On this quiet night ...

I am sitting here, in the quiet of the night, waiting for my cakes to cool down before I put them into the fridge. I am baking for a very special night tomorrow.

Tomorrow we are having a special thanksgiving dinner. My little girl, Megan, is going to down her last chemo pill on 14 April 2014, and we are celebrating it tomorrow. It is a big, big deal for me, for all of us.

As I bake, I remembered how it all started, how we discovered her plight, how unreal it all seemed. It still seemed unreal now, and it is still hard for me sometimes when I watch her sleep and wondered how strong she is to have endured all the pain, the frightening moments, the needles, the lumbar puncture, the spinal taps, the many cries from her fellow hospital mates, the tears ...

I am so thankful that we have been blessed and we have found our path as we journey these 2 years. I am forever thankful that my parents brought her to Divine Mercy and she found her faith, her belief. In return, Megan gave me hope, joy, strength to endure and fight. Megan gave me Him, I found it, I found my way.

Thank you Megan, there is much I still have to learn. For now, I look forward to celebrating tomorrow night. I look forward to all the years to come where Megan and her brothers remain healthy and happy. May they always be naughty like little children should be, may they have the many falls and bumps that I will kiss, may they have the memories of being a child as they should be, may they always remain in the watchful eyes of the good Lord.

Thank you to you who have been wondering how Megan has been, your thoughts have touched us.

Dexa Round 2

In my last post, I had mentioned about Megan being on steroids. The whole episode is now over and done with. At the peak of the second round, she insisted to having delicious (the restaurant!) everyday! Everyday she will go and ask for the Homemade pesto spaghetti and crispy fried mushrooms. Usually she can't finish the pesto and will have it packed, but she will still insist on having the carbonara too!

After eating a couple of nights with her, we (as in the whole family) could not stomach it anymore and so we had to sit and watch her eat! We were at the same store for 9 out of 10 days! It got to the point the waiters and the waitresses know her name and her orders and the cheese she requests for!

At home, she will ask for pizza. We make this with her choice of mushrooms and lots of cheese on bread. She will sit (im)patiently in front of the oven and wait for the dial to sound so she can eat it! Her mushrooms filled my fridge cause she wanted the fresh ones - Japanese ones, enoki, button mushrooms etc. We also loaded up on blocks of cheese for her to scrape and eat. Sliced cheese also came in and got eaten fast!

She also had a thing for spicy noodles - Cintan. Mamme curry noodles. And she would sit patiently and cut her mushrooms and then insist it is in her noodles. She also drank loads of milk - fresh, powdered and chocolate ones!

Eggs are another favourite. She also enjoys her taugeh. Needless to say, my fridge was fully stocked!

The last time, her obsession with food was much more specific. She wanted her pasta, cooked with cream. Taugeh, stir fried with mushrooms. She also wanted roti canai and chee cheong fun. Each time we go out to buy her food, she would clutch the food with her hands despite not being able to hold all. The obsession then was very intense.

We are due for another course of this med next month. Thankfully, it is a shorter dose. We have another injection to undergo for this protocol on Wednesday, and then we are done! The next protocol is easier, just oral meds and lesser trips to the hospital. Hope all will continue to go well for Megan. God bless!

Megan on steroids

My little Megan is on her steroids again. This time, for 2 weeks. 

The first month, we had it for the whole time and the effects came in after the first week. The most obvious change was her silent mode. She refused to talk nor see me. Her only conversation was to tell us what she wanted to eat, how to cook it and her breast milk. 

She also became withdrawn. It was very difficult for me to accept my baby has changed. It was like I lost her. Then the next change was her water retention and she became huge. Her dresses and clothes all did not fit. We had to use some of Ryan's clothes on her. 

Her hair loss was bad too and we decided to shave her. In the peak of it, she became violent to her dad as well as to herself. She began scratching and screaming and left bloody scratches on herself. 

Which was why we were worried about the meds this time round. The dose has been increased from last time, although for a shorter period. This is the second week. So far, not much violence nor appetite increase. 

