SINGAPORE: At five years old, Oscar Saxelby-Lee has already gone through more than what most people will do in a lifetime.
Oscar is battling acute lymphoblastic leukaemia - a rare form of aggressive cancer that has so far rejected all forms of treatment.
The small boy spent most of 2019 - 10 months in total - in isolation wards as doctors fought to find a way to save his life.
Most children his age would be starting school about now after enjoying life, playing and learning.
Oscar has had a very different time, undergoing four regimens of chemotherapy, a stem cell transplant, and treatment where healthy cells are injected into him.
They have all failed - the cancer remains in Oscar’s blood and will kill him in months if left to itself.
Still, there is hope.
The latest experimental treatment, developed in Singapore, might save his life.
The boy from Worcester, England has flown here for a new form of treatment, in which immune cells from a patient’s blood is 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, Associate Professor Allen Yeoh, head of paediatric oncology at the National University Hospital (NUH), explained.
Oscar will be the second person in the world to undergo this. The first child received the treatment only months ago in NUH.
This is compassionate treatment - which means it is not even in the medical trial stage yet - but his parents and doctors believe it could save Oscar’s life.
His mum Olivia, 24, said: “Oscar is not giving up. He doesn’t give up.”
LEUKAEMIA WAS THE LAST THING ON OUR MINDS
About a year ago, Oscar’s parents’ world crumbled. The normally active four-year-old boy was unusually lethargic, struggling to move around or play.
Three days after Christmas in 2018, his parents received the worst news possible - Oscar had cancer and it was spreading quickly.
Acute lymphoblastic leukaemia starts in the bone marrow and invades the blood quickly. If not treated, it would have killed Oscar in weeks.
“It was quite a scary diagnosis because he got to the point where he was laying on the sofa every day unable to move around. He was so lethargic,” Olivia explained.
“It was diagnosed and told to us over the phone. We had a bit of intuition that something wasn’t right – but not leukaemia. That was the last thing on our minds.
“We rushed him into hospital and treatment began that day.”
Doctors started treatment just hours after the diagnosis. But within 28 days, it was clear the chemotherapy was not working. Medical staff started more intense chemotherapy.
But in March 2019, doctors told Oscar’s parents he was a non-responder, and that the cancer remained in 30 per cent of his cells and was spreading quickly. He needed a bone marrow transplant.
The news soon went viral on social media, and thousands of people queued up in the hope of being a match for Oscar.
“We spent three months trying to find a donor and we had a massive plea, it went really far,” Olivia said.
“We thought we got to the point when we wouldn’t find his match, but out of the blue, we did.”
That was welcome news because Oscar was struggling.
By April - in the fourth and strongest dose of chemotherapy - it was clear the usual treatment for acute lymphoblastic leukaemia was not going to be enough. Doctors could still detect cancer cells in Oscar’s blood.
CANCER SPREADING QUICKLY
At the end of May, the little boy underwent a stem cell transplant after more radiotherapy and conditioning in isolation. By this point, he had spent two months in isolation, with only the occasional reprieve when he went home for a few hours on some weekends.
“All of the isolation, (that was) 10 months in hospital. He had a couple of days home leave, here and there, but never got discharged. He’s not been home overnight and has to come back to hospital,” Olivia said.
“He has been isolated for a very long time.”
It was thought that stem cell transplant might be the cure, but in August, a small percentage of cancer cells was found in the bone marrow - 0.01 per cent.
Acute lymphoblastic leukaemia is aggressive. A week later, the number of cancer cells had multiplied three times.
“We knew it was going to grow. It is his kind of disease,” Olivia explained.
“Within a week, it had gone up to 0.03 per cent. We knew it was rapidly increasing. This was the point when the doctors explained to us that a stem cell transplant was Oscar’s cure, and that was the best thing they could have offered him.
“They sadly didn’t have much else to offer. To us as parents that was the worst thing possible to hear.
“We knew Oscar had an angry, horrible disease. We didn’t feel (what the doctors told us) was enough. He was so well. He was back to his really happy, chirpy self.
“He was recovering so well – and it was only a small amount of disease. We still thought there was something we could do for him.”
That was when doctors told Olivia and her partner Jamie to consider other treatment that was not available in the UK.
A NEW HOPE
Medical treatment in the UK is covered by the National Health Service, which means treatment was free for Oscar.
But trying experimental treatment in other parts of the world could cost a lot of money.
Jamie, who had a job as a builder, stopped working in March to take care of Oscar. Olivia, who had worked as a teaching assistant, was retraining in university to be a social worker.
