Losing My Mother

FEATURE

Our journey to find a cure for terminal brain cancer and how everything that could go wrong, did.

Words Mariana César de Sá | Photos Yankov Wong

It was a Sunday morning. I watched our last sunrise while lying next to her on a hospital bed. Her oxygen levels plummeted, her heart rate slowed, and her breathing softened. Half an hour later, our doctor declared the time of death: 7.35am.

Just a week ago, we thought she was making progress. But then, last Thursday, she fell into a deep coma. Her arms and legs had become unresponsive. Then the death rattle started – a gurgling sound that erupted from deep within her throat. Our doctor at the University Hospital in Macao told us there were three possibilities for the sudden change in her condition: 1. Tumour progression 2. Bleeding 3. Infection.

Following a scan, we had the answer. I sat with two sets of scans in front of me: one from 8 February 2019, the other from 21 December 2018. Her two tumours had merged, consuming her entire brain and rendering all three ventricles completely “obliterated”, according to our doctor. In addition, there was heavy bleeding.

Our doctor told my brother and I that she had days left, and encouraged us to make her as comfortable as possible. We ceased medication, both the hospital’s and our own stash.

We called our relatives and told them this was the end. Within a few hours, all of them had started arriving the hospital. That night, she was administered morphine intravenously, to relieve any pain she may have been feeling.

On Saturday evening, we watched her heart rate jump from 70 bpm to 145 bpm. Our doctor explained: “During the last few hours, the heart works very hard, pumping as much and as fast as it can before it crashes.”

Throughout the night, I lay next to her. My brother was on the sofa and her caretaker held onto her feet, which were covered in purple and black patches due to a lack of oxygen and circulation.

In that last hour before she left us, her oxygen levels were undetectable. Her heart rate dropped to 50, 40, 30 bpm... then her breathing stopped. Her eyes opened slightly, then rolled back. Her body released and relaxed.

My brother and I looked at each other, raw and broken. It’s impossible to adequately describe that feeling. Without exchanging a word, we pressed the red call button. Our doctor calmly performed an electrocardiogram – standard protocol to pronounce someone dead – and then said those words.

Nobody prepared us for this. Nobody prepared us for the death of our mother.

THE GREAT COVER UP

My grandaunt had called me in panic: “What happened to your mum? How is she? Where is she?”

“What are you talking about?” I replied, confused by her worried tone. The call came unexpectedly, while I was on holiday in Portugal. I hadn’t heard from my mum all morning. “She was hit by the typhoon!” My grandaunt bleated. I hung up and called my mother’s sister. She didn’t know much, but she confirmed that my mum wasn’t answering her phone. They rushed to her house in Macao, trying to navigate the labyrinth of fallen trees and flooded streets.

Typhoon Hato, which hit Macao on 23 August 2017, had shattered the floor-to-ceiling window in our living room and thrust Mum backwards. She hit her head and was knocked unconscious. When her friends finally arrived, they found her in bed, lying in a pool of blood.

They rushed her to Kiang Wu Hospital, where doctors confirmed she had a concussion – severe trauma to the brain.

For a few months after the accident, Mum developed several side effects: headaches, loss of memory, confusion, dizziness, and fatigue. The doctors said it was normal; it would pass with time. Little did we know, these were also symptoms of a much more malicious disease: glioblastoma multiforme (GBM), the most aggressive form of brain cancer.

Mum lived with these supposedly temporary side effects for the next few months. At one point, she seemed to improve, and we thought she was back on track. But in August 2018, things veered off course.

During a family outing at Galaxy hotel, she spent much of the afternoon sleeping in a cabana near the resort’s wave pool. She seemed lethargic, confused – nothing like herself.

At one point, she turned to my partner, dazed, and said: “I should have brought Mariana here when she was a child.” But Galaxy didn’t exist when I was a child... At that moment, we knew something was wrong.

That week, I took Mum to a general practitioner in Hong Kong who again attributed her symptoms to the concussion. Dissatisfied, I took her to my naturopath. He noticed that one side of her lip was slightly lower than the other – possibly a sign of a minor stroke. He recommended an MRI as soon as possible.

We returned to Macao and scheduled an MRI at Kiang Wu Hospital. Mum emerged from the examination room, more confused than ever. A few hours later, a nurse called us in. As the doctor reviewed the scans, her jaw dropped. It wasn’t a stroke after all; it was a tumour. A big one.

“What?!” my mum exclaimed. “A tumour? Me? Are you joking? Impossible.”

