My 5-year-old son Jago is a loving, intelligent, empathetic little boy with an enormous heart. He’s extremely active and full of energy: one of life’s doers. Like many little boys, he’s dinosaur-crazy - and loves snakes, scorpions and Komodo-dragons almost as much.
He also adores his twin sister Imogen – even though he doesn’t always let on, and quite enjoys tormenting her! He has a special, precious bond with his beloved Omi (grandmother), too.
When my twins were born in 2015, I couldn’t have been happier. I’d waited a long time to have children and I felt so blessed.
However, on 16 April 2020, everything changed. Jago was diagnosed with an inoperable, non-curative brain tumour, known as DIPG. The tumour is situated in the worst place possible, in the brain stem, the superhighway between the brain and the rest of the body.
It’s a rare disease and affects just 40 children in the UK each year – but because it’s so rare, there’s been little progress in finding ways to treat children with the diagnosis over the past 50 years.
It all started just before Easter. I noticed Jago wasn’t looking at me squarely in the face – but angling his head slightly to the right. He’d also become a bit clumsier. My first instinct was to call an optician. However, due to lockdown – and the opticians not having PPE – we were referred to the emergency eye clinic in our local hospital instead.
Once there, Jago had his eyes checked over and we were told there was no problem with them. Then he was sent for an MRI.
Sitting there in the waiting room, I imagined being told there was a problem with the optic nerve. As my little boy, as lively as ever, did laps of the waiting room, I wondered how we were going to get through it. Even the nurses, who observed Jago playing animatedly with the hospital toys, didn’t imagine anything more serious.
We waited and waited for the results until eventually two doctors came to speak to us. I immediately knew it wasn’t going to be good news. They told me Jago had a lesion in the pons area of his brain and that they were going to transfer us to Great Ormond Street Hospital.
The diagnosis came the next morning and it didn’t feel real. I felt numb. Those few words… No parent should hear them. How can life deal such a cruel disease to such a little child? Of all the things I worried about as a parent, paediatric cancer was the least of them.
I managed to get through the day – and subsequent days – by being in ‘action’ mode, speaking with a steady stream of consultants, nurses and physiotherapists and taking care of Jago and Imogen.
I made the decision early on not to tell Jago and Imogen about the diagnosis. Jago is getting treatment to make him feel better – and so far, they’ve accepted this explanation.
Here is what we know about DIPG:
· It’s the most fatal of children’s brain cancers
· Approximately 2% of children diagnosed with DIPG survive 5 years
· The median survival from time of diagnosis is 8 months
· The only treatment is radiotherapy and the benefit is sadly too transient
There are medical trials: a few in Europe but zero in the UK, and with none expected in the short term. Most trials take place in the US and are performed privately and hugely expensive.
Selecting a trial that could extend your child’s life is a hard decision to make. I’ve spoken with some amazing doctors along this journey so far – those with real heart and soul, who are willing to support Jago in any way possible. I truly believe the lab researchers and treating physicians do an amazing job in searching for a cure.
Having discussed the trials with Jago’s consultants and the remote medical teams, we’ve opted for a clinical trial in Switzerland. The drug, developed by Oncoceutics, has a high potency compared to the next best drug on the market – but the price starts at £450,000, so without help, we can’t do this.
I find it really difficult to ask for help at the best of times. In this case, it’s more acute, knowing such private information will be in the public domain. However, I’m asking for your help, because this isn’t about me: it’s about Jago and giving him the best chance ever.
Any donation, no matter how large or small, will go to help provide Jago with access to the best medical expertise and care out there in order to help extend his life. Any funds not used will be donated to DIPG research.
Thank you so much for your help.
- Denisa Lorkova
- Daniel Mccarroll
- Russell Mchugh
- Susan Wakahiu
- Harpreet Saini