'My boyfriend was 27 when I lost him. But the process was like watching him die twice.'

It was a Saturday evening in 2013. Jake and I had just got back from watching an outdoor movie with friends. We had planned to go shopping the next day for dog supplies, as we were soon picking up our new puppy.

We never made it to the shops. The only place we got to visit was the hospital. Because that night, I woke up to Jake having a seizure next to me.

After a very long 24 hours of ambulances, doctors, nurses, and scans, the chilling words were spoken: “It’s a mass on the brain”.

At the time Jake was a healthy 24-year-old. We had been together for just over a year and not once during that time was there any warning that something serious was going on. He was diagnosed with a Grade II Astrocytoma. A tumour that was the size of a fist pushing his whole brain to one side.

On Christmas Eve, he was taken into surgery. Although it was successful, this type of malignant tumour was very aggressive and left him with a life expectancy of four years.

For months, Jake tried his best to readjust and manage his new prognosis. Unless you were told, you could never tell he was sick. He still wore his big smile and continued to put everyone else first. He rarely let cancer stop him from living his life.

He even decided to return to Murdoch University to study a second degree, Business Law. This was done part-time between numerous chemotherapy treatments, radiation sessions, and oncology appointments.

He was the picture of strength, courage, and determination. Every time there was a setback with his health, he took it in his stride.

Sadly, the tumours kept growing back, each time more aggressive than the last. When it re-grew for the final time, it returned as a Grade IV Glioblastoma. The most aggressive and dangerous type of brain cancer that exists.

Jake was then given a life expectancy of 6 to 12 months. I remember hoping he’d make it to the end of the year so we can spend one last Christmas together. He didn’t.

I frantically searched the internet to prepare myself as much as I could for his impending death. I never found the answers I was after. Even if I had, I’m not sure it would have prepared me any better for what was going to happen.

When a Glioblastoma hits, it shows no mercy. Jake just got weaker and weaker. He had to defer from uni and activities as simple as taking our dog for a five-minute walk was too much for him.

Within weeks, he lost his ability to move properly. Gradually needing a walking frame, then a wheelchair and later a bed. This is where he stayed for the remainder of his life, where he became almost immobile from the neck down.

One of the final memories I have was when he grabbed my hand and said “make it end now, please”. This was before he forgot who I was and prior to losing his ability to speak.

Shortly afterward, he slipped into a coma for nine days. As I sat by his bedside watching him tragically slip away, I knew I had to help. I promised him I would.

Very early on Saturday, October 22, 2016, Jake peacefully passed away after battling brain cancer for just under three years.

 

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I remember this day like it was yesterday. It wasn’t long after Jake had his first brain surgery and we were heading out for lunch. He was feeling very self-conscious about his half freshly shaved head. So, I gave him the hat I am wearing in the picture. After we arrived, he gave me the hat back and said “it’s okay, this is my new life now. I have to get used to it.” Throughout his whole illness, he was rarely seen without that massive smile on his face! ????

A post shared by Danielle Paparone (@pearlmeetscrystal) on Mar 29, 2019 at 4:15am PDT

With this type of cancer, it’s like watching a person die twice. I helplessly watched Jake’s mind and personality leave first. It was later followed by his physical body. To say it was the most utterly heartbreaking and brutal experience I have ever seen would be an understatement.

I couldn't influence the outcome of Jake’s prognosis, but I could control what I did after. I chose to transfer my experience into a driving force that raises money for vital brain cancer research and awareness. This was how I was going to help.

When I was grieving, jewellery making helped keep my mind distracted. One day, I created this bracelet that I loved. Staring at it attentively, I then realised I had my concept of what I was going to do.

I began an Etsy store, an Instagram page and started an online shop - Pearl Meets Crystal, which features handmade Swarovski Pearl and Crystal bracelets. The profits from each bracelet went towards supporting the Cure Brain Cancer Foundation.

I had no idea what to expect when I started, but I sure wasn’t prepared for the interest and support I received. I have raised just under $7000; they frequently travel overseas and are stocked in a Perth store.

Brain cancer is so under-funded and under-recognised with the survival rates barely shifting over the past 30 years.

With that in mind and witnessing brain cancer firsthand, I feel responsible to play my part in stopping this nightmare of a disease from becoming someone else reality. Almost three years later, I feel just as motivated to create jewellery to support this cause.

If you would like to support Danielle, you can find her on Etsy, Instagram or Facebook.