At first, we didn’t believe it. After all, plenty of our friends have been misdiagnosed in Macao. This must be another such case. We left the hospital, making plans to go to Hong Kong for a ‘proper’ diagnosis. My mum sat in the front seat of the car on the way home, silent, confused, trying to make some calls.

The next day, we took the ferry to Hong Kong. Within 24 hours, Mum’s confusion became increasingly obvious. At one point on the ferry journey, she asked: “When is the taxi arriving in Hong Kong?”

We checked into Hong Kong Sanatorium & Hospital. While my mum had another MRI, I called my friend Alice, whose husband passed away in 2017 from GBM.

While on the phone outside the MRI examination room, I received a text from our general practitioner, Dr Lee: “Need urgent surgery tonite. High grade malignancy.” Missed calls followed. Then another text: “We are preparing. Needs ICU after surgery.” Another missed call.

I read these messages to Alice. “Don’t let them bully you into immediate surgery,” she said, suggesting we see the scans first, get a second opinion and then decide. Alice recommended Dr Chang, a renowned alternative oncologist based in New York. Within the next 12 hours, I had emailed him and registered Mum as one of his patients but we didn’t have time to thoroughly consult him. It was all so rushed.

One hour later, Dr Ho*, a Hong Kong-based neurosurgeon who consults at Sanatorium, called us into an office to share the prognosis: “12 to 15 months.” I can’t remember much about what we discussed next. He assured us that surgery was the right choice, and it needed to happen as soon as possible. After fruitless calls for second opinions, we scheduled the surgery the next day, fearful of delaying it too long.

I spent the night in the hospital with Mum. While she slept, I sat on the floor outside her room working on my computer. Earlier that day, Alice had given me one piece of simple but invaluable advice: Record everything. Organise all the scans, blood reports, everything, and organise them by date – you’re going to need it. Those reports became my bible for the next six months.

I spent the rest of the night researching doctors and making calls – I was shaking. I called doctors from prestigious universities and hospitals in the US with glioblastoma experience. To my surprise, everyone was happy to talk to me – they expressed more emotion over the phone than our neurosurgeons ever did in Hong Kong.

FRIDAY, 10 AUGUST 2018

The next morning, we prepared for surgery. Mum was aware that the doctors had to remove something from her brain – but she didn’t know that she might only have 12–15 months left to live. She didn’t know she had glioblastoma multiforme.

My brother and I made a difficult decision to wait until after the surgery to tell her. We were scared: How do you tell anyone, let alone your mother, that she only has months left to live? That there is no cure for her cancer? Would she give up hope and stop fighting?

A few hours before the surgery, Dr Ho came by and stuck fiducial markers – used to help with MRI navigation – across Mum’s forehead. Curious, she wanted to see what she looked like, so my brother and I supported her while she walked to the bathroom mirror. We took a few photos together, photos that we will forever cherish. She was still herself then – confused, but still our beautiful, compassionate and determined Mum.

Mum was in the operating theatre with two neurosurgeons for six hours. I was terrified but hopeful. At 7.41pm, I received a text from our GP, who was our main point of contact at Sanatorium: “OT finished, smooth, mum in recovery.” He added that our main neurosurgeon had removed about 80 per cent of the tumour, though later, Dr Leong*, the assisting neurosurgeon, said only about 50–60 per cent had been removed. The doctors’ inconsistency alarmed us.

We rushed to see her in the ICU, where her head was wrapped in white bandages. With her eyes wide open, she muttered something we couldn’t understand. She looked scared.

The next day, Dr Leong assured us the surgery had gone well and drew a picture of the tumour that had been excised. Then he said something unexpected: “six to eight months.” That was half the time we’d heard just yesterday. Over the next few hours, Mum’s condition faltered. Dr Leong ordered a CT scan and promised they would continue monitoring her. On Sunday, her haemoglobin levels dropped, which meant she needed a blood transfusion. She was unresponsive and yet the doctors seemed blasé. Why weren’t they concerned?

I emailed Dr Chang in New York at 11.29am (11.29pm his time) with the blood reports, operation record and scans. At 11.37am, he replied. He had reviewed the reports and was free to discuss. This was one of the things I grew to really appreciate about Dr Chang. Even though he was based in New York, he responded to my questions quicker than any of our Hong Kong-based doctors.

After reviewing the report, he said it looked like a “botched surgery” due to a lot of bleeding. He was surprised that our surgeons hadn’t mentioned it. I was more than surprised; I was livid.

On Monday, we confronted Dr Leong, who said that while removing the tumour, something had looked “really abnormal.” But he didn’t mention the bleeding. He ordered another CT scan. I emailed the reports to Dr Chang.

