Beyond Strong. The Thing Is, Life Goes On.

Beyond Strong. The Thing Is, Life Goes On.

Meet Jazz from “Just Wingin’ It”.  A woman I am proud to have met.  Hers is a story of survival.  A story of why you should trust yourself and stand up for what you know, in your heart of hearts, is right. Even when all the experts say no! Jazz is the ultimate warrior, a mum and a friend you’d want on your side.  But the pain and trauma that this lady lives with each day is what makes her special.  Make no mistake, no mama would want to live her pain.  Yet, she gets up and moves forward, spreading the love. She teaches us how to stay true to ourselves, that it’s okay to not be okay and sometimes a big belly laugh is just what the doctor ordered. I remember the day, ten years ago. Splashed across the news was the reports of the most horrific accident you could be faced with as a parent.  Jazz’s children crushed out the front of their home as they came home from school, by the gate and brick pillar that was not reinforced properly. I remember the feeling of sickness that riddled my body. The tears that welled in my eyes. The hurt in my heart for that Mama and the horror story she was now living.  None of us knew the half of it as Jazz explains below, nor did I realise that ten years down the track that our paths would cross and that we would have the opportunity to strike up a friendship with many experiences and passions in common. Jazz is a woman to be admired. ...
Healing From Trauma & What That Means For You!

Healing From Trauma & What That Means For You!

We hear about trauma all the time, but do we really understand what it is, how it is affecting us today and how it is shaping our future? If you are reading this, it’s likely that you are wondering the same.  How do we know if we have been affected by trauma? A few weeks ago, I did an introductory interview for my Facebook Community, to my friend Carol from Moveon Counselling and we discussed just that and I wanted to share it with you too! You might be surprised to learn that ‘trauma’ doesn’t always have to be caused by a catastrophic event to be classed as trauma. Read on to hear what Carol has to say and watch our chat to find out more. I hope you enjoy, Cassie. x A message from Carol of Moveon Counselling Being a parent or carer is hard work!! Especially if the person you are caring for needs a lot of support and displays behaviours that need a lot of patience and understanding. It can be pretty overwhelming and never ending! When you’ve had a life that’s thrown you a lot of challenges, then having to cope with the day-to-day problems that come with caregiving and living with disability just seems unfair. Surely life was never meant to be this hard?? When we are born and throughout our childhood, we are discovering, learning and working out what the world is like. Is it safe? Is there a place for me? Am I lovable? Beliefs Beliefs are developed at this time and sometimes they’re negative. They can stay with us for the rest of our...
As A Mum, This Is Something I Will Be Forever Proud Of

As A Mum, This Is Something I Will Be Forever Proud Of

Image by Mantrabond Update #3: Day 12, 8 July 2018 Ohhh, that feeling when you wake up every morning to an alarm reminding you it’s time for ORKAMBI! Seriously! I have one cool upbeat tune that plays everytime ‘O’ is due. It reminds me every morning of the path we’ve taken to now and of the amazing little PINK PILLS that are giving us hope… that and the undeniable fact that my boy has a fighting chance! GRATITUDE If nothing else of value has been achieved in my life, I know THIS is something I will forever be proud of. I get emotional every time I think about it. It has been some time since I did an update on Matthew’s progress, so here it is!!! You know the old saying, “no news is good news”… well, that is exactly how it is. Matthew is doing incredibly well. Every morning and night he takes those pills. Within the hour we know they have activated because he starts coughing. We do the physio (and he lets me help – YIPPEEE), sometimes there has been very little that has moved but most times like today, Matthew shifts heaps. Mostly it is dark and I do wonder if he did physio all day if it would keep shifting?! Matt is reporting that he is starting to feel better but it is very difficult for him to articulate what that means. I see a kid who is getting up earlier and sleeping less. A kid who is facing some of his fears and making more of an effort to push through those difficult...
Orkambi – Better progress than we could expect!

Orkambi – Better progress than we could expect!

Update #1: Day 3, 28 June 2018 Oh, Ohh, Ohhhh #ORKAMBI!!!!! Today is a good day. Matthew’s tolerance for Orkambi has been very positive so far. He started his full dose yesterday after his first day on a half dose was ‘unremarkable’ in terms of adverse side effects. It has been a busy time in here with many, many sets of observations, four lung function tests per day (only one today) and three lots of intensive physiotherapy to support the treatment and movement of sputum from the lungs. On admission, Matthew’s lung function was 56.2% (1.8 litres). It fluctuated slightly on day one and two between 55.3% (1.77 litres) and up to 58.76% (1.88 litres) for his last one yesterday at 1.30 pm. Today’s lung function has climbed to 60.78% or 1.94 litres. It is clear to me that when Matthew is doing his lung function tests that it is getting easier to get a bigger breath in. Something I have seen diminish over the last 6 or so months. Matthew is clearing gunk well and some patterns are forming that will help with establishing treatment plans at home. The doctors are delighted as are the physiotherapists. There are expectations of severe initial side effects including problems with his breathing and airways being constricted, nausea, cold-like symptoms and headache, yet these are present so far. Doctors believe, based on the research of others who are on Orkambi, that we could expect an initial and significant drop in his lung function too. This has not happened obviously with an approximate 5% improvement in just a few days, this gives us so...
The Big ‘O’ Brings New Hope

The Big ‘O’ Brings New Hope

Background The 26th of June 2018 marks a monumental day for our family.  It marks the first day of access to a drug that is otherwise unattainable for our son Matthew.  A drug that potentially can stop the progression of an insidious disease he lives with called Cystic Fibrosis. At the time of writing this article, the below message was written to our loved ones to announce our news. We have been waiting three years from the time Orkambi was approved for safe use here in Australia.  This is a drug that has a price tag of around $260,000 per person per year.  The Australian Government and Vertex (the manufacturers of Orkambi) have been at a stalemate, unable to reach agreement on a ‘fair price’ for people living with Cystic Fibrosis to access. In the same week, Matthew started access, a new application was presented to the PBAC – Pharmaceutical Benefits Advisory Committee to have Orkambi included for access on our Pharmaceutical Benefits Scheme. To date, we do not know the answer but know that in the United Kingdom, access was again denied and Vertex is now likely to pull out of the country leaving thousands without access.  Hundreds have died waiting, hundreds more will die wondering ‘what could have been’. This is our story. The Big 'O' Brings New Hope! Day 1 – 26 June 2018 Matthew Started His Orkambi Journey today. He is the first paediatric patient in South Australia to be granted access! Today marked a new day in the history of our family. Matthew started his journey on Orkambi. Yes, that elusive drug that promises so...