Archive for July 14th, 2009

The girl who lived in the dark

July 14th, 2009 by admin

A bored Tuesday had me watching this poignant documentary on Discovery Channel, about the girl who lived in the dark.

Wan Lao Yang, her name is.

As the documentary concluded as it crept towards 9pm, my optimism was greatly defeated, and what was left of me was a wreck as I seriously didn’t brace myself for the sad, sad, ending.

That’s why we always need to cushion as our expectations plunge, taking us by surprise.

It could be the hormones, it could just be a pain of a parent, that explains the heaviness I am feeling now.. which is enough to make my breathing shallow.

I stared at the television, soaking everything in, on the brink of tears, thinking, “It couldn’t possibly end this way! It shouldn’t be.” as the credit rolled.

Fate and destiny. Sometimes, we just can’t beat them, can we?

The 9 year-old was living in the dark in 2005, as she had a rare skin condition, accelerated by the fact that her hometown of Wubao in China, was high above sea level, and that meant UV exposure is higher than usual.

And her condition meant exposure to the sun can be fatal, as it spurs the growth of the tumour on her face. Her condition was flagged by a tour guide, who took her pictures and sent the pictures to various specialists around the world hoping to help her.

Here, is her story:

Daughter of a poor farmer from an undeveloped region of Southeast China, Wan Lao Yang was born with a rare genetic disorder called Xeroderma pigmentosum (XP). Whereas normal individuals are able to repair the DNA damage caused by the sun’s rays (UV rays), individuals with XP lack this ability. This leads to mutations or changes in the DNA in their skin, over time causing these skin cells to grow uncontrollably and leading to skin cancer. The only way to protect these individuals is to reduce or eliminate their exposure to sunlight. Early in life, exposure to sunlight had set off a chain of events in Wan Lao’s skin that eventually led to the development of a skin cancer called melanoma.

Every year, millions of individuals are diagnosed with skin cancer and it is estimated that skin cancer claims one life every hour. XP has revolutionized our understanding of the mechanics of skin cancer. Yet, there is a lot more that is not known.

Despite the harmful effects of sunlight, Wan Lao continued to go to school and led a semi-normal life till her condition deteriorated and facial tumours attacked her nose and part of her left eye. The resulting infection caused blood and pus to ooze from the tumours and a foul smell that eventually caused her friends and neighbours to shun her. Wan Lao stopped going to school as the stares from fellow students and isolation became difficult for her to handle. But she still harboured a hope to return to school some day.

When Dr Atherton first saw Wan Lao, he was shocked to see the extent of growth of the tumours. All through his visit, he was struck by Wao Lao’s positive and brave attitude despite the pain and discomfort she obviously endures night and day. How had she managed?

protective_suit.jpgNASA sends astronauts to space each year outfitted with special suits that block 100% of UV rays, equipped with interior cooling, yet light enough to be worn everyday. This type of suit can protect patients with XP from exposure to UV rays that pose a risk to their lives. Wan Lao has been using the NASA suit till recently when the tumours got too big and the hood didn’t fit any more.

Dr Atherton set out with Wan Lao and her father to seek the medical treatment she desperately needs, but has been unable to afford so far. The travel vehicle had to be fitted with UV resistant screens to protect Wan Lao as much as possible during the journey to Shanghai. Wan Lao was looking forward to getting cured and expressed her wish, “to be like other children and make my father proud”.

Wan Lao’s cancer had progressed to such an extent that unless she was operated upon soon, she would die within a year. It was quite likely that her facial tumours had burrowed into an underlying blood vessel, causing cancer cells to travel to other parts of the body and spread the cancer. All these possibilities had to be investigated before Wan Lao’s treatment could begin. Doctors at the hospital in Shanghai ordered biopsies and an MRI scan to map her tumours to enable the surgeons to plan their strategy to treat her. At this point, Dr Atherton had to return home and leave Wan Lao in the capable hands of the surgeons. On his journey back, he carried with him a biopsy specimen that would be analyzed by molecular biologists in the UK and used to understand more about melanomas.

The surgeons told Wan Lao’s father that her chances of survival following surgery were slim, and that even if surgery were to extend her life expectancy, she would still be disfigured. But even with the odds stacked against her, he decided to give Wan Lao a chance at resuming normal life and going back to school.

