The last word in courage

PUBLISHED : Sunday, 29 January, 2012, 12:00am
UPDATED : Sunday, 29 January, 2012, 12:00am

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After a 10-month battle with a brain tumour, my only son Elton passed away on December 18 at the age of six. His funeral was held on Christmas Day.

He brought much joy and laughter to us over the years. Right up to his last days, I did not give up my fight to save him. My visits to clinics and my exhaustive research on the disease - pontine glioma entwined with his brain stem - have made me an amateur doctor. After receiving the grave diagnosis in February last year, we tried both Chinese and Western doctors.

We placed much hope in a Beijing doctor who administered herbal patches on the nape of Elton's neck to remove toxins associated with the tumour. The treatment lasted three months. But I was crushed on June 18 when an MRI scan at the Hong Kong Sanatorium & Hospital showed the tumour had grown 10 per cent in size.

The Beijing doctor said that it might be due to an insufficient dosage. But I didn't want to subject Elton to any more of the debilitating pain and pus drainage that comes with the treatment. So I decided to move on and seek another avenue.

Elton's condition grew worse. One day in mid-July, he woke to tell me he couldn't move his left side. He had to drag his body along when walking.

I was given a glimmer of hope when a friend sent me a link to the website of a clinic in Houston, Texas, which specialises in treating brain tumours. Instead of conventional treatments such as chemotherapy or radiotherapy, the treatment is a form of alternative medicine.

A minimally invasive surgery was performed, where a central line transfusing medicine was inserted into an artery through the chest. The treatment cost HK$1 million. It is still in its trial stages and has not yet been approved by the US Food and Drug Administration. But there are testimonials from survivors on the website. I got in touch with more than 10 of them, and they said the treatment worked.

To verify the claims made by the clinic, a friend helped me set up a Facebook group to collect views about it. Four hundred people joined the group. They posted comments about the pros and cons of the treatment offered at the clinic. Through the group, we also found other parents with children undergoing the treatment

I decided to let Elton be a guinea pig and we flew to Houston on August 17. We visited the clinic the next day and stayed there for three weeks. The medicine that was transfused into Elton's artery every day was supposed to reactivate his body's anti-cancer systems.

Elton showed improvement after our stay in Houston. He looked more handsome. His mouth, which jerked upwards on the right side, regained its normal shape, and his uncontrollable slobbering lessened. Things seemed too good to be true.

The treatment was mostly self-medication, which could be conducted at home. I got intensive nursing training at the clinic, where I learned how to administer the medicine, wash the wound and take blood for testing. I did it every other day. Blood test results were sent to the United States for analysis. An MRI scan had to be carried out once a month and sent to the US.

After we returned to Hong Kong in September, we were sent five boxes of syringes, medicine, tubes and other tools once a month from the clinic. I administered the medicine and telephoned the US doctors every day to talk about his condition.

To my great dismay, another MRI scan, on September 30, showed the tumour had grown 5 per cent. Things got worse the same day, when a check-up at the Union Hospital showed he had hydrocephalus ('waterlogged brain' - essentially a build-up of fluid inside the skull, leading to brain swelling). The doctor said he needed to have surgery.

But if I checked Elton into hospital, I would have to stop giving him the US medicine, which was not approved in Hong Kong. I decided to put the surgery on hold, as he hadn't shown any symptoms of hydrocephalus, like vomiting, coma and severe headache. I was racing against time to stop the growth of the tumour before he succumbed to its complications.

I asked Elton to tell me the severity of his headache every day on a scale from one to 10. Mostly, he told me the pain averaged four to five. On October 19, he told me the pain was hitting nine, which was unprecedented. That was the last day he talked to me.

I rushed him to the Prince of Wales Hospital's Children's Cancer Centre, where he received a shunting surgery. A tube inserted through his skull was used to divert water from his head to his abdomen. It was minor surgery. He should have woken from it the next day. But he lapsed into a coma.

He was transferred to the intensive care unit where he was put on a ventilator to help him breathe.

He woke up two days later and looked at me, unable to talk as his mouth was filled with tubes. He was conscious, shaking my hands after I asked him things. In the following days, it was a painful struggle to get him off the ventilator - a prerequisite for discharge from ICU.

After removing the ventilator, his oxygen intake dropped precipitously and his lips turned purple in a matter of seconds, sending throngs of nurses and doctors rushing to his rescue. I thought I was going to lose him. They reconnected the ventilator. As a last resort to get him off the ventilator and leave ICU, they made a hole in his neck so that he could breathe directly through his windpipe.

After the surgery, he was moved back to the cancer ward. I wanted to get him home to continue my US medicine regime. There was nothing to do in the ward. Bluntly put, it was like waiting for him to die.

He also liked being at home, where his schoolmates, who were forbidden to see him in the ward, could visit him. To get him home, I had to learn all the medical procedures including using a dilating device to keep the breathing hole in his neck open.

I spent several thousand dollars renting all the equipment. I had to get things like a recliner bed to set up an ICU at home. The doctor who taught me the procedures said I was the first caregiver he had seen who had learned everything in a single day. It usually takes two weeks.

We went home on November 9. He had a great time at home, surrounded by his family, teachers and classmates. I woke up at around 5am every day, feeding him milk, administering the US medicine and tending to all his medical needs. I played him his favourite movies and DVDs. Although he was in a semi-comatose state throughout his stay at home, he gained three kilos.

On December 17, he vomited brown-tainted blood and we called the ambulance. He died the next day in hospital.

I believe that he's in a better place now, where there's no more pain and suffering. Having died at such a young age, he doesn't have to go through any work hardships or relationship problems. He was courageous, braving all the acupuncture needles, bitter Chinese medicine and surgeries like a little warrior.

Thinking about my struggle to save him over the past 10 months, I know I did everything I could to help him.

My motto has always been to hope for the best and prepare for the worst. In spite of the ordeal, I witnessed human kindness first-hand. Many people gave me support. Strangers sent me e-mails with donations.

Cathay Pacific, aware of our plight, upgraded our economy class seats to business on the flight to Houston. The pilot even approached us for a chat. They were all strangers who let us know we were not alone in our fight.

I also learned to be grateful. The treatments cost about HK$2 million. There are many needy people in the world who don't have the means to alleviate their suffering. We are lucky to be middle class and able to afford the costs.

I am glad that I exhausted all my means to save him. If, in 30 years' time when I am 60, news comes that the US clinical trial has proved successful in curing brain-tumour patients, I will be filled with sorrow.

I quit my job in marketing after I gave birth to Elton. I am now considering my future plans. Maybe I will go back to work. One option is to work for an NGO like the Children's Cancer Foundation.

I am also considering studying medicine. I want to do research to find out why brain tumours kill so many children.

For the time being, I have decided to head for Europe to spend time in a retreat.

Tina Chan Wing-ying, who chronicled her battle to save Elton's life on her blog at http://hk.myblog.yahoo.com/tinachanwy, was speaking to Elaine Yau