Rachel’s story

Rachel’s story

“The doctor called me a hypochondriac parent, but I pushed for the tests anyway” Meet Rachel, mother of four and carer to her daughter who has Type 1 Diabetes.  Rachel’s story is a clear example of the importance in trusting your instincts! After dealing with the heartbreak of losing her youngest child ten months earlier, Rachel knew something was seriously wrong with her 3 year old child Hailey.  Even when the doctor referred to her as a “hypochondriac parent”, Rachel pushed for further tests which would reveal her daughter’s diagnosis. Within 24 hours, her daughter was being rushed to hospital by plane on the verge of slipping into a coma. Please tell us a little bit about yourself and how you came to be a carer. I am a Mum with my main carer role with my 2nd eldest who is Type 1 Diabetic. She was diagnosed a month before she turned 4. I act as her advocate when people are surprised she eats cake, her nurse and action plan co-ordinator when she is unwell, I crunch her sugar levels regularly to find patterns that may or may not exist and I am the 1st go to person for her school or friends when she is not with me. She was diagnosed 10 months after we lost a son at birth to a fatal heart condition that was not detected until he was born. Our daughter had just turned 3 and the symptoms of her condition were there within a couple of months. Her diagnosis was not as quick as it probably could have been because our family was distracted by grief and just getting through each...
Insights from a Chronic Health Nurse

Insights from a Chronic Health Nurse

“Carers (whether it be family or not) play a vital role in also caring for my patients, they will always know more than me about my patient…”   Please meet Kelly, she is an award winning passionate nurse who is warm, caring and incredibly funny!  Kelly trained an adult learner to become a qualified nurse.  She has worked with people of all ages and walks of life.  She cares deeply for her patients and their loved ones.  I happened to go to high school with Kelly and we met again the day my step-mum was diagnosed with breast cancer some five years ago. Her words are incredibly pertinent with and has some interesting insights for us all.  Cassie x Please tell us about yourself and how you support or work with carers. I am a nurse currently working within cancer services for a major metropolitan acute adult hospital. I work in an outpatient area, providing support – the term support covers many aspects of care – but briefly this includes; toxicity, medication and treatment management, emotional & psychosocial support for cancer sufferers receiving radiotherapy as part of their cancer treatment regime. As the largest radiation oncology department in Adelaide we treat on average 120 patients per day, we have treated children as young as a few months old right up to the geriatric age group. A patient’s treatment intent can be “radical” with the intent of remission – life preservation, or palliative – life extending or symptom control for end of life care. Can you share the most rewarding and the most challenging parts of your role? The most rewarding...
The most beautiful birthday gift!

The most beautiful birthday gift!

As parents we all feel a deep sense of pride, a heart overflowing with love and an abundance of special memories, don’t we?  We wonder where the years have gone and how in the heck they have gone so fast.  We smile.  For me, each year on the 10th of January, I have all of the above plus a very strong and very deep sense of gratitude. Today is my son’s birthday.  Matthew is 14 years old and every year on his birthday, I feel like it is my celebration, for I was the one gifted someone so special.   At 5 weeks old Matthew was diagnosed with the chronic life threatening disease, Cystic Fibrosis (CF).  CF predominantly affects the respiratory (lungs) and digestive systems, and produces a thick glue-like mucous. The mucous is an ideal environment for bacteria and infection to form, causes an in ability to digest fats and is the major factor in the resulting decline in health. At the time we were told his life expectancy would be 28 years.  28 years old!?!?!?!?! I beg your pardon?  How disgusting, that based on statistics alone, someone I don’t even know gets to put a timeline on my child’s life and to make that the focal point of his existence. This was my beautiful perfect little boy and here I was being asked to face the end of his life when his life was just beginning.  He was perfect!  All I could do was hold him.   For any parent, to have a diagnosis with a timeline put on your child’s life cuts to the absolute core....
The Diagnosis

The Diagnosis

Last year I was asked to participate in a Cystic Fibrosis South Australia (CFSA) fundraising project for the 65 Roses Ball.  I was asked to be interviewed on camera – no problem.  As it turned out, after all of the planning, the interview happened to fall on the 2nd day of what turned out to be a 3-week frustrating admission.  Perfect, because it would be real, I thought. The first question was up and I was asked “What is CF?”, a seemingly simple question for a normally well-spoken “have it all together most of the time” kind of mum.  Five words in and I was a blubbering mess!  I was mortified.  I thought, “what is wrong with me?”  I was really taken back at my uncontrolled emotion.  I have been asked this so many times that my responses are well practised and somewhat detached.  I normally provide factual and in-depth information, explain the emotional stressors but rarely connect with them.  Sometimes when I talk about CF it is almost in a clinical sense.  So now it seems that I am human! It took me back to Matthew’s diagnosis. Rarely do I allow myself to cast back and feel that emotion. It is simply to raw. My heart aches for that young 24-year-old first-time mother.  No one deserves that heartache, the shock, the immense grief and despair that any parent feels when told there is something wrong with their child and worse still when doctors state in a matter of fact manner that there is a life expectancy, a cap on your child’s life. I decided to show Matthew off for the first time...
Kate’s story

Kate’s story

“My advice would be ask loads of questions and stay off Dr Google!” Meet Kate, a ferocious hard working mother who would do anything for her children.  Four years ago she was diagnosed with Breast Cancer but refused to let this bring her down.  During that time her young son Josh was also diagnosed with an AVM (Arterio Venous Malformation) and had to undergo invasive surgery where he was and still is at risk of losing his foot.  This is a family who are true fighters, not only do they stick together but will do anything to help others in the community anyway possible.  This is Kate’s carer story. Cassie x My name is Kate and I am a working mum with two children Joshua 10 and Jenna 7. When Joshua was five he was diagnosed with an Arterio Venous Malformation or AVM in his left foot. Essentially this is an abnormal growth of blood vessels which causes significant pain, swelling, abnormal bone plate growth and grows rapidly without regular treatment. It can be life threatening. The impact and cost Being a carer has impacted on our lives significantly as Joshua’s medical treatment requires us to travel to Melbourne every three to six months dependant on test results. A few times we have had to do trips a couple of weeks apart as test results have not been good. This usually requires us separating as a family as financially we just cannot afford to travel and accommodate ourselves in Melbourne for long periods. This also has significantly impacted on our daughter Jenna who has developed anxiety around our family being...