Some say it is because her body is used to the meds combo and no longer showed the initial signs. But the last few days she has displayed a zone in zone out mode. One moment she will be happy and talking, then the next, she will zone out and give me a faraway look. This look is the killer. Her eyes will open wide and stare at me deep down, as if asking "What is happening to me mama? What is wrong with me?" I always have to look away cause tears will come to my eyes. I hate it. Thankfully, she zones back in fast. 

Then yesterday, her mood changed when it was getting dark. She insisted that I tell the sun not to go and sleep. She wants it back on the sky cause she wants it to be morning!

Today, she asked me to tell the crows to stop making the sound cause it interfered her clothes folding. 

Both times, I smiled. It was so cute. It was also kind of scary cause she was in tears and begging. But this time, I know this period will pass. I know if I hold on, it will come to an end and my baby will be back. 

I wish for the week to go by quickly. Can't wait! 

Protocol V

Time flew by and we are now approaching the end of our intensive treatment for Megan. 

On 27 August 2012, we started with Protocol V - two more to go and Christmas this year will have a new meaning to us. This protocol is a little longer than the others and is broken into 2 stages. 

Stage 1 involves a spinal jab, 2 jabs to the hands and 5 dreadful jabs to the thighs. I hate the thigh jabs, they make her lose her leg strength. I was told it is also very painful because the meds is injected to her muscles and sends a burning sensation which can last several hours. Usually she cries and will request to be carried instead of her usual active self. This stage also has a dreadful oral steroid involved. And this causes mood swings, change of personality, appetite and hair loss as well. This time, her dose is higher than the first month, although it is only for 2 weeks. 

As I sit and write this, I am contemplating if I should bring her for her jab tomorrow or should I have the father do it. I feel awful having to leave her but I also feel terrible to look her into her eyes and say today we have to get the jab on the thighs. I can't bear to lie as well. One may feel I am a bad mother for deserting her, but throughout the months, I have been keeping a straight face while telling her what to expect ... and believe me, after a while, it gets to you. Sometimes I feel very defeated, sometimes I feel helpless, sometimes I feel I should be taking the jabs instead of her, sometimes I wonder why ...

I can't wait till the second stage comes. Stage 2 has 4 straight days of jabs through the line on her hand, 2 consecutive days of drips and 2 weekly jabs on her hand and then we are done. 36 days in total. I like this one. This is an easy one. But this time, we start a new oral drug. And we do not know how she will take it. 

Doc says while the protocol is the same and the meds are the same, he has to feel his way around her dosage since each child is different. Can you imagine that? I don't know how he does it day after day with all these kids, and still smiles each time he sees us. He even manages a joke here and there. 

We all take our health for granted most of the time, let's say a word of thanks and pray that we will continue to stay healthy. For tomorrow, I shall leave Megan with her dad while I get Ryan to his drama class. Hope she will be ace it again, like she usually does. 

June 4th 2012 - Protocol M

Yesterday marks the start of the third protocol that Megan is going through. This protocol is easier in schedule, 2 times hospitalization, 3 days each ... if all goes well.

I hate the uncertainty of it ... It makes me very uncomfortable, makes me nervous.

This protocol has a drug - High Dose Methotrexate (MTX) administered intravenously into her for 24 hours. Then it is followed by continuous saline drips to help her body rid itself of this chemo drug, plus all the cells which are killed. This drug kills the cancer cells in her brains.

The doctor will tell me that there is a certain level that he is looking at when they test her urine after 48 hours - levels of the meds in her body cannot exceed 0.4. If it does, we will have to continue our stay. This happens to 20% of kids. If it does not, we will be given the last dose of Folinic acid to deal with the ulcers that can happen in her mouth.

And then there is the vomiting and the suppressed appetite and the fever, all probabilities which nobody has given a number to, they say each child is different ... each child is special.

It sounded so technical to me. It sounded so distant to me. It sounded so unreal too.

We are now staying in the same floor we did when we first found out more than 2 months ago. The same feeling is there - quiet, eerie, cold, unreal ... This time our room is smaller, although it is still a single room. This time, Megan cried after less than 24 hours in, she wants to go home, she does not like the feel of the room, the loneliness she feels from not seeing her brothers and her sofa and her Lucy ...