“Scan confirms what I suspected from earlier,” he replied. “She had extensive bleeding into the brain as part of the surgery, as well as fluid accumulation.” He said that if her condition persisted, “here [in the US], we usually perform a shunt.”

That was the first time I’d heard this word.

Mum on her 60th birthday

CHAOS AND COMPLICATIONS

On 14 August, our Hong Kong doctors moved Mum to the observation bay. They ordered another CT scan. By this time, she couldn’t speak, and her heart rate dropped to as low as 40 bpm.

The doctors said Mum had developed hydrocephalus, a condition where excess fluid builds up in the brain and causes pressure. They tried an External Ventricular Drain (EVD) – a temporary solution to find the optimum brain pressure – and, at first, it seemed to work.

By this time, they had started putting restraints on her wrists to keep her from pulling out the EVD or feeding tube. That was one of the most painful things for me during those few months. Every morning when I arrived to see her, I’d take off the restraints. I hated them.

Mum finally looked calmer. She regained some movement and started talking, albeit softly. A few days later, she was quietly singing, “On Top of the World” by the Carpenters with her best friend. She wore a big white shower cap that protected the EVD and covered her partially shaved head.

Her face looked less bloated, though her right eye remained halfway shut due to post-surgery swelling. One week after the EVD implant, things were stable and our doctor suggested that they transition into the permanent solution, a non-adjustable shunt (a device that enables fluids to move more easily throughout the body, relieving pressure). We agreed.

They implanted the shunt on 26 August. It didn’t go well. Her response levels dropped and, within four days, she looked distressed – her face cramped up, her hand raised to her head, as if to indicate pain.

That’s when I sought out yet another opinion. Yankov Wong, a friend and photographer, suggested we reach out to Dr Derek Wong, one of the best neurosurgeons in Hong Kong. Together with my brother and my partner, we met Dr Wong at a Starbucks. We showed him all the scans and the reports. He suggested using a variable (adjustable) shunt, which would give the doctors more flexibility should they need to change the pressure settings.

We suggested this to Dr Ho at Sanatorium. He disagreed at first, before changing his mind just before surgery – he even thanked us for the suggestion.

They implanted an adjustable shunt, but something wasn’t right. She was borderline comatose. Wasn’t Mum singing just a few days ago? Days passed and her status remained poor. Dr Ho thought the shunt might be malfunctioning, and told us he wanted to replace it with a new one.

We asked Dr Wong’s opinion. He believed we should revert to an EVD until we had a clear picture of the situation. At this point, I was calling him almost every day – on his way to work, on his way home… Dr Wong felt so much like a friend to me that I started calling him Derek. Together with Dr Chang, they became my rock.

While all this was happening, our doctors at Sanatorium insisted that we begin radiation treatments as soon as possible. Again, Dr Chang in New York offered conflicting advice. He said it was too premature and potentially dangerous, given her unstable condition – her brain was trying to recover from multiple surgeries.

In the end, we didn’t proceed with radiation because it seemed too risky. Between the urgency of her case and the opposing medical opinions, the complexities took an emotional toll on us.

Dr Ho replaced the shunt with an EVD on 31 August. The next day, it drained 170ml of fluid from her brain. Strength returned to her hands. She gripped ours tightly, while crying and grunting in pain. She hadn’t been able to speak for days. As the days progressed, her condition remained the same – no major improvements, and she still seemed to be suffering.

Dr Chang suggested that she might be experiencing ‘negative pressure’ – uncommon but possible. In that scenario, the doctors would need to manually adjust the pressure of the EVD to below 0 (optimum brain pressure is 8).

Our Hong Kong doctors disagreed. Instead, they performed a lumbar puncture in an attempt to confirm her intracranial pressure – they said that the brain and spinal canal usually have the same pressure. The results were wildly different, and they ran out of ideas. That night, Dr Ho sat down with my brother and I. He told us Mum’s brain was no longer “compliant” (meaning, unable to adapt to changes in blood volume, which causes pressure to accumulate). He advised us to prepare ourselves for the worst-case scenario.

At that point, we confronted Dr Ho about the first surgery: “Something went wrong, didn’t it?”

“Yes,” he responded, without further explanation.

That night, we fired our neurosurgeons and contacted Dr Dawson Fong, a neurosurgeon who my brother had consulted for a second opinion before the first surgery. We called at 8pm; he arrived by 10pm.

You know that scene in the movies when Superman walks into the room and everyone stops? It felt like that with Dr Fong. The only thing missing was his cape.

