DOT 82 : IRRITATED

THE FINAL CHAPTER : A SPIRITUAL JOURNEY (Sept 2009 to Jan 2010)

Daniel (14+ years old)  

Wednesday, September 9, 2009

“Today is the day. We are going on our trip to Lourdes!!!”

We were all packed and ready to go. Dad has called the Limo Cab, which was coming to pick us up at 7:30 pm from the condo to KLIA. 

You and Justine were so excited. 

For a while there, You forgot all about your back pains. 

Yes, back pains.

Exactly, how you got those back pains, we will never know. After your last surgery in June 2009, while You were at home recuperating, You yelled loudly in pain one day. 

This happened the day after You were discharged from hospital and your first day at home. You experienced excruciating pains on your lower back. Dad and Mom were so shocked, because You did not display these pains in the hospital. 

Only right then.

We brought You to the hospital and an MRI was done immediately. Your doctor wanted to eliminate the possibility of a metastasis. 

Thank God, your spine was clear and normal EXCEPT for the dislocation at the tail end of the spine. How that disc happened to jut out, we do not know. 

What we do know is, You had a dislocated disc and the dis-alignment was clearly confirmed by your scan. The doctor said, it could be corrected by surgery. 

You had barely recovered from a major brain surgery a week ago, and the doctor was suggesting another surgery? Mom was starting to get very irritated by your doctor.

Did he think we were like asking for a second helping of mutton briyani?

Could he have another surgery, please???

 Taking a break at Uncle S's waterfall resort.

DOT 81 : INVITATION

THE FINAL CHAPTER : A SPIRITUAL JOURNEY (Sept 2009 to Jan 2010) 

At the Grotto of Our Immaculate Conception, in Lourdes

Daniel (14+ years old) (Sunday, October 4, 2009)

We have been in Lourdes for 25 days now. 

Mom went to see Father Terry for confession today. She told the priest of all that has happened to us in Lourdes, and he listened very attentively. 

At the end, Mom said, 

“We’re going home tomorrow. 

We’ll bring Daniel here every year until he fully recovers.”

The Priest was quick to say, 

“Wait for Our Lady to invite first. Only come upon Her invitation. You are here now because She wants you to be here.” 

The Priest gave Mom a knowing nod. He held her gaze steadily as she mentally fumbled with a hundred and one questions as to what that message meant. 

Pause ...

She ignored the sudden goosebumps that had suddenly crept up her arms and the back of her neck. He made it sound like we would not be bringing You here to Lourdes next year. All her hopes that her Son would recover, little by little each day, were shredded instantly. 

This couldn’t be Daniel’s first and last trip here, she had thought numbly.

Could it? 

With grim determination, Mom forcefully pushed all negative thoughts out of her head, and mentally pieced her shattered hopes together again, as she stepped out of the confession box. 

She did however, come to the understanding that, even if you had an itch or an urge to go to Lourdes, you’d probably not find yourself there unless you get the call first. 

That part was very clear.

And so, reflecting back … when our family decided to go on this humble pilgrimage to Lourdes, it was upon Our Lady’s invitation. 

Plain and simple. 

From September 9 to 13, 2009. 

That was the original plan. 

5 days and 4 nights only.

Little did we know then, that God had His own plans … 

 

 On the plane to France ...

God was / is definitely watching over You, Daniel ...

DOT 60 : BENIGN

Daniel (7+ years old) 

One month after surgery ...

 

Mom got in touch with some survivors on the internet who had the same deadly cell as You, and at first was comforted that everyone on the survivors’ site spoke positively and was encouraging one another to fight and battle on. 

There were about twelve survivors on the site at the time she checked. They ranged from children to elderly people, all of whom had the same challenge.

As years went by, You never knew this, but You survived them all. 

Once, about four years after your first surgery, when You asked about the friends from the site, Mom mumbled that she could not find the link anymore. 

She lied. 

She had to. 

There was no way for your mother to tell You that the word "deceased" had appeared under some of the survivors' profile photos then.

You left it at that and never brought it up again.

On hindsight ... 

Dad and Mom may have stepped into the doctor's office to have the “malignant” word slammed into their faces, but when they stepped out, they radiated with everything that was “benign.” 

