In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Skye was four-years-old when he started feeling nauseous in the morning and then began vomiting. A month later, after his parents insisted on him being referred to a paediatrician, Skye was diagnosed with a grade 4 medulloblastoma brain tumour. After surgery and treatment following the now withdrawn Milan Protocol, Skye developed radio-chemo neurotoxicity which caused tetraplaegia and eventually tragically led to his death less than a year later.
Here is Skye’s story, as told by his mother Sally …
Skye was born on 5 November 2008 and was a healthy and happy young boy. He developed normally and, having enjoyed pre-school at Long Furlong Primary in Abingdon, Oxfordshire, was due to start at Rush Common Primary School in September 2013.
Skye was a very sociable chap and was desperate for a younger brother. All of us were overjoyed when baby Jesse was born in October 2011, and, as the two of them grew, the bond between these brothers was palpable. Jesse would gurgle and laugh, beaming at almost anything Skye did and said. Skye lavished kisses and bear hugs on his best friend and always felt it his duty to supervise and moderate any unwanted attention from other children. Life was busy, but pretty fantastic, and, as a family, we were fortunate to enjoy an extended overseas holiday together from December 2012 to April 2013.
“We always knew that this was a special time for us as a family, but in retrospect it was unbelievably so. We still can't believe that during that period, there was absolutely no indication of what was lurking beneath the surface.”
On Friday 26 July 2013, Skye felt a little nauseous when he woke up, but as the day progressed, the nausea disappeared and he was his usual bubbly self. The pattern repeated itself the next day, but this time, he vomited. We initially suspected that he had eaten something which had disagreed with him, but it became a daily pattern, and after a few days, we booked to see the GP. This was to be the beginning of a very difficult journey.
After numerous visits to the GP who diagnosed acid reflux and the failure of medication to combat the condition and to stem the daily episodes of vomiting, we insisted on a second opinion within our GP’s surgery and then a referral to the paediatrician. We were told that an appointment would take two weeks, but although Skye was still only showing symptoms of morning vomiting, he was growing weaker due to this so we insisted it that he should be seen the very same day. That day was 27 August 2013 and one that changed our outlook on life forever.
I had spoken to a number of friends in the medical industry and done a large number of google searches but because Skye never complained of a headache, nor had a head tilt, we did not for one moment think it was really serious. Now when I google these symptoms, the Headsmart campaign pops up which retrospectively could have provided such a useful missing piece of the jigsaw.
I even remember telling Skye to look ill for fear that I was being branded a high- maintenance, paranoid parent. Even on the way back from the scan, the doctor in charge told me that all looked absolutely fine. As we were sitting back in the waiting room just waiting to be signed off the phone rang and I overheard the doctor at the front desk say: ‘But I have just told the mother everything is fine.’ Even though there was a waiting room full of people, I just knew she was talking about Skye.
“What followed was a complete blur; it was like the whole world had gone into slow motion. I was told the news that Skye had a brain tumour while Skye was present, so my first reaction was to not show any sign of panic or emotion and just be completely pragmatic.”
We were not allowed home and were admitted to a ward the very same day.
Friends came to visit as if to say their goodbyes, but Skye and I were enjoying the novelty of being in hospital and had no concept of how hard the journey ahead of us was going to be. It was not until we had to read through and sign the never-ending consent forms that it started to sink in and I suffered a huge panic attack in the middle of the night, two days before his operation. I vowed to myself then that if he died, I would join him in death.
My husband was very emotional, but I seemed to adopt an almost robotic personality for Skye’s sake and just felt this was a massive undertaking, but one that would see Skye through to a cure and a happy life ahead.
Following a seemingly successful, eight-hour surgery less than a week later, and tissue analysis, the tumour was identified as a grade 4 metastatic medulloblastoma, which is the most commonly occurring paediatric brain tumour, but comes in a whole range of guises depending on its stage of development. We were initially told that he would have an 80% chance of survival, but that this would be reduced if it had metastasised.
The tumour was an aggressive one and was categorised as a primitive neuroectodermal tumour (PNET) originating in the cerebellum, the part of the brain which controls movement and coordination.
“Although the doctors said we had caught it early, devastatingly, the tumour had already metastasised throughout the brain and spinal cord. We knew Skye’s chances were reduced, but were also told that a good number of children in the same position had been successfully cured. Naturally we just thought that Skye would be one of the lucky ones if we cared for him well enough.”
Following surgery, Skye was left unable to walk, but he vowed to himself that he would walk again and, sure enough, three months later and with a lot of determination just before his fifth birthday he was up on his feet.
Skye then underwent four cycles of chemotherapy over 11 weeks, and a further five weeks of hyper fractionated radiotherapy (a form of radiation treatment in which the total dose of radiation is divided into small doses and treatments are given more than once a day). We found ourselves living in hospital more often than being at home, but were lucky because my mother lived fairly close by. She could bring Jesse onto the ward most days to visit. Skye was always thrilled to spend time with his little brother, but all too soon it was time to say goodbye and every day the hospital corridors were haunted by the sounds of Jesse’s cries to stay with Skye and Mummy.
My husband and I had to make a very difficult decision about radiotherapy versus proton beam therapy, but were guided by our consultant and conversations with consultants at St. Jude’s in the USA. Because the Milan Protocol was boasting a higher survival rate than other treatment protocols (although we later discovered this was not in fact the case) we opted for the hyper fractionated radiotherapy as instructed by the Milan Protocol which was recommended by our consultant rather than the once daily proton beam therapy.
