 

We have met so many beautiful and special CF families who's friendships we cherish and feel like we have always known them forever. Most importantly without CF we most likely would have never crossed paths. 

I have found strength in myself to stop being a door mat and to do what is good for me. 

Found true friendship and what it is like to have a great support network surround me and my family. 

Have met some wonderful and caring staff at the RCH who inspire me everyday to chase my dream of studying to be a nurse. 

I am determined to be healthier for my kids as they all depend on me so much, especially Cadel as I am his registered carer. I have found so much more confidence since I have become healthier, I am a work in progress and have gained a lot of self esteem back. 

So as much as sometimes I want to yell out YOU SUCK CF ( well probably with more swear words) it has brought some good into our lives. 

K

Sentimentality vs Hoarding!

I have a confession to make.

My name is Kristy and I am a huge sentimentalist and I'm afraid it may be verging on hoarding.

We all have those cupboards or doors that barely close because of the stuff that gets shoved in there just because you can't bare to get rid of it, just in case you need it or because it holds a special memory. Well I'm hoping you all do! Please don't tell me I'm the only one.

I have to say that I have inherited it from my father and sadly one of my children seems to be going the same way. I'm not too bad, I think I have become better at getting rid of things that I no longer use but there are just some things that are too hard to get rid of.

The toughest is the baby things. I have managed to get rid of some baby items that we no longer need as we have finished our family. Although I had to fight that little pang of 'what if you need it' and the even worse ones of 'all the kids used this' as those moments frozen in time flash through my mind, as I'm handing it over, knowing that it is going to a well loved home.

Hubby just this week asked what we were doing with the high chair as at the moment it just sits in the garage in pieces. I got upset and cranky and couldn't deal with making a decision on what to do with it as that means that that chapter is closed and that is the part that makes it hard. It's the sentimental thing that all three kids have sat in that chair, eaten in that chair, fallen asleep while in that chair and made huge messes in that chair. I know things don't hold the memories, my mind does but to give away the big items like that means that there would be a big fight with those panicky pesky pangs!

Also the kids art! Boy does that get out of control. I used to have boxes for each child and kept my favourite crafty creations until that spiralled out of control and the boxes were overflowing. Now we have an art gallery were we can hang the best pictures until they get filed into the big green filing cabinet, otherwise known as the wheelie bin. All done secretly of course because if they the kids saw me I'd be in big strife. There was a good idea I had heard about taking a photo of the art them collating them all together and printing out a photo book. But then what do you do with all the photo books.

Where does it stop?

Please tell me I'm not alone in this mind of sentimentality and that everyone has those treasured every day items that you can't bear to part with, or the onesies so we can really remember how little the little ones were, or even just some of the everyday stuff that you might just need one day!

K

Don't call me super mum!

I'm a mum to three, and one of my children has extra needs of a medical nature that makes me an official full time carer. Yes this statement is true but please don't call me super mum!

I've been called a super mum by a few people and even by some staff at the Royal Children's Hospital (RCH) including some of the social workers but I cringe every time I hear it. Yes I know I do a little bit more than the average parent for my child because he has Cystic Fibrosis but I don't do it because I want to I do it because I have to.

* If I don't do Cadel's enzymes he won't absorb his food and won't get the much needed nutrients from his food to grow big and strong and to fight off infection.

*If I don't give him his physio sessions he can't move the thick sticky mucous that clogs up his lungs and infections will set in.

*If I don't give him his daily nebulised medicine it won't help to break down the mucous.

* If I don't give him his liver medication his liver disease may progress sooner and need a liver transplant.

*If I don't give him his vitamins he may get brittle bones from not getting something as simple as enough vitamin D.

*If I don't give him his antibiotics a simple virus may attack his low immune system.

*If I don't give him his tube feeds during the day he won't get enough calories that his body needs just to be a normal 2 year old.

So as you can see I do it because I need to not for want.