You were too young to understand anything. 

Besides, Dad and Mom were never pressured into explaining the real situation to You. Or to anyone else for that matter. 

You were busy living a normal and a happy childhood.

Life was back to normal …

 

 At the Grand Canyon during our trip to the States in 2004 ...

DOT 59 : OLIGO

Daniel (7+ years old) 

One month after surgery ...

Malignant …

Mom's heart made a dive down down down to uncharted waters.

Oligodendroglioma & astrocytoma … 

The names of the two strains of naughty cells that were extracted from the surgery. 

What fancy names for such deadly cells. 

Follow-up treatments were recommended, of which Mom was familiar from Grandad and Aunty Tracy’s experiences.

Radiation on the brain presented obvious risks. Besides, there was no guarantee that You would have normal functions after that. 

Chemotherapy was out of the question. 

It really did not make sense to hurt the whole body when the problem was only in the head, and "everything" had been removed after all. 

Had it not? 

That question was never discussed somehow, but the answer came to light when You had a recurrence one and half years later. 

It had not.

At home, Dad made some searches on the internet to learn more of this naughty cell. Really, there was nothing good about it. 

Not one thing. 

Survival rate was dismal. 

If Mom remembers correctly, Dad had said something like, only 20% of survivors would live past 2 years ... 

 

 Your first Holy Communion ...

DOT 58 : BIOPSY

Daniel (7+ years old) 

One month after your first surgery ...

“These are the findings of the biopsy,” 

said your doctor, handing the medical report to Dad.

Dad took the report. 

At the same time, Mom got up from her seat. Taking your hand, she led You out of the room, where Justine was engrossed playing with her gameboy right outside. 

You ran to your sister, jumped up the seat beside her. Soon You were excitedly cheering her on. Mom watched the both of You playing happily together, and a dull ache began to beat in her chest. She went back into the room, with a rock weighing her heart down. 

Dad appeared to be reading the report carefully. 

When he finished, Dad passed the piece of paper to Mom. Who would have thought that a few lines in a seemingly harmless piece of paper would hold the fate of their child?

Something has clearly happened that was about to turn their lives upside down. 

The doctor was talking to Dad.

Mom was not listening. 

Her concentration was on that sheet of paper. 

She did not need to read the whole thing. Her eyes quickly scanned through the paper. She stopped short in her tracks as she caught sight of the dreaded word she had not want to see but did. 

Your Grandfather and your Aunt Tracy’s medical reports both had this very devastating and glaring word. That one word that would cause her world to crumble at her feet. She inwardly summoned all the strength she never knew she had in her, to maintain and retain her composure ...

God, why ??? Why ???

 

 See how engrossed Justine and You were?

Wild horses couldn't drag you both away from the game machine.

DOT 57 : PEE

Daniel (7+ years old) 

Wednesday, November 13, 2002

Discharged on Friday, November 15, 2002

 

Yes, Aunty Jessie visited You in the ICU the day after your surgery. We were waiting for your room in the Children's Ward to be vacated, and so You were still in the ICU. 

Your room was soon ready and You were transferred around noon time that day.

Aunty Jessie  wrote about the portable urinal which brought back memories Mom has forgotten. Yes, Mom remembers with a smile the first time You laid eyes on the portable potty ...

Your catheter had been removed. 

You needed to pee, and Dad had brought the urinal to You.

You looked at it and asked, "What's that?" 

Dad replied, "It's for You to pee. You pee inside this." 

Your eyes widen with delight, and You exclaimed, 

"Really??? Coooool!!!" 

For the rest of the day, You tried to find as many "I have to pee" moments. Yes, You did entertain us with all the pee - drama.

The day after (on Thursday), You felt progressively better. 

Justine climbed up your bed and You both started using the remote to move the bed up up up up, and down down down down ... up up up again, and down down down ... 

You two were squealing when the bed was at its highest, and only stopped playing with the remote when there was a loud cranking noise that came within the mechanics of the bed. Uh oh ...

You were discharged on Friday (November 15, 2002). 

We went straight to Sunway Lagoon to attend Dad and Mom's company's convention which was held at the place that weekend. 

