Feisty Princess Charmaine

A hundred days without you

2012-01-28T15:56:00.003+08:00

Dear Char Char,

Today is 28th January of 2012. Today marks the first 100 days of our lives without you. Another milestone, one that I had very nearly forgotten until auntie Joan reminded mommy in your blog.

Sweetheart, I've survived the last 100 days without ever counting how many days has it been since that fateful day when I lost you forever. Frankly, mommy is surprised. Surprised that I wasn't counting. Or maybe, I know myself well enough to know that counting and marking every single day without you in my life will only bring so much sorrows and pain that will do nothing to mend my already broken heart and lost soul.

To be honest, I am such a coward that I don't even dare to look back to all the "last year this day" in my life. Why couldn't I just simply reflect and rejoice in the memories of how happy, how brave and how resilient you were for everyday of the last year... After all, I will only have this one chance to use the words "last year this day" for only the next 9 months of my life. And after all, you were always happy, always loving me so much, always smiling in every single day of your life...

But honey, it's so hard to be remembering you, your smiles, your voice, your love and not be aware of what I once had and now forever lost... Am I being a greedy human who doesn't know of contentment? Am I burying myself in this deep sea of self pity and wallow because I am weak? Should I have already walked out of all this misery because my loss is not exclusive only to me. Is it wrong to continue to cry and forget to treasure what I have left with me because I am not the only mother who has lost a child?

People say happiness is a choice. It is my belief as well. Why then am I unable to feel happiness the way I once felt? Does it mean that I am consciously choosing to be depressed, upset and miserable? Baby, are there any sane and rational persons that will actually consciously choose to live life being in so much pain? Mommy is trying though. I wake up everyday reminding myself you did it. You were able to choose happiness instead of sadness. I have to, I have absolutely no reason to fail you. However, almost every action takes an extra amount of effort to achieve. It takes more to smile, it takes more to laugh, it takes more to stay hopeful, it takes more to be excited. And yet, the desired outcome seems to be lesser, even with the more effort. The laughters sound odd, the smiles look a little unnatural, the hope seems a little unrealistic and the excitement doesn't have the same adrenaline effect.

Nevertheless, we smiled, laughed, hoped and continue to be excited about life. Because you have always been.

Just the other day, the TV was showing a Talent Program in China. One of the contestants was a Mongolian little boy who sang almost as beautifully as you did. But I would say you were better! He was 10 and he lost both his parents at a tender age. He sang a song to his mommy entitled "The mommy in my dreams". At that moment, it hit me like a thousand waves. You could hear the pain, the yearning and the hurt in his little voice. Apparently Mongolian men aren't allowed to shed tears and hence he didn't cry.

I realized all of a sudden that I am so grateful that I am the one who has lost you and not the other way around. It has never occured to me that you and Jase could have been the ones hurting so badly instead. All these while, if there had been a way, I was so determined, so willing and more than prepared to give up my worthless life in exchange for yours. I had prayed fervently, day and night crying out to whoever was in charge of human lives: Take mine instead, please!!! Spare my child, let her live!!!

That night, I saw how the little boy was in pain. That night, I remember my own pain. There was absolutely no doubt that both you and Jase could have been the ones suffering such indescribable pain for the rest of your lives... That night, I am oddly and truly relieved that I am the one who has lost you and that I am the one suffering instead. It is such an odd feeling.

Granted, it's not exactly a rational thought but at that moment, my loss and my pain seem to have an oddly positive ring to it. No doubt, mommy will constantly be reminded of my pain, my loss, wishing that you were here to experience all of what life has to offer with Jase and me. Nevertheless, you will be sending me little blessings such as that night, every step in my journey, bringing me moments of peace and relief, even if it's temporary and not always convincing to myself...

One day, all these moments of peace and relief will accumulate enough for my pain to be quietly tucked away in one corner of my heart where you live on forever... And maybe, I might even be able to announce to the world that I am glad you lived no matter how short-lived that was and I am able to appreciate having you for that short and precious 6 years instead of lamenting of all the years that we could have had together...

Mommy still has a lot to learn in life. Thank you my precious child for the wonderful lessons you have taught me and continues to teach me through your memories. I love you my dearest child. I miss you more every single day.

One day, I will learn to smile like you again. This I promise.

Motherhood is truly one of the most magical experiences in life. To all mothers out there, aren't you glad to be a woman called mommy?

Baby girl, I am so darn proud that I am your momma, the one shedding tears for you! One in a gazilion chances, and I am the one! Thank you!

Love,
Cyn mommy

Last Day of the Year of Rabbit

2012-01-22T09:25:00.006+08:00

Today is Chinese New Year Eve.
Today is the last day of the year of Rabbit in the chinese zodiac calendar.
Today is the day where families come together to have their reunion dinner, sit around the table, have steamboat and have fun.
Today, we will be visiting you at the temple to have our reunion dinner.

Today, Jase is extremely excited. He cant wait to have his "Lao Hei" and the crackers on the "Yu Sheng".
Today, our home is beautifully decorated with dragon decors, flowers and many other red stuff.
Today, we will all celebrate one of your favourite holidays.

We have managed to do everything without you.
Theoretically, it's everyone who has managed to put together a Chinese New Year mood in our home like we have always done. Since mommy was very young.

Yup, everyone except me. What was I doing the whole time? I mull in my room, sit on my bed, read up on the 4 kids that we have lost to neuroblastoma in the last 7 days. I watched a couple of movies and pretty much did nothing constructive. The closest 'productive' thing I did was to present myself at wherever whenever necessary. I sit at the dining table when it's time to eat and I happily finish the yummy food, wondering what would you be saying beside me right now.

Gu Gu kept nagging at me to pack. I ignored him totally. I hate it when he does that to me. He doesn't understand that it's not that I don't want to pack. My heart and my brain doesn't work on equal frequency. Or maybe, I indeed DON'T want to pack. I refuse to remove anything that has you in it. I don't even want them to be 'out of sight' to me. I am not capable of walking near anything that has something to do with you and not break down. I can't bring myself to consciously look through your pictures or videos but I love to have you there like they always have been. I don't even want to change the sheet that you have slept on.

Chinese New Year would probably have been a little more pleasant if I didn't have to put your stuff aside.

Jase Kor Kor is mommy's saviour. He started packing our room yesterday and he did a pretty darn good job. I feel so ashamed of myself that I need my young son to be the little adult and yet I am so proud of him.

While I was hiding in my room, stubbornly refusing to pack, everyone has managed to tuck most of my stuff away. I woke up to a home without a lot of my junk. The place looks neater and nicer but it also highlights the new year mood even more to me.

I remember you hopping with your painful right leg last year, getting all excited with CNY. You were on the new trial drug Avastin and it gave you a terrible headache but you never let any of those affect your resolve to have fun and celebrate CNY with everyone. You were so strong, so amazing. When we rolled out our carpet for CNY, I remember vividly how you rolled your body around it... Simply having fun. The carpet is yet to be rolled out today... And I don't know what kind of effect it will have on me.

I am doing such a lousy job baby. How were you able to be so strong despite all the pain and discomfort that your body is suffering from? How on earth do you even manage to laugh and smile through all the pain and headaches? How can a 5 year old little girl be as amazing as you are?

And all that I can freaking do daily is to CRY. When I have no headache, no leg pain, no vomiting, no nausea. But I only can cry. This is starkly different from the Cyn mommy everyone thought of me as.

I am trying though. If given a choice, I would have preferred to be hiding somewhere, away from all these celebrations. But Jase loves CNY the way that you love. The way that mommy used to love. He is happy and he is enjoying himself.

Jase is my everything now. I am hanging in there for him. I am going to go through all the motions because he loves CNY and he doesn't deserve to be deprived of anything anymore.

Maybe next year, I will do a better job. Maybe next year, I will learn to enjoy CNY once more. Learn to truly make every moment in my life count. Learn to face life bravely no matter what it has thrown into my path. Just like you.

I have to remember how you never allowed any of life's unfairness affect you in any way. You never did, my amazing little princess.

I love you princess. I love you so much but you love me more. Because you left me so many gifts through your own sufferings.
I promise I will live everyday of my life honoring you. And I will never stop trying... Until I am able to face life bravely, just like you.

See you later princess!

Love you!!!

Love,
Cyn mommy

Returned to KKH for the first time since you left us...

2012-01-14T19:53:00.004+08:00

11th January 2012 Facebook Status

Just arrived @ KK hospital. First time since I lost you, Char. The shops have
changed in the few months we are gone... and it's tougher than I had
expected! Freaking crying like mad again...

Hello everyone,

I hope each and everyone of you is doing well, feeling happy and appreciating life. Its been awhile. In fact, its been a long time since I actually updated the blog proper. The last 2 entries were all merely copied and pasted from my facebook updates...

Somehow or rather, I just cant seem to bring myself to take out my laptop, look at the screen, think through my thoughts and face them all so clearly in black and white letters. I know very clearly that I will cry at every post I write. There's no escaping it at all. I've been crying at almost entry I type even when I had Charmaine by my side. I am such a big cry baby. There's no denying it as well. Every post was written in tears but even so, the tears shed then don't compare to the tears shed now.

PAIN is a simple 5 letter word. Under wikipedia, pain is defined as
~~~Pain, an unpleasant sensory and emotional experience associated with actual or potential tissue damage.
~~~Suffering, an individual's basic affective experience of unpleasantness and aversion associated with harm or threat of harm.

Almost 8 years ago, I have gone through physical pain of having labour contraction for 3 days with no pain relief. And yet, that was nothing compared to the pain and helplessness I felt that subsequent 1 year later when my ex husband suddenly demanded a divorce. And once again, I experienced another bout of contraction pain without pain relief, coupled with the emotional pain of losing my husband, my children's father and a complete sense of loss. The pain was immeasurable then.

3 years ago, my youngest child, my little princess, who hasn't even turned 3 was diagnosed with cancer, a rare and deadly form of cancer. I almost disintegrated. The pain was beyond anything I've ever experienced. I remember myself crying and crying and crying non stop... for days... and weeks... I honestly thought after all that Ive gone through, my heart, my mind and my body would be numb or hardened to such an extent that emotions couldn't have caused much of an effort. How wrong could I get.

However, I was ignorant. I thought that would have been the worst day of my life. I had no idea how wrong could I get. Once again.

The 3 years journey has continually brought on more and more pain into our lives... Unimaginable, senseless, cruel pain of watching my very own child suffer, deteriorate and simply disintegrate right before my very eyes... Gone... gone from my arms forever...

The human heart confound me completely.

How is it possible that my heart can continually feel so much pain? Even after experiencing so much sorrow and misery, my jaded heart can still surprise me with each new bout of pain it brings on. Its somewhat appalling. Not only can my heart feel the pain brought on by each new fear, or loss I experience, it could even differentiate each new sense of pain from the previous.

If there is a god, have mercy on my heart and my soul. I am very afraid. Right now, I do feel like I have reached the epitome of the Mount Everest of "PAIN". However, I am careful not to buy into that theory. WHY? "WHAT ON EARTH COULD BE MORE PAINFUL THAN LOSING YOUR OWN CHILD?" one might ask. A snigger. One can never know. Time and again, I have been thrown into the pits of suffering to experience yet another pain more painful than my pain. And time and again, my heart is ripped. My heart can distinguish each pain so clearly and correctly. My heart breaks and crushes into more and more minute pieces every single time. Its a miracle that my heart is still pumping blood.

I will not be afraid to admit that I am still crying daily. Some days, I do better; maybe once or twice. Other days, I fail miserably and the tears simply don't stop. The pain that cuts through my heart on a daily basis is so unbearable that I wish no one will ever have to experience it. The pain that I experienced for the first 30 years of my life doesnt even add up to half of what I am going through now. And thats considering I am pretty seasoned for a pain participant. :-)

The pain certainly didnt get better with time either. To say that it continues to get worse seems to be very unmotivating, coming from cyn mommy especially. But hey, please cut me some slack. I have reiterated time and again, I am not strong and truly, I am not.

This is not to say that my life now is void of laughters and happiness. I can still smile and pose sweetly for the camera. Jase and I are living quite an active and fulfiling life. How can we not right? How can we not honour our precious princess and face life bravely like she always has, up to her very last breath. The only thing that I need to work extremely hard on is my crying. Jase is doing much better than his mommy. He hasnt been crying since December and he is able to talk of Char Char positively and happily without a single tear. Yup, he is the strong one, like his little sister. I am the biggest kid in our family, the only one who needs to grow up, instead of my 2 adorable babies. :-)

As usual, I am unable to bring myself to complete this entry as I am crying a river now... Was just trying to look through pictures and put some pictures of Jase and me, saw Char's face and I am a goner... Pardon me...

I will write again...

I miss you princess. I love you princess.

Love,

Cyn mommy

Jase First Day

2012-01-14T19:50:00.001+08:00

Jase called me immediately after school today.
"Mom, good news!"

I replied: "Great, but what's the good news?"

He went on to scream "I finally got my wish!!!"

I went on "And whats that my dear?"

He yelled: "I'm in the red group! Same as Fion!!!"

I laughed so hard. "Oh, the girlfriend."

Repeated the same story to my friend who said "At least he didn't say it's Eric!"

That certainly put things to perspective. Lol. Indeed, there are worse things than my son being 'in love with a girl'!

Yeah! Being in the same group as his girl made my son's day.

Char char, are you smiling like momma too? I love you!!!

2012 would have been the start of your Primary 1 schooling...

2012-01-04T23:01:00.002+08:00

I was walking home today and suddenly tears rolled down my cheeks. I started crying.
The images of YOU and Kor Kor holding hands and walking in front of me flashed. My loss and the grieve overwhelmed and consumed me totally at that moment. Momma is still laying on bed, crying, yearning and pinning for you.

Yesterday would have been your first day in school for Primary 1. I can't stop thinking about you... I still can't bring myself to go near your stuff and pack them... I still haven't had the courage to look at your pictures or videos... Its finally 2012... Beginning of the years where I will never share a memory with you... I don't even have someone who can understand what I am going through...

You have always been so looking forward to attending school with Jase, make new friends... Study well... Yesterday was that day but you weren't there... I sent your brother to school alone... He shouldnt have been alone... You never got a chance at living your simplest wish...

I love you. I love you. I love you.

I miss you. I miss you. I miss you.

Come visit momma tonight please... I need you.

Even if it means waking up to more sadness and tears...

Even if it only lasts for a fleeting moment...

Baby, why do I have to lose you?

A horrible dream...

2011-12-29T23:24:00.001+08:00

I dreamed of you waking up in your coffin crying for me, crying for mama with a face of fear...I burst out crying. I hate it. Are you trying to tell me something? Is there anything that I could have done differently to change the outcome of us... Our family forever changed... Oh I love you sweetheart. My heart hurts so bad. Are you not having an easy time up there? What am I thinking? How could you even have a decent time, away from your mama's arms? 2011 is ending, I don't want it to end baby... I don't want to close this chapter... Help me...

~4 weeks~

2011-12-18T17:44:00.002+08:00

Has it really been 4 weeks since I last updated anyone? 4 weeks of 28 days have flown by in a whizz with Jase and I busying ourselves with the 'normal' life. Jase has been busy going for make-up tuition daily and has taken a new found interest in golfing. I became the the tag along mom to all his activities. Trying to catch up on the last 3 years of his childhood that I had neglected and missed...

Everyday, there are moments when I am reminded of my lost child and I would tear pretty much anywhere and everywhere. But everyday, Jase and I are also smiling and laughing abundantly. We have fun traveling in the MRT first time in years. We had fun getting nearly lost on our first bus trip in years. We hung out at cafe having his favorite tiramisu cakes, watched all the kids movies and started to re-discover Singapore... once again. We have been living in Singapore but yet, our lives had been confined to mostly the hospital and home. We tried to pack as much activities for Char but it was still different. Our world was still different from the normal.

Now, we are back in the normal world, trying to live and fit in like everyone else. It's an odd feeling.

Here I am living the 'normal' life that I had prayed fervently for with no more daily inpatient stays, no more numerous hospital visits, no more obsessing with the magic temperature of 38 Celsius degree... No more witnessing my child suffer in pain, no more researching endlessly for the next step, no more horrifying scan-xiety... no more nothing...

I no longer have my baby girl with me.

I still follow numerous blogs on the updates of other kids still fighting this horrible beast called cancer. I get anxious when they have to go for scans, I pray with the mothers and fathers for good results. I read achingly of the many kids whose only wish is to stay at home for Christmas and be with their family... I feel so much for each and everyone of them... I was once like them... Fearing that the damn fever would strike at the worst of timings ruining a painfully planned schedule to avoid inpatient stays... Little things that mean the world to us living in the other world...

However, I'm now in the 'normal' world, looking in on that other world. I don't know what to feel. Are they in a better situation than where I am at now? Or am I in a better place than where they are at right now? I no longer live in fear of losing my child every single second of my life. My life and Jase's life are no longer dictated by the damned cancer and every chemo or treatment schedule. We can actually plan more than a few hours ahead now. We are actually spending Christmas in a place we chose and having fun.

We are having fun without our precious Char Char.
(Do you have any idea how sick and wrong that sounds to me?)

They, in the other world, have to continue to live in fear and continually ask for prayers to tide them along just because it's so damn tough. They don't know what tomorrow will bring. They don't know if the pain will subside miraculously or the pain will come on abruptly... They don't know if they will see another bump raising overnight... They don't know if they will see more bleeding... They don't even know if their child can even drink a sip of water...

BUT they still have that precious someone that they desperately want to hold and protect...

So, who's at a better place? You tell me. I don't know.

If I really have to pick, can I pick your world instead? Your world without cancer.

Why do both my worlds have to do with cancer and you do not. It's so unfair.
Why can't we have your normal normal world?

Do you even have any slightest idea how blessed you are to be able to hold your child in your arms right now and hear them demand about the most expensive and useless toy on world?

Do you know how much it kills me not to be able to say out loud that I would give anything to have my child back right now because I cannot bear the thought of her bedridden, immobile, in so much pain, semi conscious, unable to eat and drink, bleeding slowly to death?

All I want for Christmas is you...

Having your eternal love

2011-11-17T05:05:00.003+08:00

~~~UPDATED @ 0800hrs~~~
This is so weird. It's almost 4 hours since I awoke. Suddenly, I had a rather blurry image that Char did visit me in my dreams last night. Yet, I can't seem to rem anything. Except that at some stage, I thought curiously in my dream "Hmm, why isn't the tumor in her mouth affecting her eating? She is eating very well" I also rem trying to look clearly at her face seeing if her tumor is still there but her image is a blur... My memory of that entire dream is a blur too... 30 days ago, this time was the last morning I woke up to you laying besides me...

~~~@0400hrs~~~
Awake at 4am now and suddenly missing you, my baby girl. Tears started gushing out and the ache in my heart is so sharp... I love you Char Char. Although mama is crying and aching to hug you so badly... I have no regrets that I will have to live the rest of my life with my tears in my eyes and a huge void in my heart... Because I wouldn't have it any other way... I would still choose to be loved by you and to lose you rather then live a happy life never having you at all...

Of course I would have preferred to have you in my entire life. In all my lifetimes... But if I'm not worthy of your love for a single complete lifetime, even a fleeting moment like what we shared is something I am forever grateful for...

After my divorce, I am afraid. Afraid to experience loss. Mama always look strong to people... But the truth is I don't think I will dare to take my heart out and offer it willingly to another human being and trust that while he holds the knife to cut my heart into a million pieces, he wouldnt.

Honey, you have actually not only brought mama so much love and so much happiness... You have also, through your suffering helped me to understand that life is not about eternity... Love is... As adaptable as humans can be, I prefer consistency over change. I need you. I need Jase. I need my family and friends to remain one of the many constants in my life... I want to know that everyone I love will be in my life forever...

You taught me otherwise. People can say all the politically correct words "Char is always with you", "Char is watching over you even though you can't see her" but the practical truth is I HAVE LOST YOU FOREVER and nothing can change that fact. I will never get to hug you, never get to tell you that I love you, never hear your voice again, never see you again... We fought so hard for each other... Because I simply couldn't bear the thought of losing you forever...

But sweetheart, you left me an eternal gift. An eternal gift of love.
A love that would have me shed a million tears, a love that far surpasses the physical existence of your being, a love that truly will carry me to my deathbed... Even when you are not physically here to love me anymore... For the first time, I realize that I am actually capable of a love like that... Suddenly, I feel rich. Living in the knowledge that I have your love with me forever does alter the assumption that I always had of myself - that I am only capable of a physical and material existence of any relationship. Clearly, I was very immature. All those bullshit are true. :-) We can actually love a person till death even when we will never get to physically see them. Oh, especially that classic bullshit that, "To love someone, you have to let go".

While I have been slowly and painfully "forced" into a position that I had to willingly and openly plead with Heavens to take you away... I am still one very sore mom. Whoever is the universal creator up there most certainly didn't fight a fair match with mommy! (Yup, I'm certainly intermittently alternating between depression and anger in this grieving process!) Or, was it as good a deal as anyone could have gotten because I did get a chance to tell you I love you...

Holy crap. How can I actually feel gratitude towards THAT so-called better place Heavens when it was cleary the HEAVENS that has STOLEN you away from me? You didn't deserve any of the suffering! Yes, yes yes... Everyone experiences loss in their life at some stage and I am no exception. Yes yes yes, there are many countless families losing an innocent child daily around the world... I am not the only grieving mom on this whole wide earth. I know it. I see and hear it daily. All these other kids are kids that I've lived with, kids that I've heard their joyous laughters, their infectious smiles, their determination to fight against all odds even when the odds were zero...

KIDS who WANT to LIVE.

The thing about cancer is that it not only steals a very precious beloved someone from you, it goes beyond giving you eternal lasting pain from a precious undeserving loss, BUT CANCER cunningly imposes every god-damn bullshit it wants into your mind whether you like it or not. And not only does it gives you absolutely NO CHANCE to say NO, it actually goes to the extent of making you willingly buy into its bullshit. Hence, you have not only lost. You pretty much lost in the most 'degrading' way if its even a fight to begin with.

At the beginning of our journey, I was adamant that I will NOT be a loser and 'give' Char up willingly. Although as a mom, I somehow knew that we always would know when we should stop in all matters. It's like a gift all mothers are endowed with, when they become one. The bond that we share physically in that 9 months somehow converts into a telepathic bond no words can explain.