He confidently took over the case, bombarding the nurses’ station with questions. Suddenly, we had hope again. Within 12 hours, he discovered the issue. The EVD system was completely blocked. How could both of our neurosurgeons have missed this?

He unblocked it and, once the cerebrospinal fluid (CSF) began to drain, Mum could speak again. It turned out she had negative hydrocephalus, just as Dr Chang, thousands of miles away in New York, had said days earlier. Over the next few days, Dr Fong adjusted the pressure slowly to coax her brain back to compliance.

Just when we felt we were in the clear, she developed another complication called pneumocephalus (when air gets trapped in the cranial cavity). Dr Fong sat on a chair at the nurses’ station, while I sat next to him on the window ledge. He was astonished. How could there be so many obstacles?

Resolving the pneumocephalus became our new priority. A week and a half later, Hong Kong was hit by Typhoon Mangkhut, a Signal 10 and the most intense storm ever recorded in the city. My brother and I watched as the wind uprooted trees, battered nearby buildings, and tossed deck chairs past our window.

We moved Mum’s bed away from the glass, then placed headphones in her ears and played her favourite tracks by Norah Jones and Tracy Chapman to mask the sound of the wind. Since her typhoon accident in 2017, thunderstorms and heavy rain made her panic.

9 August 2018: MRI scan taken before surgery

21 December 2018: MRI scan showing new tumour

8 February 2019: MRI scan showing tumour progression and bleeding

THE ROAD FORWARD

On 24 September, Dr Fong successfully implanted a variable shunt at the correct pressure. In a period of seven weeks, our beautiful mother had endured six operations: one to remove her tumour, the rest to combat complications.

She had no more hair, no strength in her legs. She was on a feeding tube and had lost over 10 kilogrammes – she was bedridden. We lost so much time.

But we were finally back on track, focusing on the cancer. Now we had to plan our next moves. Dr Chang coincidentally passed through Hong Kong, so we met at a coffee shop where he drew a circle on a notebook and divided it into four sections: conventional, immune, metabolic and epigenetic. He pointed to the circle and explained that these are the four essential approaches to cancer treatment.

Conventional methods include standard care treatments – surgery, radiation and chemotherapy – while immune methods cover treatments that strengthen and work with a patient’s immune system to fight cancer, such as immunotherapy, T-cell therapy and dendritic cell vaccines. Metabolic refers to lifestyle changes designed to affect a person’s metabolism, such as diet changes that starve cancer of glucose, its main source of fuel. Lastly, epigenetics refers to the use of drugs and techniques to alter DNA abnormalities or expressions.

If we wanted a chance at beating this disease, we needed to harness medicine and therapies across these segments. The hospital could only offer chemotherapy, radiation and immunotherapy. The rest was up to us.

At this stage, radiation was still too dangerous for Mum because the ongoing complications from surgery had caused significant mental impairment. We hoped that we could reconsider it in due time. Following a biopsy, we also ruled out chemotherapy because Mum’s tumour showed a negative presence of an important biomarker called MGMT methylation. Essentially, without the methylation, the cancer cells would repair themselves after chemotherapy.

All this time, we still hadn’t had the conversation with her. We were waiting, hoping that she would soon regain the cognitive ability to digest the news.

LITTLE VICTORIES

We soon moved from the Sanatorium observation bay to a private room where Mum needed round-theclock assistance and monitoring – she still didn’t seem to understand what was going on around her. We hired two 12-hour private shift nurses so we’d know she was in safe hands around the clock, since the nurses at Sanatorium only checked on her every few hours.

Mum started daily speech therapy and physiotherapy, which seemed to help. She was still on a feeding tube but could interact with us more.

As I watched her fight to regain strength, I simply couldn’t make any sense of how and why this had happened. My mother had always been the healthiest person in the family. Just last year, she learned how to make kombucha and had dozens of ‘scoby’ cultures in the fridge (the yeast compound used to aid fermentation). Whenever a guest would come to the house, she would offer them kombucha instead of water.

I thought about the days when she would wake up before sunrise to cook me lunch to take to school. They were different every day, usually a fusion of Chinese and Portuguese cuisines. Her food was so popular, I shared it with my school mates, so Mum started making extra in the morning to ensure I had enough to eat.

These memories flashed through my mind as I shopped for organic produce in the mornings. A few weeks ago, I had put her on vegan ketogenic diet, which research has linked to slowed growth of some types of tumours, particularly of the brain.

