SINGAPORE: About nine months ago, doctors in the UK told Oscar Saxelby-Lee’s parents there was nothing more they could do for him – all treatment options had been exhausted and there was only palliative care left for the little boy.
But after coming to Singapore for an experimental treatment for acute lymphoblastic leukaemia, Oscar is now almost ready to go home after receiving news on Monday (Jun 15) he has been free of cancer for almost six months.
Since he was diagnosed in December 2018, he has undergone rounds of chemotherapy, months in isolation, several stem cell transplants and a treatment in Singapore that only one other child in the world has received.
The six-year-old is set to undergo a check up later this week, and will hope to be given the all clear to fly home, his mother Olivia told CNA.
“He’s like our little miracle. It’s incredible, I couldn’t express to you the feelings we’re feeling now,” she said.
“As long as all is okay and nothing needs to happen, or nothing needs to be changed, then we should be ready to go (home), which is incredible and for Oscar, is everything.
“He’s a little boy … who wants to experience life and to most of all, be with his family. He is really excited about it."
Going home will bring its own difficulties.
“It is a huge step to go back. Singapore is our security net, and that’s why it’s so hard for us as parents to kind of pack up and go and leave,” Olivia explained.
“I say a security net for us because when we go home, if anything were to happen to Oscar … we are kind of worried because if anything did happen, where would you go?
“But to just see our family again … we are desperate just to get home to see people, just to see them.
"I know at the moment it is difficult, but just to have a cuddle, or you know, some support in front of us rather than over the phone or virtually … it’s a real hard situation to be in.”
READ: British boy fighting rare cancer is discharged after coming to Singapore for experimental treatment
COMPASSIONATE TREATMENT WAS LAST HOPE
The treatment at NUH was Oscar’s last hope. In the UK, doctors had battled for months to rid his body of the cancer.
But despite a stem cell transplant and four rounds of chemotherapy that left him very weak, the leukaemia kept coming back. Doctors told his parents there was no other treatment, and that the cancer would take his life.
The little boy from Worcester, England flew to Singapore after the family crowdfunded £500,000 (S$885,000) for a new form of treatment, in which immune cells from a patient’s blood are 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 NUH, explained previously.
Oscar started treatment on Christmas Eve last year and three weeks later, was given the best news that there were no detectable cancer cells in his body – the first major step. But there were always concerns the cancer could make a comeback, as it did previously.
“Diseases like Oscar’s are really reluctant to give up, they’re quite vile,” Olivia said. “It gets progressively nasty.”
“IT HAS BEEN RELENTLESS”
Over the last few months, Oscar has battled several conditions as a result of complications and undergone more surgeries and transplants.
He was diagnosed with both Graft versus host disease (GvHD) and Thrombotic microangiopathy (TMA) that caused him shaking spells, pain and weakness.
Brain damage also caused him problems with his mobility, and he uses a frame or needs a hand to walk.
Some of the side effects of the treatment have been “relentless”, Olivia said, adding that Oscar suffers from sickness, diarrhea, mood swings and mobility issues.
“He’s had really bad tremors since he was diagnosed with brain damage post CAR-T (treatment). But he has done amazingly well with it,” she said.
“He’s had numerous side effects. It goes from something as simple as hair loss to, you know, real damage to the body. Oscar has struggled immensely from his mobility.
“He's very frail, his legs are very weak. He is only just managing to walk without a (walking) frame.”
READ: No cancer cells detected: First major step to recovery for British boy in Singapore for experimental treatment
Oscar was discharged just days after Singapore implemented a “circuit breaker” to curb the spread of COVID-19, and he has been battling the tremors while staying in.
“He’s walking with a parent’s hand, or just about, maybe taking a couple of steps. It’s like training a toddler again, and it’s really hard.
“He's come so far but yet he's got so much to cope with on top. It's so hard.”
But for Oscar, battling to get back on his feet is not new. When he first arrived in Singapore in November last year, he was so weak from the rounds of chemotherapy and months in isolation that bruises developed on his legs when he walked.
“He manages to plow through, he's such a trooper. He really is in an inspiration to us.”
It is a “huge mountain of accomplishment” for the six-year-old boy, Olivia said. “We continue to remind him everyday of how far he’s come, and how far he will go.”
Olivia said they are "so grateful" to the medical staff at NUH for saving Oscar’s life.
“The teams have been incredibly strong with us, and they’ve supported our every decision,” she said. “They are just incredible."
She thanked Dr Frances Yeap, a consultant in paediatric oncology at the hospital and Prof Yeoh, who “actually made us come here and forget about everybody else’s opinion”.
The nurses in Ward 8B at the hospital have also been a source of support for them, Olivia said.
“They are a great team and the nurses. The consultants and the team have never doubted Oscar. We are so grateful. They have saved Oscar’s life.”