I want to go home too, I want a healthy child, I want the things that so many mothers take for granted - chatty, healthy, happy, naughty, rebellious, screaming children. I did not appreciate them enough before this hit me, I guess I always thought that it will not happen to me. I guess like so many mothers out there, I was too busy to stop and marvel them in their healthy state. I forget ...

As I write this, I am sitting beside Megan, she is sleeping. It has been more than an hour. This is her second nap today. She is tired. Doctor said it is not part of the side effects. Nurses said each child react differently. Mine is tired and her head feels warm. Part of it they said. The meds are working on her brains. So scary, so unbelievable, so needed ...

14th March 2012

Hmm ... most days passes by us with no sure meaning except for birthdays, anniversaries, school term start day, etc. Well, for us, we have added in another date to the list - 14th March 2012.

A day before that, I had brought Megan to a clinic to check her blood as she was bruising in an alarming manner, where her knees and shins are. I had initially thought it was just some knocks she had while playing. When it became 2 new bruises a day, something in me stirred. When the clinic we normally go to did not have the relevant test tube for abnormal bleeding test, my parents came to the rescue and brought Megan to a medical centre where her blood results were known within the hour - she had abnormally high levels of white blood counts (WBC) while her platelets were very low, which explained why she was bruising.

We got into a hospital in Ampang and were told either she has a very severe viral infection which can trigger the bleeding, or she has leukemia. We were told to be prepared for the worst. Fingers crossed, we prayed hard for the results the next day. I remembered being ushered into the clinic of the doctor and was told "Megan is confirmed, she has Acute Lymphoblastic Leukemia (ALL)". I felt the earth moved that day as I burst out crying in front of the doctor. I was clutching Megan with all my might as I wished that it was a mistake. Surely, it can't be!

After that, we had to move to another hospital in Subang as the current hospital did not have the facilities. Everything became a blur after that moment - the discharge, the drive home to have her bathed and packed, the waiting moments in the new hospital, the wheel chair ride .... to the room - 255. It was night and it was quiet, it was eerie, to think that we have a sick child.

We stayed a week in Subang, with drugs given everyday, nurses coming in and doctors visiting. We had questions, wonders, regret, what-ifs, unbearable pain and tears. It was too overwhelming, I was in tears most of the time. My hubby said I cannot cry in front of the kids, the bathroom became my solitary place, where I would cry and kneel and beg for miracles. I was so torn, I could not imagine the future and what will happen to my little girl.

In the last 3 weeks, I have learned that life is very fragile, that life is very precious, that life is so taken for granted that it has a nasty way to shake us up. I also felt very blessed despite this as there were people who prayed for us, friends, family, even strangers, people who held prayer group for Megan, people who included her in their prayer list, people who lent a ear, people who let me cry, people who cried with me, people who brought us coffee, roti canai, chee cheong fun, smiles, to us when we were in the hospital, indeed, these are the people who became angels in our trying moments. Thank you.

These trying moments have also brought us closer to God, the one source of life which I have also taken for granted. I have felt his presence in the quiet of the night, in the halls of the hospital, in the deep sad part of my heart, in my little girl. I once read that "He will not put on us something we cannot bear", and I have held on to it. I believe that everything happened as a piece of His puzzle for us, that this is part of a master plan for us.

We are moving into Week 4 now and will stay on course for the next 100 weeks. It will take us 2 years to kill it off, we will have a lifetime to tell our story. For now, we will take a day at a time, we will continue to pray, we will fight this, and we will triumph over it.

Gymboree, here I come again!

Today I decided to enroll Megan into Gymboree, after more than 10 months of deliberation. Yes, you can call me a terrible mum ...

When Ryan was 2 years old, we made a choice to enroll him because he was the only child then and he did not really have any exposure to other children. He was all alone, to my eyes and I figured then he needed to know that there are other little children in his world. So, that decision was easy.

This time round, with Megan, it was different. The reason for sending Ryan did not exist with Megan. She grew up with Ryan fussing and fighting with her, so she is very aware of other children. She also made friends with the kids in the park, so much for other children.

However, I was afraid that she may not really understand or share similar things with Ryan. Gymboree was really fun. If we did not send her, she would not know who is Gymbo the clown, she will not be enjoying some of the CDs we have bought for Ryan to jump and sing and spin. She won't also enjoy life under the big tent ...