I'm an organised person who loves lists and routine. I again need to be. With two older children at school and extra curricular activities I need to organised and have dinner made by ten in the morning so that I can get to dancing or taekwondo or even clinic for Cadel to have a check up. This is just so that there is some normalcy in our families life. Hubby and I strive to make life as normal as possible for the kids because it shouldn't be normal to spend over a 1/3 of a year staying in a hospital or visting your mum and brother in a hospital. Or helping by holding down your little brother's legs while Mum reinserts a misplaced nasogastric tube. ( a memory of Xavier I will never erase from my mind, he is 4 years old silently enters the room sees me struggling and just kneels down and helps, breaks my heart but also warms it that he is so caring and helpful). Normal should be going to school, doing dancing and taekwondo and playing in a park and not worrying about catching the mucous your little brother is coughing up because you are closer as mum dives for the cloth nappy and races over. ( Lorelei is notorious for this.) So to have some normalcy I need to make lots of lists and be prepared for it all. This is when people usually see my extreme organisation and comment "oh aren't you the super mum!"

I have to also give a massive shout out to my support system which has stepped up into overdrive in the last 8 months or so. Hubby has always been a great support and helps out with all of Cadel's and the older kids needs also but there have been a few friends who have really stepped up without us asking by looking after the kids, cooking meals, asking how we are all REALLY doing, put smiles on our faces and just being there to listen. So I have a lot of people behind the scenes helping to make me look better and look like I have it all together a bit more then I actually do.

So when someone pulls out the super mum tag I cringe because I feel it puts so much pressure on me. Yes you may have said it as a compliment and truly no malice whatsoever but I feel deep down inside there is a guttural scream of "NO" as I then think I can't fail now I have to always be on my game. I sometimes put on a brave face when I feel like my world is crumbling down around me. Those closest to me have learnt to see through the fake smiles, I do this as most people do because I don't want to look like a failure because sometimes you feel there are certain expectations on you. These expectations are probably put on by ourselves and society in general, we have to have it all together and be ready to take on more. Somedays this just isn't the case and I drop all the balls where as other days I'm amazed at my own juggling skills.

So just don't call me super mum, I'm just doing what any parent would do for their child to keep them well and somedays I have really bad days too but smile to hide the destruction of my day. Oh and don't get me started on the whole " oh I don't know how you do it, you are so strong! "

K

Its hard to be the patient sometimes.

So I am one day post gallbladder removal surgery and I am busting to get out of this hospital, why? I don't know the answer. Well maybe I do....It's an enforced rest period yet my mind is racing and I'm so bored because I'm not doing the usual morning routine of rushing around getting the kids ready for school.

I'm also usually the hand holder when I'm in a hospital. I'm very used to being in and around hospitals with Cadel having CF and having 20 admissions and over 10 general anaethestics I have seen my fair share of procedures and insides of theatres but I'm usually the one holding his hand and reassuring him everything is ok.

Being on the other side is kind of terrifying, maybe that is because I've been in and around hospitals so much in the last two years I am more aware of what happens, it may also be the fact that I'm an adult and I'm supposed to ok and tough and strong and not nervous. But who am I kidding as I got wheeled off to the theatre then left alone while they prepared the theatre the anxiety really set in. All I kept thinking is adult hospitals could learn a lot from children's hospitals. They need to still reassure us and make sure we are ok.

It may also be that I'm a massive control freak and the feeling of grogginess scares the bejesus out of me because its that complete feeling of no control. I'm still feeling yuck about all that when I think about it now. For the life of me though I cannot work out why when I woke up I was thinking " I'm stuck in Facebook and Pinterest, I need to get out of here" it was like I was trapped and then I was looking up at the blank recovery ward ceiling feeling ergh!

I would hate to think what nurses and Drs are like when they are patients when it feels this bad after being the hand holder. I know it will help out when Cadel next is in hospital as I have that extra understanding, I just hope that I don't have the Facebook and Pinterest flashback! Shhh don't tell hubby he would just tell me it's because I spend too much time on this sites!

K

Compassion, where did it go?

