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. 

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 ...

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!

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 ...

Dylan walks!

Slightly over a month ago, I had written about Dylan attempting to walk. Today, he is walking steadily, and darn proud of himself too! 

After 3 kids and they still continue to amaze me. Small, tiny, little beings, and the next thing you know, they are crawling and then they start to cruise and then, walk!! 

Dylan, by comparison is walking much later than his two siblings, but I guess it is because he is very happily being carried around. He still enjoys it now, despite walking well, so I guess I will continue till he decides otherwise, or till my back breaks!! 

Wonder what the heart breaker will do for me tomorrow?! 

A little step, a giant leap

Last night while putting Dylan to sleep, he stood up and was trying very hard to balance himself. After a boyish smile, he looked at me as if saying "Can I do it? I want to!" And he did - Dylan took a small step forward, then another, before he sat down smiling, pleased with himself.

I cheered him and quickly cuddled him up. Darn! I should have made him do it again, but then, I was too excited.

My baby took a small step forward to start a life of unending journey, one giant leap into the world in front of him. I am so proud of my baby.

Here's to another day of development, another day of cheering, another day of miracles.

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.

So far ...

It has been almost a year since I left my job. It was about middle of February last year when I left for my pre delivery leave and since then it has been a whole year of adventure for me.

How do I find it so far? Hmm ... I must say that it is very liberating. Liberating in the sense that I do not have to plan my errands and children around my office hours, nor the official 5 days of the work week. I know that if I have a 3 hour lunch, I can, and nobody is going to give me some sarcastic remark. If I want to cut, dye and highlight my hair, I can do it in the middle of the day when the crowd is lesser and I do not have to leave work early nor steal time away. I can show up at pre views when the doors open and not have to worry about my work, conference calls, meetings, bosses, etc. etc.

However, as with all things, this does not come without any cost. Sometimes, when you have so much flexibility, you inadvertently head towards a lot more tension relieving activities rather than goal achieving ones. Like, you tend to take more naps, watch tv in the middle of the day, go for tea and then shopping ... or you get carried away with the kids, and then there is the meal preparation which takes hours to prepare and minutes to finish!!

But all in all, life has been good. So now, I have to start recording some of it here .... can't believe it has been over a month since I last updated!!

As the year ends ...

Today shall be the last Friday of the year. It has been a really long and eventful year for me. So much has changed and so much has happened. But, for me, the good memories are to be shared, while I wipe out the nasty ones. The positive ones for me (in no particular order) are: 


1) I celebrated one year in my new house. 
2) Dylan was born, safe and healthy.
3) I had a good confinement lady.
4) All my family members are healthy and happy. 
5) I achieved my Hollywood challenge trip for this year.
6) Ryan breezed through his entrance exam for Standard 1 and was accepted. 
7) Ryan completed his kindergarten years.
8) I attended both Megan and Ryan's orientation days, signalling a new phase in both their (and my) life. 
9) My help at home has been good to us.
10) The sales bargains (esp. books) has been awesome this year - we need this from the way the income and expenses has been behaving.
11)  Dylan started teething, sitting, crawling and cruising ... with relatively little pain. 
12) I had 3 months maternity leave, which gave me the opportunity to do the one thing that this year has so far been the best ...
13) I quit employment after 13 years in it! 


I am sure there are plenty more but this is what I have at one sitting. 


Here's to 2012!! 

Dylan sits ... and crawls

Dylan has progressed so much in the last month or so. At 8 months plus he went from crawling to sitting almost over night. And this boy has lots to look forward to especially when his two older siblings are so active. 

Here he is seen under the Christmas tree where he finds it most amusing with the lights, colour and the many ornaments that he can pluck off the tree. His hands are really strong and he is able to prop himself up and is really very steady indeed!  

Dylan has a very different way to sit - he is usually one sided ... I really love this pose. Apart from giving me so much pleasure to see him sit, he is also relatively safe ... cause he will not fall behind or by the side when he sits! 

After kid number 3, I still never fail to be amazed by the way they develop and learn. They really demonstrate a strong will to persist and learn - I hope to be able to preserve this in them for as long as I can. 

Till another development then ...