The Journey

The Opened Door A journey through life is full of obstacles. It may be just a small pothhole, or it may be an abyss. When the going gets tough, tell yourself, there is always an opened door in front waiting for you!

Chapter 1 How it all started….

“I wish nobody has to go through what we have experienced, but in life, anything can happen, and it always catches you off-guard.”

It all started one afternoon in May 2016, when my second son complained about a sharp pain at the upper thigh when he got back from school. He, being an active person attending soccer training every Saturday, a bit of pain here and there was a “norm�. It only caught our attention when such sharp pain increased in frequency from once a week to two to three times a week. Most worrying was that it came with no obvious reasons, and would just subside within minutes.

We brought him to GPs, orthopaedic surgeon, sports injury specialist, chiropractor, Chinese reflexology, you named it. A couple X-rays were taken, and none could identify the cause of the pain. When the pain attacked, he suffered in tears. Massage, medicated oil, plaster, nothing would stop it until it went away by itself. We dared not leave home without the pain killer.

After about a month of searching for the right doctor with no success at sight, I brought him to a physiotherapist out of desperation one morning. The physiotherapist diagnosed that it was a nerve related symptom. He referred us to a neurologist. It was the MRI ordered by the neurologist that revealed the presence of the tumour at his lower back. Immediately, the neurologist asked us to see another neurosurgeon. The neurosurgeon, being one of the most famous in town, told me that the only way to treat him was to undergo a complicated surgery to remove the tumour, but there would be a 60-70% risk that he would be paralyzed waist down for the rest of his life, and he might also lose his ability to control his urine and bowel due to the proximity of the tumour to the nerves. As if these were not bad enough, the tumour looked malignant! This was the first bomb shell dropped on us.

It never crossed our mind that the seemingly harmless pain would lead to such a serious thing. How could it be? He was only 14, and he did not do anything bad to deserve such thing.

If I was the one suffering from a life-threatening disease, what course of action to take next was entirely on my own, and I knew the possible consequences. It was a lot more traumatic if the one suffering was your loved ones who is young and innocent. You would ask yourself, times and again, "Is this the best options?", "Am I making the right decision?", "Is there any other way out?", "Am I going to lose him for real?", "Have I exhausted my choices?".

Next, comes the time you need to tell the young one. How much to tell him? Is he ready to face it? When is the right moment to reveal the fact to him? Will he break down? Can he accept it?

All these questions would stay with you day and night, every hour, every minute and every second. At that time, you would realize having the love and passion in life was just not enough. The worries and doubts just filled every single tiny space and time of your soul, till a point you know you might not be able to take

it anymore. But the choice was not on your side. Every time when you dozed off due to extreme tiredness, the next moment when you opened your eyes, the fear and helplessness would just flood your mind like a tsunami. It was suffocating.

In normal days, you tend to plan your life a week or a month ahead. Now, you did not want to think beyond a day, sometimes even an hour was too long.

After you had come to term with the reality, we just had to make friend with "faith". Accepting the fact that you had to deal with the situation regardless. You would have worry on one side, and doubt on the other. Both would not lead you anywhere. You would be blinded by emotion and the logical mind would just stalled.

My wife and I accepted the fact that we could not face the challenge alone. We were so glad that my sister Betty who is always having a cool and calm character stayed with us throughout the painful journey of searching for the best options for my son. With Betty’s extensive network of friends and associates, we started out frantic search for the right doctor for my son. We told the boy that there was a tumour at his back which was pressing on a nerve that caused the pain. We would now look for the best doctor to remove it and he would be fine. We promised him that we would do everything we could to give him back his health. A promise is a promise, I told myself.

Armed with nothing but the MRI results, we went to no less than five doctors and surgeons, but none of them offered any better analysis than the first. We only ended up with bleaker outlook of the whole scenario. The panic started to sink in. The world collapsed upon us. Fear was never so real, fear for my son losing his ability to walk at an age of 14 was most frightening, it was almost like ripping our hearts out of our bodies. My wife and I were totally in a state of lost and despair. We never admitted it but we knew at that time that we might lose him, and that was most unbearable.

