Sunday, April 13, 2014

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.

Tuesday, May 14, 2013

Bitten by the bug

Ok, so here I am, at 11.45pm and the kids are snoring.

I am suddenly bitten by the rearrange-my-blog-look bug. So, I have changed it to a darker colour. Hmm ... looks like I need some getting used to. But, if by tomorrow I still can't accept it, I will change it to some bright, colourful template all over again!

Yes, I am a bit mad ... good night!

Friday, January 4, 2013

A happy new year indeed!

Hullo 2013!! It is just great to be able to have another new year. It really is. There is something magical about having a new beginning, a fresh start and a brand new phase.

Every year since the time I can remember, I have always been haunted by making new year resolution lists. I remember I once was asked to do an essay on that in school - yikes! The danger was that nobody told us why we needed one or why it is so important to have one.

Moving ahead to the current year (time flew by!), I do really believe that making a list of new year resolutions will help move us in the direction we want. And if it doesn't, well, heck it, it was fun dreaming right?

My resolutions for 2013 are ...
1) Get fit through more exercises - I have been extremely unfit, LOL!!
2) Get in a slot every other month for a small get away - I think we all need some away time to forget about realities, eh?
3) Monthly trips back to hometown - I have been a horrible daughter last year!
4) Challenge trip achieved by June 2013 - I am in the business where everything is about "show me the numbers!"
5) Pay me first money to be increased - I think I have missed this boat for a very long time. Now, I have to play catch-up.
6) A trip for mum and dad - Parents, first you love them, then you can't stand them, then you can't imagine what life would have been if it were not for them, so this is my little gesture.
7) READ 2 books a month - Ahem, so apart from hoarding them, I'd have to read them too la ... haha!
8) Complete Success Plan - failed to blast off on this plan 2 years ago, gonna start and complete my journey
9) Start and end day with extra hugs and kisses for kids - yeah, I think I am leaving out somebody here ...
10) Practice gratitude giving to people who are in my life - for starters, I thank you for reading my list here!

So there it is, I should have more to add, but let's start with this and see how it goes.

Yes, I know, I am mad.

Monday, September 24, 2012

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!

Tuesday, September 4, 2012

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! 

Sunday, September 2, 2012

Long Merdeka Weekend

31st August was our nation's 55th birthday, but it did not feel much of a celebration to me. I remember when I was small, Merdeka Day was a very big affair. Because it is a holiday, I get to watch TV and the parade that was going on live. I loved the different costumes and the crowd cheering and I have always wanted to grow up and go there to witness it live. 

But somehow, after growing up and living so close, this desire died off. I am not sure if it is because of other things in my way, or Merdeka Day does not seem to be an event anymore. More so, when I look at the state of affairs in the country. Sometimes I wonder if it was better to have been ruled by the British and not gotten our freedom. 

Look at how Hong Kong has flourished under their rule. Small tiny dot on the map of the world, and yet they have so much riches. By comparison, we have so much more, yet our country has little significance to the outside world. 

The main inheritance from the British which is the English language itself has been politicized by the ruling party, what a shame. To deprive its citizens of learning the language used by the world in favour of a language used mainly in Malaysia. Isn't that interesting now? 

And what about the famous changes which happened to our country's history in our kids' text books? 

I did not even bother to switch on the TV and show my kids any parade. It is such a pity. All the fights our nation's leaders did over 55 years ago seems to have been forgotten. 

What about you? How has the long weekend been? My kids had lots of fun. We went to 1Utama, got to do plenty of rides and toy shop visits. Saturday was a day at the hospital for Megan and drama class for Ryan. We had church service and my parents came to visit. Today we had water play at home and Hungry Ghost festival air pollution happening. 

The kids are all tired out. I am too. It has been a long weekend. Thank you Malaysia for the holiday, I hope next year we will see some changes. 

Friday, August 31, 2012

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. 

Sunday, July 8, 2012

My sweet Ryan

Ryan, by comparison to my other kids, is the sensitive one, the one which emotions is played to the max. Very emotional, very sensitive, very quickly cathes on your moods, and also the very understanding one.

Last Sunday, at Sunday School, the teacher ended with asking if anyone has a person to pray for. Being the newbie, he was very brave to raise his hands and asked that the class pray for his sister, who has leukemia. His gesture touched many people in the class without him knowing it. The teacher made everyone promise to pray for little Megan every night. I felt so thankful for that.

A few days later, Ryan asked for some photos to be cut out for his family tree homework. He brought our photos and passed his sister's to everyone in class to show them his sister. I asked why did he do that, he said "So that everyone will know who they are praying for." My heart melted.

Just now, I asked if he wanted to eat out for dinner. He said no, I asked why ... he said "Keep the money for Megan to see doctor." I was near to tears when I heard him say that.

His drama class teacher said Ryan is a very co-operative and polite boy. I have heard so many nice things that sometimes I wonder how he can get so nasty with me. I guess behind all those dreadful scenes, there lie a lovely boy which so many people can see but sometimes it escapes me. My sweet little Ryan, I hope he will continue to melt my heart more and more each day ...

Thursday, June 28, 2012

Almost a year out of employment!

Wow!! Time really flies! July 2011 was the last month I collected my employment cheque. Unfortunately, it was credited into my bank account, so it did not made an impact as it should have on me.

This month, I made my record low in terms of income, could not believe it!! All the hospital visits with little Megan has limited my time to work. But with each visit, we are nearer to the completion of her treatment, so it is worth it.

Sometimes I question myself - would it have been better staying on a job? Sometimes I wonder if it was worth coming out on my own into the big bad world.

Then I see my Ryan smiling at me when he comes home from school. I see him when I surprise him and pick him up from school. "Mummy!", he would call out. I wonder how long he will be delighted to see, how long before he becomes a cranky tween, a grumpy teenager? Or when he thinks it is not cool to be picked up by mummy? Hmmm...

I also see little Megan coming to me in the middle of the day and asking for her "Milk, milk". Or when she lies on the hospital bed, so helpless and depending on me to help her get better. Or those times she will ask me to watch Mamma Mia with her and see her dancing in my heels?

I also see Dylan more than my other two babies. I used to rush off to work in the morning and send them out early, picking them late. With Dylan, I enjoy the morning walks, I enjoy the fact that I can send him at my own time. I like the fact I can cook his meals, feed him and clean his poop in the morning. All the things which will go by quickly.

So, is it worth it? Every damn second of it! Money is not as good as before, but the time I get in return is worth so much more.

As I write this, I remember still being at work and frantically churnin numbers for bosses. Now, I am gonna be playing with the kids in the garden, gonna be blowing some bubbles and cooking them a home cook meal too.

We need to make choices everyday, make them wisely!

Tuesday, June 5, 2012

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 ...