I had no idea my daughter’s headache marked the beginning of the end

When my 17-year-old daughter, Jessica, went into palliative care in 2020, she asked if we would forget about her.

She specifically wanted to know that if her older brother, Thomas – my son – had children in the future, would they know she had even existed? 

We promised her that she’d always be remembered.

And since she died in 2021, we’ve kept our promise. Saying her name is still a huge part of our lives today.

To me, Jessica was perfect. She was my best friend. Her dad said she was like a firework: a pretty Catherine wheel spinning around, or the loudest rocket.

Because she had autism and ADHD, her social and communication skills were never like those of her peers, but it’s what made her – well – her. She was funny without knowing it, but could also appear rude and abrupt when she didn’t understand how other people were thinking. 

Above all, my daughter was fiercely loyal and loving – if she was your friend, she was your friend forever. But if you crossed her, there was no going back.

Sport was Jessica’s life and passion. She was so energetic and in every club – for a time, playing football on Saturdays and rugby on Sundays. She was thrilled to play the latter for Warwickshire County Rugby and be selected at 15 for the RFU centre of excellence.

Everything was perfect. Until it wasn’t.

On 30 April, 2020, Jessica – then aged 17 – went to bed as usual, but the next day she couldn’t get up because she had such a headache. Later that evening, she was violently sick. 

The next day, another headache kept her in bed and she was ill again, but I was scared to go to the hospital at the time because it was the height of Covid-19. 

The following week, Jessica was still unwell so I phoned the GP and we got an appointment to see the doctor face-to-face. They had set up a gazebo in the car park, but Jessica physically couldn’t make it out of the car because she was so sick.

That’s when a doctor and nurse came to help and we were advised to go to Warwick hospital, but they’d send us a Covid-19 test in the post first.

From there, Jessica got so much worse – with double vision, loss of balance, and sickness becoming more aggressive. So we went to a different GP, who sent Jessica for a CT scan. 

On 18 May, a doctor came to our house to say a lump had been found on her brain and there was a consultant waiting to see us at the hospital. We tried to keep positive about it all though.

That Thursday, Jessica was taken for surgery to have a biopsy and a shunt fitted to release the pressure of the spinal fluid – this was supposed to help relieve her pain. As I looked around the neurosurgery ward at Coventry University Hospital, my heart broke as I realised that she was the youngest person there.

Then on 1 June, I knew it was serious. Prior to this – due to Covid-19 restrictions – I’d stayed with Jessica in the hospital, but she hadn’t been allowed to see her dad or brother since she was admitted.

Except, suddenly, they were called into the hospital for a family meeting. 

The consultant and an oncology nurse told us that Jessica had cancer of the brain, which was glioblastoma – a stage 4, rare, fast-growing, and aggressive brain tumour.

I was heartbroken to hear Jessica bluntly ask: ‘How long will I live?’ She was told each case was different. 

We were transferred to Queen Elizabeth Hospital Birmingham, where Jessica met her team. A couple of days later, while Jessica was asleep, I met with the oncologist who went into more detail about her prognosis.

That’s when I was told that my baby girl was going to die very soon. 

The oncologist went on to say that – from beginning to end – the prognosis was 12 months, and she suspected the lump was three months old when it was found. I felt like screaming. 

Jessica went into palliative care within weeks. Then over the next few months, she had seven surgeries.

They weren’t to remove any of the cancer (because that was in the centre of her brain and hard to get to) but to have shunts fitted or altered because the pressure was growing and causing pain.

All the while, neurodiversity meant Jessica faced cancer in her usual way – factual and truthful. She would say: ‘I’m going to tell you something, and I don’t want you to cry’. We would hold our breath, waiting for the next sentence. 

Jessica would then start to talk about her death, her funeral, and our life after. For example she would say: ‘At my funeral, can you play the Mr Blue Sky song?’

As a family we could only sit and listen while she casually chatted about her worries, as only Jessica could. Our family life as we knew it was devastated, while Jessica was organising the most traumatic time of our lives.

I remember being out for coffee and her asking my sister-in-law: ‘When I die, what do you want from me? My Gucci purse?’ My sister- in-law was speechless.

Another time we met our local vicar. Jessica said: ‘Will you bury me?’ He dropped to his knees to talk to her.

He mentioned their conversation on the day of her funeral, and he did bury her. How could we not follow her very precise instructions? 

After her death in January 2021 – aged 18 – we set up a charity in her name called Jessica’s Promise, to help support children and young people financially through amateur sports.

We want Jessica’s Promise to be her legacy. She always struggled academically and socially with her peers until you gave her a ball of any description. 

Jessica shone on a pitch and excelled in sports. We want all children and young people to have the opportunities that we managed to give our daughter.

She changed our lives irreparably. In fact, her brother, Thomas, even changed his career and is beginning medical school this year because of her.

At the end of the day, we just want to keep Jessica’s memory alive, but not as a ‘perfect princess’ because she was far from one. 

We want her to be remembered as the troublemaking, talented young sportswoman that she was, and as a teen who found solace in the sporting world. 

Her illness did not make her a fighter, nor a warrior – she was a girl who just wanted to live her life to its fullest.

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

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