The following article appeared in a January 2010 edition of The New Paper :
Just 5 minutes on stage gave him strength to fight cancer
Student endures to fulfil dream of performing solo in concert
Egan Supharta Mercubuwono has only one thing on his New Year's to-do list: Live. Last Sunday, he realised his dream of playing a solo piece on his flute before a packed audience at the Victoria Concert Hall. Now, he wants merely to make it to school when it reopens on Monday. Unlike most others, Egan will have to take it one day at a time this year. The reason: The Yuying Secondary School student was diagnosed with stage three nose cancer in September. At the concert, with eyes shut in deep concentration, Egan's fingers danced over his instrument at his school's annual concert. "It is very painful to play the flute as my neck aches," said Egan. "I get headaches. "But when I play, it takes the pain away from my mind. It helps me forget my problems."
This article was written by Hedy Khoo and appeared in The New Paper of 20 Apr 2010 (I could not upload the article and am reproducing it here.):
He lived his life to the fullest : Mum
Flutist student who pledged to live through the year dies of cancer
He made a New Year resolution that he was going to live through the year. But that was not to be.
Despite his determination to win his battle against nose cancer, 16-year-old Egan Supharta Mercubuwono succumbed to the disease on Sunday.
The New Paper had published a report on the Yuying Secondary School student on Jan 1 this year for his performance of a flute solo during a school band concert at the Victoria Concert Hall.
He did that even though he was undergoing treatment for stage three nose cancer, which he was diagnosed with last September.
Speaking to The New Paper at his wake yesterday, his mother. Madam Khanti Mercubuwono, 42, an accounts assistant, said: "Even though my son's life was very short, he lived it to the fullest and refused to give up even in the face of death."
Egan's parents had teken him to Malacca on April 11 to seek treatment.
Said Madam Mercubuwono: "He had not been feeling well. Two days ago, on Sunday afternoon, we decided to bring him back to Singapore, but he passed away in the ambulance on the way back."
Madam Mercubuwono said the family held a simple Christian prayer ceremony on Sunday evening.
She said they will be leavingtoday for Jakarta for the burial.
His family moved there from Jakarta in 2006 as his mother wanted him to study here.
Almost a hundred of his schoolmates from Yuying Secondary School turned up in the pouring rain yesterday afternoon to bid a last farewell to him at the funeral parlour at Sin Ming Drive.
Among hem were members of the school band, of which Egan had been the drum major.
Many cried as they paid their last respects at his casket. But there were also smiles as they recalled their fond memories of Egan.
A close firend, Tan Guan Shin, 15, said that his friend, who could draw and learnt to play the guitar on his own, had wanted to be an artist or musician.
Recalling their last time together two weeks ago, he said: "The whole band visited him at his home. We had an assessment performance the next day at the Singapore Youth Festival.
"He made us promise him to get a distinction grade. I am glad we managed to live up to our promise."
He cheered us up
The youth added that he also admired Egan for his positive attitude.
He added: "He even cheered us up with jokes. He never once complained about his illness."
True to form, in his last Facebook status updates on March 30, Egan had written: "Impossible is nothing."
Other schoolmates considered Egan a natural leader and livewire.
Said close friend Amanda Ang, 15: "Everyone wanted to be friends with him. We liked him because he loved to joke. But we also respected him as a leader."
He was mischievous too, said schoolmate Kelly Wong, 15.
"He liked to stick his leg out and cause us to trip, but we never could get angry with him because he would win us over with his smile," she said.
Among their fondest memories of him was during a class in January.
Recalled Jasmine Koh, 16: " We each had to introduce ourselves to our new English teacher by saying our name and our CCA.
"When it was Egan's turn, he said, 'My name is Egan and I am a cancer survivor'."
Madam Mercubuwono said she had not known how popular her son had been at school until he became sick with cancer.
Touched by the many schoolmates who visited him throughout his illness, she said: "It was everyone's encouragement which gave us the strength."
Her son's death will be hard to take as he always made the home lively with his chats and laughter.
She added: "He taught me what strength is and to cherish life.
"I hope that anyone who has to battle with cancer will have his same spirit, to never give up - until the very end."
18 Apr, Sun, 9.30pm - Sms from K forwarded to me by WC : "He is much better now. No more pain. He is in Father's house. Happy. Thanks for helping him."
I was still staring at the sms and thinking, 'does this mean that he is gone', and yet at the same time half-hoping that I had got it wrong, when WC called. She shared my thoughts about the sms. We decided that WC should contact K.
WC called me again. It had been confirmed. He was gone, passed away in the ambulance while on the way back to Singapore.
E's family arranged for a one day wake in Singapore for friends and schoolmates to say their 'goodbyes' before they brought him home to Jakarta for burial.