We decided to go with one neurosurgeon, Dr. Lee’s recommendation, to do biopsy first to determine exactly the nature of the tumour. The main reason being he gave us an indication that he might be able to be remove the tumour by the latest non-invasive technology called “Cyber Knife”. At that time, my wife and I had made up our mind that regardless of the outcome of the biopsy, we would not subject my son to any risk of being paralysed for the rest of his life.

This “Cyber Knife” term stood out like a blinking ray of hope, especially in my wife’s mind.

It was really heart wrenching seeing the boy going through, not one but two rounds of biopsies. The sample from the first biopsy was not complete according to the laboratory. Dr. Lee gave the pathologist a call a few days later only to confirm that the disease is called MPNST. It was a kind of rare cancer

affecting the nerve shield. The best way was to remove the tumour by surgery and might follow up with radiotherapy. Upon confirming it was the big “C”, Dr. Lee crushed our hope by immediately referring us to an oncologist, citing “cyber knife” might not work.

Whatever slightest hope that we built upon the result of biopsy had been dashed, completely. My heart, my mind, in fact my whole body became hollow all of a sudden. All I could hear was echoes of someone crying while talking on the phone. My vision was blurred by the uncontrollable flow of tears. I could not remember for how long we had been standing at the door way, it sure felt like a light year. I decided to walk back to my boy was still on the hospital bed, suffering from the pain of the operation.

I had to admit this was the lowest point of my life, struggling to accept something which was so cruel to my boy. Sense of guilt and denial were all I had at that moment. Trying so hard to digest what had been told by the surgeon, hoping to find the slimmest clue of a wrong diagnosis proved fruitless. Refused to give up hope, we approached the surgeon again and reminded him about our earlier request to send the sample to two different laboratories for testing. He asked us to wait for the final report in two weeks’ time, but his opinion was that his preferred pathologist was the best in town. The other was not of the same league.

Chapter 2 Looking for a way out

“We were not giving up. On the contrary, we believed that when one door closes, another opens. We just needed to find that right door.�

The following two weeks were torturing to say the least. While waiting for the final report from the pathologist, we were busy searching for oncologist to explore whether there were any other treatment options because operation to remove the tumour was out of our list. If his fate was to leave us at such a young age, we had made up our mind to let him be happy during his remaining stay with us and not to make him suffer. We were not giving up. On the contrary, we believed that when one door closes, another opens. We just needed to find that right door.

The very first oncologist that we met was Dr. Toh. Expecting him to give us some comforting words that he could save my son, the meeting turned out to be so brief and short. Again, just like Dr. Lee who did the biopsy, Dr. Toh told us he was not the right doctor for my son. As my son was still at his teen, he was still classified as a child. Dr. Toh suggested that we go and see a Dr. Yap at UMMC, who is a Paediatric Oncologist. Our already heavy hearts sank further.

We had been running into walls, one after another. When would it stop?

Thinking that he was trying to push us away, I was a little frustrated by his action. We questioned Dr. Toh why my son had to be referred to Paediatric Oncologist. Dr. Toh took the trouble to explain to us that MPNST was a rare disease on children. It required more than one specialist to administer the treatments. UMMC had the facilities and team of good doctors to take care of my son. Dr. Yap, being a good friend of his, was the right doctor for my son. I guessed I misjudged him. A phone call from Dr. Toh to Dr. Yap quickly fixed up an appointment in few days times. Another few days of agonizing wait really zapped up our remaining patience and energy.

It was the general perception that UMMC being a Government hospital, may not be able to provide the quick treatment to my son, I also asked Dr. Toh to recommend another Paediatric Oncologist from the private hospital which he did. We quickly paid a visit to the other Paediatric Oncologist, but without even the final pathology report, she already asked me to admit my son for chemo therapy that same afternoon. Her argument was that after consulting the laboratory technician on the MRI (admitting that she couldn’t read the MRI), and a phone call to Dr. Lee, she concluded that the best treatment was to do chemo therapy to try to shrink the tumour and later surgically remove it.

