One afternoon, we were told that Dainere had a brain tumour and would be rushed to Sydney immediately for treatment. The very next morning, we were driving to Sydney to arrive after her first surgery…
As a teenager, hearing that my little sister had a brain tumour was terrifying and completely unknown territory. A multitude of questions arose that afternoon from ‘What is a brain tumour?’ through to ‘will my sister die?’. That night before travelling to Sydney was restless, daresay sleepless. I was in complete shock and felt as if the earth beneath my feet had crumbled into nothing. Whilst travelling the next day, Nalani, Dad and I didn’t really know how to act, we were clearly all terrified, in disbelief, but wanted to remain hopeful and strong for Dainere. Once we arrived at the Hospital, the car was definitely a quieter environment as we realised the reality of what was happening so suddenly.
After the first surgery, our family were taken to sit in a room with the surgeon. The room was very plain, nothing memorable inside the room except for a single box of tissues on the middle of the table.
The news we were about to hear, obviously was not going to be good…
At 13 years of age, I was old enough to understand the severity of what Dainere was going through but was not hearing a lot of information in terms I could fully comprehend. All that I seemed to be hearing was medical terms, which went straight over my head – until the day before, I had never even considered the fact that people could get a brain tumour. I felt I had a lot of questions, however, didn’t know how to say them aloud out of fear as well as not wanting to sound stupid. All I could do what sit in shock, listen as intently as I could muster through my completely new and weird mix of emotions in the hope of piecing together what I was hearing.
The surgeon had told us that the surgery went far longer than planned and that they did everything they could. We were then told that not all of the tumour was removed…
In this moment, everything seemed to freeze whilst moving at such an incredible speed at the same time. Physically, I felt as if something incredibly heavy was crushing down upon my chest. Emotionally, I was completely numb. After the initial processing of this new information was done, the question from last night appeared in my head again; ‘is my sister going to die?’. Thankfully, Mum and Dad had many questions which were rushing though my head in that moment as I sat in silence, fearing the worst yet wishing for the best.
After the news of the surgery, we were eventually able to see Dainere in ICU. Lying in the bed with multiple tubes, machines and monitors around…
Recalling everything that happened, I would say this was the moment the salt was really rubbed into the ever growing wound.
A new wave of emotions struck me upon seeing Dainere with tubes seemingly everywhere in her, the news had fully sunk in. Gazing onto my little sister in this way after hearing all I had heard was too difficult to do. I found it incredibly difficult to look at her in this moment; where had my happy, healthy little sister gone? How could my sister be here on a hospital bed like this? She couldn’t have a brain tumour, no way. The realisation of what was going on hit really hard, leaving me with even more worries and questions, yet again unable to verbalise them. I struggled to speak to Dainere as well, all I could muster was an ‘I love you’ to my little sister, helpless and scared.
Dainere awoke and was eventually able to communicate with us. She had tubes still, a multitude of doctors and nurses coming through often and Nalani and I explored the hospital…
Being able to communicate with Dainere for the first time since the heartbreaking news definitely helped alleviate some of the pain about the situation. Despite being in the hospital with all the tubes on her, it was like normal times – just having a laugh and chatting as we typically would. After hearing from many more doctors within the hospital, Nalani and I were told about some places we could check out to help deal with the recent news which included the fairy garden and a gaming room. I do feel as though, despite being teenagers, many doctors wanted to exclude Nalani and I from any news about Dainere as if we were too young – when in reality, despite medical terms being hard to understand, we were beginning to learn about brain tumours and indeed wanted to know what was going on with our little sister. This aside, the fairy garden was an awesome place to temporarily take our minds off of everything, as well as providing us with the opportunity to take photos and videos of the fairy garden for Dainere to see (as she was unable to see it in the current time).
After some time spent in Sydney, Nalani, Dad and I had to return to Canberra – Dad to go back to work, Nalani and I to school…
Heading back to school was a peculiar time indeed. Firstly, Dainere undergoing all she was, was constantly on my mind, making it difficult to focus on school work. Secondly, people at school were different for a short period of time. People in my year level who either rarely or never spoke to me, came up to me that first week or two of returning and were being overly friendly and nice to me. Honestly, despite the fact they were uncertain on how to act and that they were trying to be kind, I didn’t like the extra attention. My friends didn’t ask too many questions, just a couple, then carried on as we typically would at school – which was great, some sense of normality in an abnormal feeling period of my life. After a fortnight or so, everything at school returned to normal – almost as if people had forgotten about everything Dainere was going through, or just that it had become something that just was – I was the guy in the Year level whose sister had a brain tumour. With interactions back to normal, things started to feel more normal, yet my mind continuously wandered astray to Dainere and Mum being in Sydney, and this was something that never went away, the constant reminder of everything happening.
Dainere going through her treatment, either being in Sydney or in Canberra became part of life – and we had to adapt and carry on….
Despite the uncertainty and anxiousness around Dainere’s treatments, life continued to unfold around me – and I had to keep up with it all! It was important to continue the things I enjoyed doing in my life, both for a sense of normality as well as a way in which to take my mind off of everything, including any negative thoughts and feelings. I enjoyed running, playing guitar, listening to music, reading books, and playing video games – so I continued all of these things as per normal, perhaps even did them more often than I typically would. My hobbies and interests remained and grew – around the time I turned 15, I had dived into the world of writing, in particular, poetry. Writing poetry was another great outlet of negative emotions as my other hobbies and interest were, but through writing, I was able to really assess and understand the feelings which had developed inside of me. I noticed that aside from feeling unsure, scared, and worried, I was also feeling very down and off in general. Having to see Dainere battle her brain tumour was heartbreaking and through writing and reading back my poetry, I was able to remain strong for my little sister and not let the negativity I was feeling consume me.
After battling for years, Dainere had a relapse into her spine. The doctors told us all that Dainere had around a year left to live…
In my final two years at School, having heard that my little sister was going to die from her brain tumour felt like I had the weight of the world upon my shoulders.
Everything I did, including my hobbies and interests, started to feel meaningless, anything exciting in my days didn’t feel enjoyable – I just felt numb. By the time Dainere had palliative care, she was unable to communicate as she used to with us all, so we all switched into assisting her with things which she begun to struggle with. The Palliative care team provided assistance for Dainere as she found difficulty in everyday tasks such as toileting, eating and even sitting. Unfortunately, due to Canberra, at the time, not having a dedicated paediatric palliative care nurse nor equipment, they relied upon adult size equipment (which was far too large for Dainere) as well as were forced to be in constant contact with Sydney which led to delays in her care and treatment. Dainere’s condition continually deteriorated from the start of 2013, through to her passing late in June the same year. As she slowly but surely lost the person who she had been due to the ongoing inability to communicate as she once had, Dainere’s brain tumour consumed her whole being.
The night of the 24th of June, our family sat with Dainere as she struggled to breathe and was distressed. Mum called the palliative care team as Dainere was moaning and evidently near the end. Dainere’s breathing had slowed to an unhealthy rate, which is when the doorbell rang – the palliative care nurse on call had arrived. I got up to answer the door and just as I had returned to Dainere’s side, with the palliative care nurse right behind, Dainere took her final breath.
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