So, today, the decision was made. We will send her for 12 short weeks and then she will be off to school. Hope she will enjoy herself and learn from the whole affair.

Singing princess

Megan is a very happy girl. She sings a lot and she dances a lot and she is not afraid to show it off.

And she seems to take on music and pitch singing well too, courtesy of Ryan's influence.

And sometimes she will burst out into a tune and sing some lyrics I cannot understand. When we ask her what song is that, she says - My Song!

And I am amazed that she can twirl around and not get dizzy too!

I am amazed by her everyday, my little princess.

Infactuated with Pink

I used to say that if I have a daughter, I will not put pink on her simply because I do not want the typical pink associated girl in her.

Sigh, wishful thinking that is.

When Megan was born, it started with little pink laces, then it became pink socks, then it became pink tops, then pink flowers ... and before I know it, she was all covered in pink.

And it is true, girls do look better in pink.

And now that she knows her colours, she will insist on things being in pink. And she is very insistent about it.

And while I do not mind it so much now, I do hope she grows out of it. Cos now it looks like she is in uniform - pink top, pink bottom, pink socks ... I have a pink panther at home ...

I am so sad

Yesterday we were in the car heading towards KLCC for a late lunch from my MIL's place and the kids were a little cranky and tired.

While Ryan entertained himself on his dad's phone, the little girl said this ... "I am so sad ...".

Ok, I know some mothers will be frowning and worried, but I literally burst out laughing! Imagine a 2 year old feeling sad ... and we did not even scold her nor did anything drastic to her that will warrant her saying this.

But anyway, I discovered later that she was actually feeling tired and so, her "sadness". She napped for a while till we got to KLCC.

The things kids say will make any sitcom pale in comparison, haha.

My princess today

She is moving very quickly to her 2 year old mark now.I see her progress from a small tiny baby into an active, smiley, independent and strong willed girl.

She can take off and put on her shoes now, almost perfectly. She knows how to put them on the shoe rack and will take off her socks in the car or whenever she feels is irritating her.

She likes her cheese still and her pasta is usually eaten but will have bits of it stuck on her hair.She really adores food, no joke. And she is not afraid to try out new stuff.

She simply adores Ryan and will take after him, usually leaving me behind. And she gangs up with him too, against me.

She is also highly adaptable, sleeps easily and almost fuss free when sick.

She has now gotten some words together and can form phrases with her cute tongue sticking out when talking.

She recently also started to take on bears as her baby and carries one wherever she goes. It's quite cute really.

My princess Megan is a real joy to have around. May she have many more happy and healthy years ahead. I love you.

Megan's first movie

Last weekend, we brought Megan for her first movie at the cinema - Sammy's Adventure. I have been meaning to bring her earlier, but there was not really a movie which I thought would appeal to her.

However, when this one came along, I was really excited that she could see the sea creatures that we have been introducing to her. Among the animals she knows are fish, turtle, dolphin, crab, octopus and all of these were in the movie!

She was able to sit for about an hour before she became restless and started to climb and walk around. At some point, I realised that she was actually squatting on the ground and not standing anymore, I had thought that she was tired.

But when I reached down to pick her up, I realised she was actually picking up popcorn from the floor and into her mouth!!! Arghhh!!! Thankfully, she did not develop any stomach infection after that.

Ryan went to this movie as well and could not wait for his sister to follow suit. He was enjoying his popcorn and sat through the whole movie.

Even her daddy could not pacify Megan after a while and thankfully the movie ended shortly. Overall it was quite a fun outing and I was so glad that Megan did not kick up a fuss about the dark and all.

Looks like another kid-appropriate movie is in the pipeline then.

I think gender dictates which toy section you go to

Ever since Ryan was a small boy, our visit to the toy shop has always been to the normal baby/ toddler toy section and as he grows, we will be heading to the Lego/ PlayDoh and more recently, to the computer games section.

Megan, on the other hand, has no interest whatsoever in any of the above sections. The last time we went to Toys r Us, she headed straight to the dolls section and began to press and cuddle the dolls there.

Hmm ... isn't that curious? I never thought that the kids are so different at such a young age.

But for sure, I will not buy any Barbie dolls for Megan. I really think that that doll promotes unrealistic views about the fairer gender.