Frankly, we were totally taken aback by her approach in her diagnosis. We were not doctors, but she did not give me enough confidence to leave my son’s life into her hands. We never returned to her.

Went home with exhausted bodies and minds. But the thing that was grilling us up to this point was that we still did not manage to find a doctor to treat my son!

It had been more than 4 weeks since the first diagnosis. This had been

extremely frustrating because the clock was ticking.

Beside all the frustrating periods of waiting, my wife and I, just like any other parents, did whatever was necessary to save our son, including spiritually. We asked many of our friends of various religious beliefs to pray for my son. We also pray and seek divine guidance to a good doctor and quick recovery of my son. I believed there is one being up there somewhere who has the power to do what is right. My sister Betty got her church members to form prayers groups to pray for my son also. My wife’s sister Irene also did her part in her church.

Many of my colleagues, some Christians, some Muslim and other Buddhists, all were sending their prayers. Their heartfelt goodwill and kindness gave us the much-needed positive energy to stay on course to find the right doctor.

Finally, one morning, we received a call from the hospital to collect the final pathology reports, two of them actually, after two rounds of delay. One of the reports stated the findings to be consistent to the initial oral report by the pathologist from Sime Darby Medical Centre. Nothing surprised us more than the fact that the second report, by Sunway Medical Centre, stated that the finding of the tumour was benign! Knowing that it might be a false hope, but that put us in a more conservatively optimistic position.

That evening, my wife and I took a walk at the park near our house, trying to get our mind off for a few minutes as the battle was still a long way to go. We took a step back and carefully recalling the unfolding of the events so far and tried very hard to see if we missed out anything important, however small it might be. The only focus now was on the two conflicting pathology reports, from two equally reputable hospitals. I did pray to the divine forces to perform some miracles. To me, the two reports somewhat provided a reason for us to fight on, it was already a small miracle in the making.

The next morning, holding on to the two contradicting reports, we were supposed to go to UMMC to meet up with Dr. Yap. Frankly, after seeing so many doctors for the past month, all we had were one disappointment after another. We really did not know what to expect. While waiting for Betty to fetch us, my wife and I even had a small argument. We were debating that we wanted to provide the best doctor to our son and whether Dr. Yap, being in the Government hospital, was the right doctor. We heard so many unpleasant experiences about government hospitals, would the long queue and delay that we heard so often going to cost my sons' life? A lot of negative energy actually almost made us change our mind. Just then, Betty arrived. We shared our concern with her. As usual, her calm and positive thinking put things into the right perspective. She calmed us down, and presented the facts.

According to her finding through the last few nights with her friends from as far

as United States, it revealed that a Dr. Yap Tsiao Yi was once working in US hospital as an Oncology Consultant. Betty’s friend in US messaged “If the Dr. Yap that you are going to see in UMMC is actually Dr. Yap Tsiao Yi, then you will be assured that she will do her best to treat your nephew because we were colleagues in US before, she is a good doctor.”

This statement came as a strong dose of positive energy to all of us. We drove our way through the morning traffic towards UMMC, with our renewed confidence.

Chapter 3 The turning point

“No surgeon should operate on your son under these circumstances. We not only try to save life, we also want to maintain the patient’s quality of life,”

We stepped into the Day Care Unit within the UMMC Paediatric Ward. By now, we got used to all the waiting in the hospital. Looking around, we saw children running around, and the friendly nurses seemed to know all of them by names. Look carefully, most of the children were either bald, or just some new grown hair. Many were wearing a cap and a mask. Almost an hour later, we met Dr. Yap Tsiao Yi. We had met, all in all, about ten to twelve doctors these few months, but none of them gave us that feeling that we were having when we started talking to Dr. Yap. She greeted us with a warm and sincere smile. After we presented her the MRI and two pathology reports, she did a thorough physical examination on my son, checked on every part of his body. She explained in a friendly but authoritative tone every single step of the examination on what symptoms she was looking for. We were really nervous, looking for every single clue in her expression that might give some indicate of the outcome. To our surprise, she remained relaxed, calm and composed. She was gentle during the examination, interrupted in between with questions. She even asked my son to feel his own lower left abdomen, and said there were some swollen lymph nodes like a chain of peanuts, as described in her own words. Then, she sat us down, with my son excused outside the examination room.

