Oscar Saxelby home at last after life-saving cancer treatment
‘You’ve done it! Your results are clear’: How mother of six-year-old Oscar – whose cancer plight touched so many – broke the happy news after he had life-saving treatment in Singapore… and now he’s home at last
She has shored up her emotional defences, steeled herself against tears; stayed strong in the face of crushing setbacks.
But on the day her only child Oscar was declared free of cancer, the dam burst and Olivia Saxelby cried with joy.
When a stem cell transplant in the UK failed, Olivia and her partner Jamie Lee made the trip with their desperately sick son from their home in Worcester to Singapore.
Funded by £500,000 from an online charity appeal, they were pinning their hopes on a revolutionary new treatment to give six-year-old Oscar a last chance of life.
Brave: Oscar with his parents Olivia and Jamie. When a stem cell transplant in the UK failed, they made the trip with their desperately sick son from their home in Worcester to Singapore
But the little boy was beset by problems: his parents feared their final, Herculean effort to save him could end in utter tragedy.
Then, last month, came the news that they had prayed for.
The life-saving therapy had been a success: Oscar was finally clear of the rare and virulent form of leukaemia diagnosed in 2018.
And yesterday morning, after six months in the Far East, he finally came home.
‘To bring him home safe and sound is everything we could have wished for,’ Olivia said joyfully.
‘It was so emotional, the minute those wheels landed on UK ground we were all just in tears. Oscar was screaming, he was so, so proud of himself — as he should be.’
Before they left Singapore, I spoke to Olivia and Oscar.
In an exclusive interview, the first since Oscar’s transplant, Olivia recalled the moment that his medical team in Singapore gave the family the results they had desperately hoped for.
‘They said, “It’s a happy day today. You won’t believe this.” And that’s when I cried bucketloads. I couldn’t speak. I was too overcome with emotion. I wanted to question it, but I have the evidence in black and white: the cancer has gone. It’s surreal; wonderful; just phenomenal!
‘When I told Oscar, who has been in a hospital bed for over a year, I said, “You’ll never guess what, you’ve done it! Your results are clear!” He beamed with joy and asked when we were going home.
‘It has been a truly unimaginable time, a time to rejoice.’
That Oscar is now home is all the more astounding because his recovery came after a series of relapses.
‘When I told Oscar, who has been in a hospital bed for over a year, I said, “You’ll never guess what, you’ve done it! Your results are clear!” He beamed with joy and asked when we were going home.
In the event, on Friday, March 13, Oscar had the bone marrow transplant. This time Jamie was his son’s donor. Although not a perfect match — a six out of ten instead of the ten out of ten of his first donor — the Singapore team deemed it close enough to proceed. Above, Oscar lands at Heathrow after spending six months in a Singapore hospital
‘Only a few months earlier, his doctors in Singapore were saying, “He might not ever be the boy he was before,” ’ Olivia recalls. ‘He wasn’t speaking, he was almost paralysed; his temperature spiked and he wasn’t responding to antibiotics.’
Oscar was due to have another stem cell transplant (his second in two years) and his medical team thought he might not pull through it.
‘But we had to believe. We had to have faith and hope. I could have said, “Don’t do it” but we would have lost him. So my partner Jamie and I said: “We don’t want to give up. Oscar deserves the chance of a future.” ’
No mother could have devoted more energy into seeking a cure for her child than Olivia. And Oscar has repaid his mum with unfailing courage and cheerfulness.
I met him via video call. He was beaming, wearing his favourite dinosaur jim-jams and taking his first tentative steps unaided.
He told me he felt good, that he’d been playing a game of dinosaur bingo and was learning phonics, on his way to reading for himself.
‘Oscar is a cheeky little character and every day he’s surprised us with his sheer determination to get through.
‘Even through his worst struggles he found something to smile about. When my strength of purpose has faltered, he has shown me the way. He’s the light of my life,’ smiles Olivia.
But Oscar’s chequered journey from diagnosis to all-clear is also heart-warming proof of the generosity and altruism of others; friends and strangers alike.
He was first diagnosed with acute T-cell lymphoblastic leukaemia shortly after Christmas 2018 and the prognosis was poor.
He would need a stem cell donor and transplant swiftly and there was no match on the national register.
Celebrations: Oscar and his dad dropped in on his school in Worcester to say a socially-distanced hello to his friends
So mustered by the rallying cry Save Oscar’s Life, a record-breaking near 5,000 would-be donors turned up at his school in Worcester to be tested to see if they were a match for him.
It was a rain-lashed day in spring and they waited in a queue that snaked round the block outside Pitmaston Primary School. Olivia was overwhelmed by their kindness.
‘It’s so heart-warming to know that every one of them wants to help our little boy,’ she told me then. ‘We just can’t thank people enough.’
A near-perfect bone marrow match was found and last May Oscar, who was being treated at Birmingham Children’s Hospital — where he had been confined for five months having chemo to prepare him for the op — underwent a bone marrow transplant, thanks to his anonymous donor.
Oscar had just begun school and Olivia was only three months into a degree in social work when their lives were put on hold. Jamie, 27, a builder, would get up at 4am to work so he could spend afternoons in hospital with his little boy.
And it seemed, for two short months, that Oscar would recuperate and their lives would continue.
But then came the first setback. ‘Our consultant came in to see Oscar at 5pm one evening. I knew it was bad news. He had consistent high temperatures, he’d been bruising easily, sweating profusely and had huge bags under his eyes — each symptoms of leukaemia.
‘Before the doctor opened her mouth I said, “I know what you’re going to say.” The cancer had come back with a vengeance,’ says Olivia.
They faced a desperate dilemma. The NHS would not pay for a second bone marrow transplant within a year of the first.