Since she was still on a feeding tube, I prepared vegetable juices and soups, adding MCT oils (medium-chain triglyceride), which enhance ketone production (a type of acid the body produces when starved of carbs, which is said to deprive cancer cells of the glucose they need to grow).

On 23 October, she was finally able to eat a cucumber – her first solid food in a long time. Meal time wasn’t easy. She would choke at times, and there were good days and bad days. Sometimes it would take 20 minutes to feed her one meal, other times four hours.

Once, when we were alone, I apologised to her. I felt sorry that I wasn’t a great chef like her. She whispered that she would eat anything I made her. I hugged her tightly. I didn’t want to let go.

She worked so hard in physical therapy to get better. By the end of October, she could walk with our help. She was smiling and posing for photos, and her hair started growing back, though uneven due to the various surgeries. On 2 November, we scheduled a haircut for her. For me, the haircut symbolised things were returning to normal and it was time to go home.

We scheduled an MRI that week to measure the tumour before returning to Macao. Following the scan, our oncologist approached us with a smile on his face. The tumour had changed shape and looked slightly smaller. He said to keep doing whatever we were doing.

It was a moment of victory. We didn’t know what, but something was working.

NOW OR NEVER

For GBM patients, it’s common to start treatments as quickly as possible – there is usually no time for trial and error, so most patients try everything to see what works. That was the case with Mum, too.

From October through February, our artillery consisted of Escozine, maitake D-Fraction, botanical medicine, vitamin B12, sodium phenylbutyrate, Digest Basic, silymarin Complex, NAC, EGCG, probiotics, curcumin, Brain Memory, Lypo Gold, Valcyte, mebendazole, grape seed extract, vitamin ADK, fish oil, artemisia Annua, RU- 486, coEnzyme Q10, metformin hydrochloride (extended release), phosphatidylserine, montelukast, lysine, Organo PSP, liposomal Glutathione, arnica, melatonin, triple Magnesium, chloroquine and temozolomide.

At one point, she was taking more than 25 drugs a day – some targeted her tumour, specifically, while others supported her immune system, reduced inflammation, blocked or activated major pathways, and so forth.

Many of these drugs and supplements weren’t yet approved by the Department of Health so I could only get them in the US, Europe, or India. I travelled to the US, collecting drugs and supplements, and enlisted the help of friends and family, too.

Late one evening, I remember looking at all these bottles of pills and supplements, stacked up in my temporary apartment in Happy Valley, and breaking into tears. Despite our tragic circumstances, I felt thankful. I thought of how lucky we were, to be able to afford the medication and to be surrounded by people who love my mum, who were willing to do anything to help us.

Our little celebration was cut short by an ever-growing pile of unpaid bills from Sanatorium. Every week, we received a HK$100–200,000 bill from the hospital. Though Mum had the best AIA insurance plan, we could only seek reimbursement after paying up front. When AIA payments took weeks to arrive, things started to get tight. One of the plan’s pre-conditions stated that AIA would pay hospital expenses directly if they were told seven days in advance that you would be admitted to the hospital. For urgent and unpredictable situations, like Mum’s, this policy offered no flexibility. Despite hours fighting with AIA on the phone, we continued paying out of pocket and waited for reimbursements.

We planned to move her back to Macao anyway but, soon, we would have had no other choice. When we finally left Sanatorium hospital on 9 November, three months after Mum’s first surgery, I had an outstanding bill of HK$1.3 million. The hospital blacklisted me until I could pay.

That afternoon, my partner picked us up at Sanatorium to drive us back to Macao. My mum was in a wheelchair, so we helped her slide into the front seat. She was confused about the drive at first, but as we crossed the Hong Kong–Macao–Zhuhai Bridge, she calmed down. At one point, she put her hand on my partner’s, who was holding the gear stick – she seemed at peace. Two connected hands, the hands of the two people I love most in this world.

We arrived at our apartment to find my brother and two helpers, now caretakers, waiting for us – my brother had spent the week tirelessly preparing the flat for Mum. He padded every corner and added support rails. He even removed all the carpets to prevent slipping. It was perfect.

By 12.30am that night, she was sleeping in her own bed, with her own bedsheets and pillows. Home had never felt so good.

THE ROLLERCOASTER BEGINS

Towards the end of that first week, Mum seemed to regain some control of her body. By 14 November, she could blow her nose, wash her hands and eat a whole meal. We were so proud of her progress.

But then, something changed. One morning, she began staring blankly, eyes wide open. She couldn’t respond. We thought it was an issue with the shunt, so we took her to the ER for another CT scan. We sent the photos of Dr Fong, our neurosurgeon, who said everything looked normal.

