Life at the Top

Or to be more precise, at Ku De Ta on the roof of Marina Bay Sands. I won a pair of tickets to catch Depeche Mode member Andy Fletcher deejaying, courtesy of Gold 90.5. It was our first time at the integrated resort, and I have to say, it was a little disappointing, from poor signages to inefficient use of parking space to dirty toilets! And boy was it windy - Lu's jacket came in very handy.

Due to start at 10pm, Andy didn't show till half-past midnight, by which time we had already aborted one attempt at leaving. Now I think I appreciate the work that goes into modern deejaying (remixes done on a Macbook Pro, no less), but I can't say if I found the results exactly enjoyable. I mean, apart from some cheesy Simon Says routines, there wasn't much interaction nor energy that normally comes with a live performance. Heck, I'm not even sure if the rest of the crowd enjoyed it - only a handful were actually dancing. Perhaps I'm not getting the point of the gig. Perhaps I'm just getting old.

Don't get me wrong, we had a good time, but it was mostly due to having each other for company. And possibly a fascination with observing human behaviour in a strange setting.

As they say...

生字, according to Matt:
"生字 is like taekwondo for my hand. I keep writing the same word and I get better, like I keep doing the same kick and get better."

Sophie, according to Sarah:
"God made Sophie a good girl, but I think sometimes Satan is controlling her."

No Op

Rachel will be having her first shot of chemotherapy next Tuesday, 11/1/11. Just a simple injection as an outpatient, and monitor for a few hours after that. If all goes well, she'll continue with it on a weekly basis for a few months to see if it stabilises the tumour, or better yet, shrink it. No IV plug needed, thankfully.

After several consultations with a number of reknown pediatric neurosurgeons, open head surgery is still not such a good idea because of the location of the tumour, deep in her head, and her small size, making blood loss a significant worry. Since there is now this drug to try, why not. Pegylated interferon alpha 2b, a.k.a. Peg Intron, is already routinely used by Hepatitis C patients, so it's not all that experimental although use of it for plexiform neurofibromas has only been in clinical trials for the last two years, and only more recently for kids as young as 18 months. She'll be a week shy of 20 months when she starts.

On a somewhat related note, we recently replaced her three chewed up pacifiers that threaten to break off entirely and choke her, with new BPA-free ones. We figured she already has to go through so much, let's allow her to continue having the things that give her some comfort, although by this same age, the older ones were already weaned off their pacifiers.

She's now able to walk some distance holding us with only one hand, and repeating words more accurately too. And I've not known another toddler fonder of receiving and giving kisses, repeatedly! Such a snuggly boojoo. She is very precious to all of us.

Chinese?

We drove past a Chinese temple and Sophie asked, 'Is that China?'

'No darling, that's a Chinese temple, not China.'

'Oh, you mean only Chinese people go there, not English?'

'Well, anyone can go there, not just Chinese people.' I couldn't resist adding, 'Are you Chinese?'

'No.'

'Are you Sinhalese?'

'No, I'm Singaporean!'

'Are you English?' (it occurred to me to ask)

'Yes!'

We're not surprised. After all, the birth certificates of all our four kids, under 'Dialect Group,' indeed say 'English'! I'm serious.

Missing The Point

Sophie (during prayer time, no less): If I'm naughty, will the police take me to jail?

Mummy: No!

Sophie: Then who will take me to jail if I'm very naughty?

Mummy: Nobody will take you to jail just because you're naughty, darling.

Sophie (indignantly): Oh, you mean I'll have to walk there by myself?

Rachel's Progress According to ABBA

Mother says I was a dancer before I could walk
She says I began to sing long before I could talk
And I've often wondered, how did it all start
Who found out that nothing can capture a heart
Like a melody can
Well, whoever it was, I'm a fan
So I say...

My Favourite Person

S asked the kids this question:

"Who is your favourite person?"

Matthew: God!

Sarah: Elton John!

Sophie: Me!

Rachel: ng-hng...

Happy Holidays

That's right. Our school-going kids are now already into their year-end holidays, thanks very much to the herpangina virus. Third time lucky? This round it included special treats like Daddy rushing from the SW of Singapore to the NE to take Sarah and her 39-degree fever home from school with her puking in the car (and leaving our Monopoly set behind), the next day Daddy covering an even greater distance to get Sophie and her mouth ulcers away from her poor little classmates still saddled with another week of school, Matthew hitting a record 40.1 degrees, and a final, cosy little trip of just Daddy and the three big kids to the doctor to confirm the diagnosis. Where was Mommy in all this, one might ask. Oh, not very far away. Just posing and repeating "Om" a few times at a downtown yoga sanctuary, or buying more lovely dies and texture plates off ebay, and oh, of course, working VERY HARD in the office. Mommy got no car, bopian.

