Dialog Box

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11
Dec
2017

Jake's brain cancer story

By Danielle Paparone

 

It was late one Saturday evening in 2013, where Jake and I were discussing our plans for the following day. It involved shopping for dog supplies for our soon to be adopted puppy that we were picking up in a few weeks. After we drifted off to sleep, it wouldn’t have been more than an hour later when I was woken up by Jake softly hitting me in the back. He was having a seizure. 

What happened next, I could only describe as a massive blur of events. It involved an ambulance, two hospitals, many doctors & nurses, and then the devastating words uttered, “It’s a brain tumour.” 

Jake was a young and healthy 24-year-old. We had been together for just over a year and never once did he show signs that anything serious was wrong. I remember blaming myself for missing the clues that might have been there.  He was diagnosed with a grade II astrocytoma. The tumour was the size of a fist and was pushing his whole brain to one side. On Christmas Eve, he was then taken into surgery to remove as much of the tumour as they could. I genuinely struggled to comprehend that Jake had cancer.


Jake following his first of two invasive brain cancer operations  

The surgery was successful, and the following weeks were all about getting Jake back on his feet and trying to return to life as best as possible. To help with his recovery, we decided to adopt the latest addition to our family, Elzee the Golden Bichon, which we had initially delayed.

Unless you were told, you could never tell Jake was sick. He still wore his big smile and continued to fuss over everybody else. He rarely let his deadly prognosis stop him living his life. He returned to Murdoch University to study law, took up his much-loved hobby of dancing again, and continued to plan amazing date nights for us.

Every time there was a setback with his health, he took it in his stride. He was the picture of strength, courage and determination. So much so, I remember thinking it might be the difference. Even though statistics haven’t changed in 30 years for brain cancer sufferers, if anybody was going to challenge the odds, it would be Jake.  


"Jake was the picture of strength, courage and determination"

But sadly, after two brain surgeries, numerous chemotherapy treatments, radiation sessions and oncology appointments, it just wouldn’t stop growing back, with the final form returning as a grade IV glioblastoma, the most aggressive and dangerous type of brain cancer.

This left Jake with a life expectancy of six to 12 months. He tried everything the doctors threw at him, but at the end of it all, there was nothing more they could do. I searched the internet high and low to prepare myself as much as I could for Jake’s pending death. However, I could never find the answers I was after. Even if I had, I’m not sure it would have prepared me any better for the grim prognosis laid out before him. 

When Glioblastoma hits, it shows no mercy. Jake just got weaker and weaker. He was forced to defer from University, stop dancing, and activities as simple as taking the dog for a short walk were becoming too much for him. It all had to end, despite his determination to keep fighting this beast.  

Soon after, Jake lost his ability to move the left-hand side of his body. Over a matter of weeks, he needed a walking frame, then a wheelchair, and later a bed. This is where he stayed for the remainder of his life, where he became immobile from the neck down. Seeing a hospital bed in the bedroom of a 27-year-old – it just never made sense. 

Most of the time, it was beyond a struggle to even be in the same room as him, watching his painful deterioration. There were times he forgot who I was, or his neck would slump into the pillow and he couldn’t physically move it back. He’d stare blankly at the ceiling for hours, and I’d wonder if he was even there anymore. 

Not long after, Jake slipped into a coma and remained this way for nine days. Even in this state, he was fighting this nightmare of a disease the best he could. All he wanted to do was live, but brain cancer was forcing him out of this world. Early on a Saturday morning in 2016, Jake finally let go. He looked so peaceful, but it was so hard to believe he was gone. I just wanted to shake him until he woke up.

With brain cancer, it’s like watching a person die twice. First, Jake’s mind went, along with his personality and character. It was followed weeks later by his physical body. To say it was utterly heartbreaking would be an understatement. 

During my grieving, I turned to my much-loved passion of jewellery making. After much experimentation with many different beads, crystals and pearls, I eventually made a bracelet that I loved. Staring at it attentively, it suddenly crossed my mind what I had to do next.


One of Danielle's handmade bracelets 

I set up an Etsy store, an Instagram page and started an online shop - Pearl Meets Crystal, which features handmade Swarovski Pearl and crystal bracelets. With profits from each bracelet going directly to help fund vital brain cancer research. I have been amazed with the support and interest that I have received; they have found their way to the US a few times and have even been stocked in a Perth store!  

After watching something so traumatic, all you want to do is help. I feel a sense of obligation to play my part in stopping this heartbreaking disease as best I can. Starting my very own jewellery collection has helped me stay close to Jake and I love that I can continue to honour his memory in this creative way. 

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