'Gave me a second life': How Singapore doctors saved this boy from rare cancer with experimental treatment

SINGAPORE: “I think … I am going to die soon.”

That was the thought running through 10-year-old Viet Tai’s mind after his cancer failed to respond to chemotherapy.

Doctors in Hanoi, where Viet Tai is from, had given up hope. Diagnosed with a rare type of acute lymphoblastic leukaemia, treatments in Vietnam failed to stop or even slow the disease.

But when his parents heard how treatment in Singapore might give their son a fighting chance, they sold their house and other assets and made the leap.

It was but a hope, but as it turned out, Viet Tai became the first patient in the world to undergo a new experimental treatment at the National University Hospital (NUH).

With no previous patient, it was hard to know if it would work.

It saved Viet Tai’s life.

PAIN SPREADING ALL OVER

Viet Tai was an active child. He loved playing football and going on bicycle rides in his hometown of Hanoi.

But when he was 10, he noticed a sharp pain in his little finger. He shook it off, thinking it was a small injury from an active lifestyle.

In a short time, the pain spread – throughout his hand, up onto his elbows and shoulders and then into his legs.

The doctors in Vietnam initially thought it was arthritis.

“They gave me treatment for arthritis, but after several months, I was not getting better and the pain was getting worse. It spread all over my knees, my arms, other joints,” he said.

“At the first hospital, they concluded I was not getting any better, so my father moved me to another hospital … they also concluded I had arthritis.

“After doing several tests, like a bone marrow test, they discovered I had blood cancer.”

The diagnosis was not good – Viet Tai had acute lymphoblastic leukaemia.

It is a common blood cancer in children. About 30 per cent of all newly diagnosed cancer in children is acute lymphoblastic leukaemia. The cure rate for children is high.

But as Viet Tai was about to find out, this was not ordinary leukaemia.

His parents tried to hide the truth from their son, hoping to keep his spirits up as he underwent gruelling chemotherapy.

It did not work. The cancer did not respond to chemotherapy, and the boy’s condition was worsening.

Viet Tai said: “It was so hot in my veins (during the chemotherapy). My vein broke and it started to hurt … I did a bone marrow test and after a week I felt so (much) pain in my spine.

“I couldn’t even sit up. I had to lie down all the time.”

He added: “I think I was quite desperate. I thought cancer was incurable and I am going to die soon.”

Searching for a possible cure, a family friend in Singapore told Viet Tai’s parents that his chances of survival would be higher here.

His parents sold their home and assets – gifts from their parents – and Viet Tai and his mother flew to Singapore. He was admitted to NUH for treatment.

In Singapore, he was found to have an immature and more resistant form of T-cell acute lymphoblastic leukaemia, known as early T-cell precursor ALL.

He again underwent intensive chemotherapy, including newer second-line chemotherapy.

The cancer again did not respond. He developed multiple infections and developed blood clots in his legs.

In time, he could no longer walk and had to use a wheelchair.

The prognosis for such cancer that is resistant to treatment is usually bad – there is a less than 10 per cent chance of survival.

A NEW TREATMENT

By this time, the doctors in Singapore had already been developing an experimental treatment.

It is a cell therapy in which a patient’s T-cells – a type of white blood cell that is part of the immune system – are reprogrammed to target the cancer, and then given back to the patient.

This specific treatment, targeting CD7 on leukaemia cells, had never been used on anyone before and Viet Tai would be the first in the world to undergo it.

After much deliberation by the hospital, including with the ethics board and between Viet Tai’s parents and clinical lead Professor Allen Yeoh, Viet Tai became the first patient to undergo this experimental treatment.

“When they transplanted the T-cells into my body … I thought it was like some normal liquid that they want in my body,” said Viet Tai.

“I was not worried at all. I was confused as to why all of them – my parents and the doctors – were surrounding me.”

The concern, being the very first patient, was how his body would react to the treatment.

Prof Yeoh said there was a similar therapy for a more common type of acute lymphoblastic leukaemia, and that this was an “educated guess”.

“We know that immunotherapy, the way that we use a patient’s immune system to fight cancer, would be possible, and it has yielded some results,” he explained.

“So we are going in, not blind, but with a good educated guess.

“The only problem is that now we are killing a very important part of his immune system, which is the T immune system.”

There are babies who are born without T-cells and they die of infection, he explained.