Your doctor had commented that your recovery was very fast, and You were well enough to go home even though it was only 3 days since You underwent a delicate open brain surgery.

Praise the Lord! 

 

We celebrated Justine's birthday on November 20, 2002,

5 days after You were discharged from the hospital.

DOT 56 : POTTY

Daniel (7+ years old) 

Wednesday, November 13, 2002

 

Aunty Jessie wrote this entry on your facebook on March 21, 2010.

(continue from Dot 55)

You were talking, laughing, jumping around, creating  havoc ... even the nurses had to come in several times to ask us all to keep it down. 

"Didn't this boy just had a brain surgery?" 

must have been the question in everybody's minds. =)

After unwrapping bags full of toys, You were jumping for joy and bouncing about in the room and on the bed with Jus. 

Suddenly your interest was focused on something sitting by your bedside ... your portable potty. 

You were so fascinated by it and thought it was the coolest thing in the world ... 

Like who invented this stuff anyway ... 

It's brilliant! 

You were already walking and moving about and yet when it came to bathroom time, You would so cheekily ask everyone to turn the other way as You ran to different corners of the room to pee in that portable potty of yours. 

You may have just pretended to pee ... 

but You were simply hilarious ... 

You made us all laugh so hard ... 

You were such a clown running around from wall to wall with that portable potty in your hand ... 

You caused such a riot which led to yet another kind and patient reminder by the nurses to:

"Keep it down, PLEASE ... babies sleeping ..."

 

Here's You with Aunty Jessie and your favorite cat in the whole wide world ...

DOT 55 : TOY

Daniel (7+ years old) 

Wednesday, November 13, 2002

 

Aunty Jessie wrote this entry on your facebook on March 21, 2010.

Before moving to the Children's Ward, I recall getting a chance to see You in the ICU the day after surgery.

Hospitals ...

Oh, how we loathed hospitals ...

Especially when we know it's not a celebration of a newborn. 

Walking down the bays in the ICU made me think of Tracy too. Though I didn't get to see Tracy in the hospital (in Mexico), your mom's letters described every little thing in such intricate detail that I, we, felt like we were all there with her. 

Your bay happened to be at the end of the hall on the right side and so every little step taken was nerve wrecking.

When I saw You laying there on the bed, You were still drowsy and had a permanent frown on your face. 

It's hard to see You without a smile. 

I couldn't bring in your load of toys because You were in the Intensive Care Unit but I did sneak in at least one toy ...

Either You were REALLY drowsy or You were so NOT impressed with that one miserable toy. I was worried that You were disappointed. I thought You had a smile but maybe it was more like a smirk ... like in Calvin and Hobbes. 

We assured You that there was a whole lot more just waiting for You. You nodded like a goooood boy and went back to sleep.

The next day, You were transferred to the Children's Ward and all those tubes and gadgets were removed from your body. Hey, I'm not in the medical field, ok ... 

You were back to your normal happy-go-lucky self ...

(continue on Dot 56)

 

 Justine, You and Aunty Jessie ... :D

DOT 54 : YAHOO!

Daniel (7+ years old) 

Wednesday, November 13, 2002

 

You opened your mouth ... 

and sank your teeth into the burger, in slow motion. 

Mom will never forget how You closed your eyes, and let out an extended and satisfying “hmmmm” at that first bite, and at each and every other bite thereafter. 

You chewed very slowly, and chomped on your burger so contentedly that it was just simply wonderful to watch You. 

Truly, a beautiful sight to behold. 

Looking at You, Dad had a perpetual grin on his face. 

Justine was more fascinated by the monitors that were beeping around You and kept reading out aloud the numbers that appeared on the screens. 

Dad had also bought some fries, so You really had a nice feast in the ICU that morning.

Your doctor came in a little bit later. 

He was very happy with your progress and was quite taken in with your McD’s appetite. 

Mom thought the doctor would probably not come across a patient who walloped two burgers and a large packet of french fries the day after a brain surgery before You.

Your doctor instructed the attending nurse to remove most of your lines and pads and cables, except for the drainage bag and the IV drip. 

How happy Dad and Mom were when the doctor said that You were well enough to be transferred out of the ICU and to the Children’s Ward. 

Yahoo! 

