This International Brain Tumour Awareness Week (26th October to 1st November) Debra shares a heart-breaking insight into how she finds meaning in life now her beautiful daughter is gone...
It was New Year’s Eve 2020, and as I watched the fireworks light up the city skyline from Jenna’s hospital room, I was grateful that she was there with me – but so anxious about what 2021 would bring.
Five nights earlier, on Boxing Day, Jenna experienced a seizure, resulting in an emergency admission to the Paediatric Intensive Care Unit.
My beautiful, vibrant, and spirited 12-year-old girl, who loved Christmas, lay in a hospital bed so vulnerable and fragile. Ten days later, after many scans and a brain biopsy (accompanied by Pepper, her Beanie Boo cat), we were both relieved to be able to go home.
Jenna and I had been a twosome since she was three. I look back on her childhood drawings and doodles and they are mostly of us. Our pictures are selfies (usually taken by me) and filtered funny snaps of us (taken by Jenna). There are also, unsurprisingly to anyone who knew Jenna, lots and lots of drawings and photos of cats. Jenna was an early-starter crazy cat lady!
Alongside a huge collection of cuddly toy cats, collectibles, and anything and everything cat-themed, she had two real-life fur babies; Lucky and Willow. I have no doubt that Jenna would have established her own cat rescue as an adult – in fact, I’m convinced that she had a cat-shaped heart.
On 12th January 2021, I sat in the Consultant Paediatric Oncologist’s office and learnt that Jenna had an inoperable high-grade glioma. This was subsequently molecularly classified as a diffuse hemispheric glioma H3 G34-mutant – a rare and infiltrating tumour that typically presents in adolescents and young adults, with a median survival of 18-22 months.
I understood what that meant for her and, wrangling internally with my every instinct and drive as her mother and protector, I knew and accepted that I would lose her.
I’ve never really found any words that capture my love for Jenna. When she was born, I remember reading a quotation that described the experience of being a parent as having your heart walking around outside your body, forever. In conveying both the love and the fear we feel for our children, I think these words come close.
Fear never really left me from that Boxing Day onwards, but my admiration for Jenna’s fortitude and endurance, and my love for her, put fear in its rightful place. I couldn’t let it shatter me – I needed now, more than ever, to be her mother.
At times, I thought that acceptance of Jenna’s prognosis meant that I was not doing enough for her, that I somehow wasn’t ‘fighting’ for her. It can be a lonely stance to take in the world we find ourselves. But, to me, it meant that Jenna could spend time living – in her usual environments, around the family and friends that she loved, doing everyday normal things (including going to school when she could), rather than feeling burdened by the goal of staying alive.
Jenna knew that she had incurable brain cancer. She knew that the chemotherapy, surgery (partial resection of a new area of tumour in February 2023) and radiotherapy she underwent were only to manage her symptoms and control the tumour.
Not once did Jenna ask me, or any of her family, friends, play therapist or wider clinical team, whether she would die. It really wasn’t on her agenda.
Jenna was busy gaming on her Xbox, watching TikTok videos on her phone, planning cinema and bowling trips with friends, laughing with her cousin, eating cake at Costa and nuggets at McDonalds, duetting with me to Flo Rida’s ‘Low’ in the car, crafting, teaching me how to swim, practising her Spanish with Duolingo, watching Gogglebox and, in essence, just being Jenna.
Jenna loved being at home, surrounded by her cats and the things and people that she loved. At just after 1am on the 29th January 2024, tucked up in her own bed, Jenna took her last breath. She was 15 years old. I held her hand, stroked her hair (she’d managed to keep some of her beautiful curls), and told her how much I loved her. It was just over three years since her diagnosis.
In her last weeks, as her tumour advanced, brain cancer robbed Jenna of her mobility, her speech, her hand function, and her hearing.
She couldn’t do the things she loved, and she struggled to express her effervescent personality. Alongside these cruel and progressive losses, she experienced physical and emotional pain. I couldn’t make it right. It was only in the last month of Jenna’s life that we spoke about her dying and the only reassurance she wanted was that I would be okay. It’s the most difficult promise I’ve ever had to keep, but I’m trying my best – one day at a time.
Jenna loved celebrations – and so it was important to me that her funeral was exactly that, a celebration of her beautiful young life.
Photos of Lucky and Willow featured on the Order of Service and all flowers were made from LEGO by Jenna’s friends and family – a vibrant, creative, and joyful reminder of Jenna herself. People wore hints of leopard-print and purple, and sang and danced to S-Club 7’s 'Reach', a song which had always made her smile and represented her playful, fun nature and unwavering hope. Jenna was so loved.
I can only describe my life as directionless since losing Jenna – without her, I have no clear sense of who I am or what I should be doing. Brain tumours kill more children and adults under the age of 40 than any other cancer and yet, historically, just 1% on the national spend on cancer research is allocated to brain tumours. This is an injustice. It is in speaking about Jenna, sharing her story and raising funds for Brain Tumour Research in her name, that I now find my purpose and meaning.
It is how I continue being Jenna’s mum.
Debra is raising funds for Brain Tumour Research through her JustGiving page. Donate in Jenna's memory and make a difference today.
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Published on Monday 28th October 2024.