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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Charlie Pudney – In Hope

Charlie PudneyCharlie was just seven-years-old when he was diagnosed with an ependymoma. The tumour was successfully removed in surgery but, as there was a high chance of regrowth, Charlie and his family travelled to the States for nine weeks of Proton Beam Therapy. Now back at school and enjoying football once more, Charlie is well and undergoes regular scans. The experience has changed the life of his family forever.

“Charlie is the same little boy as he was before although, emotionally, the experience has changed us. We live for now and don’t take anything for granted. I am angry and frustrated to think that brain tumours kill more children and adults under the age of 40 than any other cancer … yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is such a complex disease and although I understand this makes diagnosis and treatment so difficult, it affects so many young people that this is precisely why more needs to be done.”

 Charlie’s mum Vicky tells his story: 

On 5th May 2015, our family was blindsided when our fit, healthy and full of life seven-year-old son was diagnosed with a brain tumour. One week we were just a normal family, happy and sweating the small stuff as you do, and the next we were thrust into an unfamiliar and terrifying world with no way out. No second chances.

In hindsight, the first sign that something was wrong was when he was sick one night out of the blue after tea at his grand-parents’ house during the February half term in 2015. Then it was a month later that he was sick next – straight after breakfast one morning. I put that down to him eating too quickly. A few weeks later, we were fortunate enough to go to Argentina with another family over Easter to visit some mutual friends. Charlie was sick on the plane on our way out there and again on the way back. He didn’t eat very well while we were away and seemed a bit sleepy but I put it down to travel sickness, jet lag and the heat. Other than that we had a blissful holiday with no idea of what was just around the corner.

Within a week of returning home, Charlie started vomiting as soon as he woke in the mornings. He also complained of a few headaches. I wasn’t happy and took him to the doctor. “Probably a urine infection” we were told. If those tests came back clear, we were to monitor Charlie for another few weeks and see how he was. Somewhat relieved, we trotted home with a sample pot. Three days later the UTI test came back clear. But Charlie was still being sick in the mornings on an almost daily basis and at times he was uncharacteristically lethargic. With no sign of a temperature or vomiting other than first thing in the morning, I just couldn’t put the sickness down to any of the usual things like a tummy bug, a food allergy or infection. Strangely I think at that point I knew something was terribly amiss, but you cling onto the fact that anything that bad is so rare that it just can’t be.

It sounds unusual to be grateful for a nosebleed.  Charlie had them occasionally and the majority occurred during the night.  He would usually wake us up calling for help from this bed or the bathroom. This time he didn’t. He managed on his own and got himself back to sleep. Without knowledge of his night time exploits I panicked when he was sick in the morning and this time it was blood red. I wasted no time in shuffling our daughter Eva off to school and going straight to A&E. Unfortunately Ian was in the US with work so I ended up taking Charlie on my own.

The visit to A&E was relatively uneventful and appeared inconclusive. The doctors appeared perplexed by Charlie’s symptoms. Yes he had vomiting, and yes, a few (mild) headaches but their timings and intensity didn’t fit with a brain tumour diagnosis. Neither were there any signs of imbalance, eye problems or any seizures which are all common signs. The evidence of blood in the vomit that morning was also a bit unusual … until Charlie decided to divulge his nosebleed to us all. With this new explanation a number of presumably horrible things were ruled out. We left none the wiser but with the promise of a follow up call to book in an MRI brain scan – “just a precaution”. I was relieved. The follow up came much quicker than I was expecting. I was driving home from the hospital when they called and asked to see us after the weekend. I assumed they must have had a cancellation to fit us in so soon. I guess they must have known more than they were letting on.

After a lovely bank holiday weekend and Ian back from his work trip, Charlie and I went off for the 8am scan appointment, kitted out in school and work clothes in anticipation for the day ahead. Ian stayed at home as he had some work meetings. “No need for you to come” I’d told him. “We won’t get the results today anyway.” Instead, my Mum, acting on her own intuition, had insisted on coming with me. She had been cross I hadn’t called her when I had gone on my own to A&E previously so for this trip I decided not to argue. This turned out to be one of the best decisions I’ve ever made.

After the scan, instead of being dismissed and told that results would be sent to my GP within five days as I had expected, we were asked to go straight to the paediatric unit to wait for the results. I can still remember being annoyed that I would now be even later for work.

What happened next is still a bit of a blur and I am sure always will be. Three very serious looking doctors were at the door asking me to step into a private room, a scan picture up on a screen, a nurse with a sympathetically sad face brandishing a box of Kleenex. The words “tumour”, “sorry”, “take your time”.