For this, Skye and I relocated to London for treatment at UCLH. It was a very tough time as Skye had to be persuaded to lie still for two 45-minute sessions a day. He was naked on a hard table with his face pinned down by an exceptionally tight-fitting mask – something that would not look out of place in horror films – yet he summoned the bravery to do it.
There was a break in his treatment for Christmas, which I was very unhappy about, but unlike other countries, hospitals in the UK seem to work to a minimum at weekends and holiday periods. In between bouts of vomiting, Skye was able to enjoy Christmas Day and open his stocking full to bursting with Percy Pig sweets which he had asked for, not for himself, but for his favourite nurse Natalie back in Oxford.
On completion of Skye’s radiotherapy, the following few weeks were incredible and spent largely at home with the odd visit from friends and much anticipated short trips into school with me. We did have one set back when Skye developed shingles and was rushed back into hospital a very poorly boy and, yet again, misdiagnosed as having impetigo, despite his hard pallet showing necrosis on one side only (a tell-tale sign of varicella-zoster virus). After a few heated conversations with the registrar on duty, it was finally agreed that Skye needed to be urgently treated for shingles.
In early May, we were given the incredible news that there was no further sign of cancer and, although a degree of caution should be taken with the scan result, he was cured. We were elated.
To complete the Milan Protocol, Skye still had to endure high dose chemotherapy, which confined him to hospital for seven and a half weeks. This was tough going and completely barbaric to watch, as well as care for someone with such harsh side effects including total necrosis of the mouth and gums, continuous vomiting despite all the anti-emetics that could be thrown at him and a massively swollen groin to name but a few.
The thiotepa drug used was excreted through the skin, so it was my job to bath Skye thoroughly at least four times a day which was a hard ask for someone who was just so weak and wanted to be left alone. We could also only see Jesse through a glass window which was emotionally difficult. Once finished, Skye was left unable to walk again, but discharged to go home for a few weeks to recover and get ready for round two.
Instead of getting stronger, we could see that Skye was becoming weaker. He began suffering with paraesthesia (pins and needles) in his hands and feet and I became aware of a very slight change in his speech. Despite being assured this could all be put down to part of the recovery process, I ended up packing us an overnight bag, and turning up on the ward, refusing to go home until further investigations had been carried out.
An emergency MRI scan on 20 May revealed that there were widespread white matter lesions within the brain and spinal cord. This caused a flurry of correspondence between consultants across the UK and abroad resulting in Skye being put on high dose steroids to counter inflammation.
“This was such a terrifying time as we suddenly realised that the medics were not actually well-informed about Skye’s condition and for the first time, we started to lose faith in the system.”
We were informed that what had happened to Skye was highly unusual and very rare, which we later discovered not to be the case as a number of children had previously either died or had varying degrees of serious paralysis after receiving their treatment in Italy.
Together with Skye’s consultant, my husband and I worked tirelessly contacting medical professionals world-wide to come up with more answers and a treatment plan.
Skye was initially diagnosed with radio-necrosis, brought on by the combination of the therapies which he had endured. It was absolutely heart-breaking to see him by now in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. But he fought on, as did we.
The treatment left him weak and vulnerable, yet strong and brave. Skye was fully aware of everything that was happening to him. He had always been a boy who wanted to be doing rather than sitting slumped in front of the TV, so I tried my very best to continue to help him achieve his wishes.
The school was incredibly accommodating and let Skye and me into some of the lessons. His mind was that of a very mature young man but suddenly now with the body of a baby which he hated. He used to have to sit on my lap so I could prop him up and, although his speech was now very slow, he used to tell his friends jokes and they taught him how to make loom band bracelets. I would often carry him outside at break-time and use his fingers to weave the colourful bands so he could feel part of school life which he had so craved.
We were now in a period of unknown; none of us knew if he was going to improve, remain stable yet as a paraplegic, or deteriorate. It was just the most horrific of times, especially as we needed to keep the day-to-day activities as enjoyable as possible. Skye continued to have hope in his heart and truly believed, as we did, that he would eventually be ok.
“Tragically, our dear boy Skye Benjamin Hall died at home on 29 August 2014. My soul-mate and best friend has left such a void in my heart that I am now just a shell. Jesse, who sat on Skye’s bed for days afterwards, has lost a hero and buddy.”
Skye had a very common type of brain tumour. It was devastating to lose him, not because of the tumour, but because of the horrendously toxic side-effects of his treatment which should never have been adopted from a single centre study without having procedures in place to evaluate its efficacy.
An inquest after his death produced a ‘Prevention of Future Deaths’ report and we have been contacted by a number of other families who have also tragically witnessed their children die due to radio-chemo toxicity yet, to date, little has been done to sufficiently address this fundamental aspect of care.
We set up Blue Skye Thinking to support research into childhood brain tumours, with a vision to give all children diagnosed a better chance of survival and improved quality of life during and post treatment. We also are lobbying and campaigning for greater investment into research of brain tumours to bring parity with, for example, leukaemia and breast cancer, which have seen amazing advances in survival rates, as a result of significant funding into research.
Since we lost Skye, he has three more siblings who have never got to meet their big brother. Meanwhile Jesse, who seems so much more emotionally mature than anyone else of his age because of what he has been through, four years on still really misses his older brother. Just the other day he was stirring the Christmas cake when he said: ‘I wish Skye was here.’
Our hearts will remain broken forever.
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.