They simply did not have the huge amount of money - £500,000 (S$885,000) - needed to fly to another country for treatment. So, the family approached the Grace Kelly Childhood Cancer Trust for help.
No one would insure Oscar, and the money proved a big hurdle, but thousands of people responded and they raised the required funds in just three weeks.
So many people wanted to help, Oscar's parents set up a Facebook page to provide regular updates on his progress.
Jamie and Olivia 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 Assoc Prof Yeoh.
“Everybody kind of gave their advice but didn’t have very much to offer. Speaking to Prof Allen - there was a very tricky conversation (about coming to Singapore),” Olivia explained.
“It’s in a different country – it’s halfway across the world for us – and we just didn’t know what to do.
“For us to make the decision and for another country to accept Oscar was a really tough call to make.”
Oscar had one more treatment in the UK. Again, there was no response – cancer still ravaged his bone marrow.
By November, Oscar's condition was worsening - the cancer cells had multiplied 100 times since the end of August. With no more options apparently available in the UK, the family made the decision - they had to come to Singapore.
Assoc Prof Yeoh said he knew the previous treatments would fail – the disease was “uncontrollable”.
"The parents knew that was not working and they flew in.”
By the time Oscar arrived in Singapore on Nov 19, his cancer count was 1 per cent, and growing ever more quickly.
VERY LITTLE TIME
Doctors in Singapore knew they had little time. The treatments in the UK had brought some respite, but they also knew Oscar needed to be well enough for the experimental treatment.
While some in the medical team worked on that, others toiled around the clock to prepare the cells to be injected into the five-year-old.
Assoc Prof Yeoh said: “We knew the cancer had the cells that the treatment could attack. We had to harvest his cells and worked around the clock for six weeks to get it ready.”
When he arrived in NUH, Oscar had been in isolation for months.
“When they came, while we were working on the cells, we wanted him to be stronger. Basically we took everything off and let him enjoy himself,” Assoc Prof Yeoh explained.
“He started walking. Mum noticed bruises on his leg and it was because he was walking again – previously he didn’t walk for months (while in isolation).
“We got him out to the zoo and out somewhere making Christmas trees. We needed him to boost up his feelings and to get his family to recharge before the next fight.
"You need the rest before this final run.”
Olivia said: “Oscar is very good, he understands that he is poorly, he understands he has got really bad blood.
“We don’t want him to know how much risk he is at, or what potential risks, we just want him to know that he’s getting better.
“It’s longer than we thought it was – we’re sorry he is in hospital. He has every right to be upset.
“But I always say to him there is no reason why he is here and I wish there was, but it’s just that he has got poorly blood and he needs to get better.”
“THIS IS THE ONLY THERAPY”
On Dec 18, the young boy was brought back to NUH to prepare him for the new cells to be injected. By then, his cancer cells had multiplied and was now at 7 per cent.
On Christmas Eve, his parents decided there was no time to lose.
Assoc Prof Allen said: “He was relapsing. Mum knew he was relapsing. Out of 100 cells in his bone marrow, seven of them were cancerous.
“When he had one cancer cell in 10,000 you knew it was starting to relapse. You predict he would not respond to other treatment.
“It’s very fast. These cells are even worse because they have seen all the chemotherapy, have evaded the bone marrow transplant cells in general … so these to me are seasoned terrorists that would be ready to destroy and kill him.
“This is the only therapy that we could do in general.”
On Thursday, Oscar was let out of isolation for 10 minutes to walk around the ward. It was a moment of freedom for the young boy, who will be facing high fevers – among other symptoms – for the next few weeks as his body battles the cancer.
Olivia said her family is grateful to be here.
“It was quite worrying coming to a different country. My worry as a mum was, am I doing the right thing? What do I do?” she added.
“Our time here has really shown us that the Singaporean way is so kind.
“There have been a couple of times I get in a taxi and I burst out crying and the drivers are always so kind.
“There is a great team here, the nurses are great to Oscar.”
For Olivia, the hope for her son is that he will no longer be plagued by the cancer that has ruined 2019.
“We’ve been through so much together. We also want to encourage others not to give up – if the treatment is not there, go out and find it,” Olivia said.
“It might not work, but try. If it was not for us looking for Oscar, we wouldn’t have got here. No consultant in the UK was going to send us to Singapore.
“The hope is he is in remission for the rest of his life – that he’s cured. But I would love to see him without any suffering any more.
“It has been a year of trauma. If I can ask for one thing, it’s for him to be happy and well and himself, content with his life.”