Nevertheless, that mind game that cancer plays with you is totally out of line if there were rules to begin with. I have not once, not twice but up till that very last moment, when I felt that I was quite literally "eating up my own words", so to speak... Everything that I refuses to 'give in' to cancer, I had. And finally, I even to give up my child for the release of her pain and suffering.

Hello cancer, if you are reading this somewhere. Please know that I HATE YOU. Absolutely detest you. You are not only a coward, you don't even dare to fight fair! You think you are having the final laugh now that everything I hated, you had somehow made me do it willingly... To the extent of begging for that so-called better place Heavens to take my child away from me. Laugh as much as you can, because it won't be very long that you will disappear entirely on this earth! And in the very immediate short-run, someone will give us the power to NEVER FEAR you at all! Have you heard of your friend called 'FLU'? We have ripped all his prowes from it and now it fears Vitamin C!!! Just you wait and see, CANCER, you will PAY and live in fear of us humans somedays! CANCER, you will be go down in history as one of those solved mysteries! And then you will be forgotten forever!

BUT OUR KIDS WILL NEVER EVER BE FORGOTTEN. Their love, their smiles, their spirits will continue to live on, for as long as there's humans on earth. You one ugly looking beast! DAMN YOU CANCER! Go burn in hell!

Woah, from crying non stop to cursing cancer, I feel ready to start my day! Time to wake Jase up for school!

I LOVE YOU SO MUCH CHAR CHAR!

Love,
Mama

HELP REQUIRED.

2011-11-15T18:44:00.002+08:00

I'm looking for a talented IT person who would be willing to help me set up a one stop cancer website for cancer patients in Singapore. Anyone, if you think you can help, PLEASE come forth and email me... It is one of my wishes to pass on as little as I can possibly give back to the society that has helped my little princess and myself so much...

I have a rough idea of what is lacking here but I know nothing about IT or website designing or whatever technical lingo... Hence, I will really need a professional to volunteer your services. If you have any friends who might be able and willing to help, please also enquire on our behalf.

THANK YOU in advance.

To each of you still reading our blog, THANK YOU. I always neglect to thank you all silent supporters but while I never explicitly thank you, I never forget. Every word, every encouragement is a very sweet reminder of my baby girl's love. The hearts she has touched. And that her spirits continues to live on. I cannot tell you enough how much all these mean to me.

In 2 days, Charmaine would have been gone for 30 days now...

In the last week, both Jase and me have attempted a couple of 'first's. We went to catch watch a game and we went to catch a movie. The game was easier because it was an entirely new environment and I ended up being too exhausted to even be upset. The movie was tough... I should have bought 3 tickets instead of 2. Char should have been sitting besides me but she wasn't. Everywhere we went in the mall, I saw princessy stuffs that Char would have loved... The crafts she would have wanted to do, the dresses she would have loved...

All the little things, all the beautiful memories we would have together with my precious child... So cruelly stolen by a cowardy disease.

I am crying a little lesser this week compared to last week... But I am missing Charmaine more with each passing day...

Many things are hard. But it doesn't mean that I don't eat or drink or sleep. I am alive and I am living like everyone else. I eat, I bath, I sleep and I wake up to the same routine day in day out. The only variant in my life is Jase. Most of the days, the only duty I am capable as a mom to Jase is to allow myself to be guided by Jase. If he wants to visit Char, I go. If he wants to catch a movie, I drag myself out.

I can smile. Although not as much. I can talk. Although it doesn't feel like I am making sense. I can think. Although I don't understand what I'm thinking about.

I have finally started to write that first chapter...

Oh how I miss you my lovely baby...

Honey, I love you. I miss you. Can you come visit mama in my dreams tonight please?

Love,
Mama

Memories

2011-11-03T17:42:00.002+08:00

THANK YOU to Uncle Charles for rushing this montage of my dearest child out within a day for the celebration of her life... (Cant get the vid to upload, will ask for help next time)

Dearest Child,

Precious precious memories...

All I have now are just memories...

Text messages you texted me...
Pictures...

Many many blood test results, culture results, many many X-rays of her tiny different body parts... many MRI pictures, ultrasound images, MIBG pictures, PET-CT images...

I reach out and all I touch is my computer screen, the feel of paper...

I stare at your Birth Certificate... your Death Certificate... All that is left is of a string of numbers that you once lived and is no longer living...

The greater the love, the greater the hurt...

Is that true?

Words truly cannot describe how my heart feels, how my soul yearns...
The sharpness of your absence, my child, seems to only get worse with each passing day.

I have cried, I have ached miserably for all the other children lost to this horrible disease...

And yet, the pain doesnt even come close to what my body experiences each day...

I always had no words to comfort the other families of their pain because I knew deep down inside that I will never be able to understand... Even when we have journeyed down the same path together, battling the same war for years...

Life is ironic in that way... baby...

Mommy always thought I could hurt no worse than what I was already feeling then.
Yet, life always proves me wrong.

Mommy thought when your father left us, that would have been the worst pain anyone could ever experience in their life and my heart had been strengthen beyond the hardness of steel and my heart was invincible...

I am terribly mistaken. Impossibly wrong.

That doesnt even touch the tip of my sorrow now.

When the continuous stream of bad news hit me one after another... my heart also gradually started building a remarkable wall of defense around it... I got into greater and greater despair with each crushing wave, feeling the gradual loss of my grip on your dear precious life, and yet somehow, my body reacted like a well-trained soldier. It sank deeper into despair but it also took a reversely equal proportional amount of time to bounce up.

I sense it, I feel it, I know it and I see it.
I bounce back. Quicker and quicker each time.
As the news got more and more dismayed...

The initial days since you earned your wings seemed relatively bearable. Almost easier to focus on you being pain-free and at peace...

But oh honey... life is such an irony...

Pain-free is good but love-free is not.
With love, comes pain.
With pain, comes love.

You no longer are in pain. You no longer are here to love.

I am relieved that you are no longer suffering.
But I am so empty without your love.

I need your love. But I dont want you to suffer.

I need you here with me but your body doesnt heal.

I know the choice was never mine to make...
Yet, it felt like I held the key.

I have to be the one to tell you to go even when every cell of my body scream NO!
NOOOOOOOOOOO. YOU BELONG HERE. IN MY ARMS.

I LOVE YOU. But WHY DO I HAVE TO LET YOU GO.
I LOVE YOU. Why does love hurt so much?
I LOVE YOU. And yet even love is not enough.

Someone said LOVE IS THE MOST POWERFUL MEDICINE that can perform miracles.
Our miracle didnt come.
Is my love not enough?

Darling, is it even possible to love you more now that you arent here?
I am suffering in the greatest amount of pain that I've ever experienced.
Yet, for the first time in my life, I am feeling the greatest amount of love I have ever felt for anyone.

Bittersweet.

Did I mention that I am starting to hate the theory of everything having equal opposing forces?

I DO.

I hate it because its true. And I hate to admit the truth in it.
I absolutely detest to glorify such a cruel journey in life with the amazing gifts it brings along.

I am horrified to acknowledge the goodness that has come out of your suffering.
It is beyond disgusting. And yet, it is beyond heartwarming.

What do I do? I am confused beyond my wildest imagination.

I HATE CANCER. But my eye is not blinded by the badness.

GRIEVE...
Sweetheart, I didnt google the meaning. I thought: "TO HELL WITH IT".

During your last couple of weeks on earth, I had deliberated countless times to read up on some DUMMY'S GUIDE TO RECOGNIZING THE LAST MOMENT SYMPTOMS.

BUT I coward out. I didnt dare and I thought: "TO HELL WITH IT".

I had googled, researched, downloaded and read countless of articles on therapies, conventional and alternative, miracle healing, clinical trials, hundreds of pages of too many journals of too many neuroblastoma kids...

Japan, Germany, US, China, England, Russia...

Its my way of life. To read, to learn, to educate myself, and hopefully to beat the crap out of cancer...

You would have assumed that mommy must be reading up on tons of Grieving Books...
Guess what? "NOPE".

I know the experts separate the entire process into different 'phases'...
Can I simply say that I dont know and I dont care???

I am not motivated to self-read and self-help myself.
In fact, I am pretty comfortable with sulking, crying, and just being plain negative about my entire life right now.

I MISS YOU TERRIBLY. I cry loads when I see your pictures and I cry loads when I think of you. I still cant quite get around the idea that you arent here anymore. What does it mean?

The permanence of your absence is a very painful and scary thought...
Your absence brought along alot of confusing questions... You are not here to ease my fears, to hug me, to tell me its all going to be okay because you will take care of me when I grow old...

And I am no longer able to even write coherently...
My mind and my soul are a jumbled piece of mess.

The sun continues to rise each day.
The globe continues to spin each second.
The world continues to function.
Nothing stops for you, or for me.

It doesnt matter that everyday, someone is dying of cancer.
A child. A father. A mother. A son. A daughter. A granddaughter, A grandson. A grandmother. A grandfather. A friend.

Everday, a new baby is born.
This is the rule of life.

A rule non of us ever got a say in.

Once upon a time, I was like everyone.
I had dreams, I had hopes. I had a meaning in life.

I am a mother. My life is to protect, nurture and love my babies.
The practical part of that meaning in life doesnt change for anyone.

We are all someone's child, someone's parent. We are here on earth, to receive the protection of our parents when we were defenseless and pay it forward to our children and the cycle continues...

However, that soulful, spiritual part of the meaning in life differs from people to people.

Once upon a time, I was blissful with innocence and a naive view of the world, and life itself...

Life was beautiful. No amount of hardship, or pain could take that away. I see the difficulties as challenges... never a problem... Everything that my eyes see were charming, beautiful, 'meaningful', wonderful and awesome.

I was hardly a broken soul. Divorce hurt me but it didnt break my soul.

Now, I am a broken soul with a broken heart.

My eyes are suddenly opened to all the pain, the suffering, the loss, the ridicule in life...

Oh my goodness, life is SO HORRIBLE.

I now have clear and unblocked visuals to both sides of the story, so to speak.
My happiness will never be the happiness like before...
My laughters will never be the same...
My joy will always bring along a tinge of sadness...
My smiles will always contain tears for the many kids who fought too hard to stay alive...

Is this what growing up entails?

Is this why when you look into the eyes of grandparents and you always find a tinge of sadness behind them?

Is this why adults can never feel as happy as a child?

Oh honey, mommy can go on and on with absolutely no answers.
Mommy will continue to breath in the air for you, feel almost okay for awhile and suddenly feel horrible next. Mommy will continue to live for you, and walk the rest of the journey for you, without you...

I will continue to cry, smile, and carry on life with your determination, with your strength... without you...

However, mommy will never recover, never forget the pain, never be able to smile as freely... because I am without you...

Sweetheart... You are the best baby anyone could have ever dreamed of. I got really lucky. THANK YOU.

I make you smile. You make me smile.

I love you sweetheart. I miss you.
YOU ARE THE BEST.

Kor Kor misses you too.

We will continue to live... despite the absurdity of everything...
See you soon...

Love,

^^^Forever 6^^^

2011-10-29T10:44:00.002+08:00

Baby,

Good morning! Today is Saturday, 29th October 2011. You spell it as "O.C.T.O.B.E.R."

Darling, today is an extremely hard day for mommy. Our TV is on and Kor Kor went out to fly kite with uncle Paul and gang... So yeah, no one to fight over the TV channels with mommy. They brought Kor Kor out so that mommy can have a good rest but strangely, I just can't seem to fall asleep or even rest comfortably.

Last night Godma Jolene messaged mommy to say that she feels abnormal. Godma Alexis must be having a tough time too. Even 7 year old skyler jie jie has been crying too much... Kor Kor asked mommy this morning if we could go visit you tomorrow because he misses you a lot.

I just went out to make myself a glass of chrysanthemum tea hoping to soothe my throat... Hmm, unfortunately I still have my sexy voice and still sound like a frog croaking...

I tried calling out to you and just talking but it sounded too weird because of my horrible voice. You would have certainly asked mommy "Mama, why do you sound so funny?" And I would have answered: "Because mommy is sick and having a sore throat."

Finally, I decided to come here and write to you. The moment I started writing, my tears just flowed like a waterfall and I feel somewhat relieved. Otherwise, I honestly felt like I was either going to implode or explode. Baby, I swear that I am not even attempting to pretend to be strong or okay. I even consciously reminded myself to break down and let go if I have to... However, its as though I've suddenly gone from very strong, being in control of my body to completely losing control of my body and just weak...

Many a times, I find myself feeling a sudden breathlessness and is hyperventilating when I'm doing nothing. I could be standing in the middle of the shower and it just hits me like that. At that moment, fear creeps into my mind. I don't even know what I'm fearing of but I just feel that away. I had to quite literally stop whatever I was doing and tell myself to breath and relax... That sudden lost of control of my body freaks me out totally and It reminded me of all the times you have had felt that fear multiplied by a thousand more times compared to mine... The day you woke up to your lower body paralysis when you constantly asked mommy to touch and rub your toes because you couldn't feel them... When you asked me to move your legs when you couldn't... I couldn't even imagine the fear you must have felt when your lungs were compressed by all the blood in your plueral space and you couldn't breathe...

Throughout all those times, never once did you show fear in your eyes... Never did the fear and helplessness take away your smiles...

And here I am hyperventilating for god knows whatever reason and I am totally scared to sh*t. I am fearful because I don't know why my body is reacting this way... Almost like this isn't my body at all. Even when I was talking to Auntie Caroline yesterday, I found myself panting as though I had just ran a full 2.4km...

Thank you baby, for listening to mommy rant and whine. I feel better now. Did mommy tell you that I miss you lately? Did you know that when Kor Kor saw mommy writing the letter to you on the day you returned from the undertaker, he scolded mommy for writing too difficult words to you? He made mommy smile through my tears. He said: "If you write such difficult words, mei mei cannot understand at all. You must write simple words so mei mei can read..." Kor Kor knows you so well. I don't think I've ever witnessed greater sibling love than the love shared between you two. It's just so unfair that the sweetest, most beautiful love can't be everlasting...

Baby, I wanna complain again. :-) Did I tell you that I told por por not to wash any of your clothes, pillow cases and guess what, she took everything to wash... I'm just speechless... They were everything I have to remind me of your scent but now they are replaced by the detergent smell...

Actually when I was preparing the stuff to put besides you in the coffin, I wanted to keep almost everything with me... But the undertaker auntie said I definitely must put in the stuff you use everyday... Makes me sad because the stuff you used everyday were exactly the stuff I wanted to keep... Your favorite towel pillow, your Dora blanket that has travelled to NY and China with us... Your rainbow stripes jacket, your white jacket, your pink and white dresses you wore for your concert, your cream colored dress we bought for CNY this year... Your abercrombie purple shirt, your pink layered skirt, your green slacks... Your silver and gold shoes... Your schoolbag...

Honey, because of your leg pain, we will never know your actual height, the last time we measured your height was at least 6 months back and you grew - you were 106cm. I remembered you being thrilled. Thinking about your weight just pains me even more... Throughout the 2 years treatment, you have always defied the odds, when everyone was losing weight due to poor appetite, you were putting on weight. :-) the heaviest you ever weight was 17.9kg and in the last few months, you must have weighed less then 15kg...

Darling, everyone keep saying that you are in a better place now. Every time, I simply nod my head. But deep down inside, I can't say I agree. You know mommy right? Talk about rationality and lack of spiritual connection... :-) Sometimes, I wish to reply: "Have you been there and back? Otherwise, how would you know it's a better place? Besides, if it's truly a better place, shouldn't all of us be there now instead of here?" Nonetheless, the one thing I really wanted to say is: "It really doesn't matter where the place is, the only thing that truly matters is you should be besides your mommy me..."

It's just strange and odd that most of us are all fighting to stay alive in this 'not-so-good' place. The place can suck for all I care; it's the love that makes our lives meaningful, isn't it? Hence, whoever came up with that sentence for comfort is probably the most "lame" (in Jase's words) Haha.

Darling, I've been pondering a lot about life on the other side and it's just so tough... For the last 3years of our journey, I've been quite literally feeding myself with statistics, medical journals and clinical researches... Facts and numbers... Scientific advancement in cancer therapies... It's so much a part of my life now that I can safely say that I am more well-read and armed with more knowledge on first hand side effects than your average doctor... And all of a sudden, boom. The numbers, the researches, the facts, the statistical results all mean nothing. Like seriously, nothing. I find myself grasping at thin air, struggling to understand what transcendental losses are all about. Like I said sweetheart, it's really gotta be the toughest subject ever. I cannot connect with the other worldly you. I simply cannot even understand a single thing. Even though they are written and explained in the Queen's English I am taught in school... Nothing seems to make any sense at all...

However, I cannot stop wanting to know more. My hunger for knowledge that has kept us surviving all these while can't be switched off just like that. I still feel the need and urge to know but I can't... It frustrates me like I'm going around in circles... What is life? What makes it tick? What is the point of living when we all die at some stage? What is in our afterlife? Will we really get to meet again? But nothing will be the same even if we do meet, right? Why do we fight over silly things? Why can't people spend more money on cancer research when almost all of us will have cancer? What's the statistics? Like 1 in 4 I was told? So many questions darling...

Baby! LOVE YOUUUUUU!!!!

Char Char, one thing is for sure, I can't quit Pediatric cancer cold turkey. It might have been easier I guess. However, this medical world has been so much a part of our lives the last 3 years, we have made many friends and losing along with everyone else is simply too much... And I would truly regret your passing if I had chosen to steer clear, like you had wasted your life, your fight, your legacy...

Once I have recovered fully and gathered my thoughts, I would plan on our fight back.

I LOVE YOU BABY. I LOVE YOU SO SO SO SO SO MUCH BABY. MISSING YOU MORE THEN YOU WILL EVER KNOW.

Love,
Mommy

I LOVE YOU CHAR CHAR

2011-10-28T07:51:00.002+08:00

Baby,

How are you doing up there? Mama misses you a great deal, so does your Kor Kor. Mama has been very sick with a bad cough and sore throat and is finally down at the clinic now to get some medication. It's odd how mama has hardly fell ill in the 2 years 8 months journey and the few times I actually did, I could bounce back quickly with some over-the-counter medications. Yet, I've been trying to nurse my cough and throat for almost a week now to no avail. That's probably what mama has been telling you all along - Adrenaline is an amazing drug. And now, without you, my only source of adrenaline, my body is slowly losing it's invisible power shield.

Yesterday, 27th October 2011, was the seventh day since you left us. According to Chinese traditions, we visited you at the temple. I hope you are happy with your new home; mommy has had quite a few headaches trying to absorb all these traditions and trying to make all the decisions in such a short time.

Yesterday, mommy and Kor Kor finally cried while sitting besides your urn and chatting with you. It feels good to be able to cry a little like yesterday. Ever since your cremation day, mommy and Kor Kor have been doing an awesome job; we have not even shed a single tear... And to be honest, mama is starting to wonder and somewhat fear that I must be going insane on the inside. How can mama not feel despair and sorrow? I've read from other aunties that we will live in this odd detached place, feeling numb and void of much emotions... Is this what it feels like?

Mama cannot describe clearly what or how I feel like. I think we look great for someone who has just lost a precious little girl... I keep telling all the jie jie and Kor Kor who messaged mama that we are okay; I am okay except that I feel sick. And it does feel that way... I tell them it must be cheeky monkey you watching over your mama and Kor Kor, making sure that we don't spend our days crying and sobbing away. Btw, you are doing a great job there!

Honey, you remember what you used to say to mommy right? "I am not sad that mama is crying because I know mama will feel happy after crying." Yup, that's what mommy needs now. I know I am strong because I have you but I want to cry, it makes mommy feel normal.

It's hard to process the memory that just last week this time, I was preparing to head out with Gong Gong to select a coffin and decide on the funeral arrangements for you. I bet you must be out there watching and complaining that mommy didn't stay by your side the entire time and sneaked out instead. Forgive me, my love. :-) You know how your mommy is, I have to make sure that I do everything for you myself to make sure that it's done correctly the way you would have wanted.

Last week's memories are a pain and yet very much cherished. I don't know where to begin sweetheart...

You had been bleeding for a few days before Thursday... Well, outwardly anyway. Only Heavens will know how long you had truly been bleeding on the insides, without your retarded mommy knowing. Dr Aung returned on Monday the 17th and I had called her informing her that you were bleeding in the mouth... We discussed and made arrangements to bring you in that night. I remember Rong Rong jie jie calling mommy to tell mommy that your platelets were arriving between 8-9pm and that she would give us a call again when the platelets arrive so that we don't have to wait a long time at the hospital. Wrong wrong jie jie called mommy about 8:23pm that night and I called up our Ambulance auntie Jackie. That night, they took an hour to arrive at our home and we only settled into Ward 76 Bed 16 past 10pm. I remembered only because I remember the TV was on and they were showing .

Our nurse that night was Auntie Salome. As usual, they went about ordering pre-meds for the transfusions and I reminded them of all the IV meds you needed and the timings. I decided to knock off as much as I could because we didn't get to sleep much the nights before when you had more pain... Is it your mommy? Or is it because of the number of times we had screw-ups within the hospitals that I find it incredibly difficult to trust most people... It is not to say that the doctors or nurses are not good, most are but when it comes to my child's fragile life, I will not even allow one single blunder, considering how long you had been fighting and enduring treatment.

(Good grief, I find myself having to edit and amend my grammar continuously. Still can't register in my head that my baby, my child is a thing of the past now. Seriously, how much more cruel can life get?)

Suddenly, sitting in Dr Yeo's clinic now, I remember the early days of your treatments when I had to bring you in daily for your painful GCSF injections...when mommy would force you to put on your mask... When the auntie in the clinic would whisk us to the smaller room so that you not get all the germs from others... They remember you today and that brings me great comfort.

Sorry honey, mommy digressed again! Back to Monday the 17th, we had a platelet transfusion overnight and hmm I think we had a blood transfusion as well. Oh ya, we did because it took forever, more then 6 hours to finish that bag of packed cells. Speaking of which, if there are some of you who only got to know of my little princess Char after her earning of her angel wings, please do not despair that you have gotten to know her too late. You can honour her by continuing to spread her goodness.

PLEASE REMEMBER TO CONTINUE TO DONATE BLOOD AND PLATELETS IN HONOUR OF CHARMAINE. Let her spirit to fight continue to live on through us. Let others have the chance to continue to fight and live on through your precious priceless donation.

Oh dear, I side-tracked once again. :-) Haha, baby you know your mommy can't summarize and stay on track for nuts! I figure the only time that your mommy stayed on track is the time when I was determined to do everything I can humanely do to allow you to live. And I failed... Not only did I fail, I also begged the heavens to give you your wings and let you fly away from me...

