When my 17-year-old daughter, Jessica, enters palliative care in 2020, she asks if we will ever forget about her.
He specifically wanted to know if his brother, Thomas – my son – had a child in the future, would he know if he already had one?
We promise he will always be remembered.
And since he died in 2021, we have kept our promise. Saying his name is still a big part of our lives today.
For me, Jessica is perfect. He is my best friend. Her father said she was like a firework: the spinning Catherine wheel, or the loudest rocket.
Because he has autism and ADHD, his social and communication skills aren’t as good as his peers, but that’s what makes him — well — him. He’s funny without knowing it, but he can seem rude and abrupt when he doesn’t know how others think.
Above all, my daughter is very loyal and loving – once she’s your friend, she’s your friend forever. But if you cross them, there’s no going back.
Sports are Jessica’s life and passion. He was energetic and at every club – for a while, playing football on Saturdays and rugby on Sundays. He was delighted to play the latter for Warwickshire County Rugby and was selected at 15 for the RFU center of excellence.
Everything was perfect. Until not.
On April 30, 2020, Jessica – at the age of 17 – slept as usual, but the next day she couldn’t wake up because of a headache. In the evening, he was very ill.
The next day, the other head sat on the bed and he was sick again, but I was afraid to go to the hospital at that time because of the height of Covid-19.
The following week, Jessica was still sick, so I called the GP and got an appointment to see the doctor. They had set up a gazebo in the parking lot, but Jessica was physically unable to get out of the car because she was so sick.
At that time the doctor and nurse came to help and we were advised to go to Warwick hospital, but they will send the Covid-19 test in the post first.
From there, Jessica got worse – with double vision, loss of balance, and the disease became more aggressive. So we went to a different GP, who sent Jessica for a CT scan.
On the 18th of May, a doctor came to my house and said that there was a lump on his brain and that a consultant was waiting for us at the hospital. We try to stay positive about everything.
That Thursday, Jessica was taken into surgery to have a biopsy and a shunt inserted to relieve the pressure of the spinal fluid – this should help ease the pain. As I looked around the neurosurgery room at Coventry University Hospital, my heart sank when I realized that he was the youngest person there.
Then on June 1st, I knew it was serious. Before this – due to the restrictions of Covid-19 – I stayed with Jessica in the hospital, but she was not allowed to see her father or sister since she was admitted.
Except, suddenly, he’s called to the hospital for a family meeting.
The oncology consultant and nurse told me Jessica had brain cancer, glioblastoma – stage 4, a rare, fast-growing, and aggressive brain tumor.
It hurts me to hear Jessica asking over and over: ‘How long will I live?’ He was told every case is different.
We were transferred to Birmingham’s Queen Elizabeth Hospital, where Jessica met the team. A few days later, while Jessica was sleeping, I met with the oncologist who explained her prognosis in more detail.
At that time, I was told that my baby girl would die.
The oncologist went on to say that – from start to finish – the prognosis was 12 months, and he suspected the lump was three months old when it was discovered. I feel like screaming.
Jessica entered palliative care for several weeks. Then over the next few months, he had seven surgeries.
They don’t remove the cancer (because it’s in the middle of the brain and it’s hard to reach) but they have to be fixed or changed because the pressure is increasing and causing pain.
All the while, neurodiversity means that Jessica faces cancer in the usual way – factual and honest. He would say: ‘I will tell you, and I don’t want you to cry’. We’ll hold our breath, waiting for the next sentence.
Jessica will then start talking about her death, her funeral, and our lives after. For example, he’ll say: ‘At my funeral, can you play Mr Blue Sky?’
As a family we can only sit and listen as she casually chats about her worries, as only Jessica can. Our family life as we knew it was shattered, as Jessica orchestrated the most traumatic time of our lives.
I remember going out for coffee and he asked my sister-in-law: ‘When I die, what do you want from me? My Gucci purse?’ My sister-in-law can’t speak.
Another time we met our local vicar. Jessica said: ‘Are you going to bury me?’ He dropped to his knees to talk to her.
He mentions the conversation on the day of her funeral, and he exercise bury him. How could we not follow very precise instructions?
After her death in January 2021 – aged 18 – we created a charity called Jessica’s Promise, to help financially support children and young people through amateur sports.
We want Jessica’s Promise to be her legacy. They always struggle academically and socially with their peers until you tell them something.
Jessica shines on the field and excels in sports. We want all children and young people to have the same opportunities that we can give our daughters.
He changed our lives irreparably. In fact, his brother, Thomas, even changed careers and started medical school this year because of him.
At the end of the day, we just want to keep Jessica’s memory alive, but not as the ‘perfect princess’ because she is far from one.
We want him to be remembered as a troubled and talented young sportsman, and as a teenager who found solace in the world of sports.
Her illness doesn’t make her a fighter, or a warrior – she’s a girl who just wants to live life to the fullest.
Do you have a story you want to share? Email jess.austin@metro.co.uk.
Share your thoughts in the comments below.
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