It felt like a cross between being violently winded and an out of body experience.  My mind was on the one hand completely numb, but on the other, in overdrive with a million dark thoughts and questions. The tumour looked huge to me and in a position that I just couldn’t imagine them being able to get to. Was it operable? Would we be told there was nothing they could do and that by Christmas we would be the parents of an only child? What if they could operate but he was left paralysed or unable to eat or talk? What if … ? It was half an hour before I could face Charlie and my poor mum had to make that call to Ian to tell him the devastating news. Although I later learnt that the phone reception was so bad that all he heard was “tumour” and had no idea she said brain tumour until he arrived at the hospital. We never got to school or work that day. By mid-afternoon, Charlie was in a bed on a ward at the John Radcliffe hospital in Oxford and about to undergo further tests.

At some point on that long and desperate journey up to Oxford, we told Charlie what was happening – that the doctors needed to have more of a look in his head and that there might be “a little lump” in there which we should get checked out. At that point, Charlie was absolutely fine with everything. He didn’t have much experience with hospitals so there was nothing for him to be afraid of. He wasn’t particularly bothered about what was going on. He was having time off school, playing video games, and getting plenty of attention with his mum and dad at his side.

Initially from the scan pictures, we were given the impression that the tumour appeared to be low-grade, although this would need to be confirmed by a biopsy taken during surgery. The main aim was to try to remove the tumour completely but at this stage it was not known how difficult this might prove. Everything felt in the balance and we had no idea how things were going to pan out.

Charlie was put on steroids to help control the swelling in his brain and to strengthen him up for the trials ahead. We waited almost a week for surgery and spent those days on the ward alongside some very, very poorly kids. Charlie, in comparison, appeared almost embarrassingly fit and well. Ian and I were absolutely torn up inside. It was very hard to manage the outside world; who should we tell? How should we tell them? When do we tell them and what words do we use? How do we tell them all at the same time?

We explained to Charlie that he was going to have an operation and, as the day grew closer, he became more and more nervous. From going to our local hospital on Tuesday morning for tests, we were now waiting for neurosurgery the following Monday. The days went slowly and our world seemed to shrink.

The day before his operation Charlie had the most wonderful surprise when his whole class from Bishop Wood Junior School in Tring turned up for a football game and picnic. An amazing idea from dear friends and neighbours of ours. It was just what we all needed and meant so much to all the kids, not just Charlie but for his friends who found it hard to understand why he had disappeared so suddenly from school.

I think they really needed to see him for themselves so they could understand where he was and why. They could see that he looked fine so it was very reassuring for them and for Charlie too as he faced the big challenge of surgery.

After a week of devastation, worry and sleepless nights, the morning of the surgery arrived. When we left Charlie in the care of the anaesthetists and surgeons that day our worry turned to relief. The agonising waiting was over and now there was something being done. No matter how scary it was, it definitely felt better than the waiting. We had been warned that the operation would last for anything up to ten hours and, as advised, we took ourselves away from the hospital. We were called after just three-and-a-half hours and asked to return.  More panic set in as we wondered if this was because of good or bad news. It seemed way too soon to be called back but it was good news. Things had gone as well as could have been expected. The amazing neurosurgeons had managed to remove the whole tumour, which in this game can make the difference to future prognosis. We were elated. There were a couple of minor post-operative setbacks and some initial double vision, but Charlie was soon discharged to continue his recovery at home and amazingly was back at school two weeks later.

Sadly, any feelings of relief soon became a distant memory when the biopsy results revealed the tumour was a grade three anaplastic ependymoma. Because these tumours have a high chance of recurring and are largely chemo-resistant, in order to have the best chance of long-term survival Charlie needed radiotherapy. A number of factors made him an ideal candidate for the more targeted Proton Beam Therapy. As it was not available in the UK this meant we would have to up sticks and relocate to the States for nine weeks. We were fortunate that the treatment was funded by the NHS. Ian was able to work remotely and so, within three weeks, we were all on a plane to Oklahoma City.

Charlie’s treatment only took 20 minutes each day. The rest of the time we made the experience as much like a holiday as possible – swimming, sight-seeing, and going on road trips. Despite the situation, we were able to enjoy some very special time together as a family. Perhaps because of the circumstances, that was what we needed most.

We were away from the beginning of July so the kids missed the last couple of weeks of school. We returned at the beginning of September and a day later they were back at school for the start of term.

To look at Charlie now, save for the small patch of hair missing on the back of his head, you would have no idea what he has been through. He’s back to his football and everything else he did before, it’s incredible. I pinch myself as I think how lucky we have been. Sometimes I feel anxious that things are too good to be true and worry about what might be around the corner.

I try my best to be optimistic about the future and we are trying very hard to enjoy life as it is now. The NHS has been fantastic. Charlie has follow up scans every three months and his experiences mean he is not so keen on hospitals now. He can’t stand needles – a feeling we share – and we negotiate over what treat he can have after his scan.

Happily, Charlie is the same little boy as he was before although, emotionally, the experience has changed Ian and me. We live for now and don’t take anything for granted as the future is so uncertain.

I am angry and frustrated to think that brain tumours kill more children and adults under the age of 40 than any other cancer … yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is such a complex disease and although I understand this makes diagnosis and treatment so difficult, it affects so many young people that this is precisely why more needs to be done.

Vicky Pudney, February 2016

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