Extending the love

Written by Kerrie Alexander

About 330 very special humans from the Fraser and Sunshine Coast came together in 2021 to raise a monumental $510,000 for the annual Dunga Derby.

The teams smashed the previous six years’ worth of record fundraising efforts out of the park – an effort that could only describe as extraordinary.

A total of just over $1.8 million has now been raised for the Dunga Derby’s charity, Rally for a Cause, which has helped 152 local families and individuals affected by life-limiting medical conditions or who have had their lives turned upside down by sudden death or disability.

With such an outstanding amount raised, the RFAC committee decided to extend the success of the charity to the Sunshine Coast in 2020, with a further 5 families now being assisted in their time of need.

Kristina Barrenger is one of those recipients. Despite now being terminal from a brain tumour, Kristina continues to try and live life to the fullest with appreciation for every extra precious day given.

Rally for a Cause Sunshine Coast has given this battler some much-needed help in way of financial support for her treatment and everyday bills.

Here’s Kristina’s incredible story:

Growing up in Canberra meant life wasn’t very exciting. There wasn’t much to do on the weekends and the weather was always ridiculously hot in summer and freezing cold in winter. There was no in-between! We had always wanted to live somewhere near the beach with more stable weather. So over about a 10-year period, my family always spoke of moving to the Sunshine Coast, QLD. There was always something holding us back or making it near impossible to do this until finally January 2021 my aunty bought a second house on the Sunshine Coast and offered it to us as a rental.

We jumped at the opportunity and move in date was May 29, 2021.

I left my amazing job and colleagues that I absolutely loved, and we were on the road. I was beyond excited to further my career as I had just completed a Diploma of Early Education and Care and had a job lined up.

Within days of being at our new house I started to experience some strange feelings. I was dizzy and feeling unbalanced and was having some double vision in my right eye.

I also was having trouble breathing but thought this was because we had just moved from a house, we were in for 30 plus years and the dust had triggered my asthma.

My stepsister and I decided to climb Mount Coolum and the higher we got, the worse I got. I was having trouble breathing and had to keep stopping for breaks, I was tripping over more often, and my eyesight was not quite right. I put this all down to having mild asthma and being my usual clumsy self.

One morning, I had got up out of bed and fainted. My stepdad took me to a GP where I had my inner ears checked and we basically put it down to having something slightly off balance in my ears, so he gave me some physio exercises to do at home and recommended I get my eyes checked with an optometrist and said I have perfect vision.

The next day was Thursday, June 10 and my family and I were out on a walk to Buderim waterfalls. I fell, I stumbled, and my vision was at its worst. Suddenly, my left leg started to go numb, and it was this point my parents decided it was time for the hospital. Little did I know within the next two hours I would be diagnosed with a brain tumour.

We presented to Nambour emergency room where they took me straight in and ordered a CT scan, followed by a second CT scan with contrast. The results came back showing a tumour on my brain stem.

I went into complete shock at this point and don’t remember much of what the doctor said, except that we would need to be transferred to the Royal Brisbane and Woman’s Hospital for an MRI first thing in the morning to find out more.

It was the results from this MRI that changed my life forever.

A 1.30am, one of the neurosurgeons came to my bedside and told me my diagnosis. It’s called Diffuse Intrinsic Pontine Glioma. It’s highly aggressive and difficult to treat. It occurs in an area of the brainstem called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, heart rate, swallowing, weakness, problems with walking and co-ordination, eyesight problems and speech.

It is fatal and the average survival time is nine-12 months post diagnosis. Radiation and chemotherapy are the only known treatments, which can only slow the growth, there is no cure.
Symptoms usually reoccur around three months post radiation and then you are offered Palliative Care.

I asked her, “Am I going to die from this?” and she said, “Yes. It’s terminal. I’m sorry.” And off she went to perform another brain surgery.

Mum and I sat there in silence for the remainder of the night, in complete shock. The next morning, I had many different doctors visit and explain more about it to me and explained it’s too dangerous to biopsy as there is too many healthy cells mixed up in the tumour, that the risk of paralysis or death is extremely high if I choose to risk the biopsy. I declined, and they organised my radiation and chemotherapy start date.

I had six weeks of radiation daily Monday to Friday, during this time mum and I had to stay at the hospital accommodation nearby as the Brisbane Hospital is 1.5 hours from home. We stayed here for six weeks and went home on the weekends. I also had started daily chemotherapy.

During this time, my thumb began to appear a purplish colour, it was painful and swollen so we presented to emergency. They had concluded it was a blood clot but an extremely rare case of it being in an artery, rather than in a vein. It was a mystery how it happened, and doctors were mind boggled. There was talk of amputation if the treatment of blood thinners didn’t work. So, I started my 12-week journey of self-administering blood thinning injections twice daily. This worked a miracle, and my thumb is all back to normal now, no amputation necessary.

I finished my six weeks of radiation and was able to go home finally! I desperately wanted to start getting my life ‘back to normal’ and decided to start nature walks again. Within five minutes of the walk, I fell and fractured my leg! Three days later I fell and sprained my other ankle. It was here when I realised there is no ‘back to normal’ and life is going to be very different. I simply don’t have the strength to do the things I used to love doing.

Before we knew it, it was time for an updated MRI. The nerves were sinking in with thoughts flooding my mind. What if it hasn’t shrunk? What if it has progressed?

The three days wait for the results felt like forever! Finally, the news came in that the tumour has shrunk from 40x39x38 mm to 36x35x34 mm and was stable. Best news ever! I no longer experience symptoms, except the double vision which I now have glasses to help.

It was also around this time I was having many scans of my lungs and heart still investigating what caused the blood clot. Eventually they discovered a hole in my heart, and they concluded this is what caused the blood clot. They also decided it is necessary to close the hole so that it doesn’t cause more serious blood clots or a stroke. So that brings me to today – waiting for a date for surgery when they will close the hole in my heart.

There are some major risks involved in this surgery, but also equal risks if I don’t have it. It’s such a strange feeling knowing death is a risk for me whether I do something or nothing. Waking up every day not knowing what could happen that day is daunting.

I wake up every day and face the unknown. I have always been grateful for each day but now I treat waking up every morning as a gift. Knowing I could die any day has made me grateful for every single day, good and bad.

Every day I am aware I am going to die well before I should, but I push these thoughts away because I don’t want to live what life I have left being overcome by the negatives because I still have a lot of positives to live for.

It has been one wild journey so far, with a lot of bumps in the road. The pandemic has made hospital stays, tests, and procedures very isolating and an incredible difficult experience without my loved ones by my side. My sister, her husband and their two children are living in Geelong, Victoria and are doing everything they can to relocate here as soon as possible. My sister Katherine and my niece Riley are two of the most important people in my life and the hardest thing about all this is not having them here with me.

If it wasn’t for Rally for a Cause being able to provide some financial relief, then this journey would be very financially stressful for us, on top of everything. I am no longer able to work or drive myself around. We are incredibly grateful for the support they have been able to provide us and been able to ease that stress these last few months. Thank you so much Rally for a Cause.