So, they're now all ensconced at home, no school excursions, no after-exam games in class, no West Coast Park outing this Saturday, and no first steak dinner for Matthew until doctor gives them the all-clear. Speaking of which, I had considered taking him to Morton's at first, but that will certainly start him off with UNREALISTIC EXPECTATIONS. So, Astons it'll be, when he's good and hungry again.

This morning they were each provided with a big paper bag and tasked to fill them with toys and other stuff they no longer wanted. They were actually enthusiastic about it, and particularly towards things not their own. "But you don't need it!" was the common refrain as they tried to throw out each other's old things. Good! I endeavour to inculcate in them the virtue of chucking and that is a sure step in the right direction. Always try to throw out OTHER people's things first.

Meanwhile, Baby has been given the all clear at her very first appointment with the therapist as regards her walking (or lack of), given that she can climb the sofa and cruise, and also as regards her speech (or lack of), given that she has no problems with reception and fuller expression can expectedly come later. Good. Now to see what the specialists say, since her doc thinks it'll probably be a matter of sooner and not later that the lump in her head should come out, based on her recent MRI scans. Well, shopping for the right brain surgeon is almost as interesting and engaging as trying to pick the right items for combining shipping on ebay, and rather trickier. We've been given some big names at different hospitals to consider and consult, and kind souls have given us plenty to think about regarding post-op ICU care and so on. The medical social worker was glad to observe that we seemed to be positive and have good support, so, to keep that up. Well, we certainly wouldn't be as content as we are now without our three F's: our Faith, our Family and our Friends. So, THANK YOU and HAPPY HOLIDAYS one and all!

Courtesy

Courtesy is for free
Courtesy is for you and me
It makes for gracious living and harmony
Giving a friendly smile
Helping out where we can
Trying hard to be polite all the time

It's rude to be abusive just to prove we're right
Instead we could be nice about it if we tried

Courtesy is for free
Courtesy is for you and me
It makes for gracious living and harmony
Living could be a treat
If people are awfully sweet
Courtesy could be our way of life

Make courtesy our way of life

The Scrapping Senes

I don't suppose just getting a proper machine and supplies qualifies us as a scrapping family, especially since I have no intentions of actually putting together any scrapbook pages. But I like the sound of it anyway. Reminds me of Scrappy Doo and his wonderful "Lemme at 'em! I'll splat 'em!" attitude!

The Sizzix Big Shot (what a great name!) is very well made, and looks charming, to me. Embossing and cutting is literally a turn-the-crank affair. Even Sophie can work it without help.

It's great for engaging the kids since they're very free at home now, and will be even "freer" during the coming school holidays. I love the pretty dies and embossing folders that we got to go with it. That said, it took us two and a half hours at the shop, with the help of our ever reliable old friend W, to make our final selection!




Now all I need are holidays to play with everything, and lots and lots of paper!

Travel Declaration

I suppose it must be for disease control that MOE requires the kids to submit travel declaration forms every school holidays. The kids want to go to Bintan this December, so we have made a booking, but we haven't officially announced it to them yet.

Last night Sarah said to Sean, "Daddy, can we go to Bintan please? But Mummy already put Indonesia in my travel declaration form."

Sean replied, "Do you think that Bintan is a country?"

"Yes?"

Matthew went, "Bintan is in Indonesia!"

You could literally see the dawn of understanding breaking over Sarah's face as she processed this information, and her delight at the end of it as she cried, "Yay! We're going to Bintan!"

Then she added, "Daddy, next time on the travel declaration can you put Australia?"

Flashback

Mum did some major house-clearing, and guess what turned up? Among other back issues of CAR, these three gems:

- Richard Bremner’s epic, groundbreaking trip to the Sahara dunes in a Ferrari F512M (nee Testarossa). Why? Well, the title said it all: Because It’s There. Remember, this was before Ferrari had (more or less) sorted its reliability issues. This was surely the precursor and daddy of all the offbeat drive stories to follow.

"‘When d’you think you’ll be back?’ ‘Well, I don’t quite know,’ I admit. ‘Maybe 10, 12 days – it depends.’ ‘OK. Good luck. Ciao.’ That’s it. I leave, feeling like I’ve pulled off a bank robbery."