I am writing to vent and for therapeutic reasons as I feel that I was in a situation that required some compassion from someone and found that they had none, not a bit for me, my family or my situation. The situation itself is not important but the bigger question is when did it become okay to have no compassion for others. After having the biggest gift of compassion of all, being the gift of a pool in our yard how can the great feelings of warm and fuzziness be striped away with one swift move of inconsideration.

It got me thinking about what has happened to our world and what made people loose their ability to have consideration for others. Are we so caught up in our own little world that we stopped thinking of others. Do people still give up seats on the train or bus for the elderly or pregnant ladies. Are you the sort of person who will hold or open a door for a parent pushing a pram? Do you park in the parents park? I know that parents parks are a privilege and not a right but as a mum of three trust me when you have kids to get in the car it's so much easier to be able to open the car door up completely when you have to buckle the child into the middle seat. So why is it ok to park there if you aren't a parent or you don't have your children there. Are you not thinking about the parent that could of used that park for its intended purpose when you see a close park to the shops.

I have found this world to be a cruel one sometimes, don't even get me started on smokers! I just think it is common courtesy and politeness to not smoke around children, let alone a child that has an OXYGEN bottle clearly labelled as an oxygen bottle, hanging off the pram.

We need to stop being selfish all the time start to give and share and be kind. Let that car with the indicator in, in traffic, hold the door open for someone, give up your seat for the older gentleman on your train. I have a friend who was notorious for every time she went through the gateway toll she would pay for the person behind her. This deed went unnoticed by many, had no big fanfare about it all and I'm sure it put a smile on her face as well as the complete stranger that got a surprise when they went to pay. Sadly it's all electronic now but I'm sure that friend has found another way to give.

I think we need to look back at history and the way that people were more compassionate and learn and take note. I know I am. I will set myself a mission to do an act of kindness for a stranger that will put a smile on the receivers face and I hope that you can find some compassion too and do the same.

Lets make the world compassionate once again.

K

Military Precision Packing!

So we recently went away for the weekend and I have to say the packing with three kids doesn't get any easier let alone throw a child in the mix that needs medications and oxygen machines!

I remember the days of just throwing a few things in a bag last minute and taking off but that was what hubby and I refer to as BC, before children that is.

Even as babies going to the shops was a big drama taking extra outfits, bibs, nappies wipes dummies etc. you would never use them then one day you would think ok let's just take the nappy and wipes and then BAM you have the poo explosion of the century ( Mum's you know the ones I'm talking about) and here you are battling with poo and floppy arms and legs and wishing that you should have bought along that extra outfit and wrap to cover the crime scene left behind in the pram.

So back to the past weekend. I must say I've gotten better and more organised at packing and getting the kids involved helps a lot. I have found to pack the kids bags into outfits for each day and then put them in plastic zip locks for the kids to decide which outfit for each day seems to be working well. It's still a military precision operation to get organised and takes a lot of time to even prepare to pack. Cadel has extra things to pack! There are his countless medications his oxygen, the extra oxygen bottles, the hi flow oxygen machine, the folder full of his scripts just in case we forget some medications or they run out, the nebuliser and all its chargers and of course the all important letter explaining Cadel's CF complications and his treatments.

So I'm always doing a mental checklist even as we drive away going through everything in my head ticking it off even though I've ticked them all off physically on the list I wrote out at the start of the week in preparation for the two night stay that we were going on. My anxiety levels go through the roof and I don't think I relax until I unpack at our destination and am sure that we have everything.

I always love seeing the hotel staff and the shocked faces as we unload our massive amount of luggage. The car is always so loaded up for a two night stay, boy but you should see it when we go for a week we almost need a trailer!

K

The A to Z of Cystic Fibrosis ( letters M to Z)

A to Z of Cystic Fibrosis (letters M to Z)

I can't take credit for the idea of the A to Z it was lead off by another family touched by CF also. It was an emotional journey that I took very serious about raising  awareness for CF so I put a lot of heart and soul and thought into my words. It was these posts on Facebook that lead me to the blog as many people encouraged me to do so. So here are our version of what the A to Z of CF means to me and my family.  I have to also give a shout out to the hubby as he also did some entries for the posts. (O,Q and W)

M

M is for Mycobacterium abscessus. This is a rapidly growing mycobacterium that is a common water contaminant. Mycobacterium abscessus may cause chronic lung disease, post-traumatic wound infections, and skin infections in immunodeficient patients.