I am wondering now, in a month's time, if we go to the toy shop again, if this behaviour will reveal itself again ...

Megan runs

I have been totally slacking these last few weeks cause I was so caught up with all the packing and unpacking and moving and shifting etc. that I have totally forgotten to document all the development that the kids are going through.

For starters, Megan started running beginning of May, right smack in the middle of all the chaos. She decided to amuse us with her legs stunt that I was utterly impressed with her.

She started with little steps, walking really fast and then it went on to almost skipping and then it went full on to really lifting her legs off the ground and running with little steps!

I know I am darn proud of her, but I also anticipate that mischief will follow her ... and it has, but that is another story all together.

Megan today

Megan is now past her 15th month and it has been a joy to have her around. Among her many amusing ways are:

1) She is a no care in the world girl. If she falls, she will pick herself right up and the world goes on for her. Sometimes, she will wail if it got too much, else she will move right along.

2) She can be wet from playing with water, messy after a meal or even sweaty from so much running, but none of these things will bother her ... seems like she can glide through the messiest of messy.

3) She has this habit of hanging out her right leg over her high chair and she will shake it while eating. Bad habit I know, but it is really funny, always makes me smile secretly.

4) She thoroughly enjoys her food. She is not afraid to eat with her hands, elbows, fingers etc. so long as the food gets into her mouth! And she slurps her noodles in and flashes you a big smile!

5) She is feisty. Fights with her brother and usually uses her nail and scratch you like a cat! Don't get near her when she is in this mood!

6) Last week, we went for a swim and she cannot wait to get out of her float and into the water. She literally jumped into the water without any float, arm floats etc. Gave her brother a real scare! Now, she has taken to arm floats and swims around with ease.

7) Brother's dog really likes her. Maybe because he can identify with a her. Puppy = toddler. And she is also into the pup, except when she is too near her too often. That is when she will turn around a slap him a bit.

8) She also babbles and attempts to talk a lot, a lot, a lot. I am soon going to have to tape her up!

Baby Megan is growing so well, she is now really a darling to be with. Looking forward to her growth tomorrow.

My baby calls me MA-MA

Being a mother is one thing, but having hear your baby acknowledging it by calling you so is another thing altogether.

Megan is now close to 15 months old and she called me the first time, very clearly, last Friday night when I came home.

She flashed me her big smile and said "Ma-Ma". Sweetest thing ever. Made all the cries and pain tolerable now.

On Sunday afternoon, she heard her daddy come through the door while we were getting ready for our afternoon nap. She said "Da-dy". Her daddy did not hear it, but I did and I just want to hold on to that for a while before I let it out to him.

My baby, she finally acknowledges me.

How my kids delight me

In one of those horrible tired days, my kids delight me in so many ways. Amongst them ...

RYAN: Mum, let's play hide and seek.
ME: No, of course not.
RYAN: Why?
ME: Cause I am too big and I have no where to hide.
RYAN: Aiya, you just hide somewhere lo, your stomach is so soft, people will think it is a pillow!
ME: *not sure I should cry or laugh*

But I should go to the gym more often!

In another, I was on the floor lazing around when Megan came to me grinning away and then proceeded to SIT on my tummy. Then, she decided it was more fun to bounce up and down on me!

Now, she is not exactly light and my tummy is not exactly toned, and so, the pain is truly felt! When I push her off, she comes right back at me, grinning. On top of that, she has discovered that it is more fun to poke my navel than hers!

Her ko-ko is of course finding this all amusing and is rolling off the bed laughing!

My baby turns 1

On 9th January 2010, my baby turns into a toddler. She is 1 year old. And this is how she looks now.

We celebrated her birthday at home with my parents and brother. It was a simple family affair with home cook food and cupcakes to add. Ryan loved them so much, he ate like 2.5 of them! Megan, unfortunately, did not take the taste too well since her taste buds are still a little raw. She even spit out her red eggs!

The next day, we had a small party with family and close friends. While it was meant to start early and end early so that the kids are well rested, it turned out quite the opposite. Guests were so fashionably late that the kids were quite worn out.

However, pools like this always save the day. Megan is seen here to enjoy herself thoroughly.