- The first drive of McLaren’s seminal F1, in all its exquisite detail. This included 6 pages of gorgeous photos highlighting the individual components contributing to this supercar of supercars’ low weight, stratospheric performance and equally eye-popping price.

In these post-Veyron days, GBP540,000 may not seem like much (heck, even a Lexus sells for over GBP300,000), but back in 1994, this was unheard of. Which prompted the great LJK Setright (who else?) to consider alternatives to spending half a million quid on one car. While his list included typical Setright fancies – spare tyres for a Bristol, GBP40,000 worth of additions to his library – he was inclined to agree with a like-minded soul: ‘surely a life-time’s supply of NSXs’.

- That infamous, damning long-term review of the VW Golf MkIII VR6, succinctly summed up its stark cover: Lemon. Trim falling off, engine heat entering the passenger compartment, dodgy suspension, it made the Vatican’s assessment of The Da Vinci Code look quite glowing in comparison. Volkswagen, as you can imagine, was not pleased.

But this was the kind of thing that only CAR could get away with – I remember my dad posting a study when he was writing for a local car magazine, where Saab scored higher than Volvo in a safety test, and Volvo immediately threatened to pull all advertising from the publication. Impartiality, what’s that?

It must be my eyes glazing all rose-like, but everything about these 15 year-old magazines evoked polish and quality, that rags today (yes, even CAR itself, sad to say) seem to lack. I think that political correctness, attention deficit and an inordinate obsession with the bottom line have so subtly subdued our society that writers end up practicing more self-censorship than they are aware of.

Not so journalists like Setright and George Bishop, who regaled us with the pleasures of wine, cigars and the art of driving fast. They never shied away from writing exactly what they thought, in the most lucid, idiosyncratic way you could imagine. Their articles, while sometimes difficult to digest, always demanded a repeat read, and could provide lessons in the English language all by themselves.

Ah, glory days!

More On The Tooth Fairy

Last night Matt asked me what if everybody loses a tooth at once, how will the tooth fairy be able to go to everyone in one night. I told him there's more than one tooth fairy, and each one has their own area to cover.

Then he asked how come the tooth fairies don't show themselves. I said they come by magic, and if they show themselves that would destroy the magic and they won't be able to come anymore. It's like Santa Claus.

Sarah immediately went, "Oh, they'll lose their job?"

It's funny how they humour me. The kids are actually dead certain it's Daddy who's putting the money in their tooth boxes. Matt says he has seen Daddy come in, and the reason he's even more sure is because, according to him, "You guys always smile when we talk about the tooth fairy!"

The kids have their own grasp of fiction and reality. In response to their query once about why people burn things during the seventh month, I had told them how people believe in ghosts, but they're not real. Sarah's response to that was, "Oh, it's like how we believe in the tooth fairy, but it's not real. Daddy puts it."

Boh-Geh Sarah

Sarah said to me this morning, "Mommy, I can take the train with you to office. I can hold your hand. If you're tired, I can help you up, and you won't miss the train." Pause. "I'm always helpful."

Nice try! She and Matt are home these two days for the PSLE oral exams. But Sophie still has nursery. Luckily I have the car to drive her instead of putting her on her usual schoolbus. She was already starting to kick up a fuss and that girl is loud.

Sarah is also losing her teeth apace: last week there were four shaky ones, two got pulled by the school dentist, now waiting for the extremely wobbly front tooth to fall. At the moment she's enjoying going around with it sticking out between her lips, bent forward at a crazy angle. I tried to encourage her to just yank it off herself, reminding her of the tooth fairy and the usual two bucks. Her response?

"I don't think I will get two dollars for this tooth. It has a decay here (pointing to it) so maybe I will only get fifty cents."

Tomorrow driving Sophie again. Can't wait for Sean to come back from reservist, and resume chauffeur duties. Saturday morning is not too far away!

ETA: He's coming home tonight! Yay!!

First Reaction To Uncle's iPad

Sarah, with glee: "Whose humongous iPhone is that?!!"

From The Kids

I hate you
You hate me
Barney started World War Three
With a great big bang
And his head flew off
Won't you say you hate me too?

~ by Matt


I hate you
You hate me
We're an angry family
With a great big punch
And a kick from me to you
Won't you say you hate me too?

~ by Sarah


And in the car Sophie will ask, "Please can I have rubbish?"
She actually means Garbage.

She also likes to call out from the third row in the back, "Go faster Daddy! Speed!!"

Theotokos

While I was showering Sarah, we heard Rachel crying briefly for her milk as Sean was putting her to bed.