So anyway, we finished the red blood transfusions the next morning and spent the next few hours waiting for all of our IV medications to be dispensed by the pharmacist. If my memory serves me right, we only left KKH past 4pm and was discharged by Xiu Hua jie jie. Another long long night and day... But we made it home. Your bleeding actually got better for awhile there...

I was glad and relieved. Throughout those non-stop slow bleeding in your mouth, we couldn't see the tumor as you could no longer open your mouth and we had assumed that you had bleeding gums... And you continued to ask for water to drink, with the occasional "lemony" or "yakult". You even asked for "ribena" once. Now that I know you must have had been bleeding non stop and because you didn't even attempt to spit out one drop of blood, one can only imagine how much blood you had been swallowing back into your stomach... You didn't even wince once my dear child, just how on earth you did all that with not a single word of complaint is totally beyond me and will forever remain so... I honestly cannot even begin to understand your strength... It's like I'm only seeing the small tip of your iceberg of courage, strength, patience and sheer determination...

As I'm typing these words here to you, I'm trying to imagine myself tasting and swallowing blood every second, for days and maybe even weeks... The thought freaks me out and I'm totally ashamed of my own cowardice reaction... You most certainly didn't inherit your strength from your mommy me. They are all mistaken. You were born special and unique, with a level of wisdom and strength many of us may never even know... I love you my child. I miss you baby.

The day you left, you had spend the whole day calling out for me "mama... mama... mama..." and wanting to hold my hands in yours the entire day. Regrettably, I had to let go of your hands ever so often when I had to run to the toilet, when I had to prepare your medication, when I had to eat... They are now forever a memory etched in my brain... That day, you even spread your arms around my neck many times, hugging me as 'tightly' as your frail body allowed... I didn't know... I didn't know those would be the last time you would be hugging me...

Even though I was the one who begged the heavens to give you your wings, it still didn't register... That thursday, Auntie Aishah and Auntie Lilis ace to change your morphine/Ketamine around 4pm and it was also around that time when we were all fussing over your bleeding mouth that I first saw the huge tumor growing on the inside of your left cheek... I just broke down uncontrollably and completely... I just couldn't control my pain and heartache anymore... It really was too much to bear... Most days, you looked like you were doped out and somewhat staring into space but every now and then, you would say a word that's totally coherent and rational like "sheesh sheesh" and it would make me wonder if you were even doped in the first place...

That day when you saw me crying like that, you raised your hands gently and put them on my tears streaked face, wiping off my tears... Oh honey... I remember apologizing for crying again and I told you through my sobs that I am so sorry for so selfishly begging you to hang in there, to breathe and to live for me... That I am ready which is obviously a big fat lie. How can your mommy me ever be ready to be without you? Never honey. It's been more then 2 weeks since anyone had seen your smile... Your charming cheeky lovely smiles... You held on, hang in there for more then 2 weeks to hear your mama say that she is ready... I am so sorry I took such a long time, I really feel so useless... I know I know... You must be saying "NOO! You are the best. And you are my best mama!" I truly hear you sweetheart, thank you. :-)

That morning, I also was so shocked to discover the bedsore that had developed on your frail body... It was so deep and I was so sure I didn't see it 2 days ago... The bedsore, the tumor in your mouth, the non-stop bleeding... Everything just screamed at me that I am causing my own child to suffer... Suffer horrifically... And yet you didn't even make a sound... Nothing... Baby... You were so amazing, I bet you didn't even know how amazing you had always been...

I called Dr Aung to inform her of your bleeding mouth... Your tumor and as usual, we arranged to bring you into KK for another transfusion... But for that few hours, I had procrastinated. Usually, I would have already prepared our bags, called for an ambulance but I didn't... I didnt know why... Not sure if I was just plain exhausted from the day's crying and horrific discoveries... But I just kind of stalled for time... I didn't even arrange for the ambulance... I didn't go shower...

Finally around evening time, I think maybe 6 or 7pm, you suddenly said "Hospital". I had told you that we were going KK for another transfusion to help you stop the bleeding and make you feel better but you had never once asked to go... You mentioning that night just made everything more significant. It's as though you once again knew I was having a dilemma and needed help to make a decision... I can't say that I had a hunch you were leaving but oddly, I kept wondering if you wanted to stay at home instead. At the back of my mind, I even made up the contingency plan to call Dr Aung should we somehow decide not to go KK.

But once again, like magic, you saved me once more. I asked if you wanted to go KK and you nodded your head...

I said OK and called for the ambulance to arrive at 8pm which they did. Somehow, that night, Jase requested to go with us to KK and stay overnight. I said ok.

In the ambulance ride, I noticed you tearing... Were you trying to say goodbye to mama? Your silly mama saw the tears but didn't register. Maybe I did but was in a numb state...

We arrived at KK (the time was slightly past 9pm) but we didn't manage to get our usual bed, we got Bed 17 instead... The bed we stayed in for a long time... The memories came rushing back... You doing your painting while laying down bedridden... You doing your homework while in pain...

You were still bleeding in your mouth... Your lips looked red and dry... I was just plain exhausted from all the crying, could barely keep my swollen eyes open... You asked for "lemony"once more, took a sip but could barely keep any in...

You kept touching your lower lip and pulling it. I didn't know why. You didn't wear your BIPAP mask...

Past 11pm, I looked at you after you made a sound... Your lips went pale white. Your eyes rolled up... I instinctly knew that you leaving us soon. I pressed the alarm for Shao Yang jie jie and she came. I told her something's not right... She rushed to get the doctor... I told you to wait for gong gong, por por and gu gu to come... I kept touching you and called home... Told them to rush down and I kept trying to wake Kor Kor who was sleeping soundly besides us to wake up... Finally the doctor helped me to carry Kor Kor onto our bed... He kept crying non stop... Tears flowed down my cheeks but I didn't sob uncontrollably because I kept reminding myself that I had to be rock solid so that Jase didn't freak out...

Like the sweet child you had always been, your eyeballs rowed back down, as if quietly agreeing to wait... They rushed down in time... And you left @ 0022 hours 21st October 2011 peacefully... Without any struggles...

Like Godma Jolene said, your mouth was opened because of the tumor... Your mommy tried to close them a little but they wouldn't...

Dr Aung also arrived and she asked if I wanted to carry you... I nodded my head... I carry you onto my arms fr the final time...

I talked and made silly jokes... Kor Kor was too devastated and had to carried outside...

Miraculously, after an hour or so, as you were laying in my embrace... Auntie Ainee smiled and said "She's smiling now. Do you want a picture?" I couldn't see your smile as I was carrying you so I laid you down lower on my right arm and sure enough, you were smiling that trademark smile of yours... That smile I had missed... It was a smile that belonged to Char Char, my one and only Char Char...

I LOVE YOU CHAR CHAR. I MISS YOU SO SO SO MUCH SWEETHEART.

Until we meet again...

Goodnight sweetheart.

Love,
Mommy

The many miracles behind Charmaine’s passing

2011-10-25T12:33:00.004+08:00

by Godma Jolene on Monday, 24 October 2011 at 23:20

On Sunday evening, clad in Charmaine's favourite colours of yellow, pink and green, we set off balloons of the same colours flying up into the sky. We sent Charmaine off with smiles amidst tears. We told her to fly... like a fairy.

She had always wanted to be one.

Somehow, the balloons all flew towards the sun and a friend told us it was a sign from Charmaine to tell us that she is fine. We were in tears but we felt a sense of peace knowing that Charmaine is in a better place now.

The logical side of me actually wondered about why balloons float towards the sun but a search on Google warrants no results. I must say that the spiritual side of me is telling me that it’s really a sign and that not everything could be explained by science.

Charmaine’s miraculous smile

For people I know who visited Charmaine at her wake or rather Celebration of Life party as what Cyn mommy termed it, I made it a point to tell them the story behind Charmaine’s phenomenon smile when she passed on. The New Paper (Saturday, 22 October 2011) did not have a report on her smile. Only the Chinese newspaper Shin Min Daily News ( 新明日报) on the same day had a little section on it but since they wrote Cynthia’s Chinese name wrongly in that little section, some people read that portion with some doubt and actually asked me if the reporter was exaggerating.

Ever since Charmaine was brought home from the ICU to say goodbye (Monday, 3 October 2011), new tumours had been popping up everywhere on her little body. The cancer was spreading at an alarming rate but yet, she still fought on in immense pain. By then, she was rendered almost immobile. Her body was degenerating by the days but still, she continued her battle in spirits.

The last tumour popped up on Thursday (20 October 2011) in Charmaine’s mouth on the inside of her cheek. It was raw and bleeding nonstop till her whole mouth was full of blood. With her little lung failing and her mouth full of blood, she could not even close her mouth.

On this very same day, Cyn mommy for the first time was begging the heavens to take Charmaine away for she did not want her to suffer anymore. She hoped for Charmaine to be free and be the happy girl she had always been.

As if knowing that cyn mommy was finally ready for her to go and only upon the arrival of her beloved gong gong, po po, ku ku and godma, Charmaine slowly left us with cyn mommy hugging her and sobbing. All this while, Jase kor kor was lying face down on the bed, holding onto Charmaine and wailing for his char char to come back. He slowly cried himself to sleep while still holding onto Charmaine.

Much to my sorrow, Charmaine’s mouth was still opened when she passed on. To put it very graphically, her mouth was like a little O-shape. I wetted some gauze while cyn mommy used them to clean the blood inside her mouth. Cyn continued hugging her and talking to her in a soothing voice. Well knowing that she’s gone, some of us family and friends alike continued stroking and talking to her too, saying lots of positive words and at times even joking amidst tears.

About an hour later, a good friend of ours told us that Charmaine seemed to be smiling. True enough, she was indeed smiling! Her mouth seemed to have relaxed and the little O-shape actually transformed into her usual toothy grin while her lips slowly pursed into a smile! It was AMAZING to have actually witnessed such a phenomenon with my own eyes!

Could this be explained by science? I guess so but I prefer to think of her smile in the abstract way.

I really have no idea how it happened but I must say that I’ve actually witnessed many miracles in Charmaine’s short life story.

The last miracle

Today, Cyn mommy went to collect Charmaine’s ashes and to her utter delight, three relics were found in Charmaine’s ashes! Being a Christian, the first time I ever heard about relics in ashes was when my hubby’s paternal grandma passed away. She was such a good person and if I remember correctly, she had a few relics! According to Chinese Buddhism, saints or very highly practiced monks may have them. Special people or people with very good karma (basically a very good heart) may have them too. For Charmaine to have 3 in her little body is truly amazing.

Charmaine is really a special girl and I’m not bragging about it just because I'm her Godma. I could go on about Charmaine’s legacy that she has left behind and how Charmaine is such a courageous, loving and thoughtful little girl even right up to her final moments but I would probably leave that for another day.

Once again, BLESSINGS from our feisty princess

2011-10-24T18:17:00.005+08:00

To all of us

I'm comforted, at peace and really happy to see the relics amongst her remains today.

And I believe that it's not only meant for me or her family. Knowing Char, she has most definitely left the relics behind for all who has cared, supported, prayed, laughed, cried, and loved her in her short but bright life on earth.

Hence, I have decided to share this picture with all of you and hope that it brings you comfort, peace and love the way it has calmed me.

I have no doubts that all of us have always known that she is a very special little girl with amazing strength, courage and wisdom but my cheeky monkey probably also knew some of us might need a little more encouragement from her, like her mom and she has once again sent her biggest and most significant sign to her 'retarded' mom. Hey darling, you heard me after all huh!!!

I love you so so so much sweetheart! Missing you with fond memories.

(I'm down with a bad throat and is croaking like a toad. Hence, really needs to rest. Will defin blog more soon once I'm better)
Love,
Cyn mommy

PS: Thanks Charles for the wonderful photos!

I miss you Char Char...

2011-10-22T13:25:00.002+08:00

Char char,

Ma ma misses you so much... So much today... I can't stop crying... I think the reality is slowly hitting me... I miss your touch, your hugs, you holding my hands, I miss hearing you pressing the doorbell non stop continuously to get ma ma's attention...

Yesterday I truly was relieved for you but today I just cant contain myself... It hurts do bad... Will I ever recover from grieving my loss...

I'm so scared... I can't seem to remember much about you, your voice, your laughters... Its so scary... I want to remember everything about you because it's all I have left of you now... But my useless brain is failing me... I'm not dreaming of you, I don't feel any connection with the other worldly you...

I am useless, I can't save you when I've been promising you that everything will be fine... I'm sorry I lied... I didn't want you to be scared. You don't deserve any fears on top of what you were going through...

I know Jase is depending on mama now but I'm so scared that I can't even get a hold of my ownself and how could I even protect him...

Please Char, give mommy some signs... Pick me up, I need your help badly...

I love you so so so much...

I miss you terribly... Oh heavens, this is so tough and so painful...

Love,
Your mommy always...

Wake Details

2011-10-21T09:12:00.002+08:00

There will be a 3 days wake from today until Sunday.

Please bear with me as I sort out the arrangements.

VENUE is at BLK 110 Multi-Purpose Hall, Punggol Fields.
From 21 Oct 2011 to 23 Oct 2011.

It is a celebration of Charmaine's life. Do come dressed in her favorite colors - Yellow, Pink or Green or anything rainbow.

Will update more later.

I'm heartbroken but I take great comfort seeing her smile as she left. Jase isn't doing well. He is devastated and heartbroken, cried the whole night for his sister. Hence, pls help me by showering him with more love and concern as I busy myself with Char's wake.

Thank you everyone for walking the past 2 years 8 months journey with us...

Love,
Cyn mommy

PS: I love you Char Char. Kor Kor Jase is very upset and kept shouting that he loves you so much. Please remember to comfort him the same way you have comforted me. I miss you so much baby girl. Fly happily. Till we meet again.

Char is flying free...

2011-10-21T03:48:00.001+08:00

14 July 2005 - 21 Oct 2011

She is pain free and she gave us her parting smile.

Really too much

2011-10-20T19:01:00.002+08:00

In all my life, I cannot believe that I will actually be begging heavens to take my child and free her of all the pain and sufferings...

BUT I AM NOW and I still can't believe that I'm typing these words out to you.

It's too much and I honestly cannot bear to see my child suffer anymore. She does not deserve any of these...

She's bleeding almost everywhere... And a new tumor popped out within a day from the inside of her cheek. I have been staring at new tumors popping out daily for more then 2 weeks now but this just broke me down completely and totally. I'm beyond heart-broken. Devastation seems like an understatement too.

It's raw and I can finally see it now that her cheek is so swollen. There is no skin covering it and its there oozing blood, staring right back at me... Killing me right there...

I don't even know how to put it down in words the pain... The heartache, the helplessness...

It bleeds non stop until her whole mouth is full of blood...

She can't even close her mouth now...

It just keeps getting worse... And I thought we are already at the worst but no, the beast continues to salvage my child's body and yet, my baby keeps on breathing for me...

Heavens, please have mercy on my child. Please. I don't want her to suffer anymore... Free her and let her be the happy gril she has always been...

I don't know what else to say or do anymore... I lost...

I love you.

2011-10-16T10:57:00.003+08:00

I just got the first "I love you." from my precious child since we got into and out of ICU a couple weeks back.

It must have been weeks BUT it felt like eternity. And it was so very painful not to hear that from her.

And just like magic, she did it again.

She said those 3 precious words to me out of the blue. I screamed out many "I love you"s to her hoping that I could probably get another but no luck.

Nevertheless, that one "I love you" is worth all the pain and heartaches and suffering.

I want it to be deeply embedded into my brain, my heart and my soul.

I love you my dearest child.

Love,
Cyn mommy

"Is it real?"

2011-10-14T19:27:00.002+08:00

My little princess suddenly popped the question this afternoon...

I was caught off guard and somewhat baffled with her question. Hence, I tried to gently ask her again, she spoke through her BIPAP mask which, by all means is an incredible feat, and repeated herself, "Is this real?" pointing her index finger towards me as she spoke her muffled voice... (with the high pressure coming out from the BIPAP machine, I struggled to say even one word and yet she is able to speak a string of words, making it seem easy)

I must have still looked puzzle to her. Then she went on, this time pointing her finger towards herself, "Am I real?"

For some unexplainable reasons, I started tearing... My heart just broke... I don't know why but it just felt painful at that moment... I took her hand, stroke her head and told her, "Do you feel like you are dreaming? Maybe you are just a little sleepy... But I am real, mommy is real, Char char is real, Jase Jase is real too. We are all real, my baby girl. It's real that mommy loves you and it's real that I am your best mama in the whole wide world... Our love is real, our happiness is real, everything we shared is real. You are really by my side right now and I am really by your side right now..."

She shook her head and replied "No. Because I don't feel real."

I tried to comfort her saying "You are just tired, that's why. But don't worry, I really love you alot, alot more then you will ever know. And I know that you love us alot too. I know you really love your family alot and believe me, we really love you alot alot..." It was all I could mutter before I started tearing badly again...

She just knocked her head and still seem dazed... Probably too tired to say more...

Each day, I can see life seeping alittle bit out of her and each day I can see a new lump somewhere... Ita absolutely killing me... It's such a horrific way to fade off, no one... Not even a senior centurial deserves anything like this... it's just beyond devastating... To watch the very little one you have always loved, protected and craddled suffer like this... And there's not a single thing I can do for her... Nothing... You just go through the motion daily, watching every single haunting moment and yet, you tell yourself to look at the silver lining not too far away... That maybe our miracle is just 1 second away, 1 minute away, 1 hour away, 1 day away...

I want to embrace all of these moments... The courage, the pain, the heartache, the tears, the sadness, the happiness, the fears and the love... I want to remember everything... I am just not sure if I have the capacity to remain sane and calm while always being reminded of her suffering...

This has to be the absolute worst trial you can put a sane human being through... And yes I am supposed to come out stronger then most of you... But oh heavens, what strength is that from a heart forever broken, forever in pain, forever yearning, forever lost...

I speak like I've lost... Because it is indeed what my heart and soul feels...

Somewhere out there, my mind keeps playing like a thriller movie... That our turnabout is going to be spectacular and nothing short of an amazing miracle...

But somewhere out there, I've lost too many, simply way too many brave little young warriors to this scrupulous nasty beast called neuroblastoma...

It's not eternity that I crave for but all the experiences that we could have together... The growing up... The little promises we made...

I am not strong. I just follow the lead of my warrior princess...

At that moment when I was agonizing over whether to intubate my little char, she put out her pinky finger towards me and made me pinky swear not to intubate her again... And that's it, she made the decision for me, just like every single time, like magic, she somehow always know my heart...

I love you my dearest child.

We are fighting on, until you say it's time for you to rest...

And in the meantime, please continue to pray only for the good things.
Thank you.

Love,
Cyn mommy

She's fighting fearlessly...

2011-10-12T19:34:00.001+08:00

BUT so are the damn bloody freaking sick NB tumors.

Feels like a nightmare daily...

I wake up and I see some new tumors popping out somewhere or I see the existing tumors becoming bigger.

Its so never-ending...

She has so much pain especially when she's awake... Hence, her awake hours are fewer and lesser these days... I wish for her to be asleep too... Because it's too painful to watch and hear her cry out " VERY VERY VERY PAINFUL"...

I can barely recognize my poor child... Without her smiles, without her chattering, without her "LOVE YOUUUU!!!"... My poor char has the same face but yet she is nothing the sweet, loving, happy little girl she was...

It's like Heaven is giving me more time with my little girl which I absolutely am grateful for BUT while I can feel and touch my baby... I honestly have NO IDEA what can I cherish with moments like these... Its such a cruel thing to do to a mom... You want to hold on to every second and imprint them as deeply as possible into your memory lane but these are such painful moments that will probably haunt me for the rest of my lifetime... My whole mind is just so messed up...

And then you worry about the tumors that are literally pushing out through her skin... I'm so sorry for being so graphic but it is every bit the reality I am living in now...

On days when I am delusional or hopeful, I urge myself to continue the fight and that the fact she is still alive and fighting is the reason that Heaven is giving me a chance to save her... So I have to think, and keep searching for an option...

We have sort of gotten into a routine with nursing Char at home and like the sweet girl she always has been, this really is the easier part...

Changing oxygen tank every 3 hourly, IV medications, taking her oxygen stats, BP, checking her lungs air entry... We have a mini ICU in our room...

And of course, still having to deal with systems that somehow doesn't work well for people like Char and me... Singapore Palliative and Home Care development still have a long long way to go and tons of improvement to be made... Or maybe not, because believe it or not, Char and me always ends up being the first case in KKH history for whatever reason... I've already learned quite some time ago that we are a minority but minority really seems like an understatement... It's more like we are the ONLY...

Amidst the crapiness in the systems, our silver lining lies in some wonderful amazing doctors and nurses (healers) who always go beyond their calls to try and make my little princess comfortable... It makes a world of difference compared to having to deal with some who can only say "I don't know" after all the years of education and training and work experiences. Let's just say that it gets on my nerves whenever my 7 year old boy says that to me... I have to literally knock myself on my head before finding enough patience to reply my Jase "why don't you try to think a little bit more? Explore, guess and you might just figure it out?" More often then not, I find myself having to say the same replies to the experts I'm depending on.

Jase has been my most amazing helper around the house albeit his trademark clumsiness. He is the one pillar that has provided a constant. He is comfortable in our little room with his very sick sister. His innocence, his nonchalance (not the negative way but a positive unaffected attitude), his confidence in taking over whenever I need to run out for toilet breaks, even his constant monkeying has helped to maintain a certain level of much needed 'normalcy'... Nothing is quite normal here but yet my boy is not at all intimidated with our new situation... Maybe because he's been living this life the past 3 years himself... It's sadly his norm to a large extent...

Please pray for us... Pray for Char's continual healing... Pray for peace and calm... Pray for Char to be pain free...

Thank you to one and all. Your words have always provided me a great deal of support...

Love,
Cyn mommy

She hugged me so tightly...

2011-10-07T19:11:00.002+08:00

We are inpatient for a platelet transfusion...

It was quite an adventure to get Char here... Believe it or not, I called at least 4 private ambulance hotlines and they were all busy at noon, telling me that we had to wait up to 3hours for one to be available to get us to KKH...

Char was in so much pain, crying out non stop. Finally, I decided to call 995 and got an ambulance...

As usual, as per worldwide standards, we waited for close to 4hours for platelets to arrive...