Dr. Yap brought us through the facts that MPNST was a very rare disease in children. True enough, the recommended procedure was to surgically remove it as much as possible, then follow by either chemo or/and radio therapy. Given my son’s condition, surgery was not recommended, but she said she would asked a Professor Vivek, who was an Orthopedic Surgeon that she worked closely with, to have a more professional advice. If Professor Vivek suggested that there should be no surgery, then the decision would be final. Then, Dr. Yap said, she would recommend chemo to hopefully shrink the tumour. She quickly made a call and arranged an appointment to see Professor Vivek, again in a couple of days. The discussion did not end there.

When asked about the two conflicting reports, Dr. Yap stayed quiet for a good five seconds before she instructed us to go back to the two hospitals immediately after the meeting to request for a set of slides. She would then send the slides to National University of Singapore (NUS) for another round of pathology examination. She put a strong stand that whatever result coming back from NUS will be the conclusive one. She then mentioned something that meant the whole world to us – there could be two other possible types of the cancer from her initial examination, which were easier to be treated compared to MPNST! Dr. Yap suggested that to fight for time, she would order a detail blood test and a CT scan for my son the next day, so that Professor Vivek would have more information to make his decision.

When we left Dr. Yap’s clinic, it was already almost two hours later. She not only gave us a rundown of the possible scenario, but also encouraged us to ask her any questions and doubts that we had in mind. Her answers were all sincere, knowledgeable and in terms that we could understand. Of the whole conversation, we did not detect any single thing that was negative. She was in total control of the situation and gave the instruction to all the assistants with confidence and precision. My wife and I believed, at that moment, that we found the opened door!

The next two days were the busy ones. Get the slides from two hospitals, sent them to Singapore, did the blood test and also the CT Scan. On the third day, we went back to UMMC to see Professor Vivek. The norm in Government hospital was to have a lot of younger doctors run all the examinations and tests on my son before Professor Vivek appeared with another lady doctor. After the discussion among the team members, Professor Vivek turned to us. He had a stern looking face. That gave us a sense that he was a no-nonsense kind of person. He looked back and forth on the screen with the CT scan and the MRI, before he opened his mouth. He made a remarkable statement which I remembered every single word in it.

“No surgeon should operate on your son under these circumstances. We not only try to save life, we also want to maintain the patient’s quality of life,” said Professor Vivek. He paused for a moment, continued to look at the CT scan before he said, “How can this be MPNST? You look at the swollen lymph nodes.” My wife and I stared at each other, then I uttered these words, “What do you mean Professor?” Professor Vivek explained, “MPNST will only attack bones, it will not attack lymph nodes. Since you have sent the slides to Singapore for testing, please wait for the result.”

Obviously stunned by the findings, we asked the obvious, “Then what will be the proper treatment for my son?” The accompanied lady doctor explained that the most likely treatment will be by chemo therapy. But they couldn’t simply put in the medication until they received the pathology report from NUS to confirm the exact type of cancer. Dr. Yap would plan the protocol for chemo therapy once she receives the report, and Dr. Yap would be the main doctor in charge of the treatment for my son.

That afternoon when we went home, we had a good meal. We hadn’t had any proper dinner since the day he was diagnosed of the disease. I remembered my boy had his favourite chicken rice. We all slept early too that night, uninterrupted until the next morning, something that did not happen for the last few months.

At this point in time, nothing was confirmed. No final diagnosis, neither was there a concrete plan for treatment. The strangest thing was, both myself and my wife were extremely calm then. First of all, Professor Vivek completely ruled out the surgery to remove the tumour, which was what we wanted to hear.

Secondly, we had no hesitation in putting our faith on the hands of Dr. Yap. Her smile of confidence and professional attitude left a lasting impression upon us.

We see hope in her!

Chapter 4 The journey begins….

“We told him that it was not an easy disease to treat, but we had full confidence with Dr. Yap. We reminded him that we kept our promise to get him the best doctor and we believed she was the one doctor that we had been searching for.”