Following surgery, Wan Lao was left with a big gaping hole on one side of her face. She had lost her left eye and most of her nose. The abdominal skin graft used to cover the hole did not take hold and doctors had to operate on her again to place another graft, this time taken from her thigh. All through this, Wan Lao was optimistic and brave. She told her younger sister on the phone that she will take care of her once she is home. She assured her mother that she is not afraid. After nearly two months at the hospital, Wan Lao finally went home.

girl_who_lived_in_the_dark_1.jpgDespite losing an eye and having most of the left side of her face covered in bandages, Wan Lao was grateful to be rid of the huge tumours and admitted that she is more comfortable and “not as ugly”. Minus the pus and the smell, she was welcomed back eagerly by her friends at school. This little girl had, in a short time, been through an amazing journey. She had not only had the opportunity to get medical treatment, but had also managed to travel to the largest city in China and see places and things she never could have imagined!

How does this story end? Soon after her return, doctors in Shanghai found out that Wan Lao’s cancer had spread to her lungs. Two months later, having realized her dream of going back to school, Wan Lao died, leaving behind a legacy that provides hope to scientists and cancer patients worldwide. Her biopsy samples and tumour cells have been cryo-frozen and will be used by researchers to study the mechanisms of skin cancer. Wan Lao has immortalized herself by contributing to the advancement of our understanding about a disease that afflicts millions, but that still remains more of a mystery to us than ever.

The last words ended with her saying how she had wanted a prosthetic nose/cheekbones so she could look normal, and then she would want to study hard and go to school, so that one day she could go university, be someone useful… and then her wish of getting married one day.

The dad spoke of how they had came so far and all he could think of is that he was thankful she was alive.

The mum spoke of her relief and envisioned a future for Lao Yang.

The documentary ended with the announcement of her death in 2006.

I stared at disbelief.

She was so brave, so so brave.

Her father just wanted to save her life and signed for the approval for the surgery.

Everyone had so much optimism.

Sometimes in life, everything can be too late, even if it was just a small step so.

Posted in Making Sense of Life | 6 Comments »

Cultural differences

July 14th, 2009 by admin

I always like traveling for the people I meet, the places I see, the sensory experiences, the stories I imagine, and how just a simple conversation with anyone could be so enriching.

The Brit I met on board and I spoke about Hamsphire, and how he knew Croydon very well cos both towns are of proximity. He had quit his project managing job to go around the world in 17 months, and he was already into his 4th month of wandering. He would be flying home in couple of weeks’ time to chill for 2 weeks, before flying off again to where he left off, and continued on with his journey.

I marveled and display envy openly.

That’s what some of them worked hard for.

It costs him 20, 000 pounds, and of cos, another 10, 000 for emergency backup.

Then, there was the Finnish who gets discounted tickets since he worked for the airline, and he spoke of the places he had been to, and how Vietnam had changed drastically in the past 15 years.

The Australian teacher who just got back from Sa Pa, spoke of her grown daughters.

The Danish family with 3 confident, young boys, who introduced themselves and gave us firm handshakes when they joined us onboard in the middle of the sea, somewhere, out there. They were well-mannered, and really sweet boys, and they enjoyed themselves by jumping into the jellyfish-infested sea from the roof of the junk. And then I thought of the conservative, sheltered way Asians bring their kids up.

The Chinese couple who were on business trip and gave us a chance to hone our mother tongue.

The Vietnamese guide who mistook us as cough, fashion models (cough blind cough), and shared his personal stash of green tea with us, and chatted to us aplenty, giving us backgrounds to his cultures and all.

We spoke of different things, different cultures, had meals together, and it was nice.

I learnt things I never did know, and my narrow horizon just broaden, somehow.

I dealt with the hottest weather I ever encountered in my life (okay, I remember the Australia heat some 16 years ago, but it wasn’t humid like that of Hanoi’s).

I felt so small in the big, big, world out there. I might never have the time, money and chance to see everything, or be everything, and the impulsion of letting my instinct guide me along, is becoming stronger.

Reading NatGeo isn’t helping much either.

Round the world ticket is cheap leh!

***

I am glad to announce I have put on weight from recent days of good food and a growing appetite.