WC, 2 CSX volunteers and myself went to his wake on Monday, 19 Apr.
From his mum, we learnt that he had been warded in a Malacca hospital for 3 days where he had blood transfusion. KKH had earlier refused to give him further blood transfusion and Gleneagles had said there was no necessity for one.
On Sunday, 18 Apr, his parents were bringing him back to Singapore, but he passed away sometime after the departure from Malacca and before they even reached the Causeway.
We also learnt that it was the same friend who had reccommended the bio-...(?) treatment to him on Thursday, 15 Apr, and who had brought him and his parents to Malacca for TCM treatment on Sunday, 11 Apr. E had stayed in Malacca for 1 week, and we had no idea who the TCM was, his address as K had depended on this friend to lead the way. Neither do we know what sort of treatment he gave to E.
From what we undersood, this friend was one that K and E had met recently while at a hospital.
She might have meant well with her intentions to help E recover, but one must remember that there is a limit to how far one can go or how much one can do to help a cancer patient, especially one in E's condition, which was very advanced and had metastasized to the bones.
Thursday, 22 April 2010
Saturday, 17 April 2010
Helping E, NPC patient (continued)
I include here, in chronological order, E's condition from 4 to 13 April as reported by volunteers from CSX (Chang Shen Xue - 长生学) and WC, an NPC support group member.
Apr 4, Sun - Sms from WC : E is in pain. K thinks he can’t go in a taxi.
(Note : I had actually planned for E to receive chakra healing therapy at Kim Mui Huay Kuan from 4 to 8 April, 5 continuous days of therapy, as our teachers would be present. I had felt that with many years of experience each, it would be a good opportunity for E to make progress.)
After much persuasion from WC, K (E's mum) agreed to bring him for chakra adjustment therapy.
Apr 6, Tue -
4 CSX teachers from Taiwan + a couple of volunteers
Mr W, our principal teacher, gave him therapy as well while he was being transferred to the ambulance to be sent home.
More than an hour of chakra adjustment therapy
K brought E to Kim Mui Huay Kuan where CSX was conducting training for new students.
E was in a lot of pain and we had much trouble transferring him from the front passenger seat of the taxi to his wheelchair.
His skin had a tinge of yellow as compared to 24 Mar when he was at Gleneagles. He also had red spots on his head (rashes-?).
K mentioned that E started having fever in the morning.
E had to be treated while seated on his wheelchair.
2 CSX teachers from Taiwan attended to him.
Initially, E was very uncomfortable and kept asking to be sent home. 2 more CSX teachers from Taiwan were requested to attend to him and they were joined by a couple of CSX volunteers.
His condition stabilised and he fell asleep on the wheelchair. After more than an hour of therapy, he was sent home by ambulance.
Sms from WC : K said doc gave E 2 weeks.
Apr 7, Wed -
CSX volunteers : 3
About 2 hours of chakra adjustment therapy
They reported that he was fine.
Sms fr WC : TCM Dr Long saw E. Said E has a clear mind, his heart and lungs are good, so he still has a chance.
Sms fr WC : E sat on wheelchair. He could carry a packet of ensure milk in his hands and drink.
Sms fr WC : E wants to do chakra adjustment therapy although he could not explain why. Said his fever was brought down by chakra adjustment.
Apr 8, Thu -
CSX volunteers : 2 in the morning and 2 in the afternoon
About 2 hours of chakra adjustment therapy in the morning and more than 1 hour in the afternoon.
When the volunteers arrived in the morning, E was already seated on the wheelchair, and fed himself breakfast at the table. He could wheel himself around on his wheelchair.
Chakra adjustment therapy was done on him while he was on the wheelchair and he kept dozing off. After about an hour on the wheelchair, he awoke and requested to be transferred to bed, where he soon fell asleep while the therapy progressed.
The therapy session was about to be wrapped up when one of E's family friends came and K told the volunteers that they were bringing E for some bio-----(?) treatment.
E was fine throughout and did not complain of pain.
The afternoon volunteers said E reached home after 3pm. They did chakra adjustment for him while he was lying in bed and did not notice anything unusual about him.
Sms fr WC : E is in good spirits today.
Apr 9, Fri -
CSX volunteers : 2 started at 9.30am and were to be relieved by another pair at 11am.
The first pair started at 9.30am and the second pair was requested to go over earlier at 10+am. The whole team continued till about 12+.
When the first pair arrived, E was lying in bed and did not seem to be in good spirits.
He had a big red patch on his left hip.
Throughout, he could not fall into deep sleep and constantly complained of pain on his right ribcage and especially on his right lower leg and sole of his right foot. K switched on the aircon as E was perspiring and also she was concerned about the red spots on his head.
