‘Days before Christmas, I anxiously woke to Jake hitting me in the back. ‘He has 6 to 12 months left to live.’: Woman raises money for brain cancer research after late boyfriend’s passing

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“There are no words to describe what it feels like to be told your loved one has cancer. And to have it happen just days before Christmas.

I met my first serious boyfriend, Jake, at a local café while I was on a break from school. His striking blue eyes and sense of humor drew me in straight away. Jake and I exchanged numbers and started dating. We were together for around a year and a half before tragedy struck.

Courtesy of Danielle Paparone

One night, not long after we had drifted off to sleep, I was anxiously woken up by Jake hitting me in the back. He was having a seizure. An ambulance was called, and he was taken to the hospital. After many doctors, nurses, and scans, the following day I heard the life changing words, ‘It’s a brain tumor.’

At just 24 years old, he was diagnosed with brain cancer. The surgeon explained to us how there was tumor the size of a fist pushing his whole brain to one side and it needed to be removed immediately. On Christmas Eve of 2013, he was then taken into surgery to remove as much of the tumor as they could. Never once was there any indication prior to this that anything serious was wrong. No headaches, blurred vision, or pain. There was nothing.

The surgery went well, and in no time at all Jake was back on his feet. He went back to university again part-time to study a second degree, Business Law. We also picked up our little puppy Elzee, which we initially had to delay because of his diagnosis.

Courtesy of Danielle Paparone

Unless you were told, you could never tell Jake was sick. But the somewhat normalcy was short lived. Not long after, the tumor began to grow back again. Across three years, the same pattern just kept repeating itself. The tumor would shrink right down, pause for a while, and then begin to grow back again. Each time, it was more aggressive than the last.

In its third and final form, it returned as a Glioblastoma Multiforme, which is the most aggressive and dangerous type of brain tumor there is. We had heard many life expectancy prognoses by this point, but we weren’t expecting to hear he had around 6-12 months left.

Courtesy of Danielle Paparone

I remember hoping he would make it to the end of the year so we can spend one last Christmas together. He didn’t. By this point, Jake had undergone two operations as well as numerous chemotherapy treatments, radiation sessions, and more oncology appointments than I could count. He tried absolutely everything the doctors threw at him, but at the end of it all, there was nothing more they could do.

As someone who needs to be prepared, 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. Nothing could have prepared me for what was going to happen.

Courtesy of Danielle Paparone

He tried many times to get me to leave him. Telling me to go find someone who can give me the life I deserve because he never could. Each time, I refused. When a Glioblastoma hits, there is no mercy. Within a matter of weeks, he began to get weaker and weaker. He was forced to defer from university, and simple activities such as talking the dog for a short walk was too hard.

Soon after he started to lose movement. The left side of his body went first. Then, a walking frame was needed, followed by a wheelchair. Not long after, a hospital bed was put into his bedroom. He would often forget who I was or get me confused with someone else.

I had lived and died a thousand times during this whole experience. But the one thing that will always remain in my memory was when he tried to grab my hand and say, ‘Make it end now, please.’ Once the bed arrived, he never left it again. He was almost completely paralyzed from his neck down and he could no longer speak.

From then on, he slipped into a coma for 9 days and never woke up. It was barely past midnight on Saturday, October 22, 2016, when Jake peacefully passed away after battling brain cancer for just under three years. He was just 27 years old. We were together for just under 5.

Courtesy of Danielle Paparone

With brain cancer, it was basically like watching him die twice. First his mind went, along with his personality and character. Followed months later by his physical body. I will never have the words to explain how unbearable it is to see someone you love go through something like this.

No matter how challenging his life got, her rarely complained or let his prognosis stop him from living his life. He never lost his big smile, his sense of humor, or selflessness. Dealing with the grief that followed, while also having vivid flashbacks of his dying experience, is something you can never prepare yourself for.

I certainly was not prepared for the brain fog and forgetfulness. The inability to concentrate on anything. The memories that were burned into my brain with no off switch. Feeling okay one day, then taking five steps back the next. Losing weight because my appetite vanished. The insomnia that continues to steal my sleep still to this day. But I moved forward with the help of my family, close friends, and my dog, Elzee.

Courtesy of Danielle Paparone

I couldn’t influence the outcome of Jake’s prognosis, but I could control what I did after. We were told often how underfunded and unresearched brain cancer was. Brain cancer survival rates are extremely low and have hardly shifted in 30 years. It’s just not good enough.

I chose to transfer my experience into a driving force that raises money for vital brain cancer research and awareness. I felt responsible to play my part in stopping this nightmare of a disease from becoming someone else’s reality. Once I got control of my grief, I decided it was time to raise money with my very own product. I work in Marketing, so I could draw upon my own knowledge and experience.

I set up an Etsy store and and an Instagram page called ‘Pearl Meets Crystal,’ which sells handmade Swarovski jewelry. Making jewelry was always something I had loved to do as a child. I found myself reverting to that hobby again in the midst of grief. I began creating bracelets, uploading them to my store, and using my Instagram to build my following and community. Not even one week after starting, I had my first order.

Courtesy of Danielle Paparone
Courtesy of Danielle Paparone

I was quickly blown away by the interest and support I began to receive. At this current time, I have raised just over $12,000, and my bracelets are now traveling overseas every other week. It is not uncommon for me to get an order from someone who lives 10 minutes away, then followed by someone who lives in the UK!

My story has been featured in multiple local newspapers, media outlets, websites and is soon to be published in an Australian magazine. All profits I make go to the Brain Cancer Foundation and materials. I chose not to make any profit from this personally.

Courtesy of Danielle Paparone

There was one thing I decided months before Jake passed – I would never get into a relationship again. I felt like I had experienced every single aspect of being in a relationship: the good, the great, and the heartbreak. What many had experienced in a lifetime together, I got condensed into 5 years. Plus, there is always this lingering fear, ‘What if it happens again?’ I focused on my work, my business, and healing myself. Those where my priorities.

Courtesy of Danielle Paparone

It was around two and a half years later when the universe decided it was time to cancel my plans. I met someone at an Italian restaurant. He had big brown eyes, a warm smile, and a great sense of humor. I felt drawn to him. Then a whole whirlwind of emotions started – fear, anxiety, guilt, panic, excitement.

I knew it was normal for someone who had lost a partner like I had to experience this once meeting someone new. I also knew if I didn’t get ahold of this, the chance would pass me by. And for the first time since Jake, I didn’t want it to.

Absolutely terrified, I went on a date to the movies. Driving home that night, I felt proud of myself. It wasn’t as scary as I imagined it to be, and I knew it was time. After our third or fourth date, I decided to tell him about my past. Because when is it ever the right time to tell someone about the worst thing that ever happened to you?

Dating again after a tragic loss is a difficult thing only people who have been through it could understand. But I am so grateful I found someone who is so patient, understanding, and supportive.

Richard and I have now been together for almost two years and are engaged. Every day, I still face the fear of it happening again, but it’s beyond a relief not having to share my relationship with brain cancer anymore.

Almost 5 years after Jake’s death, I feel just as motivated as ever to create jewelry to support this cause.”

Courtesy of Danielle Paparone

This story was submitted to Love What Matters by Danielle Paparone. You can follow her journey on Instagram and Facebook. You can support her Etsy shop here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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