This is a nasty bug that Cadel has picked up and has colonised in his lungs. The Drs have no real idea how he picked it up but with his low immunity they think the floods of 2011 may have been the source. It was only picked up in tests done last June while admitted and finding no other viruses or infections to cause Cadel to be so unwell. It is not known how long it had been there undetected as it not something they usually test for.

After Cadel had allergenic reactions to the antibiotics that treat this infection he has ruled out some specific medications to target the mycobacterium. While it is set in Cadel's lungs it has also become antibiotic resistant to other medication so now the Dr's treat it to maintain it and keep it at bay and make sure it doesn't get stronger. 

M 

M is also for moments lost. Cadel is having a bit of an off day so he and I missed out on going to Lo and Xav's Easter hat parade. Luckily Scott was working close by and could go. 

It makes me really sad though that sometimes the big kids miss out because of Cadel's disease. There have been many moments I have missed with Lo and Xav, too many to list but two that stick out is the the two Christmas mornings that I haven't been able to see their excitement about what was left under the tree as they see it! 

Tiny little moments that you can never get back lost to this terrible disease that affects the whole family. Thanks for helping us spread awareness about CF so that one day CF won't exist and other families won't miss out on special moments. 

N

N is for Nurses. Cadel has met his fair share of nurses during his twenty admissions. There are the favourites of course in the wards, the nursing students who's eyes are opened wide on the wards, the theatre nurses who he despises in their scrubs, the recent graduates who Cadel teaches a thing or too, the ICU nurses who still pop in for a chat and play when they see Cadel admitted and who could forget Liz the CF Clinical Nurse Consultant (CNC). Liz is the bearer of bad news and a messenger of good news and changes of medications and our first port of call at the RCH when we call. At the moment we are calling in daily on weekdays and skyping Liz too. 

Without Liz we would be lost, she always visits daily when Cadel is admitted too. 

Nurses are the hardest working people in the hospital. Yes the Dr makes the final call but nurses are there to clean up the mess ( literally) and administer the medications, make the bed, spend time with Cadel and wipe away tears, even mine sometimes. On many occasions the nurses are the ones who suggest a treatment to the Dr. Some of them have become friends and will bring in gifts or baked goods. They have got to know Cadel quite well and know that he likes to help give his meds and make the bed. They, like all, people seem to make a real connection with our wise old soul that is Cadel and when he was in ICU they told us that on his handover sheet under complexities it said "extreme cuteness". Would have to agree with that one! 

They have even inspired me. When I have time I would love to go back to uni and study to become a nurse. I can't decide between childrens ICU or theatre. 

O

O is for my offsider! Scott has been my support, my strength and courage always but more then ever during the last few years. 

He gives me a break on weekends from the physio and medications and lets me have a sleep in. 

I couldn't do any of this without him, Scott will always visit in the morning before work and after when Cadel is admitted and then go home to spend time with the older kids. 

He is great father to all three of our kids and my best friend. Thanks Scott for just being you!

O is also for Oh Crap! 

(written by Scott as part of our awareness posts)

Times like this morning, we wake up and say Oh Crap (normally worse), Cadel's feeding tube came out overnight, so while I held his legs and arms, Kristy got it back into his stomach and its all working fine. That was followed by a couple of hours of Cadel not letting anyone touch him and him looking weak and in pain and us watching and waiting. He's all good now though.

Other times he has ended up getting rushed to emergency and once being taken away in an ambulance. There have been loads of these moments in hospital too, but Cadel being the fighter that he is, always gets through it and beats any challenge that comes his way.

It's amazing how well the big kids deal with all of this, today they tried to play with him and he sent them packing, but they never give up on him and eventually they were all playing together in the front room.

P

P is for Paradise Kids. Just last week we were at the Paradise Kids Holiday House. They provided us a getaway for the family that we all needed desperately. 

