SINGAPORE: The first try fails, and so does the second. She comes agonisingly close on the third, only to fall back in her wheelchair. Perhaps weakened by the exertion, her fourth comes up short too. But she quickly bounces back for attempt No.5: And stands, teetering, leaning on her mother briefly before successfully swiveling around and sitting down on her bed.
This was young Trinity’s first time transferring herself from wheelchair to bed – a milestone captured on video in 2013, and symbolic of her wider battle against the blood cancer known as acute lymphoid leukemia.
Mere months before, as a nine-year-old, she underwent three brain surgeries in the space of 10 days to fix complications arising from chemotherapy. The ordeal left her unable to talk or move; she was also robbed of other senses and suffered memory loss.
Fast forward to the present and she is a healthy 13-year-old armed with a radiant smile, ready laugh and positive glow about her. With her PSLE completed, Trinity already has an eye on secondary school and beyond, to dreams of a career as a singer-songwriter – who beatboxes to boot.
The question of how she got here elicits a lengthy pause. “Before, I felt like it was useless and pointless, that there was nothing I could do, that there wasn’t a way,” she muses. “I eventually accepted my condition, but that didn’t mean I couldn’t do something about it.”
“I just didn’t want to give up so easily.”
Trinity (far right) with her siblings in 2010 (Photo: Esther Melanie Dass)
IN THE MIDDLE OF THE NIGHT, SHE’D START CRYING OR SHOUTING
It all began with frequent fevers in early 2013, said Trinity’s father Govinda Rajan, 48.
An initial blood test came back normal, but during the June school holidays Trinity grew noticeably weaker, prompting her parents to take action.
After a second blood test at the hospital, they were informed by doctors that 90 per cent of their daughter’s body was occupied by leukemia cells.
“Her lymph nodes and her heart were swelling, making her chest area bigger – I thought she was maturing early,” said Trinity’s mother Esther Melanie Dass, 44. “She also had a 10cm cyst above her pancreas.”
“The doctor said it was a slightly higher-risk cancer, still curable, but they would have to start chemotherapy immediately.”
The following month of treatment was a difficult time surmounted only by Trinity’s high tolerance for pain, said both her parents.
“When the doctor first poked a lot of needles in my skin I cried very loudly. It was very painful,” their daughter recounted. “But as time passed, I got used to it. I could still feel the needles but I would just try to not think about the pain.”
She also remembers doctors “inserting a long needle” in her spine, as part of a tri-monthly lumbar puncture procedure to collect fluid surrounding the brain and spinal cord. Then there was the discomfort of a portacath device implanted near her heart, to administer the chemotherapy.
Her eldest sister Tritassha, 17, sometimes stayed overnight to accompany Trinity. “It was really scary because in the middle of the night, she’d start crying or shouting. Sometimes it was nightmares, but other times it was because of the horrible pain she felt in her body.”
“But she’s a very determined girl and I think that’s why she recovered a lot.”
Govinda agreed. “She’s very strong.”
Showing her improved ability to navigate slopes and uneven ground now (Photo: Gaya Chandramohan)
I WAS VERY, VERY SCARED
Trinity would require all her hardiness for what was to come next.
She had been responding well in chemotherapy and after being discharged, the family thought things were looking up – but a month later in August she contracted a raging fever and was hospitalised again.
While visiting her daughter Esther suddenly found Trinity unable to speak or move properly and quickly alerted the doctors.
It turned out she had developed a major fungal infection, due to her immune system being affected by the chemotherapy – and the infection had already spread to her brain, causing severe bleeding.
“There was a 4cm blood clot in her brain,” said Esther.
Trinity immediately went through an emergency operation. Ten days later, after exhibiting the same symptoms, she was taken in for a second surgery. This still failed to stop the advanced clotting and she was rushed right back into the theatre.
“The doctor told us the entire left side of her brain was bleeding,” said Esther. “It was a life and death situation. We had to sign a consent form – it was that critical.”
Trinity doesn’t remember much of the surgeries – except for the sadness before each. “I cried because I was very, very scared, because my mum couldn’t always hold on to me,” she said.
But there was more to fear. After the third operation, the neurosurgeon told Trinity’s parents he had done his best to take out as many blood clots – but there were consequences.
“Basically, he said I wouldn’t be taking back a normal child,” said Esther.
She now walks independently, with the help of an ankle brace (Photo: Gaya Chandramohan)
WE SAW HER BROKEN
Doctors had to carve out a hole in Trinity’s skull and dig deep to remove the clots, in the process touching major parts of her left brain, said Esther.
