On 16 April, just weeks after the UK went into lockdown in the midst of a global pandemic, I was told my five-year-old son, Jago, had an inoperable, non-curative brain tumour.
It is almost impossible to explain what it felt like to hear those words, but I remember I just went numb.
Like most children his age, Jago was usually really active, running everywhere and climbing trees with his twin sister, Imogen. However, just before Easter this year, I noticed he was a bit clumsy.
At first I put it down to the fact that he did everything at 100 miles per hour. But then Jago started squinting and angling his head rather than looking at me face-on. Assuming there was something wrong with his vision, I tried to book an appointment to get his eyes tested – but of the few opticians still open during lockdown, none had the necessary PPE.
Thankfully, one took the time to listen to me on the phone and arranged an appointment at the emergency eye clinic in our local hospital.
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They quickly ascertained that there was nothing wrong with Jago’s eyes, but a subsequent MRI scan picked up a lesion on the pons area of his brain, revealing the presence of a tumour known as DIPG.
It’s the most fatal of children’s brain cancers, with only approximately two per cent of children surviving five years. The average life expectancy from the time of diagnosis is eight months.
I remember feeling grateful, in a strange way. You hear so many stories of children who have symptoms of illness for months but by the time they’re diagnosed, it’s too late. People rarely think ‘brain tumour’ when it comes to little ones, so I am indebted to the optician who suspected something.
Very quickly, my days were filled with appointments with various medical staff. Maybe it’s all in my head, but I felt like they were trying to keep me busy so I couldn’t think too much about the reality of Jago’s diagnosis.
Lockdown meant that all of the paediatric wards at our local hospital were closed, so we were rapidly transferred to Great Ormond Street Hospital (GOSH) and at 4am one morning, Jago was admitted to the neurosurgery ward with me and Imogen by his side.
With strict restrictions on travelling and hospital visitors it was made very clear that our being there as a family was an exception, but there was no other option: I’m a single mum and there was no one else available to look after my daughter.
We were allowed to stay with Jago for the next two nights, then Imogen and I were given a room in hospital accommodation that was mercifully still open.
We had never been apart as a family before. I remember one night trying to get Jago to take his medication at 10pm so that I could take Imogen back, finally getting her into bed at midnight. Those fews days were horrific.
Jago started two and a half weeks of radiotherapy on 27 April, initially in hospital then as an outpatient after a week. Things were complicated by the fact that the ward at GOSH was being run by a team from University College Hospital (UCH) as the beds there had all been given over to Covid-19 patients.
The staff were brilliant though and agreed that Imogen could stay at GOSH too, as they felt it was so important for us to be together. They also arranged hospital transport, and while this wasn’t ideal, it was far better than taking my sick little boy on the tube, which was unthinkable.
Initially, my mum had to stay away as she is high risk and lives in Austria, so coronavirus made it impossible for her to travel. It was so hard not having her around for emotional support but thankfully she was finally able to come over when Jago finished radiotherapy, two days before the twins’ fifth birthday. They were so thrilled to see her, yelling her name and trying to vie for attention.
Mum has been staying with us ever since which has been a godsend, but I know she will have to go home eventually and I’ll be back to dealing with this alone.
We are still waiting to see what, if any, difference the radiotherapy has made. The treatment makes the tumour and surrounding tissue swell so it can’t be scanned until the swelling goes down.
In the immediate aftermath of Jago’s diagnosis, I was quite happy to follow what the doctors at GOSH said without questioning it. But a week or so later, I found myself waiting until the kids were asleep and scouring the internet for an alternative treatment.
I came across roughly 70 that were being trialed but even with my limited medical knowledge, I could discount some immediately because Jago didn’t meet the inclusion criteria. At the beginning of May, I took the remaining trials to one of Jago’s doctors. He was very supportive but told me that some were too early, and others didn’t have enough of a scientific backing.
I also spoke to numerous doctors in the US. One pointed me in the direction of a Swiss trial taking place at the Children’s Hospital in Zurich, researching a new type of medication that looks promising in a laboratory environment and is much more potent than its predecessor.
I got in touch and they requested Jago’s medical records, which the hospital sent through. He has been accepted, pending the results of his MRI.
At this stage, the aim is simply to extend Jago’s life. We recently received a visit from the Palliative Care team but I hate that phrase – I can’t bear it. They discussed things like children’s hospices, which I just wasn’t ready to hear about.
I’ve been told about a second trial that’s creating real excitement in the medical community and sounds very promising. It starts this year, so by going to Switzerland, I am basically buying time to get Jago on that one.
I have never been one to compartmentalise thoughts and feelings but since his diagnosis, I have managed somehow to do it – maybe just out of necessity. I am quite a critical thinker; in my previous job, no two days were ever the same and I had to prioritise and make decisions on limited information.
I have found myself slipping back into that mode, almost stepping out of ‘mummy’ role and looking at the situation dispassionately.
Of course, there is huge emotion within me but I have tried to park it. If not, I think my heart would meltdown. If I wasn’t a single mum with two five-year-olds to look after, I would just be weeping all the time.
The money to fund Jago’s place on the trial was always in the back of my mind. The medication itself is free but we have to pay for things such as brain biopsies, MRIs, blood work, anaesthetists and hospital stays.
I waited to set up a fundraising page until we knew whether the trials could actually benefit Jago but it was still scary when the time came to set it live. I worried what people would think. I am quite a private person and very used to being independent but at the moment, we are looking at very poor diagnosis so I had to swallow my pride and ask for help.
People have been amazing. The positivity has been overwhelming and I have been blown away by the kindness of complete strangers.
I haven’t entertained the possibility that we won’t raise the £450,000 required. It’s a lot, but if everyone who hears Jago’s story donates five pounds, we’ll get there.
The coronavirus crisis barely registers with me anymore. When it started I followed the updates and death count in horror just like everyone else. Then after we found out about the tumour, I just stopped. It was such a surreal situation to have my poor little boy get a horrendous diagnosis while this huge pandemic swirled around us.
So many cancer treatments for adults were put on hold but I am so, so grateful the paediatric teams went on regardless.
Our next few weeks will be spent making memories, taking day trips and playing outside in the garden. I haven’t told Jago or his sister about the diagnosis – all they know is that he is getting treatment that makes him feel better, and so far, they’ve accepted this explanation.
Jago isn’t sad exactly, but he is a shadow of his former self.
He has been on huge doses of steroids that had nasty side effects and made him put on weight. He is being weaned off them now but still, he can’t bear to look at photos of himself from earlier this year when he was slim and full of energy.
We just have to live in the moment rather than focus on what might be down the road. I still have the blessings of how good each day is.
To donate to Jago’s fundraising page, visit gofundme.com
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