Paradise Kids is a Gold Coast Children’s Charity founded in 1996 to help children learn life-skills to deal with grief through death, loss or illness. Whether the loss is the death or approaching death of a parent, grandparent or sibling, grief through the stress of separation or divorce, or the child’s own chronic life-limiting illness, Paradise Kids provides programs to ‘help heal the heartache.’ 

The Drs did a great job of getting Cadel out on HITH so that we could go to this great illness support holiday program. We were provided with a week stay in a holiday house on the Gold Coast. They provided all meals and even sent Scott and I out to dinner on our own while someone sat with the kids. They also sent us to Dreamworld for the day with a personal meet and greet with Shrek. There of course was also the serious side of therapy sessions for Scott and I and play therapy sessions for the kids to help us through our journey. It was all topped off with morning tea with the lovely ladies who helped us out and a sand and unity candle to take home with us. 

They are a great charity that provide a much needed break for families just like ours. 

Q is for Questions

(Written by Scott for our awareness posts)

We get asked a lot 'How's Cadel?'

This is a really hard question to answer, so we normally say 'He's going ok', when most of the time its too complicated to really say, and you may not want to know all the details. I watch some people shut down when I start talking about lungs and sputum etc.

When anyone asks Cadel anything at the moment he responds with a definite 'No', no matter the question. Unless there is a smell in the air, then its 'Dad'.

Specific questions are great, because we can answer them with a meaningful answer. Feel free to ask questions about Cadel or CF, we love it. I love it when the doctor and dietitian asks how his poos are. Poos are very important to them.

We were in a shop the other day and the manager asked 'what's

going on here' probably because he had his IV infusion bottle

over his shoulder, I told her he had CF and needs antibiotics and it was all good, better than her staring at him like a lot of people do.

When he is in hospital and Kristy is with him, I probably ask her 10-20 times a day if anything has changed or have the doctors said anything new, it really gets to her because I'm one of 10 people asking the same thing and normally nothing has changed. I know how annoying it is cause she does it to me when I stay with him. It's just cause we all care.

R

R is for Respiratory rate and effort. This is a daily thing for Scott and I to keep track of with Cadel. It is one of the first questions we will be asked by Dr's or nurses. 

Cadel when unwell doesn't always 'drop his SATS' or better known as the oxygen saturation levels in his blood which can be taken from a monitor. He usually sits around 95/96. Well people would be 100%. 

So when Cadel is unwell he will compensate by keeping his SAT's up but he will breathe harder and faster.

So we are always counting his resp rate. Cadel's normal resp rate is anywhere between 50 and 60 breaths a minute. When he is sleeping he is known to get down in the forties. To put that all in perspective a 3 year old's resp rate is normally between 20 to 30 breaths a minute. An adult would have 13 to 18 breaths a minute. Scott and I are pretty good at judging by a quick look if his resp rate is normal ( for Cadel) or higher and we need to do a count for a full minute. For medical staff that are unfamiliar with Cadel there is always a little freak out moment until we explain what Cadel's base line is. 

Respiratory effort is when Cadel works harder to breath. This means a number of things. He will burn up more energy as he breathes faster and harder and he will have recessions around his ribs back and neck and sometimes nasal flaring. Again these are things the Dr and nurses will ask about all the time and is a visual sign that Cadel is unwell. 

This is why Cadel is on Hi Flow machines while sleeping as it helps him but giving him a rest and takes the pressure of his lungs so the machines does all the hard work forcing the room air into his lungs to give deep breaths. We only connect oxygen to the Hi Flow machine when he is very unwell. The Hi Flow machine sucks in room air through a filter then heats it to 34 degrees and pushes it through at 20 litres per minute. 

Thank goodness for hospital organising this machine at home it has saved us many trips to the hospital and the physiotherapists sometimes use it to help with their sessions. 