The following three weeks was a long waiting period. But they were somewhat different from the last few times. We somehow knew what was going to happen but none of us said anything about it. Quietly we kept each other close by. We prayed together, walked the park, caught Pokémon at the playground or just kept each other’s company. We felt sorry for not spending much time with our eldest son this few weeks but we did explain the whole scenario to him. Being 20 years old, he understood.

We had been keeping my second son out of all the discussion with the doctors up to then, worried that he could not handle it. Since the whole situation was very much cleared up, we decided to revealed to him gradually. We told him that it was not an easy disease to treat, but we had full confidence with Dr. Yap. We reminded him that we kept our promise to get him the best doctor and we believed Dr. Yap was the one doctor that we had been searching for.

Since chemo therapy would likely be the mode of treatment regardless of the result from NUS, we also spent some time to prepare him mentally. We informed him that it would be a lengthy treatment cycles of 6 months, and warned him of all the possible side effects. While talking to him, we were also preparing ourselves. We reassured him that regardless of what happened, we would be beside him all the way. We did not lie to him that there will be pain, discomfort and unexpected happening during the treatment, but we gave him confidence that all these were just a price that he had to pay to regain his health.

We told him with positive thinking, that we would win the battle, and he would be stronger physically and mentally after that. All I could say was, he was such a strong boy.

Every waiting would come to an end. One afternoon when I was back in my office clearing up some work, I received a call from Dr. Yap. She informed that the final result had arrived from NUS, and it was confirmed to be Hodgkin Lymphoma, not MPNST! “In short, this is the best we could expect under these circumstances because Hodgkin Lymphoma responds well with chemo therapy usually, and we will start your son on it right away.” I ran out of words to describe my feeling then. It was such a huge relief, and I had a great urge wanting to thank someone, for answering to our prayers. Thank God. Thank you for this miracle.

Quickly Dr. Yap added, we were to proceed to Dr. Toh’s hospital to do a PET scan the next day, and then bring the result to her immediately. She would prepare my son to start chemo therapy immediately. We fully understood that the wait was over and the journey had begun.

Admission to UMMC Paediatric Ward started the whole machinery of chemo

treatment. Blood test, heart scan, bone scan, bone marrow test, insertion of PICC, design of protocol, all these were carried out proper order under full supervision of Dr. Yap, and assisted by her team of capable doctors and nurses.

When the protocol was ready to be administrated, Dr. Yap called for a family briefing. She explained carefully what types of cocktail medication would be given to my son, the types, the names, the dosage, the interval and the possible side effects of each and every type were made known. She even spent some time telling my son why she had to do all these and informed him that by going through the treatment, he would be healthy again. She took whatever questions we had and answer every single one with care. I had never seen a doctor who treat the patient with such passion and dedication, not losing a touch of gracefulness. At the end of the briefing, my wife shook her hand and said, “Doctor Yap, we have full confidence in you in treating my son. Thank you!”

An afternoon in the first week of August 2016, the first drug was injected, marking the start of the journey, a journey of courage for a 14 years old boy.

Many would be worried about the possible side effects, about how weird he would look when the hair dropped, about changes in the taste bud, about the possible mood swings and so on. We were actually rather relaxed and to some degree, feeling happy for the treatment to start. It signified a lighter sentence from the judge than what we initially were made to expect, even though we knew we were not out of the bush yet.

The therapy consisted of a monthly cycle, and was to be repeated for 6 months, provided the patient’s body condition allowed for that. First week of the month, we had to spend three days in the ward because the cocktail of drugs would take hours to finish each. Following that, the doctor would monitor his body responses and any possible side effects. My wife and I decided that we take turns to keep him company. I would take the morning shift while my wife would spend the night with him. It turned out to be more than just kept him company, lots more than that. Since the doctors and nurse could not be at his bedside all the time, and the input of the drug through the PICC was to be carried out for hours at one time, we had to help him with his movement to the restroom, changed his clothing etc. We were also required to monitor and record his food and water intake and discharge in a book provided. After a while, we were already well-verse with the exact names of the drugs, the dosage, time to complete, and possible side effects, if any.