Tears flowed at the Worcester primary school when Oscar made his surprise visit, leaving children and parents overwhelmed with joy
‘All they could do was give Oscar top-up cells from his donor, which we knew was just buying time. They were very sorry but palliative care was all that was left,’ says his mum. Olivia is just 24, but her determination belies her years.
‘I went back home,’ she recalls. ‘I didn’t sleep. I researched. I eventually came across a pioneering treatment in Singapore.’
The complex treatment involved removing and genetically modifying a patient’s immune cells, known as T cells — that fight infection and disease — and multiplying them in the lab.
They become chimeric antigen receptor T cells (CAR-T cells) and are designed to target cancer cells.
Put back in the patient’s blood via a drip, they then recognise and kill the cancer cells.
And following the CAR-T therapy, Oscar would be given a second bone marrow transplant.
Olivia contacted a doctor at the National University Hospital in Singapore, where the treatment was available.
‘At that point, no other child had been treated with CAR-T therapy,’ she says.
‘I asked them to treat Oscar. They said, “It’s a big step. You’ll have to come to Singapore and have a minimum of £500,000 to pay for it.”
‘It was the biggest risk I would ever take, knowing I may not bring him home again.’
Others may have balked at the sheer scale of the task ahead. But Olivia and her friends launched a huge effort to raise £700,000; at the time, the fastest-ever crowd-funding effort of its kind.
The responsibility of taking her sick child 7,000 miles for experimental treatment weighed heavily on her.
‘I asked Oscar’s consultant, “What would you do if this was your child?”
She couldn’t recommend the treatment but she said: “I’d do the same as you,” and she promised Oscar’s team in the UK would stand by him.
‘It was a tough decision. I questioned myself. I felt so alone. Sometimes, at night I sat and cried my heart out wondering if it was the right thing to do.
‘We were petrified of anything happening to him but once we’d made the decision to go, we booked our tickets and flew out two days later.’
On Christmas Eve 2019, Oscar duly had CAR-T therapy at the hospital in Singapore. ‘His immediate response was very good, but a few weeks later he started to deteriorate. His speech was slurred, he lost interest in life,’ says Olivia.
‘He had an MRI brain scan which revealed damage. Soon he couldn’t pick up a spoon to feed himself or talk. He was more or less paralysed.
‘Oscar was due to have a second bone marrow transplant and I was thinking, “Will we regret putting him through this treatment?”
‘It was an awful dilemma because if I’d said, “We can’t do this,” we would have lost him. So I asked his team to re-evaluate him in a couple of weeks.’
No mother could have devoted more energy into seeking a cure for her child than Olivia. And Oscar has repaid his mum with unfailing courage and cheerfulness
When the time came to reassess his case, Oscar with still ailing.
‘His doctors were loath to give him the stem cell transplant and I remember thinking, “What are you saying? That you’re going to give up on him?”
‘I said, “Aren’t we here to save Oscar’s life? He deserves this future, the shot a transplant will give him.” But they didn’t think he’d make it through because he couldn’t move or speak, his brain damage was so severe.’
In the event, on Friday, March 13, Oscar had the bone marrow transplant. This time Jamie was his son’s donor.
Although not a perfect match — a six out of ten instead of the ten out of ten of his first donor — the Singapore team deemed it close enough to proceed.
Afterwards, Olivia’s aim was to stay resolutely positive and her little boy — cheeky and ebullient — slowly picked up.
‘We focused on all the little things that lifted him, whether it was playing a game of cards or sitting him up and having a giggle. Jamie drew pictures on a whiteboard — which Oscar loved — and slowly he began to communicate. We told him, “We need you to speak to us, then we can help you.”
Olivia is a young mum — just 19 when Oscar was born — freighted with more worries than any parent should endure. But it is her blend of toughness and optimism that has help carry her boy through
‘For months he’d just say “yes” or “no” but one day I said to him, “We know it’s very hard work and you’re tired but Daddy and I love you so much and we want you to try to speak,” and it was then that he said, “I love you.” ’
At this point Olivia’s quiet composure deserts her and she cries.
‘Today he strokes my face and ruffles my hair and he loves his cuddles with Daddy. He has pushed on, ploughed through all the treatment and we’re so proud of what he has accomplished.
‘He’s a kind little boy. When we lag behind him, he buoys us up, gives us strength.’
She is a young mum — just 19 when Oscar was born — freighted with more worries than any parent should endure. But it is her blend of toughness and optimism that has help carry her boy through.
While Olivia and Jamie initially hoped they might be home by the end of July, they have now achieved that goal with a month to spare.
Oscar, isolated in his hospital bed for not far short of 18 months, has endured his own form of lockdown, something of which his classmates are now getting a taste too, but he is raring to return to school.
‘We hope Oscar will start school again in September,’ says Olivia. ‘But his immune system is so fragile.’
She was anxious about taking him home, but now that challenge has been completed the family can finally celebrate.
A video posted on the Hand In Hand For Oscar Facebook page showed the little boy being given a guard of honour by medical staff as he walked out of hospital.
Some of the 4,800 donors that queued through the gates of Pitmaston Primary School, Worcester, in a bid to save Oscar’s life
Oscar was then shown waving out of the car window shouting: ‘Bye hospital, thank you!’
Olivia wrote on Facebook: ‘The day we’ve dreamt of has now become a reality! We’re actually bringing him home!!!’
Having landed, they paid a visit to his school for a socially-distanced reunion with friends, then the young family headed home, where they will be quarantining for the next 14 days.
She said the plan was to ‘just enjoy our home for the first couple of days’ before a socially-distanced reunion with other relatives.
Of course the question on everybody’s lips: is he cured?
‘I’d like to say he is, and he could well be,’ says Olivia carefully. ‘But I prefer to say he’s cancer-free and can move on with his life again.’
At last, it seems, he can.
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