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At eight months, he was diagnosed with a rare type of cancer that forms in the soft tissues.
What followed was an up and down journey for Raphael Lee where the shadow of his cancer never left him, even after he went into remission.
When I was in 2nd grade, the cancer came back strongly and, this time, it refused to go away.
As he plunged into battle against a feared foe few can defeat, at one point sacrificing part of his left arm, one thing flashed: Raphael was determined to move on alive.
One of his ambitions was to complete his Elementary School Completion Exam (PSLE), which he duly did last month.
But, depending on fate, Raphael lost his battle just 12 days before he could find out that he had scored A’s in his favorite math and science subjects and B’s in English and mother tongue with a score of 220, a remarkable achievement for someone who had they miss school often due to medical problems.
Had he lived, the Alexandra Elementary School student would have been among 39,995 students who collected PSLE scores yesterday.
His father, William Lee, 47, who compiled the results on his behalf, told The New Paper: “We asked him if he wanted to defer his PSLE and let his body recover. But he insisted that he wanted to complete his PSLE. Because he didn’t want to repeat his 6th grade in a new class.
“We gave him all kinds of ideas, but he said he should do it and he was sure he could pass the exam.”
An only child, Raphael had his first cancer outbreak as a baby when doctors found a malignant tumor on his left forearm. Diagnosed with rhabdomyosarcoma, he underwent treatment, including chemotherapy.
The cancer went into remission a year later. After about seven years, another tumor was found on his left arm that doctors diagnosed as osteosarcoma, a type of bone cancer.
In Primary 3, while Raphael was recovering from treatment to remove the tumor, a third growth was found near his wrist.
Lee, course director at St John Singapore, said: “The surgeon told us that it is almost impossible to save the arm. Raphael was reluctant, but he knew that in order to survive, he had to sacrifice (his arm).
“It was a miracle that when he woke up from his surgery, he didn’t cry for his arm. He could still wave his stump, joke with us and wanted to write a book to inspire others.”
Ms. Winnie Lee said that Raphael would also “do his rounds” to cheer on other children in his cancer room.
The 45-year-old housewife shared how she watched YouTube videos to gain skills, help her with household chores, and learn to prepare simple meals on her own.
The family’s hopes that the amputation would keep the cancer at bay were dashed when doctors found swelling in the right clavicle last year.
Last December, Raphael underwent surgery to remove his right clavicle. Earlier this year, he underwent surgery again to remove tumors from his lungs.
In August, Lee was diagnosed with colon cancer and tumors were found in his stomach and behind his liver.
Lee said: “Rafael said to his mother: ‘Why does dad have to go through cancer?’ I wanted to take my place because I had more “experience” with cancer.
“He said he knew how to deal with all the side effects of chemotherapy. I told him it was my turn and that we will go through this together as a father and son.”
In August, more tumors were found in Raphael’s lungs.
“When we told him, he burst into tears. He was afraid he wouldn’t be able to attend. We never expected his fears to come true,” Lee said.
On November 12, the boy underwent another operation to remove the tumors.
But complications arose and he was placed on life support. The cancer was also found to have spread to the blood vessels.
Mr. Lee said, “When he came out of the OR, I broke. I had tubes all over the place and it looked so delicate.”
Raphael died on November 13.
An excited Mr. Lee said, “We knew this day would come, but the events that led up to it were a shock.
“But we knew we had to let him go. He had put up a tough fight and this time we wanted him to make the decision and we will respect it.”
When Raphael sat down for PSLE, he was on targeted therapy, which led to serious side effects like diarrhea, his parents said. But he went through all the papers.
Lee said: “We were overwhelmed by his results. He did extremely well, far beyond our expectations.”
While the family is still recovering from his death, they have been overwhelmed by the myriad of good wishes and testimonials about Raphael’s positive impact on others.
Mr. Lee, who is recovering from his cancer, said: “Our life has never been quiet, there were many struggles. Sometimes, I felt like giving up, but I had to be strong for my family.”
Ms. Lee added: “For the past 12 years, my life has revolved around Raphael’s studies and his health.
“After his death, I feel like a large part of me has been removed. I’m praying to fill the void, but I know my son is now in good hands.”
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