Of the whole procedure, one most important thing to take care was to observe high degree of cleanliness near the patient. In the hospital ward, there is a dedicated janitor to clean the room twice a day at least. On top of that, we saw

another team of cleaners came in to wipe the furniture and fixtures in the room many times with disinfectant. We use the sanitizing hand wash every time before we touch our son.

The nurses in the paediatric wards were very friendly and helpful. Given the heavy workload to take care of all the patients, they still wore a smile all the time. They gained my respect after seeing how difficult it was to handle some of the young patients, who were in pain and suffering from the side effect. The nurses always managed to calm them down and sometimes even played with them.

After the three days, my boy enjoyed a break back home onto his own bed. We still had to send him back every Wednesday to the day care unit to do a blood test to make sure the blood platelets and some other conditions were stable. On top of that, the PICC needed to be cleaned to prevent infection. We could not let our guards down even at home. Three weeks later, if the conditions were stable, the cycle repeated.

With God’s blessing, my boy only suffered some minor side effect the first month, which included slight sore throat, and nausea. He coped well. His appetite started to change a bit. Food that he used to like became unbearable to his taste bud. We had to keep changing his food intake until we found something he liked.

As he progressed to the second month, the much-anticipated hair loss started.

He took it quite well, knowing that this was just temporary. He actually refused to trim the remaining hair, which looked a bit funny. Eventually, we got the hair dresser to shave all of them.

We were told that if we saw anything unusual to his body, be it fever, flu or anything else, we were supposed to send him back to the hospital immediately with his green card (medical record written on a green card). So, we sent him to the UMMC emergency room one weekend due to some purging of his stomach.

Upon seeing the green card, the emergency room medical officer called the Paediatric ward doctor in charge almost immediately. They made a decision to admit my son for observation in the isolation ward, just in case there is an infection. From that experience, I was totally convinced that our Government hospital is actually very good. I am impressed with all the services I had experienced so far.

We went through the six-months routine faithfully, during which we had seen patients as young as two years old, suffering from various stages of the disease.

The caretakers were with them days and nights, the doctors were helping them

the best way they could and the nurses were there to provide the much-needed medical support. These people were angels sent by god to help, but the true heroes were the patients themselves. Yes, they cried when they were in pain, and sometime throughout the night for those in the later stage. But if anyone of us were to put ourselves in their shoes, experiencing all the surgery, needle poking, bone marrow extraction and the side effects of treatments, the pain was unimaginable. Some came out as a victor while some did not make it.

Nevertheless, despite of these physical and mental trauma, they were the true fighters and we had no reason to quit before them. That positive spirit kept us going, month after month.

Three months down the road, a PET scan showed some positive respond to the treatment. That was an encouraging news. Tumour and lymph nodes shrank in size. Another positive trend was that he was gaining weight continuously, so was his height. The sharp pain at the thigh did not return, and he was in much better mood, started talking about returning to the soccer field.

He had his last chemo therapy session beginning of February 2017. The PET scan following that showed that there was no sign of the cancer. And the tumour was gone!

Of course, the journey continues. Just as what I mentioned at the beginning of the book, anything can happen in life. With all the courage and determination that we learned in the journey so far, we will not let fear and doubt rob our happiness away. Every day is a challenge and every day is a battle. With faith on our side, every day is a good day.

“I dedicate this book to all of the people who had offered their help, their prayers, their well-wishes and their blessing. Without all these, life would have been a lot more difficult throughout the journey.

Special thanks to all the doctors and nurses, many of whom I did not mention their names. I have no intention to challenge their professional opinion or integrity. Things happened the way it was, I believe, was for a reason. These chain of events to push us from one doctor to the next, from one hospital to the next, might be just a test on us by God, a test to see how deep our love is for each other. Everyone had a role to play towards a pleasant ending of a rather stormy episode in my life. Deep from my heart, I thank each and every one of you.

I thank my wife. She showed exceptional calm and courage throughout the journey. It not only brought us closer together, but also further strengthened our love and our common goal towards the future.