 

 hmmm - mmm ...

DOT 53 : KETCHUP

Daniel (7+ years old) 

Wednesday, November 13, 2002

 

Your breakfast tray came at 8 am. 

Mom caught sight of a bowl of plain porridge, two pieces of bread with butter and strawberry jam accompaniments, and a cup of hot chocolate. 

Mom made You rinse your mouth first before eating. 

She then fed You, starting with the porridge. You ate without any fuss, one mouthful after another. 

It was always a joy to watch You eat. 

Soon, You finished the food on the tray.

Dad and Justine arrived about an hour later. 

At your bed, Dad gave You a big smile, and held up the McD’s take-away paper bag with your burger orders. 

You gave Dad a half-grin. 

Then You saw Justine, and You had a big, happy smile for her. 

Justine was intimidated by the accordion bag on your head. 

Until today, she does not really remember much of what happened on that first visit in the ICU except for the clear picture of the “bag filled with blood.”

Mom unwrapped your burger, and tore open a small packet of tomato sauce. 

Squeezing the whole packet of tomato ketchup onto the burger, as You normally did, so that the red sauce dripped from the sides, Mom brought your cheeseburger to You.

 

  American breakfast ...

DOT 52 : McDONALD's

Daniel (7+ years old) 

Wednesday, November 13, 2002

“Daniel’s awake! He wants McD’s cheeseburger. Get 2.”

Mom found herself typing speedily outside the ICU ward. 

She could not wait for Dad to receive the message, and could only imagine how happy Dad would be to read that text. 

Mom had asked You what You wanted to eat, and You said without hesitation, “McDonald’s.” 

Your unexpected reply brought a big smile on your mother’s face. 

“Cheeseburger?” Mom had asked. 

Cheeseburger was your usual preference at McDonald’s. 

You nodded. 

“One or two?” Mom had teased, her eyes never leaving your beautiful face. 

You normally took two, but Mom was not sure if You were up to having two burgers at that time. 

You answered with a slight, almost mischievous smile, 

“Two ...”

Two? 

Only God knows how that monosyllable could get Mom so crazily ecstatic she felt herself floating with indescribable happiness. 

Dad said that he had never felt so excited to go to McDonald’s as he did then.

Hotdogs at the Santa Monica beach ...

DOT 51 : HUNGRY

Daniel (7+ years old) 

Wednesday, November 13, 2002

Perhaps You did not dare to move knowing there was something attached to your head … the drainage bag. 

“The doctor doesn’t allow us to put the toys here,” Mom continued to evoke a response from You. 

Giving your hand a little squeeze, she made an effort to speak with enthusiasm, “Aunty Jessie and Justine bought a big bag of toys from Toy ‘r’ Us. Everyone is waiting to see You ...” 

No reaction. 

Not a stir, nor the slightest shake of the head or a blink of the eye. You were just very still, as if You were careful not to move. 

Mom could not take her agonized eyes off your beautiful face. How was it that You could still look so impossibly adorable in that state You were in, was beyond her. 

When You finally, finally spoke, You said the two most wonderful words a mother would want to hear ...

“I’m -- hungry ...”

An immediate wave of relief washed over Mom. She was so completely and absolutely thrilled to hear that, she could not help but did a quick dance of joy in her head. 

Trying hard to contain her delight, she gave You a big kiss on your cheek, and asked happily, 

“What do You want to eat? We’ll sms Dad...”

 

 Having a chinese dinner with the Viva group in Los Angeles.

DOT 50 : STILL

Daniel (7+ years old) 

Wednesday, November 13, 2002

 

Mom literally jumped up from her seat and sprang to your side. 

She wanted to throw her arms around You and give You a big squeeze but all the lines and tubes prevented her from touching You. 

She could only hold your hand. 

"Daniel, Mummy’s here," she said softly as she bent down towards You. 

You were very still. 

The accordion bag was still attached to your head. It would have been difficult for You to move much, even if You wanted to.

The ICU ward was all quiet except for the beeps of equipments in the background. 

Mom said with a smile, “There’s a big bag of toys waiting for You...” 

You remained still and said nothing. 

Assuring You that Dad and Mom remembered their promise before the surgery, she added, “Dad has ordered for your PS2 to be delivered to the house.” 