The worry for Viet Tai was that the treatment might make him a “bubble boy” – a child who could not be exposed to the outside world.

ISOLATION

For a month, the boy was isolated in a quiet, clean room in NUH. He had to be isolated because the treatment was expected to destroy his immune system and leave him severely weakened.

“The nurses, the doctors, everyone came together, we prepared for a bubble boy in Viet Tai,” explained Prof Yeoh.

“So we had to autoclave all his pyjamas, all his bed sheets, all his towels, everything has to be clean.

“We have to see him gowned, masked and everything … he doesn’t get to see people, but just masked faces in and out during that period.”

An autoclave machine uses steam at pressure to kill harmful bacteria, viruses, fungi and spores on items.

That month was excruciating for his mother, Madam Nguyen Thi Kieu Anh, who could not comfort her son and did not know if the treatment would work.

Coupled with being away from her usual support network and struggling with the language barrier, Viet Tai’s mum could only watch as her son underwent the treatment.

“As a mother, seeing my boy having to go through the different kinds of chemotherapy, and he had to suffer the pain … I was so heartbroken. I felt useless – like I couldn’t help him,” Mdm Nguyen told CNA through a translator.

There were also practical concerns. Given that Viet Tai is not Singaporean, he was not able to claim any subsidies and was a private patient at the hospital.

Staying for potentially months in hospital – especially a month in a specialised isolation ward – meant the bills started to rack up.

Members of the public stepped in. A give.asia page was set up and donations poured in. With donations ranging from S$1 to S$5,000, mostly from strangers, they raised more than S$115,000 for the family.

Shielded from the rest of the world, Viet Tai thrived. He started recovering, raising hopes that this experimental treatment was working.

In a month, Viet Tai went from the brink of death to being in remission for the first time in eight months.

Now, more than four-and-a-half years later, he remains cancer-free.

SAVED MY LIFE

Cancer patients who undergo chemotherapy and get better normally undergo a bone marrow transplant.

However, because of the COVID-19 pandemic, all elective surgeries were called off. There was also the concern that Viet Tai might catch COVID-19 and die of it, given his low immunity.

Despite not getting a bone marrow transplant, he did not fall sick post-treatment.

“We thought we were in for a big bang of the whole system, but interestingly, he didn’t fall that sick,” said Prof Yeoh.

“A lot of precautions that we took turned out to be not necessary, because somehow the CAR-T cells were able to eliminate the T-cells, but yet the T-cells came back in another form, able to still protect him as well.”

Viet Tai also reacted well to the COVID-19 vaccine, and his body started to create antibodies to the virus.

“He lost his immune system, but he gradually regained it,” said Prof Yeoh.

The miracle of Viet Tai was not confined to one boy – soon, a second patient underwent this treatment.

CNA reported in January 2020 how Oscar Saxelby-Lee had only months to live when he arrived at NUH’s doorstep for this same treatment. He remains in remission.

NEW DREAMS

Unable to fly home due to COVID-19 measures, Viet Tai enrolled in school in Singapore.

After months in a wheelchair and isolation, his strength came back and he started to walk again, then kick a football again, then cycle again.

He also started learning English and making new friends at school.

“I feel very happy and very grateful to Prof Yeoh and the team at NUH,” said his mother.

“I appreciate very much the people who gave (donations) to Viet Tai.”

Today, 15-year-old Viet Tai wears an easy smile and speaks English well.

Now studying for his high school entrance exams in Vietnam, he dreams of starting his own fashion brand when he is older.

He continues to go for long bicycle rides and play basketball with his friends, recently winning a medal with his school team.

Five years ago, none of these seemed possible.

“It was a success, just for me to live, now … (during the) treatment I have developed a determination,” he said.

“If I lacked determination, I would have (become) negative.

“Now, if I have any difficulty, I would look back at two years of my medical treatment. If I can surpass the two years of medical treatment … Any difficulty now compared to the last one (cancer) is just a little bit – I can survive anything now.”

He has developed a close friendship with the NUH staff, and thanked them for giving him “a second life”.

Prof Yeoh said: “I think most of the kids that have undergone such a big event, such a big obstacle in life, they turn out to be much better fighters.

“I think their view of life is entirely different.

“They take anything as a smaller challenge, whereas (for) most of us, everything seems to be very big.”