In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Luke Webber had suffered with headaches and double vision for about a year before being diagnosed with a low-grade craniopharyngioma in 2020 at the age of 12. Now 15, Luke , from Stevenage in Hertfordshire, has undergone two surgeries and proton beam therapy, and is being monitored with regular scans. He has been left with a number of lifechanging chronic conditions.
Here is Luke’s story, as told by his father Peter…
Luke’s always been a star. Before getting sick, he was very sporty and loved playing football and tennis. He lived an active lifestyle, had just started going out with his friends and enjoyed being involved in things. He liked to help others and displayed strong leadership qualities, going from head of sports crew and house captain at primary school to prefect when he moved up to secondary school. We always got amazing feedback in parents’ evenings and were very happy with his progress.
“It was during the summer of 2019 that Luke started complaining of headaches.”
He’d always had them to some extent but it was during our summer holiday to Majorca that things got worse. My wife, Suzanne, and I noticed he was displaying a real lack of energy and his headaches were such they wouldn’t disappear with Paracetamol. At times he’d even wake up with them in the night.
When we got home, we went to the GP. Luke had his eyes checked and some bloods taken but neither showed anything out of the ordinary. We were told to keep giving him Paracetamol and return if he got worse. Then one day he came home from school saying he couldn’t see the board.
“He’d had perfect eyesight up until the summer, when he had started wearing glasses, and we just couldn’t work out what was happening.”
I took him to an independent optician because I couldn’t get an appointment elsewhere and was too worried to wait. He was able to read close up text but nothing on the screen. I was told there was no reason for his poor eyesight and that sometimes children make such things up to get attention. The optician wrote “malingering” on his report and referred us to the eye clinic at Lister Hospital, in Stevenage, which was closed for the weekend.
“When we returned, the ophthalmologist couldn’t see any swelling on Luke’s optic nerve and put it down to stress and anxiety.”
Luke was referred to a neurologist who agreed with the assessment and we went along with it in the end too. He had a follow-up eye test in February 2020, which found his vision had improved slightly, but his next two appointments were cancelled during lockdown.
“By April, Luke had started needing long naps and didn’t have the energy to get through a full day.”
He just wasn’t the same boy. I tried to encourage him to get ready for football when it started up again by doing a Couch to 5k with him and, although he did it, where he previously would have easily beat me running, it was apparent he no longer could.
He was able to return to school as the child of a key worker and almost immediately began complaining of vision problems again. We took him back to the eye clinic suffering from double vision and that’s when they saw, for the first time, the swelling on his optic canal. He was admitted to hospital, where a scan the following day discovered he had a brain tumour.
“It was earth-shattering news because we knew nothing was going to be the same again.”
When I was younger, a friend of mine from Judo had died of a brain tumour so that was in the back of my mind. I knew they were dangerous and something to worry about and kept thinking back to him, although I hoped they’d be able to treat Luke and he’d be alright.
He was blue-lighted to Addenbrooke’s Hospital, in Cambridge. We had delayed telling him about the tumour following the doctors’ advice to wait until we knew more but a neurosurgeon told him at about 3am. Thankfully, my wife was there to comfort him. The hospitals were in crisis at the time because of lockdown and we couldn't all be with Luke at the same time. We couldn't be with each other and were separated from his younger brother, Ryan, who wasn't allowed into the hospital.
“We got the worst news possible and couldn’t be together to deal with it.”
Luke was put on a steroid called dexamethasone to reduce the swelling around his tumour and with that we started to see improvements. His headaches went away and he was able to see a bit better. He had more eye tests and MRI scans and was scheduled for surgery. This was cancelled twice before going ahead and each time we psyched ourselves up for it, knowing that we were in for a long day.
One week after diagnosis, Luke was taken into theatre for transsphenoidal surgery, which involved instruments being inserted into his brain through his nose during a seven-hour operation. The aim was to remove the cystic (fluid-filled) part of his tumour and as much of the solid part as possible, and take a biopsy. We were later told they had managed to remove about 75%, after which Luke was placed on a ‘watch and wait’ monitoring approach.
We walked into recovery expecting the worst and found him happily singing and telling the nurses he was going to be a mathematician at Cambridge. He had tested positive for MRSA before his operation, so from there he was moved into isolation on a high dependency unit.
“The next thing we had to deal with was Luke’s loss of pituitary gland function.”
We were warned beforehand that his surgery could damage it, requiring daily hormone replacements, but considering the amount he used to drink, as much as three litres a night, we now think it had already been partly damaged by his tumour. Diabetes insipidus, which he was subsequently diagnosed with, causes extreme thirst and increased urination. Luke has to take tablets to stop him passing water to prevent his body from losing the salts and other things he needs to stay alive.