I can see tumors popping out everywhere on my already suffering child... It's so heartbreaking and devastating... And they are all causing her new areas of pain... It's totally inumane. I've heard stories of tumors popping out everywhere disfiguring their child... pathological fractures... Excruciating bone pains, breathing difficulties... Reading about them doesn't even come close to witnessing everything happening right before your eyes and yet being Char's mom... The person who is supposed to protect her from all harm, I am rendered totally helpless except to try ad knock her out with heavy narcotics...

This afternoon while at hospital, she opened her eyes half way, in a drowsy semi awake state, she stretched out her hands, reached for my face, wrapped her arms weakly around my neck and gave me her tightest hug, with whatever little strength she has... A hug I will never forever... I feel so loved but yet I feel so undeserving... I can't save her. I don't know what to do...

Please continue to pray... Pray for her lungs to recover their normal working function, pray for her tumors to stop growing, pray for her to regain her strength, pray for her marrow to start producing platelets and haemoglobin on its own, pray for her body to recognize the errant cancer cells as foreign and get its own immune to attack those cancer cells and kill them all... Pray for ALL her cancer cells to start dying off on their own because its how nature wants them to be... Pray for all her organs to remain strong and healthy...

Pray for my wisdom to find her the right medication to kill all the cancer cells and get her immunity up and working soon... Pray for time to be our side...

I love this little girl of mine too much... She needs to stay here where I am at! She belongs in my arms... And nowhere else. She loves her family too much to be away from them... So please let my baby stay here with me, with Jase, with us... This is where her home is... The only and the best place for her to be at... On earth, by our sides, with her family...

I pray that all my prayers are heard...

Healing starts now...

Love,
Cyn mommy

PS: Thank you to everyone who drop words of encouragement for me and my family... They mean a great deal to us even though I always forget to mention... They keep me going and constanty remind me that I have an army of supporters behind us...

THANK YOU.

A day I want to forget and remember forever - 2nd Oct, 2011 Sunday

2011-10-05T19:04:00.005+08:00

Why am I having so many conflicting emotions all at the same time?

I'm scared but yet I'm still brave.
I'm worried but yet I'm safe.
I'm suffering but yet I'm glad she's still here with me.
I'm tired but yet I'm still holding the fort, doing more than I ever have.
I'm insane but yet I'm sane enough to function.
I'm angry but yet happy she's still fighting.
I'm hurting but yet I want her to stay with me.
I'm not at peace but yet I'm telling myself to be.
I'm almost dead but yet I'm still very much alive.
I'm numbed but yet I'm loved.

I feel so alone but yet I'm surrounded by friends and family and even strangers.
I feel like it will be impossible to move on but yet I know life goes on.
I'm nothing and yet I'm everything because I have the love of my kids.

My little princess seems to have made up her mind or something. She doesn't want to take her medications. Not even for me, anymore. She used to eat and drink for her mama me and probably live for me even. Now, she doesn't want to. I couldnt convince her. She hasn't smiled in days. She doesn't even talk at all.

But it was a good day by our standards...

Those were typed on Wednesday 5th Oct, 2011.

Today, the 6th Oct, 2011 Thursday~~~

We sent her blood to check her counts this morning and they were decently good thankfully.
HB 11
Platelet 71
ANC 1.5

But this morning, we woke up to a huge scare... She awoke to excruciating pain in her left chest... I had a listen with a sethescope and heard some weird noises... I had to press many reduces of morphine and ketamine before she finally dozed off again...

She seems a little better now but I'm still scared stiff...

Is this what living hell is all about?
I'm constantly wondering if this is the last moment I will ever get to tell my baby that I love her so much... Every little small occurrence will send my heart panicking and yet I had already promised a very good friend of mine that I will remain as solid as a rock for Jase when the moment comes. And most importantly, I had promised myself that I will remain as calm and as sane as I could when the moment comes so that I can do every single damn thing a mother shouldn't be doing for her own baby. I want to make sure everything is as smooth and as best it can be for my child...

And yet, is this what the greatest love is all about?
My little princess, my char, my baby is still fighting against the excruciating pain from her bone mets, the breathing difficulties, the immobility, and every little thing that is causing her to suffer... She is still fighting to stay with me, stay with the family she loves... This is the most love I've ever received from anyone and it will be the greatest love I will ever experience my whole life.

I don't dare to leave my baby for fear that I may lose her... I don't know what to expect and I don't really know if I can be as brave as I stubbornly am insisting to everyone that I CAN and I AM. I don't really care if everyone thinks I'm overwhelmed or I'm crumbling. Fact is I am still standing tall alongside my little warrior, lack of sleep or not...

I am thankful for my good health and my adrenaline keeping me going. I am so proud of my son Jase who has stopped schooling and who is stepping up a few ranks to help me with taking care of Char round the clock... I am so grateful to my friends rallying around us...

Most importantly, I am treasuring every single second of my my time with my baby princess...

Char spent more then 6 hours yesterday awake, watching some TV cartoons and even chided Jase for blocking her view and changing her channel. I almost cheered out loud when I heard that. It's like my princess is back!!!

But today, her chest pains are really bothering her... She just asked for water, took a few sips and requested that I put her back on the respiratory bipap mask...

Dear Heavens, please have mercy on my child. I am never in tuned with the spiritual realm of existence and wished I had one... To say "I believe" doesn't make me feel very in touched with that elusive thing called faith as well. I don't know what is the right way to pray with my heart... I don't know how to commend for that miracle that others successfully received...

I am doing everything I can possibly think of... I cried, I begged, I pleaded, I kneel, I screamed, I cursed out in frustration, I tried bargaining with my life, I whispered, I tried to think positively, I asked Char to tell her cells to listen to her, I told her not to leave me became I NEED her more then she needs me...

Buddha, God, Whoever is up there, please hear me out. I don't know how to convince you why you must spare my child and allow her to live... I think of all the 4 kids we lost last week to neuroblastoma worldwide... I am devastated and I am so scared...

Give me a sign... Give me a hint or anything to help me save my baby...

I am probably the world's greatest actress because the doctors and nurses see me as a very different, rational and realistic mom. It's all an great act! Either that, or I have one of the best presentation skills to position myself as a sane human being in order to convince the doctors to treat my child the only way I can think of...

I speak like I'm realistic and logical about where we are heading towards and sound like I am the world's most prepared mom when it comes to losing my child BUT the TRUTH is I am breaking apart and my baby's horrifying suffering is killing me.

The only reason I am sane and still functioning is because she is still breathing and warm besides me...

PLEASE PRAY FOR MY CHAR''S MIRACULOUS HEALING HERE ON EARTH.

Saying goodbye?

2011-10-04T17:54:00.004+08:00

This is an extract taken from Godma Jolene's Facebook note and blog post.

:

I’m sorry for the lack of activity here, on my Facebook wall and messages, on ourfeistyprincess facebook group and ourfeistyprincess blog and on email. Comments, wall posts, emails, sms have all gone unanswered and I’m only in contact with a few people these two days. My sms line has also been misplaced. I can’t find it anywhere at home or in the car. When the rain stops, I’ll search the car once more so for those who know me, please text me on my main line instead.

I was sick with a very bad headache and nausea for the whole of yesterday and turned in before midnight (an unsually mean feat for me) after I got back from Cyn’s house.

I was awoken by the rumbling of one of the loudest thunder ever which shook the whole room just now and here I am being unable to sleep and deciding to surface on the internet after 2 days.

At about 4.40am on Sunday, Cyn mommy texted that my god daughter Charmaine was in ICU once more. It was the other lung which was not working this time round and that she was very scared.

About 3 hours later, cyn’s brother texted that it was not looking very good and that there was nothing much the doctors could do about Charmaine’s breathing difficulties. Unlike the last time when the condition could be alleviated by draining the blood out from her lungs, they were not able to do anything this time except to provide her with oxygen.

I turned in at about 3am that Saturday to Sunday morning so I completely slept through all the sms tone and saw everything only when I woke up. My mind drew a blank when I read the messages and I just lay there in a daze.

~

I’ve always had positive feelings about Charmaine.

When she was first diagnosed with stage 4 neuroblastoma in 2009 and was given only 10% chance of recovery, I believed that she would overcome this and she did. She had since outlived her age ceiling for neuroblastoma patients.

When she had to undergo her first major high risk surgery, I believed she would pull through and she did.

When she had to undergo another high risk surgery sometime in May this year, I was not in Singapore. Cynthia did not tell me about the risk as she knew I was overseas and did not want me to worry but I’m glad Charlene called to let me know exactly how risky the surgery was. Miles apart, I prayed for Charmaine and sent her some good energy and once more, she did not surprise me with her ability to overcome another obstacle yet again.

Throughout the whole 2.5 years of battling cancer, I’ve always BELIEVED and at the back of the mind KNEW that Charmaine being so feisty, would be able to overcome all the obstacle thrown in her way. Needless to say, I was always proven correct by Charmaine’s sheer determination and fighting spirits. I’m very sure that all the prayers and unfaltering words of encouragement from our family and friends as well as from our loyal readers and supporters helped tremendously too and we’re always grateful for all the support.

The last time Charmaine was in ICU a few weeks back, I did not have that little voice inside me telling me that it would be ok. I was so scared that the little voice would be right.

These few months, Charmaine has been really sick. She has lost the ability to walk as there are cancer cells and tumour in parts of her legs, her pelvic bone, nerves around her spinal cord and recently her lung and hand. She is bed-ridden and can’t move her swollen legs and the whole of her lower body at all due to the sheer pain of cancer eating her up.

Many a times, some people would advise Cyn mommy to do whatever that could keep Charmaine comfortable. Some very insensitive people also came and started to pray for God to take Charmaine with him rather than to pray for healing. At such times when a mother is in a highly depressed state, the least you could do is to offer some soothing words even if you know what’s in stall. This is not denial. This is empathy and compassion.

We kept asking for healing. We kept telling Charmaine to fight. We kept hoping for miracles. That doesn’t mean that we’re in a denial to the truth that Charmaine may say goodbye to us soon.

Some people have the gross misunderstanding that Cyn mommy is the one holding on and getting Charmaine to fight till the end without caring if she is leading a qualitative life. Some people suggested letting her go and not to hold on anymore. What these people do not know is that Charmaine herself is the one with such strong will and determination that she is fighting the monster with her every breath.

Many a times when there is an anguished decision to be made, Cyn mommy would be at a loss and doesn’t know if she is making the right decision for her daughter. However, Charmaine would be able to point Cyn mommy in the right direction by telling her what she wants and feels comfortable with.

Charmaine may only be 6 years old but she has the understanding and maturity of someone way beyond that age. Hence before Cyn made any decision, she would look at Charmaine and listen to her and be at least surer that she is making the right decision.

Some of us personally know that Cyn is not giving up precisely because Charmaine herself isn’t giving up yet. How could anyone have the right to rob the patient of her chance of fighting and telling her to give up when the patient herself is fighting so hard and isn’t giving up at all?

~

Then on Sunday, the little voice never came.

I was unsure yet reassured at the same time. It’s a weird feeling but at least I know that little voice did not give me any negativity and that itself gave me some hope. Hence at the back of my mind, I thought that Charmaine was going to show us that she would overcome this hurdle yet again.

However when I reached KKH, the situation looked really grim. Charmaine was having so much difficulty breathing with one lung not working and the other lung bleeding a while back. Looking at her little chest heaving up and down violently in short gasps and seeing how distressed she felt, I really don’t know what to think.

The situation was so grim that Cyn mommy had at last did her mother’s duty of letting Jase know that his little sister may leave us anytime. This was something which she found so difficult to do. Jase knows how sick his mei mei is but I think the thought of having to say goodbye to mei mei is simply too overwhelming for him. Tears started flowing and he was speaking incoherently that all I could so was to hug him real tight.

The situation was so grim that we were allowed into the ICU room without wearing our masks at all. The medical staff did not adhere to the two-people-at-a-time and no-children-in-ICU rule. Jase was also allowed into the room without having to be snuck in. A crowd of family and friends were also allowed to stand outside the room to see Charmaine. It was as if Charmaine was running the very last leg of the race and that everyone was allowed to utter their last goodbyes to her.

At a point of time, we were all holding her hand and crying bitterly as Cyn assured Charmaine that we were all around her and she should not be scared as she would be going to a pain-free place where she would be able to walk and run freely again. She also reassured Charmaine that if she was really tired, she could go and sleep and that mommy would be able to understand. I've never heard Cyn saying all these to her before and I know it pained her to be saying these words. Cyn even asked me to take a last photo of their family of 3 using her i-phone.
I did not want to believe that it would be the last time I was going to hold her hands even as tears were streaming down endlessly. Nevertheless, Charmaine was in so much agony that I thought she probably felt like she did not want to suffer anymore.

Charmaine was conscious though she did not talk much but she made her intentions clear that she did not want to remain in the ICU and so arrangement was made to shift her back to the cancer ward.

Her condition remained the same after I left KKH with the last remaining friends texting that her condition was status quo.

~

Yesterday (on Monday), there was a flurry of activities around Charmaine’s bed as various teams of doctors and nurses who have been taking care of Charmaine had talks with Cyn mommy on preparing Charmaine. After two months at KKH, Charmaine would finally be going home.

There’s an incredibly large amount of logistics and new things to learn for Cyn mommy and her family. A few of us stuck around to help out with the packing and transporting of equipment and supplies to cyn’s home.

In the meantime, Charmaine’s condition remained the same but she was able to utter one-word or few-words phrases through her oxygen mask and whenever she was in distress, she would cry a little and holler for mummy. Cyn would constantly be talking to her, encouraging her and she would always reply with a “mm?’’ in a rising ending tone.

After a few hours of frenzy, cyn’s bro and I finally got home to help set up the room for Charmaine’s ease in transferring. About half an hour later, the whole ambulance team with some nurses arrived. Even Dr Aung (whom many of us have utmost respect for) dropped by to visit Charmaine.

While waiting for the equipment to be set up and with Charmaine still on the ambulance stretcher, I patted her hand and reassured her that Cyn mommy was only leaving her side for a while to settle some things in the room.

These few days, Cyn had always been a hand away from Charmaine and even if the former left to go to the toilet, Char would feel ill at ease and would ask for Cyn mommy. During the whole time she had breathing difficulties the day before, she did not want to hold anyone’s hand for long and preferred for people not to touch her. Thus, I was taken by surprise when Charmaine reached out and held my hand and tried to say something which I could not really hear. She started touching my hair and caressing my face as if she has never felt my hair and face before. As usual, when I talked to her, she answered “mm?” in that same rising lilt.

Once she got settled onto her own bed, she started to feel like her normal self again. She was talking so much through the oxygen mask that we were all quite amazed. Nobody could ever talk that much through an oxygen mask!

With drinking only water the whole day, her appetite crept in and she started asking for Udon noodles, fried rice and even fried chicken from that Chinese restaurant in NYC! When she saw Jase kor kor drinking the last Yakult, she asked for one bottle too and por por (cyn’s mother) immediately went down to buy a packet. She started talking about wanting to make a head band with butterflies and to do some craftwork with cyn mommy.

It was really reassuring to see Charmaine’s improvement in condition. She was brought home to enjoy her last moments at home before saying goodbye but it seemed like her condition had improved tremendously!

I’m truly happy beyond words but alas my headache and nausea which was plaguing me the whole day got worse and worse. Retched but nothing came out and so I had to excuse myself when the next close friend popped over with her family to cyn’s place later in the night.

With some washing up, I crawled under the sheets and slept like a baby till the thunder rocked the room.

I’m glad that my headache and nausea is gone for now but I’ve only gotten 5 hours of sleep so I’ll be heading to bed once more and dropping by cyn’s place later. The weather is so good for sleeping in and I’m so glad that I’ve got the luxury to do so. I’ll go have positive thoughts and sweet dreams without the headache and nausea to mess with my mind.

I hope for a miracle to happen and I have much higher hopes after witnessing a change in Charmaine’s condition.

You know, as logical and as prepared as I can be, I still believe in miracles.

I just found out about this video which somebody made for Charmaine when she was still mobile.

I brought my tired child home to say goodbyes...

2011-10-03T23:53:00.002+08:00

It's the hardest thing I've ever had to do and it's killing me.

Had the talk from all the various doctors and nurses who has always been helping me to take care of my little girl...

Everyone is withholding back tears...

I spent some time trying to force my brain to remain in my head, my soul to not disperse and my tears from not gushing out... To learn what I have to do when the time comes, who to call to certify the worst nightmare in my life and to also learn for the first time in my life that death from cancer doesn't require autopsy... Standing amongst the very doctors who have always been helping me... I know they were there to rally their support for me...

Needless to say, more then half the time, my brain was in auto shut down mode without my control... BUT I got the gist of everything I needed to hear to get a certification of that whatever cursed nightmare.

So here I am, impossibly sane and insane at the same time. Is that even possible? Yes, because I am a control freak when it comes to my babies so I want to make sure that I can do everything for her up till the very last minute... Every damn thing that a mother shouldn't be doing for her child - I will learn and I will force myself to listen to do it for you because I know she will want no one else but me to do it...

BUT I'm so drained. Every bone aches. Every second I feel like just crying... I look at my princess and I hate everything that she is enduring... NOTHING makes sense anymore.

And yet, when I should be spending as much time as possible with my little girl, there's an incredibly large amount of logistics, and new things to learn to walk the rest of the journey!

As minute as the odd may seem, please pray for a miracle for me.

Update on Charmaine

2011-10-02T23:25:00.003+08:00

She is now out of ICU, and back in her favourite bed with cyn mommy and family.
They are all very tired, especially cyn mommy.

For those who are offering their prayers, would respectfully request not to gather a large group in her ward as that might cause disturbance to the other patients as well as the resting time for her family.

she is now breathing via medical device.

Let's look forward to the magical trick our princess is conjuring.

Love,
Charlene

Pray for a smooth journey

2011-10-02T11:22:00.002+08:00

Cyn mommy has decided not to intubate charmaine at this moment, a strong yet difficult decision to do.

Pray not only for Charmaine, by Cynthia, to face the final moments.

Thank u.
Love all,
Charlene

In ICU again...

2011-10-02T04:49:00.002+08:00

Dear God,

Please save my child... Please please please...

I'm so scared... So lost... So helpless...

You have to save Char, and you need to do it now! She has the right to live!!!

SAVE HER NOW!!!

New challenges

2011-10-01T23:16:00.004+08:00

New tumor found on her left hand last Sunday...

Causing her excruciating pain on her hand, almost rendering her left hand immobile.

Unable to move both her legs, unable to move her body, she had been relying on both her hands to make tiny shiftings in positions so as to prevent bed sores... But this new tumor has brought on another cruel challenge to my helpless baby's already beaten and battled body...

Her pain has been getting progressively worse over the last 2 days as well...

And now as I lay besides her typing, she's breathing much harder then usual... Her oxygen support has also increased to 2litres...

Everything is simply tough beyond words. I try as hard as possible to limit my words in here because I think it would be too painful for anyone to read what we are going through each day...

Please pray for healing despite how dire our situation looks like now. I'm hanging on by a tiny thread... Hold on to us as we hold on to Char's dear life...

I've been feeling way more exhausted then usual... Maybe it's the 2months inpatient stay catching up on me... Maybe it's the lack of sunlight...

We made it out of ICU despite all odds but it hasn't gotten any easier. In fact, everything feels like a thousand times harder... I'm taking it one second by one second literally. I try to focus on the immediate hurdle to cross but yet sometimes it's like a double edged sword. Because while we treat our immediate challenge, we have no choice but to give the beast that's waiting a chance to step forward.

PRAY for Charmaine to fight through all of these and SURVIVE! We are fighting because we believe in miracles.

Love,
Cyn mommy

Char can't move her left hand now...

2011-09-27T23:16:00.002+08:00

On Sunday, we found a new lump on her left hand... It caused her a great deal of pain overnight...

Just a few minutes ago, she can't move her left hand... She can't move both her legs... She can't move her upper body...

Char just can't get a break...

Please pray... Please pray harder then you ever have...
I'm so helpless... I don't know what to do anymore...

Day #4 - WE ARE OUT OF ICU!!!

2011-09-21T22:27:00.002+08:00

Still on a little bit of oxygen support as she doesn't seem to be able to keep her SPO2 stats at 100%.

But stepping out of the ICU is a HUGE MIRACLE!!! It's one step at a time.

Thank you all for the prayers!!! Keep praying! Because it's defin working!!!

I'm so gonna try and catch up on lost sleep... On a real bed and not a chair all curled up into a fetus position.

Good night world! May tomorrow bring us more hope.

Love,
Cyn mommy

Char is OFF the ventilator and breathing on her own!

2011-09-20T14:37:00.002+08:00

About half an hour ago, we took Char off the ventilator support and she is breathing on her own with a little oxygen support! YEAH!!!

Her chest tube is still draining blood but not as much. Her haemoglobin dropped again due to the blood loss and right now we are transfusing her. SO PLEASE REMEMBER TO KEEP THE BLOOD AND PLATELETS DONATION COMING IN! (Please refer to the blog entry before this)

Char was a little freaked out during the extubation process but she followed through the instructions properly and we were able to remove the breathing tube swiftly. As expected, her first words were "Ma Ma"! OH HOW I MISS HER VOICE!!!

Thank you for all your prayers! It works, please keep them coming in by busloads and truckloads or whatever spaceshuttle-loads!

And most importantly, thank you for faithfully following us through our journey every step of our way. As personal as our journey is, you have always been an integral part, even as a silent supporter.

Thank you also to all the friends who rushed to ICU to rally their support. When I look around me, I know that I'm blessed with some explosive GIRL POWER around me!

Charmaine loves you all and so do Cyn mommy and Jase!

Thank you everyone!!!

One minute at a time, one step at a time and one day at a time!

Love,
Cyn mommy

PLEASE DONATE PLATELETS AND BLOOD

2011-09-20T06:40:00.002+08:00

Just another quick update from Cyn mommy.

We are still in ICU. Char is stable. Still on ventilator but we are reducing the support which means that Char is breathing more on her own.

We are still draining blood out from the lung tube and at a reduced volume.

Because of the bleeding issue, we are NEEDING blood and platelet transfusion now more then ever. The platelets are our biggest gift now to try to reduce and stop her bleeding. We are keeping her levels at very high, above 100k which pretty much means that she's needing transfusions every day. Your blood is quite literally saving lives and keeping her alive.

Char is O+. So PLEASE DONATE if possible.

