A “beautiful and courageous” boy has died of a brain tumour weeks before Christmas.
Albie Bayliss-Watts was diagnosed with a rare, aggressive tumour in December last year, after becoming violently sick.
But following surgery and chemotherapy where he showed “strength and courage” throughout treatment, his illness worsened and he died in November.
His devastated parents Lauren and Hayley Bayliss-Watts, now want to support research into brain tumours – in the hope no other family will have to suffer like them.
Lauren told OxfordshireLive : “Hayley and I are grief-stricken and can’t bear the thought of Christmas without our beautiful, funny, courageous baby boy.
“Focusing our attention on raising awareness and fundraising is giving us some comfort in these extremely difficult times.”
Lauren, a support manager for the charity Style Acre, said Albie had suffered a seizure “out of the blue” in October 2020, after which he was taken to hospital.
“They thought it was a type of epilepsy and referred him to neurology,” said Lauren.
“But six weeks later, before Albie was to see a consultant, he started being sick. We thought it was a bug at first then he began vomiting blood and we became really worried.”
An MRI scan revealed a mass the size of a tennis ball on Albie’s brain. It was causing so much pressure that within hours, he was undergoing emergency surgery.
Lauren’s wife Hayley, pub manager at The Royal Oak in Didcot, Oxfordshire, said: “The operation lasted 10 hours. It was horrendous; we paced the corridors all day waiting for news and when, eventually, the surgeon came to tell us that it had gone to plan, we were elated.
“We went to see Albie in the intensive care unit (ICU) but because of the Covid-19 restrictions, we had to go in one at a time. It was clear he recognised us and again, we were so happy and relieved.”
Albie’s surgeon managed to remove 99 per cent of the tumour and after just five days he was able to go home.
But when the biopsy results came back, Albie’s parents were given the news that the tumour – so rare it couldn’t be identified – was high-grade and aggressive.
Lauren said: “On Christmas Eve, Albie had lines fitted in readiness to administer chemotherapy, which would begin in the New Year. Luckily, we were at home on Christmas Day and made some lovely memories – little did we know that it would turn out to be our little boy’s second and last Christmas.”
On New Year’s Eve, Albie began vomiting again and had an emergency scan, which revealed the tumour was already growing back and he would need to start chemotherapy immediately.
Hayley said: “Albie amazed us with his strength and courage. He would spend six days in hospital on the chemo, with a 21-day break in between each cycle but he often got poorly between cycles and would end up having longer gaps.
“The side effects were brutal but he would become stronger with each round; he was so determined. He’d run around the ward, making everyone smile and making us so proud. We called him ‘the unstoppable child’.”
On May 18, Albie celebrated his second birthday during a break in treatment.
Afterwards, his blood test results revealed his bloods hadn’t recovered sufficiently to resume chemo, so his treatment was delayed.
By July, his bone marrow was so damaged that he couldn’t continue on his treatment regime.
Lauren said: “In July, Albie started a higher dose of chemo, which involved a six-week stay in hospital. This treatment made him a lot sicker and the side effects were awful. It gave him a really bad tummy and he would spend most of his time in bed, which meant he lost a lot of muscle tone and had to build back strength.”
Albie came home on August 20 and was doing ‘really well’, leaving Lauren and Hayley to believe that he would make a full recovery.
However, the family was dealt another blow in October, when scan results showed the disease had spread to Albie’s cerebrospinal fluid and there were ‘areas of concern’ in his spine.
Hayley said: “We couldn’t believe it; we were expecting them to say everything was fine. It hit us like a tonne of bricks. On October 27, he had an Ommaya port fitted in his head to administer chemo directly into the brain fluid. It wouldn’t cure him but they thought it would give us extra time.
“Two weeks later, on November 11, Lauren and I finally got married, having postponed our wedding twice previously, due to the pandemic. We had our ceremony at Didcot Registry Office and then a huge party at the pub afterwards. Albie was there and it was so special; the best day of our lives.”
Albie joined his mums on their honeymoon at Haven in Weymouth, Dorset, but on the final day of their holiday, he became very unwell and they rushed him to the John Radcliffe Hospital.
A series of tests revealed that he had a bleed coming from a new tumour in the cerebellum, found at the back and base of the brain.
In just two weeks three new tumours had grown, all of them inoperable. There were no further treatment options available.
Lauren said: “We were distraught. On November 22, Albie had surgery to fit a shunt, which allowed him to be well enough to go to Helen & Douglas House Hospice in Oxford.
“As soon as we got there, it felt calm and settling; it was the right place for Albie. He liked looking out of the window at the gardens and was really peaceful there.”
Albie died at 6.30pm on Sunday, November 28, with his loving mums by his side, singing to him and holding his hands.
Hayley said: “Towards the end, we were almost willing him to let go because he was so helpless and wouldn’t want to be like that. But in those final moments, having given him permission to go, we were desperate for him to hold on. We were so conflicted. Nothing in this world can be as painful as losing a child.”
Albie’s grandmother, Sheila Bayliss, who runs Hagbourne Pre-school in East Hagbourne, Didcot, has previously fundraised for the Brain Tumour Research charity by taking part in the cause’s Wear A Hat Day.
The charity says brain tumours kill more children and adults under the age of 40 than any other cancer yet just one per cent of the national spend on cancer research has been allocated to the disease.
Mel Tiley, community development manager at Brain Tumour Research, said: “Albie’s story is truly heart-breaking and highlights the severe lack of treatment options for this awful disease..
“Like many other families affected by brain tumours, Hayley and Lauren are facing a painful festive period.
“We send them our deepest sympathies and are thinking of them and all those who knew and loved Albie, this Christmas.
“We remember Albie as we continue in our mission to increase the UK investment in brain tumour research, in order to find a cure for brain tumours.”
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.