We went home. Maybe it was the medicine? We stopped all of her drugs but things remained unchanged. We returned to Hong Kong, this time to Baptist Hospital where Dr Derek and Dr Fong both practiced. The hospital administered blood tests, an electroencephalogram (EEG), which measures electrical activity in the brain, and an MRI – all in the same afternoon. Despite all of the activity, Mum seemed sleepy and unaware of her surroundings.

We soon learned why: She had another tumour growing in her brain, right below her third ventricle. This second tumour was located in the midbrain, the part of the brain that controls consciousness. Her EEG results also confirmed she had encephalopathy, the medical term for brain damage.

It seemed impossible. Hadn’t we just taken an MRI scan two weeks before? After closer inspection, Dr Fong concluded that the earlier scan was unreadable and shaky, because Mum had been moving in the machine.

We spent the next two nights at Baptist, just her and me. It was precious to have time alone with her – busy, but precious. On Friday, I took her home to Macao, shattered from exhaustion.

I had not slept well in weeks. My brother and I took turns by her side throughout the night, turning her every few hours so that she wouldn’t get bed sores. And now that she had a second tumour, I knew we had to act quickly. We were constantly researching new drugs and talking to doctors and clinical researchers.

On 25 November, I sent Dr Chang an email entitled “Strongest Weapon,” asking him to recommend the most potent drugs for Mum. He gave me three options: RU-486, Avastin and the dendritic cell vaccine.

We ruled out the dendritic cell vaccine, because it has to be administered in person and isn’t available in Hong Kong or Macao. We would have had to fly Mum to Germany but it was simply too risky to put her on a plane at that stage.

We settled on Avastin. Many patients and families are fearful of Avastin, because it’s often referred to as the ‘worst-case-scenario’ drug. But this was our worstcase-scenario.

Since Avastin has to be administered intravenously by a physician, we needed a local oncologist in Macao. At first, we considered frequenting the public hospital since we had Dr Chang to guide us from New York, but the next available appointment was a month later. She might not have a month.

Instead, we chose MUST Hospital. I met with Dr Gregory Cheng, an oncologist and researcher, and brought him up to speed. I was taken aback by his depth of knowledge. I recounted the various medications she was taking, and he recognised every single drug as well as its potential use for GBM. He said when patients face a terminal disease, you need to try everything and, as long as the medications didn’t hurt her, we could continue.

On 17 December, Dr Cheng saw my mum for the first time and began administering Avastin. He wheeled her into the treatment room himself – no doctor had ever done that before.

Mum, however, was not in a good place. She hadn’t woken up that morning and slept through the treatment. After the Avastin infusion, we went home, only to return a few days later.

CHRISTMAS FILLED WITH LIGHT

Every year since my childhood, Mum would throw big Christmas parties. Friends and family would descend on our home to enjoy her famous prawn curry. She made the house look beautiful and always enlisted someone to dress up as Santa to distribute gifts when the clock struck midnight.

We knew in our hearts this would be her last Christmas, and I wanted to throw a party for her. We thought, even if she was sleeping, she might recognise her friends’ voices or smell the food.

It was wishful thinking. On 21 December, she had another MRI scan which revealed that the second tumour had grown. That day, MUST Hospital became our new home. Our doctor told us we had days left. The tumour was now in a particularly precarious position – it could switch off her respiratory system in an instant.

We signed a DNR (do not resuscitate) form that night. Within a few days, she was back on a feeding tube and asleep most of the day. On 23 December, my aunts and I began planning the next steps. We visited Macao’s only funeral home, chose a coffin and learned about arrangements.

Although she couldn’t open her eyes or talk anymore, Mum looked beautiful. Her hair was a stunning shade of silver and her skin was glowing. We were back to juicing, making soups, and crushing all the medicine and supplements into the feeding tube since she couldn’t swallow.

On 24 December, I took a video of us together. Her eyes were closed, and she couldn’t mutter a word, but her hand found mine and we interlocked fingers.

Growing up as the oldest child, Mum always felt responsible for others and she would bring everyone together to celebrate holidays or birthdays. She would go out of her way to help her family, friends, strangers... anyone in need. She had the kindest soul, and everyone in her orbit knew this about her.

So now it was our turn to bring the party to Mum, inviting friends and family to her hospital room on Christmas. She couldn’t open her eyes, but we knew from research that her hearing would be the last sense to go. We arranged a small Christmas tree and lights, just as she would have done at home.