Once again, just like to briefly give the details of where. Platelets donation can only be done at HSA (which is at SGG). You need to specify that you wish to donate platelets. It has a more stringent criteria and it takes a longer time to complete the donation. 45-60mins. As for blood donation, it can done at any of their mobile recruitment drives setup.

And there is no direct donation allowed. HOWEVER, when you go down to make a donation, PLEASE MENTION THAT YOU ARE THERE FOR CHARMAINE.

A friend who recently went down to make a donation came to ICU yesterday and told me that he heard from the HSA folks that many of you have gone down for Charmaine. THANK YOU THANK YOU! I cannot say enough thank you to all of you. You are literally the reason why she is alive and still breathing. She is still able to fight because of your precious gift to her.

I know some might not understand where I am heading towards with all these. Without the transfusions, her life will simply fade off in a matter of days maybe. But I've always been clear on where I stand since day 1. That every one smile, that every one wave of the hand, that every peace sign she puts up, every kiss she tries to plant on my face with that breathing tube IS WORTH FIGHTING FOR. She is fighting harder then anyone, and I have no right to end her fight prematurely with some 'rational medical reasons of mine or anyone'. Dr Aung puts it down the best when I relate to her about some of the painful words the doctor in ICU said the moment we stepped in "Prepare yourself. She can D** anytime" Not once but 3 times. She made it through the weekend! Dr Aung's words "They have not met and known her yet!"

Indeed. I couldn't help but feel such pride and strength. I don't need to convince anyone who met my princess that WHY I NEED TO FIGHT. Because you only need to know her for a minute and you will never doubt even for a second in your life that Char only has one plan and that is TO FIGHT and LIVE.

Please pray, pray and PRAY. PLEASE ONLY PRAY for healing, recovery, a cure, wellness, pain free, good health, strength, a miraculous disappearance of cancer and nothing else but abundance of life for my baby. That is the ONLY ONE THING SHE WANTS. TO LIVE.

Btw, just gotta mention, thank you Pink Lotus, you made my day. :-)

Lastly, we are all hanging in there! Keep the donations coming in. It's never too much with so many other kids out here who needs them as much as Charmaine. Even if you are not O+, you can still go down and make the donation. There are many children or even adults who doesn't have a blog to ask for help like Char. So thank you on behalf of all the kids here who is going to benefit from your donation.

Char is obviously not happy with a breathing tube, unable to talk and unable to even cry out in pain BUT as always, she is asking when we can get the tube out and when we can go home. Every minute of her life is one full of HOPE regardless of her situation, regardless of all the various tubes in her body causing her much pain on top of cancer pain, and simply regardless of whatever is said.

And all I'm doing is taking her cue! I follow her lead. Every nanosecond is HOPEFUL. I will never give up regardless of who others say. Life is all about HOPE and no one else can take that away from us. Even in pain, we hold on to hope that the next second will be a smile.

Char always ends it with 2 words: "LOVE YOUUUU!!!"
[Between you and me, here's the secret - I always can't help but think that my 6 year old warrior is such a great strategist! Her 2 simple words will hit every doctor and nurse so hard I can see it in their eyes. It's my girl's way of warning the doctors and nurses "I'm not giving up so better dont give up on me prematurely!"

Way to go honey!!!

PS: One last thing. I have no doubt that Char's will is what that is keeping everything at bay. So if you plan on visiting, please only bring positive thoughts and smiles!!! I know it's hard to keep the tears at bay seeing her all hooked up like that. But please try! I want for her to have NO FEAR at all! HAPPY THOUGHTS and POSITIVE ENERGY! :-)

Love,
Cyn mommy

A quick update

2011-09-19T01:15:00.001+08:00

A quick update for those who have been asking about Char today...

Lung bleeding is caused by tumour growing there. Will have to clear the blood every now and then. Intubated and heavily sedated. Char is in discomfort. She is conscious but would drift off to sleep every now and then. She seems to be better towards the end of the day. She can't talk so she had to sign and could even "ask" for the smurfette happy meal toy that Jase kor kor bought for her and tried to comb the smurf's hair with her eyes half closed and all the tubes everywhere. She could even do a peace sign albeit with effort.

PS: I've since handed this blog over to cyn mommy to manage. Whenever necessary, I would try to update the FB page at http://www.facebook.com/profile.php?id=741817783#!/group.php?gid=53217919641.

Please bear with us if at times you don't get any updates from us.

- Godma Jolene

PLEASE PRAY for HEALING

2011-09-17T23:12:00.003+08:00

In ICU with breathing difficulties.

Bleeding lung and intubated...

Please please please PRAY for Char to recover. We are not giving up.

- Cyn mommy

I believe in miracles and I will keep believing.

2011-09-16T23:10:00.002+08:00

Don't cry because it's gone but smile because it happened.

Our little feisty princess is still wowing her doctors. :-) They come daily and ask her, "Are you having chest pains? Do you find it difficult to breath? Are you breathless?" The best part was when the consultant told her that "Dont worry, we have arranged to put a needle into your chest - pointing to her right chest". My poor princess freaked out with a look of fear and asked me in a quivering voice "Mom, why did doctor say she wants to put a needle here?"

Someone in the medical school needs to make sure ALL DOCTORS are required to pass a compulsory module in COMMUNICATION SKILLS. Don't misunderstand me, I'm not really pissed. I didn't even glare at the rather insensitive or should I say "dumb" consultant. Haha. It's just appalling.

In case you are wondering - The answers to all the questions asked were "NO"! No breathlessnes, no chest pains, no whatever the medical books have taught the doctors. My baby is not your textbook example unfortunately. She sets her own rules. One would gve thought that by now, the doctors should have understood that amazing quality in her. Maybe they were just trying to have a certain sense of "preparedness" which I appreciate BUT I would actually respect them more if they would just stop implanting those absurd ideas into my baby's head.

Afterall, that's what clinical assessment is all about, isn't it? You access the patient's condition and not try to predict a certain outcome. Yes we are taught Condition A will most likely result in Outcome B. But until it happens, we shouldn't assume that it has happened. Oh well, what am I expecting. 2.5years in this medical world should have taught me to lower my expectations to NIL when it comes to working with most doctors. Once in a blue moon, you get a wonderful healer like Dr Aung, Dr Chui, Dr Lee or Dr Serene Lim. But other times, it's best to teach yourself everyone is a newbie learning. Only then can I have a little more patience and a bit more tolerance for mistakes...

~~~Medical Front~~~
Char is doing OK. She's having a little more pain and we are trying to adjust her pain meds again BUT she looks awesome otherwise. I truly need to put up a picture for you folks to see. We have been playing UNO, painting, watching DVDs and eating! I know my previous post is depressing and I've gotten quite a few comments that got me thinking. You probably is picturing a very sick and ill child with no laughters and just plain misery. I'm happy to tell you that it's quite the opposite her because she's our feisty little princess! In fact, Charmaine is shouting "Byeee and LOVE YOU" to all her favorite doctors and nurses daily. I get a little teary whenever I hear that but it's simply because I'm so damn proud of my baby girl and her big big heart! She's so full of love!!! I know I see those doctors and nurses looking touched, stumped, surprised and happy all at the same time!

Hmm, I just like to say a few words to our many supporters. I'm at a period when it's extremely trying and there are many moments where I can no longer fake my strength ad courage and need a tasteful breakdown. And I'm so grateful to all of you for hearing me rant and simply being my silent listener when I needed that release. Thank you. I am aware that we are out of curative options for my innocent child but it doesn't mean that I've given up on hope and miracles. While I'm realistic about our situation, I still believe that my princess will fight non stop. After all, she is doing just that every second! Nothing has changed except that I've decided to stop poisoning my child with chemo. HOWEVER, my belief and faith in fighting had never wavered once, not even now. We are merely using a different combat method. My princess has truly made everything simple for her mom - me. It's so easy to know what's the correct decision because her determination and will is so powerful, so optimistic and so unstoppable. She has this invisible unassuming power to just make people fight for her in every way possible. Right now, we have some wonderful doctors from the pain team doing everything to make her comfortable and we are blessed.

Char doesnt complain much of boredom, or her inability to move. She doesn't even complain about the fact that she has to deal with pain daily. She simply just takes everything in her own stride. She has no fear for everything she's going through. Except during the occasional times when the fear is put into her mind by the very doctors who are supposed to provide hope. She believes that she is going to get well and that is why she will! Afterall, people have been telling me our brain is the most powerful thing we have, isn't it? Please don't tell me, or her otherwise. We don't need that. And no one is allowed to tell us she won't make it either. Who are you to say so, right? :-)

What will be, will be. :-) Whether it's my princess or anyone, please don't ever allow others to tell you that there is no hope. We all will die one day but until that day comes, everyday of our lives is FULL OF HOPE. Yes, I lose it at times, I cry and I feel despair, depression and desperation, pain and sorrow BUT hey, that just mean I'm NORMAL, isn't it? It's NORMAL and correct that I should breakdown when the situation calls for it. The important thing is to stand up again. Dry the tears, touch up the make-up if needed, to cover the puffy eyes and all, fake the strength or courage, whatever it takes, as long as it helps you to stand up and move on, it's a good trick!

I read a comment left by a reader who had read my previous post saying that her mom has to stop chemo because doctor says to stop. I'm very affected by her situation because I get a sense that her situation is probably more common then they should be. I can't help but feel that I have to contribute my 2 cents worth. I do realize that I'm not representative of most parents in the ocology ward here in KKH. I also acknowledge the fact that everyone is entitled to handle their situation the way they choose to. After all, I get seriously offended when people tell me that it's better for Char to be in a "better place, pain free and running"... I sincerely appreciate the concern and the words of comfort BUT what may be comforting to you might not be to others. As unique or as different or as skewed Cyn mommy is, you gotta admit that people like me give the system a good run, isn't it? For a system that is so used to send their patients home (far too early in my opinion) to die, you can imagine what kind of damage I've been doing here. I haven't actually mentioned before in our blog but yes, I've been creating HELL here in KKH and had quite a few meltdowns because I am horribly shocked to find that such things actually exist right here in my country. Can someone please enlighten me if I've lost too much touch - are we still a developed country or have we regressed?

Like I said, I know I am atypical in almost every sense. I don't understand why too. I am born and bred right here in Singapore. Read the same textbooks, drink the same water, eat the same food, breathe the same oxygen and yet, my brain and my heart somehow didn't develop the same way as my fellow peers. The only explanation I came up with is probably because I am one of the youngest mom here in KKH. Maybe its really a generation gap issue?!? Well, whether I am atypical or the minority, I would very much prefer that people don't directly or indirectly tell others that THEIR LOVED ONE has no hope and will die. Yes, medical professionals have an obligation to present the facts and the odds BUT dont take away the hope!!! No one has the right too. Maybe it's just me but I'm pretty sure even though I am in the minority group, I won't be the only one. I am ONE who REFUSES to believe those words. Clearly, I'm a rational being, I know my odds and I cope and prepare. Death is a given anyway; so what's the difference between you saying or not. Give me hope. Give us HOPE even when it feels fake. It really isn't important if it's real or fake because LIFE is ALL ABOUT HOPE and HOPE is what keeps everyone going. No one has the right to take that away from us. And really, if you have nothing better to say, silence is the next best thing to offer. :-)

A friend once mentioned to me that everyone is different and some people just don't think the same way as I do. That even in pain, there's still life worth fighting for. I respect that but I often wished that our culture could have been one that's more into offering hope by default rather then taking it away first and wishing that they are wrong.

Life is worth every bit of a fight, even in pain, even when suffering and even when the future looks bleak. All it takes is one nanosecond for a miracle to happen. Hold on for as long as possible because you never know what the next second might bring. Make a decision because you want to and not because the doctor said so. I made the decision to stop chemo and it was not influenced by any doctor. If I had chosen to continue, our doctor might have explained that it's not in the best interest but she will respect my decision. Seriously, I wish I can shout out loud enough to everyone that "Get a GREAT doctor who doesn't believe in giving up prematurely!!!" I've been in here more than 2 years and I know it's REAL that there are too many doctors who give up too soon!!!

You may see it as prolonging pain, I'm counting it by the additional smiles we accumulate each day!!!

Love,
Cyn mommy

My heart hurts...

2011-09-13T17:12:00.003+08:00

Honey,

Today, mommy has decided to stop IV chemo for you. Mommy is hurting and mommy is so scared... But my heart is telling me it's time to stop... I don't wish to poison you anymore... I simply can't bring myself to kill whatever little healthy cells you have left...

Your eyes are so full of life. Anyone who sees you can see the sparkles and see the love in them. You are still so happy, so lively and so full of dreams... No one can even tell that you are in so much pain, unable to turn, unable to sit, unable to move. That's how amazing and inspiring you are, my little princess.

Two and a half years... I've been poisoning you non stop, in the hope of saving you...
Today, I finally have the courage to say "Let's stop".

You won't give up, right? Neither will I. Stopping chemo doesn't mean that we are giving up.

It simply means that we are believing that what medical science can't fix, our minds and faith can.

Let's ask for all the uncles and aunties out there to help us spread the word, pray for your healing and recovery. Mommy will continue to find other treatments to help you and enjoy every single minute together with you...

I love you baby. I am so blessed to have you as my baby. I love you so so so much. Big hug and a big kiss.

Love,
Your Mommy.

PS: If you pray, please pray for Char... To be the miraculous healing we have all been praying for.

Good Morning Mom! I love you!

2011-09-11T09:51:00.002+08:00

This is truly the best way to wake up every single morning! I would give anything just to wake up every single morning hearing my kids say that to my ears and seal it with a kiss.

I love it and I am very happy. Life is defined by moments and moments like these are truly priceless. Worth every drop of tear, every heartache, every suffering, I wouldn't have it any other way.

Thank you to the one who made yesterday and today very much cherished memories.

We had an awesome day yesterday. Jase spent the entire day in hospital. I missed him so much and so did Char. She has been asking for days to have Jase but we havent been having many good days.

Char ate much more then she did in weeks which was wonderful. Jase spent hours teaching Char Maths and Char enjoyed having her brother to teach her the homework. We watched a movie - Tinkerbell and she slept sweetly with minimum pain.

As for me, I finally found enough interest to read and completed an entire novel in 8hours and ended up with lack of sleep this morning. Nevertheless, it was therapeutic and I enjoyed my book so much! It was funny, witty and most of all, I smiled, laughed and giggled along with the characters. A wonderful reprive from our reality.

Char woke up to kiss me good morning but she's still rather tired. So she went back to sleep and Jase will be coming later again.

But it will be spelling day today - Jase is gonna be a whiney boy. Haha.

Did I mention that I'm having the time of my life now?

Love,
Cyn mommy

I am a mother of possibilities.

2011-09-09T18:16:00.002+08:00

Thank you to a special mommy who gave me the best comfort today.

The scan results are dismay.

I am wishing for a freak accident to happen to me so I can not feel hurt anymore...

Thanks to your words, you have steered me back onto the right path, the path to continue the fight, because Char isn't giving up, what right do I have to?

Doctors are simply amazed that despite what they are seeing in the scans, Char is doing so well, not even displaying any symptoms of breathlessness, coughing or discomfort in chest...

She is simply amazing that way... My princess, my strength, my guiding light...

But still, everything sucks! I wish I could make all these pain go away and just let my child be a normal 6 year old...

This is so unfair!!!

Scanxiety once again...

2011-09-08T08:57:00.003+08:00

If you pray, please pray for Char to have stable scans. That's all I need to hear but even the simplest of wishes can be so distance from me.

We actually have had quite a number of scans done prior to today that I've not mentioned in the blog. Part pointless, part exhaustion, part denial... Mostly just wanting to absorb everything privately myself...

I'm not sure why I'm mentioning about scanxiety today again... Maybe I'm already losing my mind...

I feel like I can't breathe properly and is on auto mode again...

Please pray for good results... For me to remain calm and strong...

I hate this feeling of fear...

Thank you.

Love,
Cyn mommy

Not quite ready to face the world yet but...

2011-09-06T21:34:00.002+08:00

I think I can at least muster enough courage to reopen the site, so as not to make our friends worry...

Thank you for bearing with me while I took time to re-think and re-focus, and just stayed away from all things virtual.

It was a much needed break and it definitely helped to call my nerves a little. I thought I am fully recharged and ready to start blogging again but apparently, it isn't as simple as what I assumed...

The moment I re-logged into blogger, I am feeling all the anxiety and stress again. I don't know why, I can't explain it but it just does...

As you can see, I've hardly mentioned much about my princess. She isn't doing great but she's holding up as well as one can possibly imagine with all the pain and immobility.

I am obviously not doing justice to her strength and courage because seeing her, one would be totally ashamed. On our good days, she is smiling, playing UNO, doing her Primary 1 maths homework, doing craft... All these while in pain, unable to move, in a laying down position. I don't even know what is the correct word to describe her resilience, her awe-inspiring will to get well.

Needless to say, on our bad days, I just feel like dying myself.

One day, I will have to sit down, write down every little amazing thing she has done and every ounce of effort she is putting in on a daily basis to just get well. She hears the doctors talk of shifting her body to prevent bed sores from getting worse and she will ask me to help her shift her lower body while she pulls her upper body with her arms on the side rail. Imagine yourself doing an amazing feat like that with barely any food intake for almost 3 weeks now and imagine the sheer determination needed to overcome the pain which is obviously there and which she understandably will experience as she shifts ever so slightly. She does it without any complain and she simply grits her teeth together and do it!

My 6 year old little girl. My amazing warrior. My greatest teacher in life.

This is buy simply one example of our daily life. And it's on a good day.

A minute in our lives during a bad day probably will have a normal average person wishing for death instead. And I mean it. It's no joke and it will tear you apart alive. Heartbroken is just an grossly understatement of my emotions.

I am trying my very best to not drown. But I know that I am sinking slowly daily.

Please, if you do not know what better words to offer us, silence is better appreciated. I am still fighting. So is my princess. I am extremely fragile and extremely vulnerable. I simply can't take anything else except words of encouragement.

Please trust my princess and me that we are doing what we know best. We are merely fighting to LIVE. How wrong can a decision like this be I do not know!

Support us, pray for us, believe in us and with us. Even when everyone else around you and me think otherwise, please still continue in this fight with us. We will die fighting, if it comes to that. As long as my baby has another minute to smile, to play UNO with me, it's another minute worth fighting for, and worth living for.

She is defying odds every second of her life and is wowing the medical angels in the ward daily with her amazingly strong will and remarkable ability to make every second count.

She will be my miracle.

Love,
Cyn mommy

Taking a breather for now

2011-08-27T19:19:00.002+08:00

Too many happenings lately and too much emotions running high and wild... Too many system inefficiencies to resolve... Too many challenges to cope...

I'm tired, drained, exhausted, weak and beaten. I want to cry so bad... I don't know what to think or say...

Please allow me to take some time off to refocus on everything. I desperately need to just get away from as much things as possible but I can't... It feels like I am not even myself these days... I need help but I don't know who or what can help me...

As and when, I will try to update again... However, for now... I need to just escape from blogging... It's no longer an efffective avenue for me to release all the stress, worries and anxiety...

I may take a longer time to update... But I share how Char is making out occasionally.

Please bear with me. Thanks.

In the meantime, please keep all the prayers coming in for Char, and all other kids. Please continue to believe in the miracle that Char will be healed and going back to Primary 1 next year. I will never stop fighting. Help me to keep the faith...

Love,
Cyn mommy

Getting to a new territory...

2011-08-24T08:43:00.002+08:00

