Danielle's story: One day at a time

They say that our first love will stay in our hearts forever. This couldn’t be more true for 26-year Danielle Paparone. At 19 she was swept off her feet by an affable young man with striking blue eyes. After a blissful year together, he was diagnosed with a brain tumour. However, treatment was unsuccessful, and he died three years after diagnosis. Danielle shares her incredible love story with Cancer Advisor and tells us how she turns her pain into purpose.

“He had very big blue eyes and that’s what drew me in,” Danielle says. Jake first laid his big blue eyes on Danielle in a Gloria Jeans during a university break. “He kept smiling and being really friendly,” she says. “I didn’t think much of it and left.” Danielle, who was 19 at the time, returned a week later and they ended up talking and swapping numbers. “He said I looked friendly and approachable and that’s why he came up to me, and it’s interesting because I thought that about him too.”

Jake was three years older than Danielle and working as an accountant when they met. “I just found him to be very adorable,” she says. “He was my first serious boyfriend and raised the bar very high. I was so lucky to have him. He was a very genuine, down to earth person – very cheeky sense of humour, big smile and quite family orientated. He wanted a family one day.”

It had started as a seemingly uneventful day when Jake was diagnosed. The two of them had gone to the movies with friends, and when they got home Jake had a seizure. “They thought it was a stroke, which was very upsetting because he was 24 years old at the time,” says Danielle. “It was terrifying.”

Eventually Danielle and Jake discovered he had a mass pressing on the left hand side of his brain. “No one was saying what it was, but we filled in the blanks,” she says. “The following night they told us it was a small brain tumour and they needed to get it out asap or he would die within two weeks.”

Jake went into surgery on Christmas Eve. “It was our second Christmas together and we were really looking forward to it but … different plans.”

The surgery managed to remove about 90% of the tumour, but they couldn’t get any more as it was getting too dangerous for him. Danielle says when he was wheeled out after surgery he looked defeated and vulnerable. The mass turned out to be a grade 2 tumour with a prognosis of about four years with treatment and chemo to shrink it down. Two weeks later, Jake was back on his feet. “When he got sick it was still nice years, but it was just so full on. We tried to keep things as normal as we could, but it was hard with appointments and surgeries, chemo and radiation. It was difficult, especially when you’re in your 20’s. But we did the best we could under the circumstances.”

Danielle says before Jake’s diagnosis she had never thought about brain cancer. “Once it happened it didn’t feel real. It felt like – not like a dream – but like it just wasn’t happening.” Her new mantra was to take things one day at a time and not project into the future. “When it happens you just have to go forward, you can’t go around it,” she says. “You can’t look in the future, because that’s when it gets terrifying. You just got to do one day at a time. And that really helped me.” Danielle describes Jake’s attitude as optimistic too. “He just said, ‘Whatever happens, happens. But in the meantime, I will give it everything I have!”

 

The importance of support

Danielle’s friends didn’t really understand what they could do to help. “A lot of people really didn’t know what to do or say to me anymore. So they thought the best thing to do was to take a step back”. However, her immediate family was very supportive! Danielle’s family suggested she see a support group, but it wasn’t right for Danielle. “It was either elderly people or children and we weren’t in either one of the groups, so it felt a bit isolating and very overwhelming to be there, so we didn’t go back to it again.”

Danielle ended up contacting someone from the Brain Tumour Association in Western Australia. They set up Danielle with someone her age, whose partner was diagnosed. “I found that helpful because I could talk to her. I think it definitely have helped if [the people in the support groups]were more my age. Even if they were ten years older or younger, at least somewhat close. But they don’t seem to have anything like that. So you feel very lonely.”

During the three years of cancer treatment, there were times Jake would tell Danielle to leave and walk away, or that she didn’t deserve this. “He wanted me just to leave and often told me to find someone else who could give me the life I deserved. But I kept telling him it was my decision, not his. Cancer definitely took its toll, but it never tore us apart.”

