SINGAPORE: A six-year-old British boy who came to Singapore for experimental treatment for an aggressive cancer is on his way home to the UK after staying cancer-free for about six months.
Oscar Saxelby-Lee, who was diagnosed with acute lymphoblastic leukaemia in December 2018, flew to Singapore with his parents in November last year after doctors in the United Kingdom said there was only palliative care left – they had exhausted all treatment options. He had just months to live.
But when doctors from Singapore reached out to the family with a new experimental treatment – that only one other child in the world has had – the family raised £500,000 (S$863,000) in weeks and made the trip.
It changed their lives.
READ: British boy who came to Singapore for treatment for aggressive cancer is ‘almost ready to go home’
Six months after the treatment, Oscar is in remission from cancer and his family flew home late Thursday night (Jun 25), after saying fond goodbyes to the team at the National University Hospital (NUH) who saved his life.
Speaking to CNA shortly before the family left Singapore, Oscar’s mother Olivia said they were feeling “thankful” and “overwhelmed” by the situation. They are expected to touch down in the UK at 1pm Singapore time on Friday.
“The team in Singapore are just incredible. Oscar is buzzing and over the moon. He’s had a really rough time and it’s been a long time since he has been home,” Olivia said.
“It’s so surreal, so overwhelming that we’re in this position. It’s such a whirlwind … there are no words to describe it.
“It’s a mentally, physically, emotionally, psychologically draining journey, but we couldn’t be more thankful that Oscar is here with us.”
Oscar underwent compassionate treatment – which means it is not even in the medical trial stage yet.
“We had to take the risk, and it paid off. It’s a miracle. The team at NUH are just phenomenal, and they are so special to us now.”
Less than a year ago, Oscar was facing very different odds.
ROUNDS OF CHEMOTHERAPHY NOT WORKING
Three days after celebrating Christmas in 2018, Oscar’s parents Olivia and Jamie received the worst news possible – their only son had cancer and it was spreading quickly. Acute lymphoblastic leukaemia starts in the bone marrow and invades the blood rapidly.
Within hours, doctor started chemotherapy, but about a month later, it was clear the treatment was not working. He underwent more intensive chemotherapy, forcing him into isolation.
By March 2019, it was clear Oscar was a non-responder. His parents were told he would need a bone-marrow transplant, with his appeal for a donor going viral in the UK.
A month later - and after four rounds of chemotherapy that left Oscar weak and tired – doctors said traditional treatments were not going to work. The cancer was still there.
At the end of May, he underwent a stem cell transplant after more radiotherapy work. He had only been home for a few hours on some weekends, and was kept in isolation for monitoring.
They thought the transplant would be the cure.
But in August last year, a small percentage of cancer cells was found – 0.01 per cent. A week later, it multiplied three times. Doctors were stumped, and told his parents there were no options left in the UK.
His parents reached out to doctors across the world, and heard about Professor Dario Campana’s work at the National University of Singapore (NUS) on childhood cancer.
They approached him and Associate Professor Allen Yeoh, head of paediatric oncology at NUH, offered to help. It was Oscar’s last hope.
In weeks, the family raised £500,000 (S$863,000) and flew over in mid-November. By then, his cancer count was about 1 per cent – it had multiplied by 100 times in just two months.
“It wasn't a very easy decision at all. It was probably, you know, it was and it will always be the hardest decision of our lives,” Olivia said.
“The (NUH team) welcomed us with open arms and have done everything in their power to save Oscar’s life.”
By the time he arrived in Singapore, Oscar had spent 10 months in isolation in hospital. He had lost so much weight and struggled to walk – the little boy developed bruises on his legs from the strain of walking.
The new form of treatment would see immune cells from a patient’s blood drawn and equipped with a Chimeric Antigen Receptor (CAR-T).
The receptor binds itself to a specific protein on the cancer cell and activates the CAR-T cells to kill the cancer cells.
This particular form of CAR-T treatment is different and more difficult because the leukaemia cells resemble Oscar’s immunity system, Assoc Prof Yeoh explained previously.
By the time they were ready to start treatment on Christmas Eve last year, Oscar’s cancer count was 7 per cent.
“There was every doubt it wasn't going to work. This treatment wasn’t even at trial level - it's compassionate,” Olivia explained.