~~~A short summary of the past week~~~
We were finally discharged on last Tuesday 16th August after almost 3 weeks of inpatient stay, fighting 4 infections, severe pain and loss of appetite. And we were re-admitted on Thursday 18th August for blood and platelet transfusions, with blood in her urine... After an overnight stay, we were discharged the next day. Char spent the entire weekend at home, with fatigue, zero appetite and severe pain which left her frozen in the same position for days... Any tiny shift in movement will bring about excruciating pain, sending her tears flowing... She tolerates everything quietly otherwise... Making no sound, having no smiles, not talking... To be honest, I've never seen my child more sick then this throughout our entire journey... Not even during our spinal cord compression, not even post op... I cannot even grasp the extent of pain she is experiencing... Her threshold is horribly high... But she's afraid of the pain. Due to the fear, she remains as still as a statue for days...

~~~Our new phase~~~
As I've probably mentioned before, my child is now platelet dependent. Due to the extensive treatment she has received non stop, the toxic in her body has accumulated to such a point her body is now having a lot of difficulty recovering. As such, her body now is struggling daily to make enough platelets; even with platelet transfusion every other day, her platelet count will plummet within a day or 2... A normal person will have platelet count of more than 100k which will help in clotting. In KKH, a child needs transfusion once it falls to 20k. Char's own platelet count has been hovering below 20k without transfusion... With this new condition, we face some very dangerous situations... She may bleed profusely to death... As it already is, we will see blood in her urine the moment we step out of the hospital... The urinal catheter she is on will also increase the risk of bleeding in her bladder when her platelets is low, which is what we are seeing daily. I cannot even tell you HOW MANY children I've come across passed on because of a bleeding bladder... Due to the toxicity of chemo...

Frequent platelet transfusion and severe pain really doesn't go well together... We knew Char would need a transfusion on Monday even without doing a check... The challenge was getting my child who was suffering in severe pain to the hospital... I increased her oral narcotics myself, loaded her with as much as I possibly could... And yet, I still couldn't get her to even move an inch... I couldn't even slide my arm below her knee without her crying out in pain... I so wanted to just sit there and cry...

But I know I can't... I have to figure out a way to get her to KKH by hook or crook... She NEEDS her transfusion! I called Dr Aung, called the palliative team up to inform them the severe pain she is suffering from... And finally, I decided I had to call for an ambulance... A stretcher wouldn't solve our problem because every movement brings on PAIN... But it was the best I could come up with... WHY IS MY FREAKING LIFE SO MUCH LIKE A DAMN DRAMA?!?!

My baby girl did her very best to tolerate with the pain brought on by our shifting and carrying and we finally arrived at KKH... And it was another bout of suffering and pain to get her onto the bed and then it was another bout of shifting to another bed... By then, her heart rate spiraled upwards... No one who witnessed the scene is not heartbroken... Throughout the entire ordeal, I had to keep taking in deep breaths and forcing my tears back... It was so tough... :-(

I have not been crying as much as I should... I don't know how am I doing either... I feel like a robot most days, void of much emotions. I know I should focus on spending time with my baby girl... I am, but all I can do is to lay besides her... She does nothing, probably trying to focus on keeping her pain at bay... The rest of my awake hours, I divert my attention onto the challenges brought on by our new condition...

One of my biggest challenges now is Char's platelet transfusion. On Thursday, I had a complete meltdown right at the nurses station, screaming at a doctor who wasn't at fault. I am so stressed, so desperate and so dependent on others... It frustrates me totally. Before Thursday, during our 3 weeks inpatient stay, Char has needed numerous platelet and blood transfusions and because of the public holidays, apparently the blood bank has been very very low on the blood products... We were told everyday daily that "Sorry mom, the blood bank does not have enough and we can only transfuse her with 2 small random packets of platelets." When we are inpatient, I can tolerate the fact that Char be transfused daily because of a lack. It doesn't put my child in a much more difficult position due to unnecessary human inefficiencies... I can of course understand that situations like a shortage may arise from time to time and I can't fault the system entirely because no one system is foolproof.

However, can you even begin to imagine my pain, my despair and my frustration when I have to bring Char to the hospital just for a transfusion and they once again tell me the same sentence?!?!? And the WORST of all, my girl has a count of 11k on Thursday and after 2 random small packets of transfusions, at best, her platelet would increase by 10k, hitting 21k! My poor child has to endure severe pain to make her way to the hospital, getting off and on the bed, getting on and off a taxi, wait close up to 8 hours minimally to have her transfusion and she's peeing blood... And because of a severe shortage, she is enduring all that for a mere 10k which will still put her at a risk of bleeding which will surely drop below 20k by the end of 20k... Which means we might as well find our a permanent home within the hospital building itself! To further frustrate me, it's unacceptable to me that it's been more then 2 weeks of severe shortage of blood products (maybe not by their own standard protocols but it's what the HSA has been telling KK and what KK has been telling all the parents), there had been no announcement whatsoever to ask for more donations!

I cannot stand it. I feel so desperate, so helpless and so much unjust for my suffering child. Throughout my time spent fighting cancer, I have developed such a fiery survival instinct sometimes I have no control over it myself. My adrenaline just sets off my survival instinct to fight, to resolve and to create a solution. In reality, how much of these issues are real problems?!?!?! Yes, I can only accept that there's no cure for cancer now, but it's only for now, someday, we will cure the mystery of cancer too!!! We will and we must!!! Compared to cancer, everything else, almost, can be resolved!!! It's just a matter of doing it!!!

I lost it when the nurse came up to me with those words and I just storm my way to the doctor! I believe that I have my valid reason, like I explained... It simply won't work and it doesn't even make bloody sense. I stated the facts theoretically, crying, questioning WHY has the issue of the shortage not been resolved. I tolerated for 2 weeks now and I simply can't anymore, seeing how much my child is suffering just to get her much needed transfusion. Somewhere in between the questioning, I appologised to the doctor who was at the mercy of The Blood Bank and I know they also get scolded by those doctors authorizing the release of the blood products to the children... I told her that I know it wasn't her fault BUT since the hospital has been facing such a severe shortage, shouldn't someone within the hospital feedback to the HSA or something?!?! Is everyone simply sitting on their asses waiting for the next person to resolve it or to highlight it?!?!? And I demanded to speak to the doctor from HSA because if no one wants to highlight the severity of the lack, then I WILL. They of course declined. I screamed that I just wanted to HELP. Let me know HOW. I cannot sit around and just wait for the issue to resolve magically. Lack of donation, tell us how and we can spread the word... I know there are people willing to donate but they simply don't know that there's a severe shortage...

I was just a total mess... Sitting on our bed, desperately cracking my brain to come up with a solution. After all the noise and hoo-ha I made, I was later informed that they managed to get Char a packet of CSP (one donor large bag platelet which works the best for our kids). What do I say to such a situation?!?! I'm totally drained... Highly strung and emotionally down... I sat on our bed, wondering to myself if I indeed need to act like a crazy bitchy irrational mom every single time we need a transfusion?!?!?! I can't. Its horrible, I suspect I might die of fatigue myself first.

But HOW and WHAT do I do? I'm totally dependent on others in this case. If I could give my own blood to her myself, I would do it myself. I'm insanely independent when it comes to taking care of Char. Not sure if it's a good thing because my secondary school teacher once told me that my weakness is my inability to delegate duties. I can and I will change our own bedsheets, I can do a marvelous job tying the knots the way the housekeeper does, I can carry Char on a stroller, with her all hooked up to numerous pumps, push the stroller with one hand, the drip stand with another, the urinal bag and move everything to the toilet, carry her myself within the same cubicle to shower her and finish up everything on my own. Do you know that I can even push a stretcher bed much better than the nurses? I can control the entire stretcher with my bags and stuff and any help is more of a hindrance. I can even deaccess Char's needle myself. I am way more prepared in terms of supplies. Our neurosurgeon will tell you that this mommy has everything. Each time he asked the nurse for something, the nurse will have to run all the way out to search... All I had to do was to stretch a little, reach for my bag, and it's in there...

I'm not a smart person... I just have an inability to trust everything onto others because experiences have taught me that by waiting for others, your help might never come because unfortunately, to you, a life may be concerned, to others, we are just another workload. It really isn't the point about who's right and who's not or, what's wrong and what's not... To me, it's all about ONE THING and just one thing - TO GET IT DONE. It don't matter to me who does it. If I can do it, I will. We have an internal joke between Char and me, always discussing about what career I should embark on next, the housekeeper auntie, the porter auntie, the ambulance porter, the nurse or the doctor?

I'm not tired doing those things, it keeps me sane, provides a distraction, and it allows me to have some sort of a control amidst all these insanity. Most importantly, it gives me great comfort to know that should small situations arise, I can handle it myself even if I have no help around me...

Of late, shifting my attention to fixing all these little hiccups within the system that we are totally reliant on has sort of provided a sense of living. I am engrossed with fixing all these bugs, no matter how minute... Because in between my insane world and my child's immense suffering, these are the ONLY thing I can do for her... Quite literally the only thing...

Hmm, another onco mom tried to comfort me, telling me to relax and be more forgiving towards the minute situations around me. Instead, I should enjoy the time with Char. She's right. However, I cannot and I simply won't take "No" or "Don't know" for an answer. And I cannot sit around just relying on people who doesn't care about my child or people who care but is also sitting around for others to fix the issues. Almost all the times, all it takes is for someone to question and make enough noise and you will realize that all these issues will resolve 'miraculously'. I really wish I could have been a more pleasant mom, a mom that doctors and nurses like. I really dislike being the annoying mom, questioning, probing all things and ruining others days... I, more then anyone wish to accumulate some good karma for my family... But, I really can't sit around and knowingly look at all these inefficiencies, all these supposed issues and pray and wait for others to help me solve them. I can't. My every bone is made to fight and push through the bushes or thorns because every minute that I spend waiting for things to happen equates to me waiting for my child to fade off...

~~~HELP CHAR, HELP ALL THE KIDS~~~
This brings me to our new situation now. I am begging, pleading and asking for your help once again. I don't even know if these's any of you reading our blog these days... BUT I desperately NEED YOUR HELP, not only for Char but also for the many people needing the platelets to reduce their risk of bleeding.

An article in the Straits Times may just be words to you, another announcement. However, I assure you it's more then that. Just not too long ago, I also could never understand the dire desperation of needing platelets or blood transfusion and being told there's not enough... Because even though Char needed them in the past, we probably needed once or twice in a month and after that, her body could produce enough on their own... And back then, Char could commute easily to the hospital and all that dampened our moods was an 8 hours stay just for a 15 minutes transfusion. I'm ashamed really because I didn't understand the desperation of a mom in such a situation as we were not in such situation ourselves.

Today, I am writing to you, quite literally at wits end. On top of fearing for my child's suffering, on top of being scared for her situation, I am SO WORRIED. I don't know when I will hear the doctors telling me they have not enough platelets. I am so afraid that I will have to hear it every other few days and I cannot do anything about it. BUT if it's truly like I have no cure for my child's cancer, then I can only sit and cry. But its not the case, there are people who can help my suffering child. Please, if you keep the donation coming in, if Char has enough to receive CSP, she will at least be able to stay at home up to 3-4 days before needing to come down to KK for transfusion again. Since Monday, taxi will no longer be our mode of transport. She will have to travel in an ambulance from today, and if she doesn't get enough, she will have to make up to 3-4 trips per week... Just thinking of her pain is already tearing my heart apart...

Even if you donate, my problem doesn't end there. But at least, it's the fastest way you can help my poor child now. And it's the only interim solution I can figure out.

The National Blood Bank which supplies KKH with their blood products doesn't allow direct donation. So you can't walk into HSA and request your donation to be directed towards Char. So, my poor child is still at the mercy of the authorizing doctor back at HSA, whom may not even have heard of her name, and doesn't know how bad a situation she is in. To them, Char is a set of 7 digits starting with the number T and ending with another alphabet. They will not know the amount of pain she has to endure to make the trip down in an ambulance just to get her transfusion. To them, she's another form that they have to sign. And to them, she has to fulfill the 'stupid book' of protocols to receive her platelets.

I am not demanding that Char has to be prioritized. Everyone has the same urgent need as Char. But I am beyond scared to hear another shortage and when that arises, even if I have friends on standby to donate, I can't even be assured it will get Char.

That is another whole different scenario for us. I called up HSA and got a freaking answering machine to talk to me. Finally, a friend got a number of Blood Bank and I called them up. It turned out to be Singapore Red Cross who is partnering with HSA and blood bank to run the donation drive. Spoked to a gentlemen who couldn't answer my questions and passed my call to another lady Miss Angeline. A very very nice lady who took the time to answer my queries. And I am not even done with learning. There's too much to digest. I had to learn about the lifespan of the various blood products and how the different blood donation drives are done for the different products. I found out that to donate PLATELETS, the donor has a more stringent criteria to meet, as compared to whole blood. A whole blood donation may range from 8-15 minutes whereas platelets donation takes up to 45-60minutes. And to make a platelet donation, it can only be done at the head quarters at HSA (which is SGH). To make a platelet donation, you have to specify because it a different procedure, there's a machine which will separate the platelets out from your blood and then the blood is infused back into your body. A platelet donor can donate up to 12 times a year and a whole blood donor can only donate up to 4 times a year.

And I found out that the severe shortage over the past week is apparently caused by 3 things. The Chinese Ghost Month, the public holidays and the fasting month.

I thought that HSA or Blood Bank should have anticipated these occasions earlier and should have done more work on reducing the shortage to a minimum but I expected too much of them... And since they couldn't solve the shortage issue which could have been pre-empt, they should have allowed direct donation to be made. If they could solve the shortage issue differently, then of course it's a different matter.

To actually make the situation even more infuriating for me, I actually found out that direct blood donation can be made in NUH. I had thought that direct donation is not allowed by HSA entirely within Singapore. Alas, to my dismay, it was not to be. So if char had been a patient at NUH which runs their own blood bank, even during a shortage, our friends could be activated to make the donation for Char...

It makes me wonder WHY then is direct donation not allowed when it's run by Blood Bank. I have yet to contact anyone within HSA or Blood Bank who can explain to me their 'RULES'... But I sure hope the reason is not due to shortage of manpower or incapability to handle the situations if direct donation is allowed. Obviously, to a psychotic desperate mom here, those are simply unacceptable reasons. I am up against a giant in this case. I can't bring Char to NUH for transfusion because they didn't even allow Char to do a PET scan simply because my girl is not a patient of theirs!

Seriously, if you folks are so interested in playing politics, join the PAP for god sake. Leave the patients out of your political games here. But I digress. You will be amazed at the politics played in the medical world. Singapore is becoming more and more of a stranger to me these days. Did someone mention equality for all people? Yes, it's equality when you never fall sick, never get richer or poorer, be in your life in a constant class, then you won't get to see what is happening outside your 'class'.

My child is a born Singaporean. And because of her being a patient of KKH, she's not allowed to do a scan at NUH. So what did I do? I had to bring her to Mount E. And if not for your donation, how would have I been able to afford to bring her to Mount E for a PET scan? I cringe thinking about others not blessed as us. And now platelet transfusion, because we aren't a patient of NUH, we won't be able to bring her to NUH either... Yes, Char was not turned down when she required transfusions. That's what Miss Angeline assured me which I agreed. BUT if I had NOT made a cuckoos of myself at the nurses station, then she would have to receive the 2 random packets and we will have to be transfused the next day... Or until they have enough... And all these would render us a longer inpatient stay which will make char upset. She realty wishes to be home.

I'm not making sense but to me, it didn't make much sense that simply being at a different location, there's a vast difference between direct donation being allowed or not. I'm continually amazed at the differences within this little red dot. Don't even assume that all the hospitals will have the most up to date treatments because they don't. No matter how small, there are differences. There are a lot of small minute things which will slowly but surely add up, to create a significant difference.

Like the situation for us now, I really hope Char can receive CSP platelets each time we require a transfusion... Because it will bring her platelet count up above 100k and only then will we get a good 3 days at home. But I can't... Even if I volunteer to compile a list of friends or volunteers and do all the necessary contacting, HSA will still not allow it. Maybe I stand a little bit of chance if I write in to HSA... But I'm so drained and tired... Nonetheless, I am not saying I ain't trying... That's why I contacted the Singapore Red Cross to start understanding how things work... I'm still a long way away from seeing the full picture... And for now, I can only just pray that the Blood Bank will always have more then enough supply for everyone needing the blood or platelets...

There will be countless more moms like me out there worrying about the same thing as I am right now, fearing the same anxiety as I feel...

PLEASE GO MAKE A DONATION. You are saving lives almost instantaneously.
They have a shortage of PLATELET donors... Please specify that you wish to make a platelet donation.

From the bottom of my hearts, I thank you all. On behalf of the many other kids, other adults, please know that we will be forever grateful.

PS: to the couple of kind souls who emailed us regarding the donation of tickets, I am so sorry I can't focus and will try to get back to you as soon as things are a little settled for my girl.

Love,
Cyn mommy

PLEASE HELP.

2011-08-15T11:14:00.002+08:00

Dear all,

Just a real quick one.

Apparently Singapore is very low on blood products especially Platelets. If you can, please help us to go make a donation @ HSA (SGH).

Char has been needing platelets every other few days... and quite a number of kids within the ward has also been requiring transfusion every other day...

Because of last week's Public Holiday, the Blood Bank is extremely low... Char doesnt even have enough for transfusion today... They only have 2 small bags to give... Char platelet counts is only at 20,000... With 4 bags, it only goes up about 10,000-20,000... now we only have 2 bags... it probably wont make much of a difference... So please help...After transfusion, Char will still be far below the normal range and we will require transfusion tomorrow again, provided they have enough...

Char is O positive but if you are not O positive, you can still make the donation for other kids...

THANK YOU... All these kids' lives depend hugely on your donation.

THANK YOU.

Love,
Cyn mommy

Happy 46th Birthday Singapore!

2011-08-08T15:32:00.003+08:00

I rarely have the courage to re-read what I've written here over the years and I probably only did it once or twice in the year 2009. As we journey further and deeper into our battle, I find myself getting more wary... Especially when I know most of the entries I wrote would bring me tearing... A bit of me also finds it a little pointless at this juncture to re-read those entries... It serves no purpose and everything I needed to learn back then, I've already learned and the lessons are already deeply imprinted onto my brain...

However, today I find myself wanting to dig into the entry I did for Singapore's 45th birthday last year. I want to remember the fun we had last year. I also find myself thinking of all the kind folks who made last year's trip to MBS to watch the fireworks possible for Char. And of course, I remember a charming little boy named Liam. Another fellow warrior of Char... Last year, Char was able to bring a few of her Neuroblastoma warrior pals along with her to watch the parade... Liam was one of them... Unfortunately, he passed very shortly after that... We missed you...

I will never know who was the kind soul who called or wrote to NDP committee on our behalf but please know that your help is never forgotten by us... It may be a small gesture on your part but I think it was one of the best memories that we had, especially for Liam's parents. It was Liam's first time and last time, seeing those fireworks. I can still remember his smiles and excitement till today.

This year, I had hope to bring Char and Jase to watch the parade up close at the stand so they can soak in the atmosphere and the fun. Unfortunately, things have gotten tougher and we are still inpatient... But we have gotten ourselves a bed with a good view of MBS and we will be celebrating from our bed! If only NDP committee brings some goodie bags for the kids celebrating our nation birthday inpatient with chemo, and IV fluids hooked up to them! I'm sure it would bring so much cheer to these little ones! But well, for some reason, most of the kids here only have the TV and lots of medications for them.

As usual, I'm reminded of our volunteers and the ton of activities planned for the families in New York City. If only we have the same level of volunteerism in Singapore, or even awareness from companies who can do more for the kids... Here, if I'm even planning for any fun to include in the midst of treatment, I only have my 'thick-skinned face' and myself to depend on... So, anyone??? Any suggestions and complimentary tickets? I have a couple of families with kids receiving palliative care and is totally reliant on ourselves to plan any fun for our kids. CCF somehow is short of manpower I was told. Hence, most of the activities are balloon sculpturing during the very few special occasions, some donated meals for the families during Mother's Day, Father's Day... Hmm, all of a sudden, I wonder if the hospital has a part to play, with extremely strict rules and regulations??? That will be another puzzle for me to figure out on my To Do List. Hopefully, I will have some energy left after trying to figure out a cure for Neurobastoma.

But in the meantime, if anyone of you out there has any sort of connections to Voyage De La Vie, The Lion King, Disney Show, or even a trip to watch the premier of Smurfs... etc... I'm thinking for the kids receiving the Palliative aka End Of Life treatment... Even if Char is unable to attend due to her pain, there are kids here who would be able to benefit from... Please let me know... While I'm drained and exhausted most of the times, I wish to still do some bits for the other kids here... The other kids that are running out of time too...

I am a little disappointed with myself as I am writing the previous paragraph. I think I heard that there's quite a handful of NDP dress rehearsals this year and I wish it had occur to me earlier to ask for some sort of arrangements to bring Char and a few other kids to one of their dress rehearsals. Oh well, missed opportunity I guess. I'm a little retarded these days... Getting so tired so easily...

Before I proceed to the medical update on Char... I would like to ask for prayers for a dear friend of ours in USA. Ethan is suffering horribly with no food and no fluid, just pain medications and a very determined will to fight and live... www.caringbridge.org/visit/ethanjostad Please be warned that the journal entries are very depressing, so read them only when you feel you are able to handle the pain. I check his site numerous times a day, not sure what I am looking for... I am stubbornly praying for his miracle but feel so much pain knowing that Kim and Chris are watching Ethan suffer daily with no release... Ethan's will and determination are both so awe-inspiring and heartbreaking. I simply have no words to offer Kim and Chris... Cancer is cruel enough but to fade off so painfully is hauntingly devastating. :-(

I woke up on Saturday to a horrific update on Ethan but also to an awesome real life miracle in the form of Ryan. www.caringbridge.org/visit/amazingsuperryan Such is the life of cancer... But hearing stories like Ryan keeps me going. See Char daily keeps me going.

~~~ Medical Update ~~~
Hmm, how should I start? The good or the bad? The Newtonian or the Plutonian? What else can further uproot our determination to fight? Oh ghee, I sure learn it the hard way. There's a lot of new damages that can be done and they can all happen together to spice things up. We found out that Char had the awful Staphylococcus Aureus infection on Sunday. Then the E Colis bacteria is found in her urine on Monday. And we added another new bug to our collection. The Salmonella is found in her stool on Friday. So it's Cloxacilin for Staph Aureus, then Fortum for E Colis and then another antibiotic for the Salmonella.

The great news is both the Staph Aureus and E Colis cleared. Her counts are also up after the GCSF shots. We had 1 red blood transfusion and 3 platelet transfusion in the last week. Still awaiting the darn Salmonella to get out of my child's body! GET OUT, YOU BAD BUG!

The bad news is she is in a lot of pain. Non movement is still ok. But any small tiny shift will cause her excruciating pain in her left leg especially. So, Char is pretty much in the same position throughout the day, even through her sleep. But she will grit her teeth and push herself to an upright position whenever she feels strong enough to tolerate the excruciating pain that comes along with movement. She doesn't cry, she doesn't complain at all. Even when she is experiencing bad pains, she tends to go silent instead. Until her facial features are all cramped together and I ask her if she's in pain, only then will she answer: "a little bit". No matter how bad is her pain, her usual reply is "a little bit". I have no idea where she learned to tolerate and just 'suffer in silence' instead of being a typical kid, crying and throwing tantrums, which she is pretty much entitled to. Imagine a mother in labour with excruciating contraction pains, don't the drama usually depict a highly distressed lady, usually spouting some vulgarities, scratching the husband's arms or something to that extent? Not my princess. Not my brave and strong little girl, barely 6 years of age. Just the other day, we had a neighbour besides us. A older girl who probably has completed her treatment long time ago as she has a head of beautiful head. I sat on our bed, beside her, hearing her sobs, her complains (which she is totally entitled to, due to some sort of infection in her mouth) and then I looked at my child... Quiet as a mouse, despite her pain, despite her immobility, despite the numerous pills she has to swallow daily... Not a single complaint, not a single whine unless her pain is so damn bad. I honestly dont know how she does it. All I know is that I am blessed to have her. I am truly proud to be her mom.

Instead of feeling grumpy and bearing a grudge with what she has to go through, more often then not, she is usually apologetic towards this mom of hers. Just a few moments ago, the nurse came in wanting to take her weight, she tried. She gritted her teeth and tried to tolerate the pain while I tried to carry her into my arms. But it was simply too much to bear. She broke out in one loud cry of pain and said "Sorry mom, I can't do it." This is but just one of the many times when she apologizes for something that's totally beyond her. She feels bad but she shouldn't. Its not even any fault of hers! Even now, she just asked me, "Mom, I don't think I can take my weight today. Is it alright?" She is worried that she will cause inconveniences to the nurses for not taking her weight. THIS IS MY GIRL. :-)

A friend of ours gave us his complimentary tickets to Voyage De La Vie yesterday and we sneaked out officially from the hospital in between the 6 hours antibiotics break for a breather. Something as simple as traveling from KK hospital to Sentosa was a huge task because of the darn pain! Char wanted to go but was worried about her own pain as well. Nonetheless, we made it!!! She enjoyed the show although her pain bothered her throughout. Thank you to Uncle Charles for making yesterday happen. It was a much needed escape for us!

Alright, time to say goodbye! As I type now, we are battling another latest challenge - blood in stool! Another latest antibiotic to be added! Never had that one before, just added another new vocabulary to my Medical Journal!

Please pray for Char's pain to go away and for our new drug to work the miracles on Char! Also, please think of the other kids fighting cancer as well - there's too many!!! I, in the meantime, is trying to undo my Newtonian brain into a Plutonian one.

Rejoice in the new day as you are alive and remember the rest of us fighting to seize another day!

With love,
Cyn mommy

We are on the favourite part of our roller coaster ride!

2011-08-03T13:04:00.003+08:00

And that would be the steep vertical drop...

Usually the most thrilling and exciting part of a roller coaster ride, which will send your heart thumping faster and blood pressure shooting up.

Ironically, my heart has been throbbing faster and my blood pressure is everywhere too. Nonetheless, the adjectives used to describe my emotions isn't 'thrilling' or 'exciting'. Instead, I've been feeling unsettled, anxious and just worried.