On 25 December, I dressed Mum in the red Christmas dress she had worn the year prior and we welcomed close to 20 people in her hospital room. There was dinner, music, and so much love. At some point, my brother sensed that Mum was aware of what was happening around her. He gently opened her right eye and when he did, we realised that she could see! Her pupil moved from side to side, absorbing the sight of the people around her. It was incredible. She looked happy, as if she had been liberated by the light.

We had no idea that she could still see. If my brother hadn’t opened her eye, we would have never known that she was struggling in darkness. Why didn’t our doctors consider this?

Three days later, the sun was shining, the sky was blue and a slight breeze rustled the trees. I was eager to take Mum out of the hospital, even if just for five minutes. We wheeled her down to a small patch of grass by the carpark and stayed there, just soaking up the sun. I stood quietly, taking her in. My beautiful mum, how did this happen? Just a few months ago, we were making dumplings together for your birthday.

Mum's 60th birthday party with her two children

My mum had worked tirelessly her whole life. She sold insurance, bread machines, and did all sorts of odd jobs over the years to support us. At the end of this year, 2019, she was finally going to retire. Why didn’t she have a little bit more time to enjoy the life she worked so hard to build?

The next day was my birthday, the last one I’d get to spend with her. I sometimes wish I were religious – maybe then I would believe that she was going to a better place, an everlasting life void of suffering, where we would be reunited one day.

But I’m not. What will remain with me are her memories, words, love, strength, kindness, her beauty and her ashes – which sit next to me in an urn as I write this story.

A MOTHER’S STRENGTH

And so we waited. We expected her to leave us any day. But she didn’t.

On 4 January, Dr Cheng asked to meet. He had been researching new treatment options and wanted to discuss. He presented a few research papers about cancer drugs that had successfully targeted tumours in the CSF. If the drugs could pass through the blood-brain barrier, responsible for making GBM so deadly, then could it work?

We started pomalidomide on 7 January. Then our Spooky2 device – a modern version of the Rife machine, which was invented by American microbiologist Royal Raymond Rife in the early 20th century – came in the mail. The machine outputs high sound frequencies, some of which purport to kill cancer-causing microbes and return diseased cells to normal, without harming the patient.

Within a few days, we started a second drug called valganciclovir (an antiviral drug) which was used in a Swedish study. The researchers hypothesised that GBM was triggered by viruses – and that valganciclovir could extend the life span of patients. This bottle of 60 anti-viral tablets cost HK$26,000 and was not covered by insurance. Then we started one more drug, Tagrisso, usually used for lung cancer – there had been a few reported cases where it crossed the blood-brain barrier.

We gave Mum this new trifecta cocktail and, within a few days, she showed slight signs of improvement. She was smiling, albeit with her eyes closed. She looked peaceful, and that was enough for us. But then a few days later, she started shaking. Her arm would twitch spontaneously, so violently at times that she accidentally hit her own head and we had to hold down her arms.

One week later, she started biting her teddy bear, squeezing her eyes and clenching her fists – she was obviously distressed. “What’s wrong? Where does it hurt?” I asked her. Of course, she couldn’t answer. We decided to pause the pomalidomide and try to identify the cause.

A month earlier, we thought she had days left. But here she was, still fighting. On 29 January, I flew to New York to pick up more medicine. While there, I met with Dr Chang. He couldn’t hide his surprise that she was still holding on.

The day after I got back to Macao, she pulled out her feeding tube. As bad as this was, it was also a good sign. It meant she had regained some strength. Still, her shaking worsened by the day, and she soon developed an infection in her right eye. Her status was slowly deteriorating and, at first, we couldn’t understand why.

That’s when she fell into a deep coma and our doctor discovered that the two tumours had merged together. This was the end.

ALWAYS ON MY MIND

The night before she passed, I whispered in her ear that it was okay to stop fighting, to let go – we would take care of each other, we would make her proud.

There were so many things I wanted to tell her. That we would celebrate her life, that we’d never forget her, that we’d keep her ashes at her beautiful home, her favourite place in the world… but I couldn’t say any of this. It was too difficult, too real. Instead, I lay next to her and held her all night. I wanted to be as close as physically possible.

On 10 February, at 7.35am, Mum passed away. A void lodged itself deep in my gut, my lungs, my bones. I felt numb, cold, defeated and withdrawn.

That same morning, we had to pull ourselves together for the arrangements. Until a loved one dies, one rarely has cause to consider the complicated logistics and bureaucracy around death. In Macao, before a person can be cremated in Zhuhai (Macao does not have its own crematorium, forcing family members and friends to make the journey across the border), it is mandatory to hold a small ceremony. At the event, the body of the deceased is placed on a metal gurney, which doubles as a ‘bed’, and kept in a back room, while the gathering takes place in the foyer. People can move between the two rooms and say their last goodbyes, if they wish to do so.