The second pair was scheduled to take over at about 11am, but had been requested to go over earlier to help with the other chakra points, spinal column and vital organ as E was in a lot of pain and the first pair had to help E manage his pain.
E’s pain was so intense that he even felt the pain when the energy flowed through him during the chakra adjustment. Also, his heart was racing and he was breathless.
The volunteers stopped at his request, and he was really down.
He had not complained of pain the day before, and he said that the pain was very mild the day before, but it was very severe then, about the same level as on 6 Apr.
He said it was because of the wheelchair, probably meaning the transfer between wheelchair and car. K requested for break from chakra adjustment therapy on Saturday and Sunday.
Sms fr WC : E is ok and in good spirits. He has settled down. He knew the pain is due to moving him on Thursday. Rash on head subsided.
Sms fr K : E is ok now, but still in pain.
K had requested for a break from chakra adjustment therapy for Saturday and Sunday.
Apr 11, Sun -
Sms fr K fwded by WC : K had brought E to Malacca today for TCM treatment as she said that E was in a lot of pain these past few days, and didn’t really want to eat.
Apr 13, Tue
Sms fr K : E’s pain has improved slightly and he does not need much pain killer. However, his red blood cell and platelet count is still quite low.
I understood that he had gone for blood transfusion while in Malacca.
Reflection :
Here are some of my thoughts on E's case.
1. As a cancer patient myself, I must admit that I failed to comprehend the magnitude of E's pain. As I was not with E all the time, I had to depend on K to provide me with updated and detailed information of his condition. However, I understand K's desperation and state of stress and confusion her mind is in, so it would be reasonable to assume that K may not have been able to convey the necessary information concerning his mobility and transfers in relation to his pain level.
2. It did not occur to me then, that the coordinator might have a list of volunteers that we could call on for help. It was a coincidence that the coordinator was also involved in organising the April 3 - 8 training class as well as helping young cancer patients in KKH. Initially, there was not enough volunteers to provide E with daily therapy.
With my limited information and resources, I had then requested K to bring E down to the adjustment centre in Kg Senang on 31 Mar, Wednesday, and subsequently to the training centre at Kim Mui Huay Kuan on 4 - 8 April. This request was made as I felt E would have a better chance where we have more experienced volunteers at Kg Senang, and at the training centre, where our teachers are available. I had also hope that E could have received 5 straight days of therapy from the teachers which would be a great benefit to him. For transportation, I had obtained information on a private ambulance that provided 2-way transfer at a very reasonable rate.
However, K only managed to bring E down on 6 April after much persuasion from WC. Now, I realised that it could be K knew it would not be easy to move E by car, but she did not specifically mention this problem to me. In fact, she told me that E could sit in a car with the seat reclined.
Nevertheless, even with whatever information and resources I had then, I felt and still feel that WC and I have done our best, especially WC, and that whatever decisions we have made or course of action we have chosen, they were deemed to be the best at that time and taken with E's interest at heart.
From E's case, every obstacle we came across and every step we took is knowledge and experience gained.
Apr 4, Sun - Sms from WC : E is in pain. K thinks he can’t go in a taxi.
(Note : I had actually planned for E to receive chakra healing therapy at Kim Mui Huay Kuan from 4 to 8 April, 5 continuous days of therapy, as our teachers would be present. I had felt that with many years of experience each, it would be a good opportunity for E to make progress.)
After much persuasion from WC, K (E's mum) agreed to bring him for chakra adjustment therapy.
Apr 6, Tue -
4 CSX teachers from Taiwan + a couple of volunteers
Mr W, our principal teacher, gave him therapy as well while he was being transferred to the ambulance to be sent home.
More than an hour of chakra adjustment therapy
K brought E to Kim Mui Huay Kuan where CSX was conducting training for new students.
E was in a lot of pain and we had much trouble transferring him from the front passenger seat of the taxi to his wheelchair.
His skin had a tinge of yellow as compared to 24 Mar when he was at Gleneagles. He also had red spots on his head (rashes-?).
K mentioned that E started having fever in the morning.
E had to be treated while seated on his wheelchair.
2 CSX teachers from Taiwan attended to him.
Initially, E was very uncomfortable and kept asking to be sent home. 2 more CSX teachers from Taiwan were requested to attend to him and they were joined by a couple of CSX volunteers.
His condition stabilised and he fell asleep on the wheelchair. After more than an hour of therapy, he was sent home by ambulance.
Sms from WC : K said doc gave E 2 weeks.
Apr 7, Wed -
CSX volunteers : 3
About 2 hours of chakra adjustment therapy
They reported that he was fine.
Sms fr WC : TCM Dr Long saw E. Said E has a clear mind, his heart and lungs are good, so he still has a chance.