“It was all new to us. We didn’t know anything about Singapore, and we had no idea what we were getting into, but when there's a light in such a heartbreaking, traumatic time, you reach for it.
“We just packed up and went for it. It was far away from everything we knew.”
READ: No cancer cells detected: First major step to recovery for British boy in Singapore for experimental treatment
BRAIN INJURY, BRITTLE BONES, WALKING PROBLEMS
Being away from their family during their time in Singapore has been difficult. There was no guarantee the treatment would work.
“We had to have conversations with the team about what plans we would have to make to get Oscar home if he didn’t pull through, and they were really, really hard parts,” Olivia recalled.
“I’m grateful he’s here with us.”
By mid-January there was good news – there were no cancer cells in Oscar’s blood. There was a cautious celebration – Oscar had been to this stage before, but yet the cancer came back.
It didn’t, and in April, Oscar was discharged from hospital. While the world struggled to contain the COVID-19 outbreak, Oscar was fighting his own battles.
Four rounds of chemotherapy, radiotherapy, isolation, two stem cell transplants and an experimental treatment left the six-year-old boy weak and exhausted.
There were serious side effects, besides the bouts of vomiting and diarrhoea. With his immune system severely hit, ulcers and sores started appearing in his mouth.
He developed osteopenia – a condition where bone mass is lost and bones become brittle. Struggling to walk, Oscar started moving around the house with a walker, exercising his legs and taking small steps with some help from his parents.
He also acquired brain damage.
“There were a lot of questions when Oscar acquired this (brain) damage - if he would ever get to speak again because he lost all his speech. He couldn’t communicate very well, couldn’t even lift his head up,” Olivia explained.
“He was pretty much comatose for some time.”
But the damage is reversible, doctors said, and he was prescribed medication to help. While the little boy still suffers from tremors, he is beginning to walk again without help.
“Every small step is helping him recover. He has gone through the mill – the amount of trauma he has been through for his age.
“You look at where he is today, and every day he is getting stronger – it’s very small steps – but every step gets him stronger.”
Updates on the family’s Facebook page show Oscar fighting to build a stack of pancake toys, to eat, or struggling to take a few steps, but he never stopped laughing or smiling.
“He is always smiling. I’m not sure how he does it, but we try to encourage him every step of the way. He’s just inclined that way. Even now, he smiles even bigger now, after all he has been through. He's our little miracle."
A FOND GOODBYE, AND SEE YOU SOON
On Monday, Oscar went back into NUH to have his blood taken. It will be frozen as a backup for Oscar’s treatment.
He went around the hospital, waving goodbye to the nurses of ward 8B and the doctors who he has come to know so well.
“The team in Singapore has been great, and they’re just incredible. They have done everything for Oscar, and they’ve saved his life,” Olivia said.
He will fly back in about six months’ time for a check up to make sure he has remained in remission. Once in the UK, he will go for regular checkups at Birmingham Children’s Hospital, near his home in Worcester.
“We've come this far, and we're about to go home and it's incredible,” Olivia said, shortly before they flew off.
“When we decided to come here, obviously in the back of our minds, that there was always that wonder of coming home with him. It’s happening.
“We’re at that point where we know this is definitely the best decision we made, and we can’t thank Singapore, Singaporeans and the NUH team enough.
“They took a leap of faith in Oscar, in us as a family, and they’re always by our side. We have formed friendships and trust, and it’s hard knowing that we will be leaving that behind. The team is committed to helping him for the rest of his life, if they need to, and that’s incredible.
“Singapore’s our safety net, and we’re so emotional. It’s a really hard goodbye, and hopefully we’ll come back and he’ll have recovered fully.
“I hate to look too far down the road, because I want to live in the moment now – life has taught us that – and to appreciate what’s in front of you today.”
The dream for the family is that Oscar will recover, and be healthy again.
“I never want to see him in an intensive care unit again. I never want to see him in a paediatric cancer ward, I never want to see him have another needle insertion,” Olivia said.
“I never want to see him looking at me in my eyes, with so much fear, admiration and (need for) security all in one – I don’t want to see him go through that again.
“I never want to have to sit with him and say, ‘you know, this is okay’, when it’s not okay. I never want to see him suffering again.
“I just never, ever want him to experience anything like this again.”