Helping E, NPC (nasopharyngeal cancer) patient

E is a 15 year-old (Indonesian Chinese boy) npc patient and the cancer has spread to his bones He was introduced to the NPC support during the Sentosa outing on Mar 23 by LO, the new leader of TRC since HH's passing.

WC is an active member of NOC support group and this is her email on her first visit to see him :
"I saw E on 15 March for the first time. His condition was very bad. He could not move his right side body due to pain on the bones. He was admitted (to Gleneagles Hospital) that night. 16 March, he started on RT on the bones. He was discharged on 26 March. During this period, he was given RT on the NPC to control his nose bleeding."

E's condition according to WC :

"K (E's mum) showed me E's medical reports last night. E was diagnosed with stage 3 NPC by Dr S in Sep 2009. Because he is a junior, so he had chemo in KK hospital. 4 cycles of chemo, cisplatin + 5FU + 3 other drugs. The report stated tumour remained unchanged after chemo. That means, he did not respond well to chemo. At the end of chemo in Dec, his cancer spread to bone. He was scheduled to start his RT 33 rounds in NCC from 5 Jan. E read about Chemo and RT in the internet and decided to stop treatment after 7 rounds of RT. His mother went along with his wish. She also felt that he should be treated for his bone
cancer spread instead of just doing RT for his NPC."

"Having stopped RT and CT, she brought E back to Indonesia and saw TCM who guaranteed her 99% of cure. After one month, there was not much improvement. In Feb 2010, she brought E to Gleneagles Hospital to see Dr KW for a second opinion. The cancer is spreading fast to the bones, and he is having pain. He did chemo."

WC's email on 22 Mar :
"I visited E, the 15 year old boy in Gleneagle last sat and sun. I made him vege/fruit juice and also potato + cauliflower puree. He ate it. I was so glad. I taught the mother K to make the puree. I make a portion of the vege/fruit juice today, and my colleague will bring it to him when she knocks off at 3. 30 pm."

"E started on radiation on his bones from 16 Mar for 12 times at Gleneagle. He is bedridden and on morphine to control his pain."

"I spoke to K last sat (20Mar). She told me an NPC spread to bone survivor visited E. His name is RS. I was delighted. K showed me the recipe he gave. Almost the same as mine, except that he is more "guru" than me. "

I called R on sat night. He was diagnosed in March 2005, stage 1, and hence had RT only. In 2007, he had a relapse, stage 1. As chemo is for stage 2 and above, he was left with the option of surgery, since he could not tahan another round of RT. In 2008, his cancer spread to the bones. Quite a number of location is affected, and doctors pronounced no cure for him. He made the doctor wrote a statement on that. He is now on palliative care. He searched and reflected on the cause of cancer, and decided to change his diet and lifestyle. He is now on oral chemo everyday for life. He is now a volunteer in 365 cancer society. He told me this is founded by Billly Wang. When I checked this with J (CCK), who is also a volunteer there, she said 365 is trying to break clean from Billy Wang, cos the latter started his own group."

"Anyway, R says he is the key person for NPC contact in 365. I asked if he has heard of the NPC support group, he said NO. I asked if he would like to bring his patients to join our support group, he said he would have to refer to his society. I stopped there. I did not want this issue to turn political. We are not trying to grab his patients. We want to keep clean of political and commercial interests. On a gentleman spirit, I invited him to join our support group meeting. He can see for himself if he would like to expose his patients under his care to have more friends."

"R sounded enthusiastic to speak to me. I told him I was very happy to know there is a survivor of such case, which doctors have given up hope. He sounded energetic, talking and talking for almost one hour. From what he said, I think he is a sensible counsellor. He calls his remedy - "diet therapy" for cancer patients. Almost the same as what J, and some of us are doing."

"We hope to set up a meeting with R and B, who did the face surgery in TTSH. These two have some similarities in their condition, and I hope R's case on daily oral chemo may bring some light for B."

WC's email on 25 March :

"Yesterday (24 Mar - Wednesday), I visited E at Gleneagles. His condition improved a lot. He could even turned his body and rest on his right arm! How amazing! He could talk and lift both hands. But he said his hands were weak. I told him to exercise his fingers and hands to regain the energy."

"Last sunday (21 Mar), he was in great pain and could not move his body. He asked, how long is this going to be? When is this going to end? Yes, I asked those same questions 4.5 years ago."

"I could only help in his diet, but not his pain."

"I could not remember whether it was sunday night or monday. I flipped the newspaper or magazine, and the words "chakra healing" flashed across. I thought of (a friend) and immediately I asked for her help. She conveyed to her senior, J and eventually, somebody (J himself) from her chakra healing group went to help E. K was so grateful. That was monday."

I could not remember whether WC contacted me on Sunday (21 Mar) or Monday (22 Mar), asking if chakra adjustment could help relieve pain. I said it was possible and got in touch with J, volunteer coordinator and a senior, of the chakra adjustment volunteer group, and he went down on Monday to help E.

As of 1st April, if I am not mistaken, E has received at least 5 sessions of chakra adjustment.

E is only 15 and his condition spurred all of us to rally round to help him and his mother with whatever knowledge and experience we have. He is very weak and fragile and very thin and could not sit up for long.

WC and her NPC support group are taking care of his diet and nutrition, and members of the chakra adjustment volunteer group are providing him therapy healing.

We are doing our best to help him in his progress, and are not taking chances and anything that will hamper his progress or that will worsen his condition, we tried our best to remove it. Like telling his father, through his mum that he should not smoke in the house. We also took issue with his bed. That's right fengshui.

His bedhead was facing a window and the other end was facing the door. All I know is that it is an energy-draining position, but my friend said it is a 'coffin' position. So my friend roped in her friend, who has fengshui knowledge for help. His mum has been advised to shift his bed and certain pieces of furniture in the house.

Part of WC's email on 30 Mar :
"K kept asking me, why his condition did not imrpove, despite heeding the doctor's advice. One lady at Gleneagles commented that K delayed the treatment. So K felt so guilty and kept asking me. I could not answer her. But I told her to ignore what that lady said, because she did not know what E has gone thru. K says she will not give up hope. The report just says, progression of spread, to be monitored. I know the agony - the decision making, going thru the pains, and now seeing worse condition, the disappointment, despair, helplessness, etc. I could only console her that there is no absolute right or wrong. We just have to move on. Since the medical option is not working, we will look to food therapy, which I think R can help. The Chakra healing will help to relieve the symptoms and give him some comfort, but she will have to look for some concrete ways to counter the fast growing cancer spread. I offer no solution. I was at a loss. The responsibility is so heavy. I was not sure if I had done the right thing. When I gave her the juice, I let the mother feed him. I was glad to see he can accept my food. I think this is important. I don't dare to feed him in case anything goes wrong. As I went home on sunday night, I also asked myself if I'm doing the right thing. And I felt so stressed up, being so helpless."

When a child becomes so sick, his doctor has rated his case as 'no cure', usually it is the parents, especially the mother, who is suffering more. The decisions she has to make on his behalf, hoping that every single one she made is right, and the overload of information she has to handle are enough to floor anybody. She can only stand by, watching her son suffer, but unable to share in his suffering and pain. It is a parent's nightmare.

With our combined efforts, we hope that E continues to make progress.

Today, 1 Apr, E has gone for a check-up but has to be warded for blood transfusion as his bloodcount was very low.