S

S is for Salt! Anyone who has ever kissed a person with CF will notice that they taste salt. Before Cadel's diagnosis I remember the consultant asking if when I kiss Cadel does he taste any different to the other kids and I said no and he then asked again, does Cadel taste salty when you kiss him. I again said no. It wasn't until I went home and thought about it I realised he did taste salty and in those few days of waiting for the diagnosis and not really knowing much about CF I remember sneaking in little licks of my newborn and licking my lips after kissing him to check for the salt! 

Although CF wasn't officially diagnosed until years later, literature from Germany and Switzerland in the 18th century warned "Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die," recognizing the association between the salt loss in CF and illness. 

Basically people with CF don't have the same ability as those without to transfer salt and water on a cellular level so they lose large amounts of salt thus needing it to be replaced. We do this with Cadel by adding it to his tube feeds and his food. Cadel has two plus teaspoons of salt a day. Sometimes when Cadel is admitted and his salt levels are low they just make up a solution and put it directly into his blood steam via his port. 

I'll never forget the filthy stares from fellow parents at the food court when I used to sit there and pour salt into Cadel's pureed foods. 

We have to make sure Cadel gets enough salt during the day otherwise he may become dehydrated. 

Salt is so important and we try and make sure Cadel sucks in some salty air by the beach to help thin out the thick mucous in his lungs also. 

There are so many great health benefits from salt to CF sufferers and I could go on for years about salt lamps, salt therapy, saline inhalation therapy and much more but I'll leave it there until another time. 

T 

T is for TV crew! For the past few weeks we have been doing a few things with a camera crew from ABC 7.30 QLD Stories.

They have filmed us at clinic at home and done some one in one interviews. They are doing a story on our family and CF and another family that is friends of ours who are also a CF family. The story is about raising awareness for CF and how it affects everyone differently and also something else big! The other family have shown our family a huge about of love, kindness and support and along with 20 plus other trades and Queensland Family Pools have donated our family a pool! 

This is what I have been talking about in code for weeks now and I couldn't wait any longer to tell you all. The pool is finally finished, apart from some final finishing touches around the pool so the camera crew will film the first swim next Friday morning and the story will air in the coming weeks. We will surely let you all know when it's happening. 

I've said it many many times but word can't be strung together to say the huge amount of love, support and gratitude that we feel for all involved to help us create great family memories. 

U

U is for understanding. So I would like to thank you all for taking the time and reading our posts to help understand more about CF. I'm still learning new things about CF and don't think it will ever stop. We have only been on this journey for over two years, somedays it feels a lot longer. 

I'm glad you have all stuck by us through the A - Z. Their aren't many letters left to go and I know sometimes it may be a lot with us posting every day. This is what we live with everyday, there is no day off from CF for Cadel. 

We hope that you have enjoyed us sharing and opening up our hearts and you have learned and understood CF and our journey a little bit more.

V

V is for Vertex Pharmaceuticals. 

This is a company that has produced the drug called Ivacaftor. 

Ivacaftor (trade name Kalydeco) is a drug approved for patients with the G551D mutation of cystic fibrosis. Ivacaftor was developed by Vertex Pharmaceuticals in conjunction with the Cystic Fibrosis Foundation.

Kalydeco helps unlock that gate and restore the function of the mutation allowing a proper flow of salt and fluids on the surface of the lungs. This helps to thin the thick, sticky mucus caused by CF that builds up in the lungs.

Kalydeco is currently being evaluated for other cystic fibrosis mutations including F508del, the most common defect occurring in approximately 70% of the cystic fibrosis population.

Cadel has the double F508del mutation so we are watching this drugs development closely. 

This just proves that research is so important and to never give up hope as there are brilliant scientists out there working hard to give kids like Cadel more time. 

W is for Why?

(Written by Scott for our awareness posts)

Why is something that we ask a lot, as you can imagine.

Why?

Why Cadel?

Why us?

Why CF?

Why isn't there a cure?

Why so harsh?

Why another infection?

Why is he getting admitted again?

Why does Cadel have to stay in hospital?

Why more meds?

Why does mum have to stay with Cadel?

Why do we have to hold him down for needles, buttons etc to be put in?

Why can't I buy Kristy flowers?

Why did they make that mistake?

Why wasn't that picked up earlier?