~~~ Positive Port Infection ~~~
Lots of insane things going on with us here. We started Nifurtimox on Sat as planned and we were checking into the Emergency before midnight with a high fever. I don't know what to say. Conincidence? Don't know. She also lost almost all appetite immediately after her afternoon dose. And she was in a great deal of excruciating pain. Sharp contraction pains that come on and off as they deem fit.

By Sunday, we found out that she has a positive port infection. First time ever in our more than 2 years of journey. I don't know if our luck finally ran out or because her port wasn't handled appropriately by Mt E. hospital. Or if Nifurtimox wiped out her immunity in just 2 doses? Don't know and won't ever know. All I care about now is for her port infection to clear up as soon as possible. With this ongoing infection, we pretty much can't do much to slow her disease down and it freaks me out to know we are just letting the mutant cells go free like that.

And the worst of all has to be seeing her in so much pain that she can't even move her body an inch. I don't understand why kids have to go through such suffering and pain... They barely even enjoyed life yet! Just simply where is the mercy for all these innocent little ones that the world is supposed to protect and nurture???

Even traveling in the ambulance daily to Mt E for her RT is a sheer torture.

This morning, she is shaking and having these little tremors she can't seem to control... She can only ask "mom, why am I shaking?" Her fever has subsided by Monday but these tremours and chills are making me very uneasy! I'm a very stressed and exhausted mom...

I'm trying my very best to make sure I am not missing out on any symptoms... And yet, I'm forcing myself to think like a doctor... What to do when this happens, what to do when that happens... When should we start this or when shall we do that... I trust our doctors but I like to brainstorm and concur my ideas with those of the physicians... just to make sure that we covered our base as best as possible...

Alright, I can't update anymore. Brain dead.

Please continue to pray for my little girl... Pray that her infection clears... Pray that her immunity climbs up and pray that we can start some sort of treatment soon to slow down her cancer...

Thank you.

Love
Cyn mommy

29th July 2011 ~ Its Today!

2011-07-29T11:11:00.003+08:00

Hi everyone,

I always want to apologise whenver I lack in updates, not because I feel oblidged to do so, nor is it due to a fault of anybody. Its simply because I want to. I am also a follower in many other warrior kids' blogs and I know firsthand what is it like to be waiting anxiously for updates of a someone you may have never met before but yet care so deeply for. Every update, be it just a one liner on Facebook Status or a picture can make or break my day. And like most of you out here following Charmaine's updates, I worry, I fret, and I curse on bad days. I rejoice, I hope and I sing praises on a good day. Thank you to everyone of you, still following our little princess, still believing in hope, and most importantly, still praying fervently for our miracle.

There are people out there who does a great job differentiating between work and family, colleagues and friends. I, for one, do not. In fact, rarely will you hear me mention colleagues. Everyone is a friend. A friend whom I worked with, a friend whom I studied with, etc... This is me. There are people out there who is able to view death as a natural event in life, all part and parcel of what living is all about. Some even view death as a part of some greater plan. I have nothing against these admirable folks. Its a great strength to possess. Nonetheless, its not a strength I own...

I do not know if I will feel the same degree of sorrow or hurt and anger towards an elderly passing. Both my grand-dads have passed on long before I understood death. When both my grandmas passed on, I was also a young teen who probably enjoys the thrill of near-death experiences, more then understanding the meaning of life and death. Honestly, I dont even know how will I feel should my parents pass on...

However, I have felt so much pain, so much hurt and so much sorrow for the passing of all these innocent little kids around me... Kids that I probably know for a few months, or in some cases, kids that I barely even know well. Strangely, with each additional lost child, a bit of my heart and soul is ripped apart. It leaves a gaping hole and when the hole mends, the scar remains. My life is never the same anymore.

Just what is it with these little innocent kids that can leave such a lasting impact in one's life is beyond me. Is it the painful journey that they have to endure, suffer, go through and yet end up with a family forever lost. Or, is it their bravery, courage and strength in the face of such adversity? Is it their ever-ready smiles or passion for life? Why do I hurt so much even when its not my own? I cannot even begin to comprehend a mother's desperation and pain when trying to hold on to her own child's life...

At the end of the day, what matters most is not how hard we have fought or how much we have tried... What truly matters is they are no longer by our side...

Lately, I've been feeling emotional and heart-broken. Heart-broken for our friend in America. (www.caringbridge.org/visit/ethanjostad) The Jostad family are very close to us when we were in NYC and Ethan has been clear of cancer only a few months back... Life was just about to return to the normalcy they once had, and yet within a month, everything changed. And it is changing at a devastating pace. :-( Please keep Ethan in your prayers as you would for Charmaine.

Last week, I was actually pretty excited over the approval we have gotten for a new drug we are trying to bring in for Charmaine. It is one of those little things that I have been working on, bugging different departments, different ministries to expediate for my little girl. I was so relieved when I finally heard from the pharmacist last Wednesday that Bayer agreed to sell us the drug and it was pending HSA approval. To say that I am anxious seem to be an understatement. Especially with our last episode of her bladder not functioning. Every minute, and every delay count. These days, I always found myself laughing sadly at my own new definition of many phrases. "Every minute count" is one of those examples. Usually, every minute count towards thousands or millions of dollars in a business setting. But now, those millions of dollars pale in freaky comparison to a life, a precious life. And it is just unfortunate that not everyone in the various levels of a system truly understands the urgency of time.

~~~ Medical Front ~~~
Charmaine is completing her last day of radiation to her pelvic region on Tuesday and hopefully, the radiation is enough to shrink all the tumors in her pelvic region and sacrum. Please pray that her bladder didnt suffer any permanent damage and that she is able to urinate on her own again so we can pull out her urinal catheter! Charmaine is on an incredibly high amount of steroids which in turn causes her to have hunger prangs constantly. And because of her steroids, she also has fluid retention and causes her to sort of swell up. Many even thought she has gained weight and looked better. Well, I am glad that she does look better on the exterior, despite the steriods. Lets just pray and will her body to be even better on the interior! I've learned quite a fair bit about steriods lately! On top of causing constant hunger prangs, swelling of cheeks and abdomen, one of the nastier side effects has to be mood swings! Fortunately, compared to what I've heard about other kids, my little Char is being such a sweetheart even when under the manipulation of Dexa. Her so-called worse behaviour is the 'stoned face', or rather, lack of response and expression. But other then that, I know Char must be putting up a huge resistance against the Dexa devils from over-taking her happiness!

The new drug has ARRIVED in KKH. YEAH!
"On 21st July, my FB status read:-
I AM SO HAPPY!!! After going through numerous obstacles, we finally got the approval for us to import the trial drug - Nifurtimox for Char to start treatment in SGP!!! Michigan doesn't respond to me - no loss. I bring Michigan to us!!! YEAH! Praying that this is the miracle we have been hoping for! Let this drug work the miracles on Char!!! NO MORE CANCER!!!"

This is the trial that we were supposed to go to Michigan to participate in. Its a Phase 2 trial now but it does have quite a fair bit of really nasty side effects. I am not looking forward to it BUT I have to remain focused on our one and only goal - to get Char stable. Hence, I can only brace myself for the challenges ahead, hope for the best, pray for the miracle!

Thank you everyone! Sending everyone lots of love and wishing you all good health and happiness.

Love,
Cyn mommy

An additional day in our treasure chest!

2011-07-20T18:14:00.005+08:00

Time to update again. :-) [A post written on 20th July but somehow didnt get published]

Can you sense my happiness?

Well, things have not been all rosy and easy. However, if we look at each day's tiny little blessings, then I would say that the feisty family is definitely blessed in more then one way. The simple fact that we got through last Friday's sudden turn of events with an indwelling urinal catheter is truly a miracle. Of course, it's not the perfect miracle that we have all been praying for but I will take it gladly.

I was a total mess on Friday. Rushing Char to Emergency and being told to head to the resuscitation room is scary beyond words. I was barely functioning because everyone was on high alert and Operating Theatre was fully prepped for a spinal cord decompression surgery. I didn't want to freak my princess and hence was trying my very best to act normal, look alive with a tears filled face. My white lie to char when she questioned my sadness and tears was: "I'm feeling so sick. My tummy is hurting and I feel nausea. That's why I am sad." Char said: "I'm sorry mom that you have to take care of me even when you are sick. Thank you mom. I promise I will take care of you next time when I'm old and you are sick. I will stay with you in the room when you take picture. I will feed you. I will also bath you and I will carry you to the toilet. I will wash your backside for you." Tears couldn't defy the gravity anymore.

When Char was wheeled into the MRI, I was sitting outside all by myself, crying non stop. I was desperately praying and cursing the damn cancer for being so cruel to my innocent child. I tried to prepare myself for a long night of surgery and recovery while being insane. I don't even know how to narrate to you. Another mom was just telling me the other day how she doesn't dare to tease others that they are behaving as if they are characters in a drama. Because the truth is our entire life is somewhat oddly similar to those TV dramas! With all the crazy scenarios you thought were ridiculous and only found in dramas to hype up the ratings are actually real life scenes in other people's lives!

You cannot even begin to imagine my fear when I saw our neurosurgeon Mr Seow walked out of MRI to inform me the 'good news' and the 'bad news'. Usually I'm in this 'semi-conscious' zone when I'm about to hear news of scans. It's the moment that could turn your world upside down - quite literally. And it's that simple. Just in a matter of a split second, you might find yourself dropping from heaven to hell or shooting from earth to heaven all in one second. Personally, for me to get through that is to remain 'semi- conscious' (for lack of a better word). It's like I have to be conscious enough to understand the news rationally and yet I cannot be too conscious because that will render my knees weak and I might slip into a coma there and then.

Anyway, the good news was no surgery was required because there was no spinal cord compression. However, the bad news was the tumor on her sacrum seemed to have grown and might be pressing on her nerves causing her bladder some sort of pressure such that she's unable to pee. I smiled for a few seconds there, hearing no surgery, no ICU stay and no numerous needles and tubies... But then I quickly asked, what's next? I had already called up our radiation oncologist, Dr Lee, informing him of the bladder issues before I even left home and so everyone was updated and aware of our latest situation. Radiation (as what I had anticipated) was the answer it seems.

We were discharged the next day on Saturday morning. But we were disappointed that we had to miss Char's Primary 1 School Open House. :-( I was probably the most upset. Jase was performing and we were all so excited to watch his performance. Attending Char Primary 1 Open House is a huge milestone that I had been looking forward too. Although our future is so uncertain, simply attending her Primary 1 Open House itself is one way I stay focused on the right path, the path to light and hope. The path to our miracle. To say I'm disappointed is an understatement. I felt like we had been thrown a huge boulder and I am crushed. It's a small insignificant non event really but somewhat I was irrational about it. Maybe because our lives now are filled with small insignificant non events that actually count towards our treasure chests.

I guess I lost my focus there for a bit. Instead of rejoicing in what I have, my sight was unfortunately set on what I've lost. It was silly. I'm glad that once we arrived home, I am reminded of how blessed we are to simply be home at that moment. And not some ICU bed, not anywhere away from home. :-)

Yeah! We are home!!! Everyday is an additional gift. Every morning, Char would get up as early as Jase and me so that she can send her brother to school. And every day, she will stress about what to prepare for her brother's lunch when we fetch Jase home from school. Last week, she made egg salad sandwiches and peanut butter sandwich daily. This week, we were unable to fetch Jase from school because we had to go hospitals daily for various appointments and she is actually rather upset. However, she has been sending Jase to school every single morning. As a mother, this is truly my greatest gift. :-)

Just a few days ago, I received an email from a donor saying that her friend who is recently diagnosed with cancer is inspired by my little Char. I'm happy to know that even during her difficult and tiring time, my Char is still able to give others encouragement and hope. Whoever you are, walking this journey is never easy. Let's fight on! It doesn't matter if you are an adult, a senior citizen or a young innocent child, no one should have to suffer and live like this. I know it's different being an adult cancer warrior from a child. I cannot even begin to imagine. Because with understanding comes more fear... At the end of the day, to me... We are all walking a painful journey which hopefully will end in the miracle we are all praying for.

On a side note, I do have a purpose in writing about the previous paragraph. After we went to NYC for treatment and coming in touch with so many of our fellow comrades in the pediatric cancer world, I'm somewhat influenced by the way information is shared online in such great details with treatment options, side effects and even simple descriptions of how one gets through a day of hell is so powerful. I've learnt more reading the blogs of all these kids then from doctors themselves. It's like a big responsive encyclopedia where you can ask and get answers from someone who has actually gone through the actual treatments and know first hand what to except. It's nothing like reading from medical journals. For awhile there, I found myself writing the same way as our friends in NY, sharing in great details Char treatment options and side effects, our entire thought process. However, as time passes... I somewhat figured that most of our supporters are not folks who would understand medical terms and specifically Neuroblastoma treatment options, which by the way is great news. We don't have that many Neuroblastoma kids in Singapore, thankfully. Hence, as time passes, I found myself getting back to my narrative writing, usually surrounding our roller coaster emotions and probably a large part of random ramblings.

Today, I feel somewhat inspired to share the experiences we have had walking this journey, specifically some of the observations I've made in the medical world. Some of the experiences may be particular to Singapore only but some of the experiences could probably be found in any medical world anywhere. For those of you who have been following us over the years, I'm sure you would remember some of my frustrations with the systems and regulations. Nonetheless, systems and regulations are not what I want to ramble on tonight.

Instead, I like to highlight to some of you who are unfortunate to be on this journey like us. The most important thing on this journey is to find yourself an oncologist that you can trust. I'm certain there are parents or adult patients who share a different perspective from mine and there's absolutely nothing wrong with it, the important thing is to find one who shares the same perspective as yourself. And by trust, I mean that. There are a lot of smart doctors out there but medical profession is more an art rather then science. It's all about judgement calls. You want someone who at the very least is supportive of your every decision. Please do not hesitate to seek a second opinion. There truly is nothing wrong with it. I don't know if it's a cultural issue or what. But I was one of them. I had sort of refused to seek a second opinion when Char was diagnosed. Part due to my ignorance, part inertia. It was too much to ask of me. My world just literally crashed and I was too 'dead' to seek another opinion. And I had been brought up to believe that KKH is THE BEST Children's hospital in Singapore. Why would I even want to seek elsewhere?

Now that I look back. The day that I went to NUH to seek a second opinion with Dr Aung was truly the best thing that can happen to Char and me. I honestly cannot imagine WHAT could have been if not for Dr Aung. I can safely say that without Dr Aung, my little girl probably wouldn't be here, walking her brother to school daily inspite of her own suffering and pain. And all it took was one 45mins consultation for me to make up my mind to switch under Dr Aung's care. That was truly the smartest thing I ever did my whole life.

I have no doubts at all that had it been other doctors treating my princess, with this progressive disease, many, if not all, would have tried one way or another to convince me that there isn't any hope and that I should be bringing her home and keeping her happy. No one would be able to tolerate my irritating demands, my constant pleads to bring in another non FDA approved drug, my annoying hounding. No one but our dear Dr Aung. Believe me, I am not exaggerating when I say that. Imagine the many requests I've put Dr Aung through: - Can we bring Char to Japan for any trials? Can I bring Char to China for alternative treatments? Can we apply to import in the non FDA approved drug Millennium? Can we try to bring in another non FDA approved drug Nifurtimox?

It's more then just tolerating my requests. I'm sure other doctors would at the very minimum listen to me rant and plead. But Dr Aung has actually agreed to my every plead. She asked, she wrote, she applied, she checked, she enquired and she made sure she tried as hard as I have.

So, my point is GET a second or third opinion. Get the one doctor you can trust to work together with you and not against you. It's not about being right or wrong. Because at some stage, there is no black or white, it's all grey and it's all about what you want. I want to fight for my child and to quote other parents, "Even if it's death, we will die fighting." As parents, somehow or rather, we will know when to stop... The crucial thing is not to have a doctor we depend on entirely to tell us to stop when we don't feel that the time to stop is here yet...

Of course, the reality is that there are smart doctors and there are compassionate doctors. There are practical doctors and there are doctors who would go the extra miles for you. Find the one you can entrust your life or your child's life onto.

Getting the right doctor is going to make ALL the difference between hope and despair. Just as everyone tells me to remain hopeful, it's crucial to have a supportive doctor to even have any hope to hold onto.

Secondly, while we should trust our doctors, it never hurts to learn more yourself. There are some smart doctors who never like parents like myself, the type who questions and is in need to understand as much as possible. Those are the doctors I can never work with. I need someone who can be patient to my questioning and my need to learn more.

Hmm, just my 2 cents worth. I hope that my sharing would help those on our journey in a small way.

Love,
Cyn mommy

NO Spinal Cord Compression

2011-07-15T21:54:00.002+08:00

Dear all,

Good news - No spinal cord compression hence no surgery!

Bad news - tumor on sacrum/lower back grew and is pressing against bladder...

THANK YOU for all your prayers! It's saved us from another painful risky operation.
Keep them coming in...

Love,
Cyn mommy

Emergent MRI

2011-07-15T19:11:00.002+08:00

Char woke up this morning unable to pee again... First sign of ANOTHER possible spinal cord compression... I don't know what to say... We just had the emergent decompression surgery barely a month ago right here and we were discharged for only a couple of weeks...

I just had to hold my own baby AGAIN and tell her that she has to have another urinal catherer inserted and she might have to have another major operation... And she has to go through MORE PAIN AGAIN.

Please pray that the scan will show NO spinal cord compression and that she will not need another surgery. Just how much does Heaven think I can bear, I really have NO IDEA. I know I will walk through fire if I have to, for my own child... BUT... This is truly too much to ask of my girl... It honestly hurts so much...

I don't even know how I dragged char and myself to the Emergency...

I can barely process and I can barely function... I'm on auto pilot mode again... This feels like a nightmare... A nightmare that's never-ending...

Looking at Charmaine... I don't even know HOW she does it... Just being her... Going through all these horrific ordeals time and again... And yet, she never ever wavers in her determination to want to get well... She is fighting so hard to live... She is fighting so hard for her mom and her brother to live...

Please give my baby a break and let her live... She deserves it... She deserves the chance to live more than I do... Take my life, make me suffer... Whatever... Just PLEASE give my poor child a break and let her live happily, normally and healthily!

Tomorrow, we were so excitedly preparing to go to her School's Primary 1 Open House... Jase is performing... Now everything is ruined... All thanks to you, cancer. :-(((((

Please pray and pray and pray for char to get well...

Thank you.

Love,
Cyn mommy

My one and only princess Char turns 6 TODAY!

2011-07-14T15:30:00.002+08:00

A Celebration of Life, Courage and Endless Love...

Happy Birthday to my one and only princess Char! Thank you for coming into my life this very day 6 years ago.

I am burned out from blogging hence I have been taking a long break away from this. I'm sorry.

Char is relatively okay. We had a wonderful birthday celebration on Sunday with the help from Sentosa Resort Worlds and 2 amazing friends of Char. Despite the pain, Char never failed to smile for everyone who turned up at her party.

The last few days have been a little more challenging because she has been experiencing more pain but my little girl doesn't complain easily and still wouldn't. I gotta read her facial expression to gauge her comfort level because she is pretty good at suffering in silence.

We are home and Jase went back to school. Char is unable to walk and on loads of morphine. In between all our insanity, we strive to have some normalcy and pretend that everything is OKAY!

I will hopefully find the strength and the patience to update more often... But I guess right now, escaping from blogging is like escaping from cancer since I don't want to face it...

PLEASE DON'T STOP PRAYING for my little princess. Argh, I'm tearing again! I honestly cannot type this darn blog without tearing! It's so tough! Forgive me when I don't update. :-(

I'm scared to hell but I continue to pretend life is normal and everything will be okay! We are just taking a longer then usual journey, walking a longer path then others but everything will be OKAY. It has to be, right?

Love,
Cyn mommy

We got HOME on Monday 20th June!

2011-06-22T08:21:00.003+08:00

After more than a month of inpatient stay, we were finally discharged on Monday with a PCA pump delivering IV morphine 24/7 daily.

There was a couple of scares after we left KKH, with her complaining of more pain and her thigh looking more swollen again. I was immediately worried and paranoid, texted Dr Aung and she increased her steroids again, hoping to control the inflammation.

Today at 8am now, we are at Mount Elizabeth Hospital waiting for her radiation. And the swelling in her whole bod has gone down considerably. Except her right knee of course. The right knee where it all started more than one and a half years ago where she first relapsed. And we never could get it under control. :-(

Anyhow, Char is feeling extremely happy to just be home! She's smiling, laughing and giggling to herself all the times. It is such a wonderful sight to just watch her happiness. It's so infectious. Despite her pain, she still cannot hide her elation and joy.

I'm having a tough time here. Been hearing too many bad news and too many passings from our other families in NYC. Cancer sucks! NB is so disgusting and cowardly!!! How can I ever learn to forgive cancer when it has robbed so many of my friend's lives? And these are little kids who want to live! These are little kids in their single digit of age, wishing rather to be in great pains than die.

Gotta rush to KKH now for our next appt...

Will continue later...

Please continue to pray for Charmaine, and for so many other kids battling cancer. Pray for a cure for all. Pray for a lifetime of good health and happiness...

Love,
Cyn mommy

Up and down again...

2011-06-15T09:38:00.003+08:00

Dear all,

Char's legs has gotten more swollen... Triple the original size... Low albumin level... Swollen abdomen... Been sleeping most of the days... High fever of 39 degrees daily...

She's covered with a ton of antibiotics, narcotics...

Drs think she may have some infection, cellulitis... Inflammation from tumor...

Please pray for char to over come this against all odds... And get well again...

I'm scared, worried and helpless... Fighting against my own vulnerability and weakness to hang on, to think as calmly as possible and to not fall...

Love,
Cyn mommy

Sharing some photos

2011-06-12T16:52:00.005+08:00

Cyn is unable to upload photos onto blogger so here we are sharing some photos with our lovely friends and readers with captions from cyn mommy.

In ICU post Op on Saturday (28 May 2011)

Barely 48hrs post Op on Sunday. Showing me her trade-mark smile n peace sign. Still in pain and couldn't move lower limbs BUT she still smiles for me.

Plug on one hand, needle in her port-a-cath and swallowing medications like they are her daily meals... My little girl is unfazed. Shld have seen her look of determination when the needle was poked into her hand. NOT a single sound literally! No resistance. No shakes and trembles. She kept her hand as still as a statue, held her breath, shut her eyes closed with determination, a face of sheer concentration. Even I was in awe.

I asked her, "How do you do it honey? Even mom can't." She replied, "Actually I was going to cry but than I heard you say it's OK so I just thought it's OK." Her words brought such warmth that I feel so loved. There I was inspired by her bravery and strength, and here she is crediting all that to mommy's words of "It's OK". If only, if only it's truly OK. If only I could have the same strength as hers with just hearing those 2 simplest words from the person one loves most.

Char missed having the cake from her fav shop so we ordered one and celebrated ourselves inpatient! Just my princess and me! She was so HAPPY!

My little princess with a swollen leg, pain, fever, dizziness, nausea and constipation issues... And yet, her spirit is amazing and just look at her posing for her mom despite it all!

There is also a video of lil char and jase singing but I'm not able to upload that.

Seriously, lil char is able to grit her teeth and bear with so such sickness and pain that I feel so ashamed of myself feeling so sickly every single off day for 2 weeks and counting.

Love,
Jolene

A Record Breaking Day 22 of Our Inpatient Stay

2011-06-10T21:57:00.001+08:00

Yes, you heard me right. We are still inpatient and it sure sounds like I'm whining about our long stay. Ghee, this has far exceeded our previous maximum number of days inpatient and that's 8 days! Indeed, one of our tiny blessings have always been Char's ability to complete a chemo without glitches or recover from her super high fever just in time for us to get out of hospital before the dreading needle change and that's usually Day 8th of inpatient. I think if you ask any oncology mommy, they probably might tell you Char being able to get out by Day 8th for our entire 2 over years journey should be considered a HUGE BLESSING instead! Well, it probably should.

Anyhow, we are at Day 22nd today and we were actually scheduled for discharge yesterday evening after our Radiation Therapy (RT). However, we were surprised with an OPENED surgical wound instead of a nicely healed one when the surgical team attempted to remove the stitches on my baby's spine yesterday evening!

This mommy here is not doing as well as our little princess. Neither is our dear prince Jase. As usual, like a champ, our princess kept it together and did not even whine, sob or get a tiny bit disappointed over last night sudden change in plans from getting home to staying in. Jase had waited patiently for us at home and when he finally saw Gong Gong (grandpa) arrive home past 9pm without his mom and sister, he called us in a teary voice. He cried: "Mom, why didnt you come back? I already packed up and cleaned up the room and we also changed the sheets! I even turned on the air-conditioning for mei mei!" That was about all I could take to hold it together. I started to tear a bit and Char immediately asked me, "What happened mom?" That question was my cue to suck it up and stay sane! I forced my tears back in and tried to flash my smile, saying my best excuse, "The doctor made me mad." The truth is I was so ready to get out and go home to be with my son... And just be home! I'm tired. Not sure from what since I've spent the last 22 days either on bed besides Char or in an ambulance besides Char. It sure doesn't sound like anything menial but it just drains the energy out of me.

Somedays it feels like I'm in this epic drama series, constantly 'acting'. On the exterior, I look normal. On many occasions, I even hear of others telling me that I look so happy that one will not be able to tell that I am walking in this journey. Nevertheless, on the inside, I am feeling despair, fear and helplessness. I am not saying I am unhappy; I feel so much happiness when I see my princess's smiles, a set of big inquisitive eyes and her voice even! However, behind every happy smile on my face, there is ALWAYS a tint of sadness, a painful reminder of how tough a journey my little girl is on, a heartbroken Mother's wish of seeing her daughter grow up healthily and normally.

'Nothing feels the same' pretty much sums up the 'ACT'! An act that may be played out easily on good days and one that requires tremendous amount of effort even for the lines to be read out on bad days... Somewhere in my mind, what I honestly feel like doing is simply to park my physical body in one hidden corner and just rot there... Like literally do nothing and rot away! Don't think, don't talk, don't eat and just don't bother!

Good days or bad days, life goes on and the 'ACT' continues... In between those acts, reality and imaginary becomes a blurry line. Ironically, the blurry line is not a bad idea after all. Because between putting an act of happiness and the heartaches in your deepest soul, maketh believe somehow becomes a reality...

So coming back to our reality now! I have to say "WE ARE GOOD!" despite everything that we are still dealing with including that darn fever which just decided to show up this morning!

