‘We urgently need kinder treatments for children’ – Noemi and Zofeya’s story

When she was 4 years old, Zofeya was diagnosed with medulloblastoma, a type of brain tumour. Now 7, Zofeya lives with her parents Noemi and Matthew, and brother Malacai, in Bedfordshire.

Here, Noemi shares her daughter’s story – one of several that feature in our Annual Review, which highlights the progress we’ve made this year.

‘She was her usual cheerful self’

I’d always assumed that if someone had cancer you’d notice that something was wrong straight away. Zofeya was only four. She was eating and sleeping fine, and was her usual cheerful self.

But a few months before she was diagnosed, I noticed that she would bump herself a bit more.

Then her balance and coordination became more affected. I remember watching her trying to run and play but she would fall over. She also started losing her self-confidence and she wanted to walk less and held my hand more – it was clear that something was going wrong.

‘I’d compare the moment we heard to a tsunami’

We took her to the GP and we were referred to A&E, where they did a scan.

Shortly after the scan, the doctor took us into another room. I assumed it was for privacy and that he wasn’t able to give assessments in front of other parents. He came right out with it. He said, ‘On the scan, they’ve noticed a brain tumour.’

I’d compare the moment we heard to a tsunami. It became all about survival. Just trying to get through the next 24 hours. And the next, and the next.

Your world just crumbles. It’s hard enough if it’s you, but when it’s your little child, your heart breaks because you’d do anything to be in their place.

We went from one meeting to another, talking with different doctors and consultants. At the time you can’t really comprehend the terms and language they use.

We were told that the kind of brain tumour she had was aggressive, and that the treatment she needed – surgery, chemotherapy and radiotherapy – would be very aggressive too.

‘The day of the operation was the hardest of our lives’

Nine days after her diagnosis, Zofeya had brain surgery to remove the tumour.

The day of the operation was the hardest of our lives. We knew that she might not survive and that she might never be the same.

We had to wait 8 and a half hours to find out if she’d be okay.

When she came out of surgery, she was in horrendous pain. The next day, she couldn’t move or talk or even swallow. We’d been warned this could happen. It’s caused by trauma to the brain from the surgery, similar to a stroke. She would look at us as if to say, ‘How can you let this happen?’

Life is very different now to how it was years ago, and some things won’t ever be ‘back to normal’

– Noemi, Zofeya’s mom

It was heart-breaking.

It was nearly 2 weeks before we saw Zofeya smile. That was a breakthrough for me, seeing the child she was underneath.

A few weeks after surgery she started chemotherapy and daily radiotherapy.

‘The worry won’t ever go away’

We don’t know yet what all the side effects of the treatments might end up being, because some are so long-term. We were told to expect learning disabilities and that she might never have children. Her hearing is affected, which also makes it harder for her to concentrate.

And there’s also a high risk of her having another cancer in the future because of her treatment.

Now, in the playground when the other kids are running wild, Zofeya tries to keep up but her head and feet aren’t quite in sync. She doesn’t react quickly enough. So she bumps into things and falls more.

We’ve been told it’s normal and we try to be calm, but our senses are always on extra alert for the symptoms she had before. The worry won’t ever go away, we just hope and pray we won’t have to go through it again.

‘It’s taken a long time to get to this point’

In the bigger picture, it’s amazing that she’s still with us and doing so well. Zofeya is now 7, and she has officially been in remission since November 2014.

Life is very different now to how it was years ago, and some things won’t ever be ‘back to normal’. She has had to relearn everything.

‘She’s a tough little cookie’

Zofeya is going to school and it’s incredible to see her getting her balance and coordination back, riding her scooter and playing with her brother.

She has started doing one-to-one ballet lessons, and it was amazing to see her point her toes. It’s like physiotherapy in a pink tutu! It’s so touching watching her.

It’s taken a long time to get to this point – she struggled at first but she’s coping. She’s a tough little cookie.

‘We need more cures for brain tumours’

There are still some situations where there’s nothing they can do apart from let the child die, and we have met many families who have had to go through this.

We’re supporting Cancer Research UK because we need more cures for brain tumours. And we urgently need kinder treatments for children so that the side effects have less impact on their lives. It was so good to hear that the charity is prioritising this sort of research in their recent strategy.

The moment your child is diagnosed, you have to sit down and listen to a long list of how it may affect their future. You have two options: either agree to this damage from treatment or refuse the treatment and they don’t survive. What kind of a choice is that?

Having to fight for your child’s life when they’re so little, you realise that life is a gift. We never know what tomorrow might bring.

Every parent wants their child to achieve their dreams.

For now, I just want Zofeya to carry on developing and growing. I feel touched just watching her walking in front me on the way up to school, when once she had to hold my hand.

Zofeya won’t be the person I thought she would be, but she’ll become the person she will be. This is her future, and she is amazing.

Noemi