 

Pain into purpose

Danielle describes Jake death as extremely traumatic and cruel. “As I was watching him all I was thinking is I’ve got to do something to stop this from happening again. It was so heart breaking. And I told him this – that I was going to do something. I didn’t know what I was going to do at the time – I just knew the answer was going to come to me when I was ready.”

Two months later when Danielle was making a bracelet, she knew she wanted to set up a foundation to raise funds for Brain Cancer. Her Foundation Pearl Meets Crystal sells jewellery Swarovski crystals and pearls.  “I ended up putting a few designs together. And I started an Instagram page and Etsy store to sell through them there. And I am not sure what I was expecting to happen… but I don’t expect the support and love I got.” Danielle had her first buyer a week later and has since taken off.

Two years later I am doing much better,” says Danielle. She has finished studying and now works full time in Marketing. “It’s an experience that I will never be able to forget. But I have moved on now and found myself in a much happier place. I love that I can still carry on Jake’s honour through my jewellery.”

 

Cancer Advisor has a range of resources for young people facing cancer and those close to them, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.

Leave comment
  • Ben’s story: ‘Cancer has taught me a lot’

    Diagnosis & treatment After having a sore on his neck for a few weeks Ben decided to make an appointment with his local GP in Perth. Although Ben was more preoccupied about the sore, after hearing about Ben’s history of headaches the doctor insisted on getting tests done. A few weeks later, the 23-year-old was told he had a benign brain tumour and needed surgery. However, after testing the biopsy the tumour turned out to be a malignant four centimetre mass. It was classified as stage 2 with characteristics of stage 3 astrocytoma glioma. The mass was on the right […]

  • Cognitive difficulties after brain cancer

    The Conversation outlines the ways that cancer in a child’s brain has the potential to impact their overall future health and cause long-term disturbances to the central nervous system of survivors.intro Known as ‘late effects’, these cognition and communication difficulties can affect personal and social development. Early intervention can lessen the impact of such difficulties on survivors.   Cancer Advisor has a range of resources on brain cancer and late effects, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.  

  • “Death doesn’t have to mean failure” – Sacha’s story

    The Guardian in the UK has published Sacha’s story about her son’s end-of-life experience. David, known as DD, was diagnosed with medulloblastoma – a brain tumour – at aged 11. He died five years later. Sacha has since written a book, Follow the Child to help other parents struggling to come to terms with the death of their child. “I consulted four other sets of parents who were passionate about improving end-of-life care,” she explains. “We have laughed and cried and then needed the reassurance of experienced social workers, palliative nurse and paediatric palliative consultants to check our efforts. I only regret that […]

  • Chemotherapy for medulloblastoma — Brent’s story

    Redkite and jimmyteens.tv have created a video interview with Brent who has just started chemotherapy after having radiotherapy and surgery for medulloblastoma. Brent talks about his home town Cunnamulla, how he was diagnosed with cancer after experiencing headaches, his stem cell transplant and how life is back home being a sheep shearer. Brent is having treatment 12 hours drive from his hometown. He had 32 sessions of radiotherapy, before starting chemotherapy. “My symptoms were that I was getting real massive headaches.” He said he saw the doctor who gave him medication for a chest infection, but he got sick that […]

  • How music therapy helped a family during cancer

    Nick will never forget the day his four-year-old daughter Emily was diagnosed with an aggressive brain tumour. “It was 8.00pm on Monday 16 March, 2009 and the start of our family’s nightmare,” he says. “Our family was falling apart and we quickly realised these dedicated social workers would help us stand tall for our daughter.” Within days of her diagnosis, Emily had two major operations to remove a 5 cm tumour from her brain. While in hospital, Nick and his family received a Red Bag from Redkite, a support pack containing information, toiletries and other practical items to help during the initial […]

Comments

Comments will appear below.

What do you think about this topic?