That was not exactly accurate, but You did not need to know that Dad will be the one delivering it when we get home. 

Mom thought the mention of Play Station 2 would get You to give some kind of response. She ached to hear You say something, anything, but nothing came out from your mouth. 

Your eyes were very much wide open then, but You remained very, very still ... 

 

 Don't move ... sit still ...

The both of You were having your portrait painted 

by the Santa Monica beach ...

DOT 49 : SLOWLY

Daniel (7+ years old) 

Tuesday, November 12, 2002

”They don’t allow visitors in the ICU …”

Dad and Mom decided not to let Justine or anyone else see You in the ICU. 

By evening time, Dad and Justine went home, along with the family members. Before Dad left, Mom reminded him to bring some detox nutrition to help clean up your body from all the drugs and some probiotics to replenish your good flora. 

You slept the rest of the day and night away. 

Mom spent the night on an armchair beside your bed.

Your nurse checked your pupil dilation, blood pressure, pulse rate, temperature etc at regular intervals, and advised Mom each time, that everything was good. 

Praise God. 

Mom passed the night watching You sleep, saying the rosary, and nodding off ... in that cycle. She finally dozed off in the wee hours of the morning, as her tired body ached for some rest. 

It was quite impossible to get proper sleep on the armchair, and she would wake up with a sudden jerk each time she felt herself sliding off the chair.

At about 6 am the next morning, Mom with half-closed eyes, noticed You stirred. 

It was the slightest move, almost not moving really. Sitting and straightening up, Mom brought her hands around her neck, hardly daring to breathe. 

She felt her throat closed up as she saw your lids moved. 

Slowly, oh-so-very-slowly, You opened your eyes ...

 

 Immitating Daniel-San in Karate Kid ... :D

Slowly Daniel ... be careful ...

DOT 48 : DAZED

Daniel (7+ years old) 

Tuesday, November 12, 2002

The doctor then asked, “Daniel, do you know where You are?” 

Very tiredly, You tried to open your heavy lids yet again, and attempted to look up to your doctor without moving your head, your expression slightly dazed. 

Sluggishly, You replied in a lethargic voice, “Hospital.”

You closed your eyes again. 

The doctor’s next question, “Daniel, do You feel any pain?” 

At this point, Mom found herself not breathing. This time, You did not bother to open your eyes, but gave the slightest shake of your head. 

Mom exhaled with relief and inwardly said a prayer praising God for watching over You.

The doctor bent down towards You, and said in assuring words into your ear, that You were doing good and that he was going to have a word with Dad and Mom just outside your bay. 

You did not respond.

It was quite obvious that You were fast asleep. Dad and Mom were very grateful that You were no longer in pain and You seemed to be resting quite comfortably then.

The doctor informed Dad that he had sent the specimen extracted during the surgery to the lab for a biopsy, and they would get back to him with the results in a few days. 

He left after instructing the nurse that, 

“Daniel’s mother will be staying overnight in the ICU...”

 

 Snowbear barks, wake up sleepy heads ... it's time to play! :D

 In Aunty Jessie's house in the States.

DOT 47 : SLEEPY

Daniel (7+ years old) 

Tuesday, November 12, 2002

 

“He was in pain just now …” Mom began. 

“For a short while. He was okay when the drugs kicked in,” intercepted Dad abruptly. 

Mom inhaled deeply. 

Stepping back so that she was standing behind the doctor, she turned to glare at Dad. Dad’s intervention was not at all appreciated and did not go well with Mom. 

What was he - a doctor?

The doctor, the one with the real qualification, went to your bedside and called your name. 

You opened your eyes drowsily. 

Mom was so afraid that You would cry out in pain again, but this time You did not. 

Oh, thank God. 

Your doctor said in a clear voice, “Daniel, who is this?” pointing at Dad. 

You opened your sleepy eyes and turned your head so very slowly to where his finger was pointing. 

You said wearily, “My father” and closed your eyes. 

“And who is this?” 

The doctor asked again with raised voice, this time pointing at Mom. 

You slowly opened your eyes again, and said, half asleep, “My mother,” before your heavy lids dropped back down.

 

 At the grocer's.