I chomped on a burger, followed by a huge scone during a 3 and half hour meeting with my boss yesterday, and he gave the strangest laugh as he looked on to me munching non-stop.

I just had a set lunch after having an ultrasound done, but am now craving for scones again.

Bah. I missed a session today.

***

Seen and heard:

- It was Changi Airport on a Tuesday morning, when I was queuing up to enter the gate, scanning the load of stuff I bringing on board. My colleague let me go before him and then just as I was about to step forward to place my bag onto the strap, this man hopped right before me and placed his stuff onto the moving belt. As usual, I just stared blankly in shock. Tsk! The audacity! My colleague loudly said to me, “Eh, don’t jump queue can or not?“, which I suppose was said to me but subtlely aimed at the guy before me. Of course the chap was too deaf to hear any of such, or maybe he just didn’t understand English. Just as I was moving forward after he was done, a flood of people from the back suddenly stepped before me and followed what the chap did.

I widened my eyes in mocked horror, and looked on to the aggression helplessly, before the immigration officer saw the wooden statue of horrified Ting, stepped in and asked all of them to queue up.

I had to be careful not to be jousted as I made my way into the flight.

- The flight was taxiing when the lady beside my colleague took out her phone and started chatting. Stunned, she asked the lady to switch it off, and with some help from the younger lady in front of them, and some gesturing, the lady begrudgingly kept her phone.

Just when the plane was revving its engine, ready for take off… *RING RING* and the lady’s phone rang.

My colleague, understandably panicky from the horror stories/myths of aviation, and some other passengers had to intervene to get the very annoyed lady to switch off her phone.

- To anyone wanting to travel to Vietnam, please note that some of their old notes are already not in use anymore. Beware of cab drivers who insist on you to use 100, 000 dong note, so they could give you change. We learnt it the hard way after being given some of these old notes as change. So yeah, we got conned.

- On the return flight, when everyone was strapped to his seat, and the plane was picking up speed for ascend, this lady in her 50s, suddenly stood up and started walking up and down the aisle. The air steward flustered and raised his voice for her to sit down, an advice she failed to heed. So he had to quickly unstrapped himself and rushed to her to  get her to sit down and wear her seat belt. After he had returned to his station, and the plane was just taking off, her younger companion from another aisle turned to watch out for the steward before unbuckling herself and moved across the aisle to a couple of rows behind to change seats.

- I held my breath on the plane when one of the passengers started coughing relentlessly.

I think I am start to brew a cough……..

- Vietnamese women are gorgeous, sweet, demure, and have the greatest smiles. Vietnamese are mostly very humble. The service staff do not speak good English, but just be a little patient and you can see the amount of effort they put in. They are really a sweet bunch. I think the staff at the Ritz Hotel(hohoho!) really left a fabulous, fabulous impression.

- Because of a last minute change, the whole bunch of us had dinner at Bobby Chinn’s, which I thought I wouldn’t have the chance to check out this trip. Thanks Irene for the heads up and brilliant recommendation(though it was my boss’ idea for the last minute change of venue)!

I so wanna marry a half-Chinese, half Egyptian now. So hot lah, with the distinctive widow’s peak…

And yes, the highlight wasn’t the food, but because coincidentally,  Bobby “the man” Chinn was in the restaurant and he came by to the table to say hi.

So hot lah. Giggles. He just returned to Vietnam after popping by Singapore, he said.

Then I saw him on the magazine yesterday, attending LV launch. Speak about coincidence.

***

Over dim sum supper last night, I was told my shift to my new domain hasn’t been all that smooth, apparently due to the 10MB of database of text (pictures not inclusive at the moment) accumulated over the years.

Woops.

Upon visual inspection, I was told I probably don’t need a boob job, before I cautioned him not to be fooled by the hormones and fillets.

Honestly, I am apprehensive, and I ain’t sure. I have people who egged me on, and some (normally those who don’t understand the woes of the small nehs haha) objected to it.

But then a part of me just want to do it so that I don’t look back and think about how I should have done it but I didn’t, and what it would have been if I did.

Somemore not say I got budget, but then got instalment plans and subsidies lah.

Okay, so tomorrow if I have bigger nehs, you will hear about it!

Posted in The vast out there | No Comments »