We also had a small cake - all the favorite Disney characters - isn't it cute?

Auntie M brought vodka for mummy but ended up Megan was holding on to it. I wonder if it is due to my alchohol consumption when I was pregnant. Megan seems to be quite drawn to bottles and cans of drinks.

At the end of the day, we were all worn out. We had a great time despite the delay, rain and tiredness. It was a time for me to reflect on those moments leading up to her birth, leading to the day I received my little princess.

Megan - a name I had thought off for more than 5 years ago. A name I finally used a year ago when my little princess was born with all the perfect little features.

I am thankful for each day that I have her. Thankful for the joy she has brought us. Thankful for the tantrums and cries each day for it means she is healthy. And my little Ryan is so much into her that it could not be more perfect.

Happy birthday Megan, may you have a beautiful day.

Megan walks @ 10+months

My little baby first attempted her little steps some weeks back. She was not very stable and would be falling quite a bit. However, unlike Ryan, Megan is able to balance herself and usually eases herself to the ground instead of falling flat.

Because of this, Megan seldom had accidents while learning to walk. At most, she will sit down hard.

That was some weeks back. These few days, she has been steadier and is able to walk about 10+ feet before sitting down. I think her little legs are still a little shaky. But I am proud of her, and she is proud of herself too. She cannot stop beaming at herself.

So there, another milestone to little Megan ... she starts walking at 10+ months.

And today, it is her 11th month .... next month I will be having her 1 year old birthday party. Isn't it great?

Tender moments with my kids

Both my kids are quite different in their own styles. One of it has to do with sleep.

When Ryan was a baby, he slept in the sarung and we would put him in and set the electronic timer in motion and voila! he will soon be in la-la land. However, we were always fearful about the times we would be away on holiday, how will we be dragging the sarung etc. around??

With Megan, we have conditioned her to sleep on the bed. Although she is on the sarung in nanny's house, at home, she goes on the bed.

Because they both have different bedtimes, Megan about 9-ish while Ryan is about 10-ish, the juggling has to be done right so that while I put Megan to sleep, Ryan is occupied with activities, toys, games etc. so that he does not feel left out.

Tonight was no different and he was on the NET playing with his Handy Manny game. I had gone to put Megan to sleep at 9.30pm and by 10.15pm, she was still nursing! Wow, I had not realised cause I drifted off to la-la land already. What woke me was Ryan's soft steps into the room, he wanted to tell me that the computer had stopped working and he wanted me to go have a look.

I gave him a hand gesture which said "Wait, I will come". He looked at me and then he walked out. Some minutes later, I could feel him next to me cause he got bored outside. This time, he gave me a smile. I gestured the same. After a long while, I could not hear him nor see him. Hmm, quite unusual.

When Megan finally drifted off, I went out to find Ryan playing quietly with his toys and he was telling me "Mummy, I want bread, I am so hungry." Wow, I felt so proud of him, cause I thought that he was actually quite matured considering he is only 4 years old.

Later we sat down for a light supper, fresh milk with biscuits and bread. He was happy all the way and finally went to sleep at 11pm. Barely 10 minutes and he already went off to a good night's rest.

While he was sleeping, I lay beside him watching him sleep and wondered where did all those nights go where I had to pacify him when he was sick, when he was agitated by his tooth growing, the nights when he would nurse and refused to be put down on the bed, the nights I lost my cool and the nights when he was still in my bed. Now, my little baby is growing to be on his own and insist that he sleeps with daddy cause he has his own mattress, he is insisting that he does things on his own simply because he is a "big boy". Sometimes he pushes me away saying that he does not need my help. While I am proud, I am also tearful, although they are tears of joy and pride.

When I sleep at night with Megan and I wake with her by my side, I cannot help but to wonder when she will also tell me that she does not need me, when she will finally graduate from mummy's bed to her own. Megan now takes comfort in knowing that I am around her when she fusses at night. She will soon one day be able to comfort herself quite well without me. I cannot wait for that to happen because it means she has grown really well, but to some extent I also dread that moment. Selfish me ya?

Sigh, these are tender moments in my life which I would protect and preserve for me to reflect and smile, one fine day in the future. What are some of your tender moments with your kids?