We also found out he has adrenal insufficiency, which means his adrenal glands do not produce adequate amounts of steroid hormones. He has to take daily hydrocortisone and carries an emergency injection kit, which my wife and I are both trained to use.
“If he was to fall over and hurt himself at school, he could go into adrenal shock and would need to be rushed to A&E.”
He has hypothyroidism, which means he’s lost the ability for his body to send signals to his thyroid so isn’t able to produce thyroid hormones. This causes lethargy and, if he doesn’t have his thyroxin medication, which has to be taken first thing in the morning and 30 minutes before he eats or drinks anything, he falls asleep.
When he was discharged from hospital and on the right medication, he was well again, still recovering from major surgery and fighting fatigue, but as well as he had been in years. The oncology team confirmed his tumour was a low-grade craniopharyngioma, which we thought was good news because it meant it wouldn’t spread. Luke went back to school pretty quickly and it felt like magic had taken place.
“We thought the worst part of our lives was done and dusted, which made our shock months later that much worse.”
We knew that part of Luke’s tumour had been left behind and had been told about the possibility of him needing radiation treatment but, after his follow up appointment in September, we were told that wasn’t necessary. Then at his next scan three months after surgery, we learned the cystic part of his tumour had grown and he would need another operation, followed by proton beam therapy. It was really upsetting for us to hear.
We felt lucky that he’d been able to have transsphenoidal surgery the first time because it’s slightly less risky than having a craniotomy. For his second surgery, we had to decide whether to have an Ommaya reservoir implanted under his scalp to drain the cystic element, which would have relied entirely on proton beam therapy to kill the solid part, or a craniotomy, which is more invasive and was a really scary prospect. After much deliberation and on the advice of our neurosurgeon, we went with the latter and Luke was admitted in December 2020.
When we went to see him in recovery after his nine-hour operation, he was still out cold. It was a completely different situation to the first surgery and he was really ill from that point on. He was moved to ICU and it took a few days, but eventually he started coming around.
The first thing he asked for was food and we knew then that his hypothalamus, the part of the brain that produces hormones to control body functions like sleep, body temperature and hunger, had been damaged.
“That’s been life-changing for him and has caused a number of other illnesses, including hypothalamic obesity which causes constant hunger and weight gain.”
Luke started putting weight on instantly but it was particularly noticeable after the six weeks we spent at The Christie, in Manchester, during his proton beam therapy. Towards the end of that treatment, which began in January 2021, his radiotherapy mask was getting too tight.
He takes growth hormones and testosterone injections and is now a strapping 6ft tall 15-year-old lad who weighs more than 100kg. An added complication is the fact he no longer has impulse control so finds it harder to make the right choices, even though he knows what he should be doing. He was caught stealing food from the school canteen last year, which is something he never would have done before all this.
“It’s really difficult because he wants to be normal but can’t be.”
As time goes on, people forget what he’s been through and think he’s fixed because he’s been through treatment, but that’s obviously not the case. We’ve also recognised autistic traits in him and are waiting for the test to come through for that. He now has to carry cards to say ‘leave me alone’ and ‘don’t speak to me’.
“He’s gone from someone who wouldn’t have wanted confrontation with anyone to this person who struggles with his emotions and can react to the smallest of things.”
He's currently being monitored with annual scans and his next one is due early next year so our ‘scanxiety’ is building as we wonder whether our world will be turned upside down again. Luke’s still in and out of hospital with various appointments and at the start of his GCSEs. He wants to do well in his exams so is trying to be in school full time but he struggles with fatigue and needs the weekends to recover.
“For us, the changes we see in him are the hardest.”
Luke’s still Luke but there’s a complete change in how he handles his life and the side effects his tumour and his treatment have caused him. We’ve lost the old Luke and have another one in his place made up of bits of him from before and bits that weren’t there previously. It makes us appreciate how amazing the brain is and makes us want to raise awareness of brain tumours and their symptoms.
“We can’t help but think that seeing the word ‘malingering’ on Luke’s report swayed the decisions of others and delayed his diagnosis.”
He’s good at putting on a stiff upper lip and even now you wouldn’t know there was much wrong with him. We think his strength and ‘get on with it’ attitude may have added to that delay and would recommend anyone experiencing the same symptoms, a loss of fitness and energy, tiredness, double vision and headaches, pushes to get a scan because it’s possible the medical professionals won’t consider a brain tumour straightaway.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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.
Brain Tumour Research is determined to change this.
Together we will find a cure