Sms fr WC : E sat on wheelchair. He could carry a packet of ensure milk in his hands and drink.
Sms fr WC : E wants to do chakra adjustment therapy although he could not explain why. Said his fever was brought down by chakra adjustment.
Apr 8, Thu -
CSX volunteers : 2 in the morning and 2 in the afternoon
About 2 hours of chakra adjustment therapy in the morning and more than 1 hour in the afternoon.
When the volunteers arrived in the morning, E was already seated on the wheelchair, and fed himself breakfast at the table. He could wheel himself around on his wheelchair.
Chakra adjustment therapy was done on him while he was on the wheelchair and he kept dozing off. After about an hour on the wheelchair, he awoke and requested to be transferred to bed, where he soon fell asleep while the therapy progressed.
The therapy session was about to be wrapped up when one of E's family friends came and K told the volunteers that they were bringing E for some bio-----(?) treatment.
E was fine throughout and did not complain of pain.
The afternoon volunteers said E reached home after 3pm. They did chakra adjustment for him while he was lying in bed and did not notice anything unusual about him.
Sms fr WC : E is in good spirits today.
Apr 9, Fri -
CSX volunteers : 2 started at 9.30am and were to be relieved by another pair at 11am.
The first pair started at 9.30am and the second pair was requested to go over earlier at 10+am. The whole team continued till about 12+.
When the first pair arrived, E was lying in bed and did not seem to be in good spirits.
He had a big red patch on his left hip.
Throughout, he could not fall into deep sleep and constantly complained of pain on his right ribcage and especially on his right lower leg and sole of his right foot. K switched on the aircon as E was perspiring and also she was concerned about the red spots on his head.
The second pair was scheduled to take over at about 11am, but had been requested to go over earlier to help with the other chakra points, spinal column and vital organ as E was in a lot of pain and the first pair had to help E manage his pain.
E’s pain was so intense that he even felt the pain when the energy flowed through him during the chakra adjustment. Also, his heart was racing and he was breathless.
The volunteers stopped at his request, and he was really down.
He had not complained of pain the day before, and he said that the pain was very mild the day before, but it was very severe then, about the same level as on 6 Apr.
He said it was because of the wheelchair, probably meaning the transfer between wheelchair and car. K requested for break from chakra adjustment therapy on Saturday and Sunday.
Sms fr WC : E is ok and in good spirits. He has settled down. He knew the pain is due to moving him on Thursday. Rash on head subsided.
Sms fr K : E is ok now, but still in pain.
K had requested for a break from chakra adjustment therapy for Saturday and Sunday.
Apr 11, Sun -
Sms fr K fwded by WC : K had brought E to Malacca today for TCM treatment as she said that E was in a lot of pain these past few days, and didn’t really want to eat.
Apr 13, Tue
Sms fr K : E’s pain has improved slightly and he does not need much pain killer. However, his red blood cell and platelet count is still quite low.
I understood that he had gone for blood transfusion while in Malacca.
Reflection :
Here are some of my thoughts on E's case.
1. As a cancer patient myself, I must admit that I failed to comprehend the magnitude of E's pain. As I was not with E all the time, I had to depend on K to provide me with updated and detailed information of his condition. However, I understand K's desperation and state of stress and confusion her mind is in, so it would be reasonable to assume that K may not have been able to convey the necessary information concerning his mobility and transfers in relation to his pain level.
2. It did not occur to me then, that the coordinator might have a list of volunteers that we could call on for help. It was a coincidence that the coordinator was also involved in organising the April 3 - 8 training class as well as helping young cancer patients in KKH. Initially, there was not enough volunteers to provide E with daily therapy.
With my limited information and resources, I had then requested K to bring E down to the adjustment centre in Kg Senang on 31 Mar, Wednesday, and subsequently to the training centre at Kim Mui Huay Kuan on 4 - 8 April. This request was made as I felt E would have a better chance where we have more experienced volunteers at Kg Senang, and at the training centre, where our teachers are available. I had also hope that E could have received 5 straight days of therapy from the teachers which would be a great benefit to him. For transportation, I had obtained information on a private ambulance that provided 2-way transfer at a very reasonable rate.
However, K only managed to bring E down on 6 April after much persuasion from WC. Now, I realised that it could be K knew it would not be easy to move E by car, but she did not specifically mention this problem to me. In fact, she told me that E could sit in a car with the seat reclined.
Nevertheless, even with whatever information and resources I had then, I felt and still feel that WC and I have done our best, especially WC, and that whatever decisions we have made or course of action we have chosen, they were deemed to be the best at that time and taken with E's interest at heart.
From E's case, every obstacle we came across and every step we took is knowledge and experience gained.
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