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British boy who left Singapore a year ago after life-saving treatment is still cancer-free

A year after Oscar Saxelby-Lee left Singapore following a life-saving experimental treatment at the National University Hospital, CNA spoke to his family to find out how he’s still conquering the odds. “He just does not give up.”

British boy who left Singapore a year ago after life-saving treatment is still cancer-free

Oscar Saxelby-Lee, now seven, has been cancer free for 18 months. Before he came to Singapore in November 2019, doctors in the UK told him there was no other treatment for him. (Photos: Family)

SINGAPORE: When five-year-old British boy Oscar Saxelby-Lee came to Singapore in November 2019, he was staring death in the face. 

With his body wrecked by an aggressive form of acute lymphoblastic leukaemia, all treatment in the UK had failed and his parents were told to prepare for the worst.

But after undergoing an experimental treatment at the National University Hospital's (NUH) Khoo Teck Puat - National University Children's Medical Institute in Singapore, he was declared cancer free. 

Cautious belief - the leukaemia had returned after treatment before - turned to relief as he was allowed to be discharged and returned home. A year after leaving Singapore, Oscar, who's now seven, is still free of the disease.

READ: ‘Our little miracle’: British boy who came to Singapore for treatment for aggressive cancer heads home

“It has been a bit of a roller coaster,” his mum Olivia told CNA from England.

“The minute we got off the plane, it was a real hit to us - it was as if we were entering another world of the unknown. 

“Since we’ve been back … Oscar is just thriving and he’s doing really well. I mean, he’s defying the odds every single day. We are just living day by day ... he is a miracle.”

Oscar in a wheelbarrow at a pumpkin patch. (Photo: Amy Perkins/Humblebee Photography via family)

The journey has not been as easy. More than a year of treatments, isolation, and transfusions took a heavy toll on Oscar. 

Left with brain damage, tremors and difficulty walking, the little boy has since met many milestones in the last year – from going back to school, walking without help, and seeing his 7th birthday. 

It is easy to take these things for granted, explained Olivia, but for her and Oscar’s father Jamie, these milestones represent victories.

STARING DEATH IN THE FACE

Oscar was diagnosed with acute lymphoblastic leukaemia in December 2018. Acute lymphoblastic leukaemia starts in the bone marrow and invades the blood rapidly. Within hours, he started treatment.

Intense chemotherapy treatments failed. Radiotherapy failed. A stem cell transplant failed - the cancer would rear its ugly head each time.

When they heard about the experimental treatment in Singapore, they made plans to fly over. The treatment was so new, it was not even in the medical trial stage yet. Oscar was allowed to have it on compassionate grounds - it was clear he would die without trying.

By the time he arrived in Singapore, Oscar had spent 10 months in isolation in hospitals. He had lost weight and struggled to walk – he developed bruises on his legs from the strain of doing so.

READ: British boy, 5, in Singapore for experimental treatment for 'uncontrollable' cancer

Oscar Saxelby-Lee in NUH for acute lymphoblastic leukaemia treatment. (Photo: Family)

While the treatment killed the cancer cells, it also left him with brittle bones. He used a walker to get around, struggled to do small movements - his body was wrecked with tremors - and suffered brain damage.

It left Oscar weak, frustrated and tired, but still smiling.

“He’s had an extortionate, an incredible … amount of treatment that has knocked him. He was really poorly,” Olivia said.

“He lost all mobility, lost all his strength – the physical, primary needs to eat, sleep, feed – he wasn’t capable of doing that alone. 

“I know at such a young age of six, it was very difficult. Physically … he had lost it all.”

“CLIMBED MOUNTAINS”

The recovery has been tough: Months of physiotherapy work, day after day of small steps that left Oscar exhausted, and motor movements with his hands to build up his strength. For Oscar’s parents, watching him improve was a small miracle.

“He has come on huge ... he has climbed mountains, reach the peak and jumped them from one to another,” said Olivia, laughing.

“That’s how I would simplify it. He isn’t just surviving now, he’s living. At one point when we arrived home it was just survival … we’ve been through so much, we didn’t know how he would respond to a normal life.

“He’s doing really, really well in that perspective.”

Oscar is all smiles in school. (Photo: Family)

Going back to school was a huge milestone for Oscar. Starting with a few hours, he now has dedicated help at school to help him settle back in.

There is a sense of joy and excitement when Olivia talked about Oscar walking without help.

“Walking is another extreme, because he couldn’t walk when he arrived in Singapore. He couldn’t walk properly, and now he’s running,” she said.

“Well, he’s running as much as he can - he’s tottering around and he’s really going for it - he’s just loving life.”

Watching him kick a football was a huge step: “I haven’t seen him with a football since he was about four years old.”

Oscar playing football again. A year ago, he could barely walk. (Photo: Family)

But while children of Oscar’s age have seemingly boundless energy, Oscar knows there are limits. 

He is very aware of his own limitations, explained Olivia, and that plays “a huge part” in Oscar’s insecurities. 

“Some days he can get really upset because there’s still a lot that is asked of him,” she explained.

While Oscar tries to take it on the chin, the years of seclusion have made things difficult. But having fought through cancer, there was almost no chance of Oscar giving up.

