For years it was just my Disney-mad daughter and me against the world. Then came devastating news. By Sarah Levett, 45
Dear Jody,
At first you gasped, then you looked nervous. Finally, that kilowatt smile of yours appeared and you laughed.
It was Christmas Eve and you’d just opened our front door to find a unicorn standing there.
It definitely wasn’t something you saw every day! But if anyone deserved a bit of festive magic it was you, Jody.
A few months earlier you’d started bumping into things – a wheelie bin on the pavement one day, a lamp post the next.
‘Look where you’re going, love!’ I’d chuckled.
It was only when it kept happening that I’d realised you couldn’t walk in a straight line any more.
You’d had the odd headache as well. And when your dad – my ex – had taken you on holiday earlier in the summer you’d been sick a few times too.
I’d already booked a doctor’s appointment for you when you started struggling to fasten the buttons on your school shirt. Your frustration lead to screaming fits, which wasn’t like you.
Part of me wondered if it might be something to do with your autism, which made you act a year or two younger than you were.
But scans in hospital discovered something else, something terrifying.
There was a mass on your brain. A biopsy revealed it was a brain tumour on your frontal lobe and it was stage four. It had caused both the screaming fits and the trouble walking.
'I just want it gone'
As the doctor spoke about how big it was,
I couldn’t take it in.
I thought, I just want
it gone.
You were only 12 and I tried to hide how scared I was from you. But you were more bothered that you couldn’t go to school, which you’d always loved.
Surgeons at St George’s Hospital in Tooting, South London, managed to remove 80% of the tumour, and even brain surgery didn’t dull your trademark smile for long.
‘Can we do some baking, Mum?’ you asked just a day after we got home from the operation.
You started emergency chemo and radiotherapy at the Royal Marsden and, as
a treat, friends and family
nominated you for a Christmas wish through our local radio station.
That was how we’d ended up with you stroking an actual unicorn in front of our house. Well, it was a small, white pony with a glittery horn, but the magic was there.
You loved it,
saying, ‘Wow!’
In the weeks that followed, your treatment left you tired, sick and unable to eat. But you never let anything get you down
for long.
‘I’m all right, Mum,’ you would say.
Your autism meant you thrived on routine, but I’d often get last-minute calls saying you had to go into hospital.
You were allergic to the platelet transfusions, so you’d be pretty grumpy about those, but the ward’s exit button was magic. You’d hit
it and that smile would immediately switch back on!
After 10 months of treatment, it seemed we’d turned a corner. Three months on, a scan was clear. A second, another three months on, was too. It felt like our nightmare was over.
Then, one day, a third follow-up scan suggested a relapse.
I was given a lower dose of chemo to administer at home.
‘At this stage we’re only extending Jody’s life,’ your consultant warned. ‘This isn’t going to cure her.’
Despite his words, it was impossible not to hope for a miracle, because how do you accept that your 14-year-old isn’t going to live?
You just wanted to be a normal teenager, seeing your friends. And you had so many plans. You’d always loved spending time with the younger children in our cul-de-sac in Godalming, Surrey, playing board games and doing crafts. You hoped to work in a nursery when you left school, like me.
You’d also been mad about Mickey and Minnie Mouse and the Make-A-Wish charity had decorated your bedroom with Mickey Mouse wallpaper and pictures, which you loved.
As time went on, you needed more surgery and a brain bleed was discovered.
It started to feel like we were living on borrowed time, but you were desperate to finish school and go to your leavers’ prom.
And you made it, Jody.
'You look beautiful...really grown up'
One of the neighbours took photos of you in your gorgeous blue dress.
‘You look beautiful,’ I told you, blinking back the tears that were threatening to
spill down my face. ‘Really grown up.’
That summer, your grandad, Uncle Paul and I took you to Disneyland with your cousins, where you got to meet your beloved Mickey.
You were buzzing and back home you kept talking about how excited you were to start college in the September.
You managed the first four days of term before I noticed a change. It was another bleed on the brain.
Back in hospital for a week, you had steroids which made you violent, but again I knew that wasn’t you.
At home you went downhill drastically, quickly needing to go into the hospice.
I was in your room there all the time. Other than dashing for food, I didn’t want to leave you. And you didn’t want me to go either.
By now, you were unable to move or speak, but you still managed a few dips in the hospice swimming pool before, one evening, your breathing changed and I knew you were slipping away from me, Jody.
You were 16.
Afterwards I felt numb as they moved you to another room to keep you cold. I stayed overnight in a connecting room.
I arranged the funeral in a blur, choosing purple flowers – your favourite colour – and a Disney theme.
Some people dressed in Disney jumpers. I carried the Mickey Mouse bag you’d got at Disneyland.
I’d written something about you to read out.
I wanted to tell the world about your love for life and how bubbly and kind you were, and how you’d do anything for anyone – unless you didn’t like them, in which case they’d know about it!
But I knew
I wouldn’t get through it so, in the end, my lovely friend Jane read it for me.
It was after the funeral that your loss properly hit. The house felt so empty, Jody.
At first it was hard to go back to working in childcare, looking after other people’s kids with my own gone. But my new colleagues have been amazing and have become good friends.
And, like you, working with children was something I was always good at, and all I ever wanted to do.
The hardest question now is when people ask, ‘Do you have kids?’
Explaining that you’re not here any more never gets easier.
I’ve since learnt that brain tumours kill more people under 40 than any other type of cancer, and that they kill more UK children than any other disease. Yet treatments have barely changed in years.
I want more funding for research from the Government – and more support for grieving parents.
Family, friends and neighbours tried their best – but the truth is, if I hadn’t had my friend JoJo dragging me to the doctors after I
lost you, I might not be here now. That shouldn’t be down to friends.
That’s why I’m sharing your story. To help other families.
Something has to change, Jody, because you should still be here with me, bouncing around the living room together to Dolly Parton’s 9 to 5, that kilowatt smile still lighting up your beautiful face.
All my love,
Mum
● Sarah has started a petition for increased funding, improved treatments – and more support for grieving parents who have lost a child to a brain tumour. To sign it, visit change.org and search for ‘Sarah Levett’.