Why can't we visit great Pa?

Why can't we go to the Ekka?

Why can't we go to the markets?

Why do we have to wash our hands all the time?

Why does Cadel have a Mickey Button?

Why does Cadel have so many visible scares?

Why the f@#k?

CF has changed our lives forever, and we have asked a lot of why's. 

We have also met some great people along the way and sometimes ask ourselves why are we so lucky?

X

X is for yup you guessed it X-ray. Cadel has had so many X-rays I have lost count. He is so cute when we walk into the X-ray rooms now he knows exactly what to do. For a while he would start crying every time because he knew what was happening. While he is so little the best way for them to X-ray his chest is by sitting in a high chair and I stand behind him holding his arms up beside his head. He now just walks up to high chair, points to the lead jacket, then back at me. He knows that I have to wear this to protect myself and then straps himself in. 

When he was ICU it was procedure that every Monday X-rays were done. This was when the machine would come to Cadel. Again he picked up what they wanted him to do quickly. He would shimmy himself over to the side of the bed and wait for them to put the slide behind his back then just sit there ever so still while the technicians did their thing. 

Cadel has had a few different types of X-ray. His had the usual X-ray, CT scans and many fluroscopes. They use the fluroscopes when they have contrast to see if his port or feeding tubes were in the right place. The fluroscope is a series of quick real time X-ray so as they pump the contrast through they can see where it is going. Sometimes this process can take up to an hour and Cadel just lays there so calm while the machines and Drs buzz around and over him. 

Sometimes X-rays tell the real story of what is going on inside Cadel's little body as he can look so well on the outside but the inside tells the truth. Like the last admission. 

Y

Y is for You Tube. There are many CF videos on You Tube but this one was passed on to us from someone at the hospital and it has stuck with me. It's from a Mum of a child with CF and so many feelings of what she shares is just how I felt and still feel. It's a simple video with a strong message. Please watch, learn, and share. 

http://m.youtube.com/watch?v=8ovtUJBeaoA

Z

Z is for ZERO SURVIVAL RATE! 

It's a cold hard fact that we try not to think about but it is a reality with this terrible disease. This post may be a little confronting and upsetting but we need you all to understand. 

CF has an average life expectancy of only late 30's. I am 35 this year and can't fathom the thought of having that statistic hanging over your head everyday. With modern medicine this has increased dramatically from in the 1970's when it was only 12. Lets hope in years to come it will be even more. 

This disease affects everyone so differently so there is no one treatment to fit all, there are no periods of treatment, a time when a sufferer can say I beat CF or is in remission, or can be a survivor! It is a LIFETIME of treatments everyday all day right from birth and hospitalisations from sometimes the common cold viruses. 

These are the cold hard facts that our family and many like ours live with everyday. You are reading these words but we are living them. There has never been a time when it is forgotten. The statistics stay with you and sit in the back of your mind. We have to celebrate and enjoy every second, minute, hour, day, week, month, year and decade. 

Scott and I remain positive about CF and enjoy our moments as a family but as this is the last in our A to Z of CF we have to share the honest and sometimes hard to hear truth. This disease is terrible and it takes children, friends, brothers, sisters, nieces, nephews, Mums, Dads, aunts uncles and grandchildren away from their loving families. Some sufferers describe it like drowning from the inside. 

We need to raise much needed awareness for the most common inherited life threatening chronic disease that affects thousands nationwide. One baby every four days is diagnosed with CF. Imagine that, you have this beautiful newborn baby, you are enjoying your first few months of a new bundle of joy and then you get a life threatening diagnosis for them. We lived through that scenario we can't imagine how it felt we know and so do thousands of others. Many tears have been spilled and still are all the time. 

So what can you do? Spread awareness and help raise much needed funds for research. 

We will be doing another fundraiser sometime this year and once again will call on you all for your support and donations so stay tuned. This time we have decided to donate to research so one day instead of just saying it all the time, CF really will stand for Cure Found. It may not happen in Cadel's lifetime or mine but Lorelei and Xavier's children's generation may be saved. 

K