The result? “She couldn’t speak, couldn’t remember our names, couldn’t remember her ABCs, there was totally no movement on her right side, she lost her senses, and it took a while for her to respond when we spoke to her,” said Govinda.
“We saw her broken, bedridden, at only nine going on 10…” his wife trailed off, holding back tears.
With their daughter’s body not responding to food, doctors had to pump out up to a litre of gastric juices every day, and were considering putting her on tubes permanently.
Trinity remembers this “very frustrating” time. “I wanted to say the words, but I didn’t know why I couldn’t say it out… I think my brain didn’t listen to me.”
But the next year or so of Trinity’s “retraining”, as her father put it, left even doctors amazed, said Esther. “What she went through… it wasn’t expected for her to recover as soon as she did.”
Within weeks Trinity slowly started to speak and recall her memory with the help of family members and therapists patiently interacting with her.
“I still remember my mum started by teaching me three words: ‘I want to’, because I sometimes need this and that,” she laughed.
Once, when Trinity was just regaining her speech, she asked Esther if this was happening to her because she was “naughty or mean, or not a good girl”.
“I quickly brought her (two elder) sisters and (younger) brother and they hugged her and kissed her and told her she didn’t do anything wrong, this just happened and she was going to get out of it,” said their mother.
Still wheelchair-bound, but trying to walk during a physiotherapy session in 2014 (Photos: Esther Melanie Dass)
NEXT THING WE KNEW… SHE’S RUNNING
Then there was the impaired mobility on her right side, which meant Trinity had to switch master hands. “At first it felt really weird, but I slowly taught myself to use my left.”
After her discharge – two months from admission – she was still wheelchair-bound and needed to be carried around and bathed, but Trinity started telling herself she was going to get up and walk, said Esther.
She would wheel herself around the house using one leg, and use the window grille to strengthen her limbs by repeatedly sitting and standing. These exercises helped her eventually progress to a walking stick, but she still wasn’t stable, her mother recalled.
“Then the therapists started training her and next thing we knew, we threw away the stick and now she’s running.”
While Esther credits her family for sticking together as well as the Children’s Cancer Foundation for providing counselling, therapy and academic assistance, above all she believes it was Trinity’s own willpower which aided in her comeback.
The family of six stood together during Trinity’s ordeal – and ended up learning a thing or two from her as well (Photo: Gaya Chandramohan)
“She’s an amazing girl,” said the proud mother. “Honestly, what we saw with our eyes… That was not something we thought could get any better.”
“The doctor said a lot of things about how she was going to be, but she didn’t just take that in and say ‘I’m going to be like that’ – if she did, I don’t think she’d be walking or running or talking or going back to school.”
Added Esther: “Every time I feel down or that I can’t do anything, I talk to her, and I get lifted. Because I know (what) she’s gone through, and she’s done it, and it motivates me.”
“We’ve learnt a lot of things from her,” said both father Govinda and eldest sister Tritassha.
I THOUGHT PEOPLE WOULDN’T TALK TO ME
After finishing intensive chemotherapy in May 2015, Trinity could finally install a titanium plate to fill the hole in her skull and the resulting depression at the side of her head.
From 2014 to 2017 (Photos: Esther Melanie Dass)
She also went back to her primary school in January 2016, after a two-year-absence. “She puts on her own bag, carries her own stuff and goes to school on her own. She wants to do things independently,” said Esther.
Initially, Trinity struggled to pass her exams. The Education Ministry helped by extending hours for her oral and written papers, and after gradually getting back in the groove she has not failed a test since.
Trinity also had other doubts of the social sort. “I thought people wouldn’t talk to me because of my condition. But there’s one girl, she accepts me for who I am. She’s nice, she always helps me… This year, I have another friend.”
Trying her hand at archery in her primary school this year (Photo: Esther Melanie Dass)
Said Esther: “She’s just glad she’s back in school and not sitting in hospital. She treasures this a lot, and is so thankful.”
There are still remnants of trying times past. Trinity sleeps in a hospital bed at home, and she recently had a second, sudden onset of seizures. Brain scans indicated improvement and she was discharged the same day – but her family is well aware she is not yet at a 100 per cent.
The hospital bed in Trinity’s room (Photo: Gaya Chandramohan)
Her right hand still cannot grip well and there remains a slight drop foot on the same side, where she dons an ankle brace when going out. But Trinity is, as always, optimistic.
“I have no more difficulty walking about,” she said, with more than a hint of resoluteness. “It’s just my hand. The last bit… it’s just my hand.”
This close to victory, all bets are on Trinity – the cancer survivor, the girl who doesn’t give up – to do something about it.