Sarah turned to me and said, "Mummy, Mother Mary never cried when she was a baby. My teacher said she was always very good. She was a very good girl and a very good baby."

"Yes, oh, I don't know if she NEVER cried, but yes she was always very good, she was already good even before she was born, when she was inside her mummy's tummy." I guessed Sarah's teacher must have been explaining the concept of the Immaculate Conception to her class.

"Hmm, not fair, how come she's so good!" Sarah went.

"Mary is Jesus' mummy, of course she should be good because Jesus is God and he's perfect goodness himself. She has to carry him inside and look after him and bring him up, that's why God chose her to be good."

Sarah commented, "So lucky that God chose her!"

"Yes, she is really blessed among women. We can try to be like her to love Jesus and bring other people closer to him."

Later that evening, after prayers, I asked the children what they would like to do well tomorrow.

They were all thinking and Sarah suddenly said, "Mary!"

"Mary?"

"Tomorrow I want to be a good girl like Mother Mary," she confirmed.

"That's a great idea, Sarah. OK so tomorrow you can try hard to be good girl like Mother Mary. Matthew, what about you, whom would you like to be like tomorrow?" I asked.

While Matthew was thinking hard, Sarah said, "Jesus!"

I said, "That's a good idea! Matt, what do you think? Do you want to try to be like Jesus tomorrow?"

Matt replied, with some concern, "Yes... but I don't really know how to tell parables..."

Rachel's Update At 14 Months

We've been very blessed that Rachel's doctors are who they are. They are very good, even checking with doctors overseas on their own initiative, including informally discussing her case at the Mayo Clinic.

In a nutshell, she has neurofibromatosis type 1 (NF1) involving the right orbit, the plexiform tumor originating from the trigeminal nerve, with congenital glaucoma of the right eye, head and facial enlargement on the right side above the jaw, and multiple cafe au lait spots all over her body including a large patch on the right side of her face. She currently also has the sniffles, although that wouldn't really count.

Chemotherapy is out because the tumour is not fast-growing cells. Radiation is out because it can trigger more tumours or cause malignancy of the existing one. Surgical resection is on the cards for when she's older and has the size to deal with the likely high volume of blood loss because the tumour is highly vascularized and deep in the head, making it hard to staunch bleeding.

For now we're aggressively treating the glaucoma. She has had multiple laser ops (TCP) done to zap off the fluid-producing parts, but they keep regenerating. Already had a trabeculectomy to open a hole in the eyeball when she was only 1 week old, but that closed up pretty fast. Then she had an Ahmed implant put in to drain fluid via a tube into a self-release reservoir inserted onto the exterior of the eyeball. It's working but every now and then too much fluid will be produced and raise eye pressure. So, she has just had another TCP done this Monday to cut fluid production. Hope the effects of that will last a while longer than the previous ones.

NF1 is a progressive thing. She may develop tumours anywhere else along the nerves (inside the body or on her skin) later on. We can only hope they'll not be in dangerous places. She may have learning difficulties. Or she may not get anything more than what she already has. No one can tell since individuals vary a lot in how NF1 manifests. But she certainly will have to deal with the facial disfigurement all her life.

So far no problems with that other than us explaining to people that no, she didn't get involved in some accident or bad fall, she didn't get socked in the eye by a south paw, but is just "born like that". And people pity her and play with her, and then get charmed by her response, and realise that the disfigurement is irrelevant and simply enjoy her chubby little curly-headed baby-ness. It's heartening and quite a tickle to see how it always follows the same path of progression when people first meet her, to them saying bye-bye with some reluctance!

So, one day at a time. Oh yes, we recently managed to get downgraded to become subsidized patients at the SNEC where she is being seen for glaucoma, instead of paying full private rate. That means 50% or more savings, thank goodness, considering it'll be a lifetime follow-up. Another good thing is that she is now a happy camper when it comes to taking oral syrups from the syringe, even protesting when we take it away! Silly baby.

Just for the record.

Talking Tees

I found the following scribbled in pencil on the back of Old Navy clothing sizing charts I printed off the internet, in 2007! That means Sophie would have been about one (born in 2006, Year of the Dog), Sarah four, and Matthew six. No Rachel yet.

Sean: Can I eat bones? Am I a dog?

Sarah: No, you are not a dog. Sophie is the dog. She's the boss.

Matt: Ya, Sophie is the boss. One of her t-shirts says, "The Boss."

Sarah (to Matt): How can they talk?!

Ten Years

Ten years in the blink of an eye,
Ten years' worth of smiles and sighs.

Ten years building with God's bricks,
One and one make six!