We held this ceremony six days after her passing – there was no availability beforehand. As is customary, Mum’s body was kept in a cold, clinical room with heavy metal sliding doors; it felt like a meat locker. Seeing her that day was a shock – she didn’t look like herself. She looked too pale, too skinny, like a stranger. I was so disturbed that I covered her face with a white veil, which I had carried with me for the ceremony. I turned off the room’s white fluorescent lights and lit candles instead. I didn’t want anyone to remember my beautiful mother like that.

After the ceremony and cremation, we celebrated her life at home with family and friends. We were able to bring her ashes home in time for the party – it felt good to have her there with us. I like to think that she was enveloped by the love that filled the room; that she would have liked everyone’s colourful clothes as well as the live band’s renditions of her favourite songs. The sky was grey that day and it was colder than anyone had expected, but the event felt like a total contrast. It was warm and bright, decorated with a jungle of flowers and photos in every corner. I believe this would have made her happy.

Our friend Yankov Wong joined us to photograph the event. It was comforting to have him there. He had played a important role in our journey. Before we knew Mum was sick, he photographed her last birthday. Later, at one of our lowest points, he had introduced me to Dr Derek Wong who had suggested the adjustable shunt and EVD that saved her life back in August. Now, Yankov was by our side yet again, capturing the final chapter.

Unexpectedly, our Macao oncologist, Dr Cheng surprised us with an appearance at the celebration. He held my arms, looked into my eyes, and said: “Your mum did not want to go, she did not want to go.”

It’s been seven weeks since we lost her, and there is not a moment where she isn’t on my mind – I feel guilty when I’m away from home because that’s where she is, and I long to be with her.

I’ve been going through her old photo albums, letters and journals, saddened that I’m just now learning so much about her past when she is no longer here to answer my questions. I never knew she was such an avid writer, jotting down her thoughts, quotes and even poems on corners of scrap paper or on the back side of photographs. I never realised just how much she loved flowers either, until I stumbled upon hundreds of newspaper clippings about flower arrangements that she’d been collecting since the early 1990s.

I feel heavy with sorrow when I think about all the time we wasted at the beginning, spending weeks dealing with complications instead of treating the cancer. The most valuable thing we have is time – and I’m only now realising it.

Looking back, we don’t know if she ever really knew what she had. We never had a chance to explain and we never told her there was no cure. Perhaps this was for the best. Perhaps this way, she didn’t have to face the cruel reality that she was leaving us – her family, her friends, her home, and this world.

*Name has been changed.

‘ELECTROSMOG’: AN INVISIBLE KILLER?

Dr Susan Jamieson, a Hong Kong-based integrative physician who specialises in the effects of electromagnetic fields [EMF] on the body, shares her insights.

Words Chermaine Lee

ARIANA: What’s ‘electrosmog'? DR SUSAN JAMIESON: ‘Electrosmog’ is a term used to describe the insidious effects of radiation from the electronic devices that surround us. As we can’t see or feel this radiation, it’s hard to believe it’s harmful.

A: How is it harmful? SJ: There is increasing evidence from clinical trials that electromagnetic radiation from Wi-Fi, mobile phones and computers is detrimental to human health. EMF were classified by the World Health Organisation as a type 2B carcinogen [possibly carcinogenic to humans] in 2011, which means that it’s already known to be a factor that can cause cancer.

A: How does EMF interfere with our bodies? SJ: DNA, our genetically inherited blueprint, determines every detail about us. We believe that DNA acts like the conductor in an orchestra, subtly organising millions of intricate biochemical and physiological reactions every second. Since our cells are constantly regenerating, DNA needs to copy itself. Perfect replication is essential – anything that causes ‘mistakes’ can lead to cancer.

Disruption of the sensitive ‘calcium gates’ on every cell wall is also potentially dangerous. Normally, these ‘gates’ maintain the barrier function of a cell, ensuring that only nutrients enter. Disruption makes cells ‘leaky’, allowing toxins to enter so cells can’t communicate properly.

A: Have there been any studies to support this? SJ: Yes, several. In 2012, a group of doctors analysed over 1,000 brain cancer cases, looking at the association of brain tumours with mobile phones and cordless phones. Their calculations revealed that the use of a mobile phone resulted in a significantly greater incidence for brain tumours on the side of the head where the person holds the phone.

ARIANA 2019