READ: No cancer cells detected: First major step to recovery for British boy in Singapore for experimental treatment

“He really does have an ethic in life where he just keeps going, he doesn’t give up, and that inspires us as parents, and me, as a mother, every single day. So many other people are so proud of him.

“It’s just been great to watch him improve and develop. 

"On the outside, he looks like a growing, thriving little boy but on the inside, he’s really suffering.”

There are still many difficult days for Oscar. (Photo: Family)
Oscar in hospital. (Photo: Family)

Jamie and Olivia have to insert needles in Oscar’s legs four nights a week for 12-hour infusions, and he still takes medication to help with his neurotoxicity. Beating cancer doesn’t mean an end to hospital appointments, checkups and needles.

Over the last year, he developed a kidney stone that needs to be removed, he has undergone numerous eye checks, and suffered a vertebral fracture. 

There were still bone marrow aspirations and lumbar punctures, and because of his lowered bone density, falling down is a lot more serious for Oscar.

All these conditions force back Oscar’s desire to run around and play, his mother explained, and that sometimes leaves the boy tired and despondent.

NO HUGS AMID COVID-19

The COVID-19 pandemic also means sometimes, only one parent can be in hospital with Oscar. With a weakened immune system and the threat of COVID-19, it has been a difficult year.

It is not the end of hospital visits for Oscar. (Photo: Family)

“He’s such a cuddly loving boy. He senses through touch a lot, and every time he leaves his teacher in the morning, he’s giving her a cuddle, and he does that to the nurses and ... the doctors,” said Olivia.

“It’s become a really difficult part of Oscar’s journey, even now, because he really does search for that need and that response from other people who are caring for him, who are having that bond with him.

“That is just a small part of how COVID-19 has impacted us as a family.”

THERE IS NO FINISH LINE

But while Oscar has come on in leap and bounds, caring for him has sometimes taken a toll on his parents. From the round-the-clock care to financial woes, the problems seem never ending.

“When you’ve been through such a journey, there is no end to it, so there is no finish line. It’s still ongoing, and it will keep going for … I don’t dare to think,” Olivia added.

Olivia, Oscar and Jamie at Christmas 2020. (Photo: Family)

It could be a simple thing as a viral infection, or Oscar falling over, and the stress builds up over time, she explained.

Olivia has started playing netball one night a week, but even that is sometimes difficult for her.

“You feel like you’re escaping and you’re not facing (up to it), and for me … I try to face reality, understand it and then adapt from it, so you can prioritise,” she said.

“Some days it might be a different way of coping and other days, it is the opposite. It’s quite hard, because we are in the midst of it, and we’re just babies in learning how to cope.”

Being away from Oscar, even for a short while, can be difficult for his parents. While the baby steps he is taking are growing into bigger steps, as Olivia described them, there are still many hurdles in front of him.

Oscar on his seventh birthday. (Photo: Family)

She finds solace in helping other families who are in similar situations as Oscar’s.

“He has been a huge inspiration to other children and lots of other families,” Olivia said.

“(Some of these) children are just fighting their own demons and just trying to pull through, and it’s difficult - for them and their parents.”

They have received messages from different families who have gone through similar journeys as Oscar’s and some of them have not seen the same outcomes.

But watching Oscar’s daily fights to do the seemingly simple things is his parents’ “biggest inspiration”.

“It is not just that he is cancer free. It’s that he just does not give up. There’s nothing that you could come across that would stop him from prospering.”

On Christmas Day 2019, Oscar was preparing to undergo an experimental treatment. A year on, he's at home celebrating with his family. (Photo: Family)

GOING BACK TO SINGAPORE

COVID-19 has made it difficult for Oscar and his family to travel, but they are “missing” the team from NUH “so much”. Olivia said the family is in contact with the medical team at the hospital.

“We can’t wait to come back (to Singapore),” Olivia added.

“Our heart and soul went into Singapore, and the team at NUH and the professors there. You know, for us, that’s our security now … Singapore, for us, for Oscar, is the biggest most important security (net) for him.

“We really need to go back as soon as we can. We’re hoping that it won’t be too long away … we can’t wait to explore it, and do it properly.”

Associate Professor Allen Yeoh, who was part of the NUH team who treated Oscar when he was in Singapore, told CNA that they are continuing to keep in close contact with his family.

"We have been monitoring Oscar’s progress since his CAR-T cell therapy at (NUH), and are greatly heartened to see that he is doing well following treatment," said Assoc Prof Yeoh, who is the head and senior consultant of the Division of Paediatric Haematology and Oncology at NUH.

READ: British boy fighting rare cancer is discharged after coming to Singapore for experimental treatment

Oscar goes home after treatment in Singapore (June 2020):

Olivia is under no illusion of the fight that lies in front of her and her family. 

“I never want anybody to go through what we’ve been through,” she said.

“It really hurts, and you have to dig deep, but for … myself, it helps (me) find purpose in life. It helps you see things from a totally different perspective.

“Oscar … looking at my own child, my own son, every single day is a reminder that this is my life. This is my meaning, this is what I’m here for. That’s what keeps us going.”

Source: CNA/mi

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