~~~ WHAT'S GOOD AND MIRACULOUS ~~~
In my last update, Charmaine was still recovering from her spinal surgery and we were still uncertain of how much permanent damage had been done to her lower body and bladder... Guess WHAT! My little princess regained the sensation and mobility of her lower body in a span of about 5 days!!! Woohoo!!! Everyone was so happy for her! When we removed her urinal catheter on the 7th day, she almost immediately peed on her own and regained the control of her bladder!!! It was simply too amazing!!! I know deep in my heart that my princess would totally be able to go back to the little girl she was before the spinal compression and there was never a moment of doubt even though I didn't mention it for fear of jinx-ing us BUT YEAH! And that's WHY after her surgery, I knew I had to be thankful to all the 3 doctors who came together to make the surgery an option and a success! Each day, I would tell Char that the doctor said others will need about 20 days to recover but you will walk on your 10th day! And like a champ, she recovered and did it even under 10 days! Did I not mention before that my little princess just has this capability to simplify every situation for me? I know everyone must be praising lord or cheering happily for her upon reading this! YEAH!

From Saturday the 4th, she continue to make gradual but obvious improvements each day, eating more, talking more, laughing more and becoming more awake instead of the dopey, tired looking little girl.

She has gotten so well that by Wednesday the 8th, she started to talk about wishing to go home and sleep with Kor Kor Jase soon! Hearing her thinking about going home is a huge step forward. For the whole duration of our stay over the nearly 20 days, she had not demanded to go home at all. That was unheard of. Usually by the 6th day at most, Char would always start to whine about wanting to go home but this time, even when I probed her, she didn't even answer 'Yes I want to go home.' The reason was plain and simple. I feel her too. She was in too much pain and discomfort even she herself wasn't confident to go home. Me too, I had shared openly my fears and hesitation of going back home without getting her comfortable. I didn't want to bring her home and cause her more pain and discomfort due to my incompetency to keep her comfortable. That would be wrong.

Besides, my little princess would always indicate to me when she feels that she's ready return home with mommy! And she did!

It's a wonderful and awesome feeling! Like I said, we are NOWHERE near safety at all. If anything, our forest fire is still spreading wide and rapid! On top of our forest fire, we still have drought problems, and many other issues! However, when I look back to 2 weeks ago, our horrifying Friday and the emergent spinal surgery or even 3 weeks ago when she was in so much misery and excruciating pain, we have come a long long way! Another incredible and miraculous journey and recovery! I could barely believe it. Barely 3 weeks ago, I found myself typing on Facebook telling my friends that they should probably come visit soon if they wish...

Thank you. Thank you to everyone for all your prayers. Every hurdle that we cross, no matter big or small, brings along with it gratifying happiness and relief. I'm counting the baby steps we take while staying focused on our goal. I'm barely hanging in there but thank you to whoever is out there that has once again lifted us away from danger and given me a renewed hope and faith to continue my journey ahead. It is definitely what I needed most at my most helpless and vulnerable situation. :-) Thank you to the universe too for conspiring to make everything turn out well and beautiful. For turning my dire situation into one of hope and miracle. (I know I may turn around and start hurling abuse at you the next time I fall into despair, but please just forgive me when I do. At least, I didn't forget to say my 'Thank You' when I should!)

And last but not least, while I have a great deal of difficulty having faith in God or Buddha at this time of my life, I feel that it's only fair that I give thanks. Thank you God, Lord Jesus for seeing us through another trial. Thank you for working your magic on my little princess even when I have zero faith and thank you for the renewed hope.

Thank you Buddha for the mercy and for blessing us with yet another successful crossing of our obstacle.

Of course, I never forgot our 3 healers! They don't read our blog and hence I've already written them an email to express my gratitude and appreciation. Thank you Dr Aung lele, Dr Seow and Dr Lee Kim Shang!

~~~ A surprise report by CNA on Neuroblastoma ~~~
There were actually quite a handful of kind souls who separately emailed or texted me on the news reported by CNA on one of the latest trial reports on Neuroblastoma.

I am pleasantly surprised that CNA actually did an article on Neuroblastoma and very touched that there are so many of our supporters out there watching out on latest news for Charmaine. Thank you so much to all you wonderful souls! I do read the emails. I am aware of the trial reported by CNA and have been following closely the development of Neurobastoma treatments. Unfortunately, the trial reported by CNA is more like a bone marrow transplant (somewhat complicated to explain here) and it will only work on minimal disease. As for the other treatment options abroad, I feel that Charmaine just isn't in any position to travel right now and it wouldn't fair for me to drag her abroad in her condition either. However, believe me, I never stop questioning myself. What if I transport her in an air ambulance? What if the treatment in Michigan can actually slow down her disease by a lot... Too many what ifs.

At the end of the day, the reality staring right back at me is, I could barely even get her out of hospital and back home... What more do I want to achieve. I've been planning, changing and cancelling our trip to Sentosa so many times, the place she wants to go back and play with her brother and yet up until today, I still can't fulfil that wish of hers...

Every damn nerve and cell in my body is always working to come up with the next option, pushing my body to work hard to save my own child... To disregard Char's body and just focus on getting her cured and healed... It was so bloody painful 3 weeks ago when I had to literally forcefully knock myself on my head and create pain to the brain inside to even attempt to talk to the palliative team, to feel like I am manipulating my lips to speak of questions I never want to hear others mention... To ignore my maternal instinct to save and make my brain learn of methods of pain relief, narcotics, End Of Life symptoms... It is too bloody upsetting to even type about them now!!! And how much it hurts and tears me apart when you actually see an obvious difference in the management of your child. On the first day you step into the pediatric oncology world, one of the first things they teach you is to BE FEARFUL OF ANY FEVER! We are all given a letter with our child's name imprinted onto it stating that Neutropenic Fever is a medical emergency and it allows you to be propped to the top of the urgency list once you step into Children's Emergency. And 3 weeks ago, for the first time in our journey, I got to hear that it's OK for me to keep Charmaine at home even with a fever. I just need to learn to manage it.

My world came crushing on me. What do you mean it's OK? Of course it's not ok. A fever is a medical emergency! She needs her blood cultures drawn to check for infection. She needs to be started on IV antibiotics! Those were the sentences exploding in my head, trying to force themselves out of my mouth and into the face of the doctor talking to me. But all I could manage was a muted nod of understanding and just willing everything to stop and time to pause. Why are you treating my child differently all of a sudden? It's not fair! :-(

That was probably why I was so down and heartbroken 3 weeks ago. It was simply too much to bear... To see your child suffer so much in pain daily and to hear those words from people you rely on to treat her is so hurtful and devastating I don't even know how to describe.

Most of our doctors here are wonderful and most of our nurses here are great. I know they probably feel as heartbroken as I am to have to discuss about some of the hard and painful truths... Nevertheless, I admit that when I first heard those words, I definitely feel anger on top of despair. It's not right and it's not their fault but I am just irrational. Is that a good enough excuse for my lack of understanding?

However, despite our hard and painful reality, when I saw the doctors' faces of shock and sadness when Char was first diagnosed with the spinal cord compression and the subsequent faces of elation and relief when they saw Char recover fully from her surgery and is able to smile and joke with them... I know deep down inside the doctors' hearts, probably everyone is always wishing secretly against their science and medical training that the kids they treat will all defy their knowledge and triumph as a miracle. Don't we all wish for the same?

~~~ Challenges Abundant ~~~
Did I do a good job of reducing the gloom and grim thus far? I am not sure but I sure as hell is trying! My mood today ain't exactly one of gratitude and happiness because I miss my son and I think he is starting to feel the effects of not having his mom and sister with him for 3 weeks now!!! He still visits us every night but he's starting to feel the toil of the journey back and forth... Who wouldn't? I feel for my dad who has to cook and bring meals to Char daily, commuting to and fro daily, without complaining. And also throwing Jase to my mom totally.

As the days passed from Saturday to Wednesday, Char got better mentally and physically. However, she has not walked in 3 weeks now. Only sits up on the potty when she needs to pee. Couple that total lack of movement with heavy narcotics, guess what do we get? Severe constipation and stomaches! So severe we were up whole night sitting on the potty every hour in severe cramps and trying to poo with no success. Laxatives, suppositories... We are using what we can... Yet we are still getting not much result. The plan is to use Oral Fleet tomorrow - the nasty stuff they make you drink before a colonscopy. I heard its very nasty and potent...

To spice things up, add into the recipe a constant dizziness from the second day post surgery which has never gotten better despite all the various medications we are throwing into her body. We have even gotten Char a Sea Band!

Needless to say, the challenges don't stop at 2. The constipation, the dizziness and the constant nausea with vomiting just about stretch my little girl's body and tolerance to the max. Yes, we were definitely making progress in some areas but we were also heading downhill in other areas. Did I even mention the nasty side effects those narcotics can do to your mind and mood? While she was on IV morphine, Ketamine and midaz, she became really depressed, quiet and showing barely any response or interest to anyone, not even me. She also lost her appetite and was just laying on bed with a distanced look. Everyday, we wake up trying to figure what caused her moodiness and just lack of response, tweaked the narcotics and observe. It's a daily challenge. Finally, when we weened off her 2 narcotics and kept to just IV morphine, she slowly returned to her old self. Doctor was even considering anti-depressant at some point but I refused. We were already pouring so much medications into her body that it was scary to even count them. One medication causes some side effects and than we add another to counter the side effects of the first and it just continues like a vicious cycle that seem never-ending!

Thankfully, her mood got much better and that definitely helped to calm my nerves. We are still struggling with constipation, dizziness and nausea. But her pain actually got better at the beginning of the week! It got so well that I bravely asked if we could convert everything back to oral! Including the narcotics! I really hope that we could because I know that would make Char the happiest and being a self conscious little girl, it would definitely enable her to go Sentosa stress free! The doctors agreed and we started slowly converting everything back to oral... Wow... The amount of medications I had to feed her was equivalent to a meal! Her nausea definitely made matters more challenging. But as always, my little princess did not complain even one bit! She will comment on the nasty tasting ones but she still swallows them dutifully without question. We had to space the medications out until 3am and she will just force open her eyes and swallow them.

And everything was going accordingly to our wish and hope. Well, it seems. We were due to be discharged last night. Murphy's Law or whatever. Lady luck decided to forsake us for a bit. In my heart, I was already on the careful watch... Char's knee seem to swell up a little on Wednesday and her temp which had been in the low 36ish since her surgery climbed to low 37ish. She also started to complain of more pain in her right knee starting Wednesday. By Thursday, her knee looked even more swollen, and her temp climbed further to high 37s inching dangerously closer to the magic 38 degrees of fever! If you recall earlier I had mentioned that our game plan is now different, and even if she has a fever, we could potentially still go home and manage the fever myself because the key consideration is not as much of a coverage for possible infections but more of allowing the child to spend quality time at home...

So WHY than are we still inpatient?
Did I mention about her surgery wound not healing and there was some liquid oozing out when they removed the stitches last night? Oh, did I also share with you that there is actually a gap when some of the stitches were removed? The wound is opened. Not a big gap but to a paranoid mom, that was enough to send my sanity out of my head. They only removed about 1.5 cm to 2 cm of the wound and there I was staring at the cut opened skin that didn't look normal to me. So I asked for the second time (first being when I saw the liquid ooze out), "Is that even normal?"

*Big Sigh* I don't think I should narrate that drama today. I could write another 5000 words thesis on that. Let's just say that the doctor who handled the situation wasn't experienced enough. I reminded myself not to be personal, and to be objective on the issue. To be fair, I would even go as far to say that I think I reacted as well as one can be, given the situation of staring at your child's opened surgical wound. It isn't that horrible, and the wound looks much better and drier today. But there I was trying to comfort my little girl who was screaming and crying out in so much pain, and trying to keep my cool, analyze the situation and deciding on what to do, what I got in return from the doctor was a very poor reaction and even poorer subsequent response. I had seen others remove stitches on my little girl before and I had seen her crying out in fear and pain. Naturally, my face would contort into an expression of pain and misery. I always do. Who doesn't?

However, the gentleman last night decided to say things out of context for some reason and he basically said the wrong things at the wrong time to the wrong person. Okay, I am finding it rather funny now recounting the incident but it definitely got my blood boiling last night! Dear doctors, if anyone of you is reading this, when faced with a situation of liquid oozing from wound with a gaping opening in the wound, please do not stretch the parent's patience by introducing the topic of "Actually it's my doctor's right to not allow you in the room while I do the procedure." OMG. I was flabbergasted, shocked and angered. It just came out of nowhere. He probably felt extremely stressed by my proactive questioning of the situation and decided to change topic. Alas, what a silly topic to choose! His change of topic basically set me off on my ranting trail! :-) Seriously, I wasn't in the room shouting abuse and screaming madly at him. Neither did I demand for him to stop whatever he was doing and get someone else in... ( I had done that to others before ) In my opinion, I did nothing to warrant such a response from him. If anything, I was there to comfort Char and made sure that she remain as cooperative and as calm as possible for him. Besides, it was honestly the worst thing to say to a worried mom, already upset with the turn of events and a ruined plan of returning home. Hence, I decided to show him my 'debating skills' and threw some of my old business law lectures back at him. We concluded the session with me feeling a sense of justice done! [I sincerely apologize for this unimportant bit of ramble. Irrelevant to some extent but yet somewhat atypical of a day's life in the hospital. I figured that since this blog is a journal of our journey, might as well share some of the frustrations with you as well.] Most of the days I write about the emotional roller coaster ride we are on, updating on Char's battle, usually preferring to leave out the frustrations and challenges we faced on a daily basis within the system. There are surprisingly a lot we have to deal with. I guess it's pretty much what all of us have to deal with daily, within the office, within the home or even within the country. Nothing's perfect and we aren't the only ones facing frustrations each day. Maybe the difference lies in the fact that the frustrations in the hospital system affect our child directly and most of the times, literally physically causing more pain. We parents aren't medically trained professionals and may not think on the same line as a medical professional. But as a mother (or a father), especially in our case where we have seen things and procedures done in different ways which cause less pain, the basic instinct is to protect and fight for our child. I'm so sorry! I seriously went out of point here!

Anyway, why we are still inpatient is because my little princess spiked a fever this morning - 39.5 degrees! And because of her wound issue, we cannot simply treat this fever as a fever caused by tumor. Rather, we have to be prudent and cover her in case it's a sign of wound infection. So we have to pray that the fever goes off and her leg pain gets better. In fact, her swollen leg has gotten so painful last night we were asking for oral morphine every hourly and yet it didn't help. This means that we had to switch back to IV morphine this morning and it looks even more certain that we will be going home with a IV pump hooked up onto her body 24/7 delivering morphine into her body to control her pain.

It's considered a slight setback from our initial plan to return home without any pumps. However, looking at the macro picture of what Charmaine has gone through and overcome in the last 3 weeks, we are definitely at a moment where we should rejoice. She has come a long way and despite all the pain, the bloated tummy, the tummy cramps from constipation, the constant nausea affecting her appetite and her nagging dizziness, she continues to take each day in her own stride. Most of all, she is not showing any sign of defeat. She bravely fights the monster, do what she has to do, endure all the poking and daily probing by doctors... With an attitude that not only motivates me to continue and keep the faith but also one that gives me tremendous amount of pride to be called 'Charmaine's mommy'.

Hoping that everyone is able to keep your faith amidst your own challenges and feel the love despite the pain. Most importantly, may each and everyone of you be blessed with good health.

Love,
Cyn mommy

PS: Please continue to pray for the miraculously healing of my little princess Char. Please also pray that the challenges we are facing now can resolve with time, the right medicine and let Charmaine be cured totally! No constipation, no tummy cramps, no nausea, no vomiting, no dizziness and no more pain!!! Let Charmaine stand up and walk again!

Thank you all!

My Amazing Little Princess

2011-05-31T19:54:00.000+08:00

I have so much to say, so much to share and a lot to update but I honestly have no idea where and how should I begin.

Let's just start by "Why the lack of updates?"
Because I've been trying to get on 'www.bloodspot.com' for more than a week to no avail. Now I realize it should be 'www.blogger.com'. I feel so "DUH"!

In the past week, there were many moments when I was in such misery and feeling so much despair I just wanted to come online to ask for prayers. Obviously, I was being really dumb because I couldn't get online. There were also abundant moments that I just wanted nothing but remain concealed in my little cave, our inpatient room. I'm just incapable of any form of interaction with anyone. Because I have had enough of crying in front of my little girl, so much that I wish desperately someone would kindly cut my tear ducts. I figured that would have been the simplest rational solution to my never-ending sobbing. And I honestly have had enough of seeing my tears. I bet Charmaine must have felt the same.

Hmm, as I sit here trying to recount back the events that unfolded last week, I am struggling to even remember when we were admitted. OH, now I remember. How could I not? It's such a special day. It was the day that I had promised myself to write an entry to thank a very special and treasured someone. It was May 20th 2010. It was a Friday. It was the day my beloved son turn 7.

Yes, things just always have to happen on days when you wish that Heaven will be kinder to you. You silently pray and wish that just one day, for that just one day, you beg the universe to conspire and allow you to have a brief moment of breather. But NO it does not. The universe or heaven or fate (whatever you like to term it, it does not make much of a difference to me) enjoys pushing the soul to it's limits.

I regret to say it had totally succeeded during that round. I was beaten and dejected. No matter how hard I tried, I just couldn't even pick myself up a tiny bit to even put on a smile for my son on this special day. While I want to tell you, "no matter how rough the day was, I am grateful that Jase, Char and myself are together to make it through", the truth is far from it. Believe me, I know there are others doing much worse than me, others without their child, many others starving and even more without a roof over their heads... I know... I really know. And I am constantly reminding myself that it really isn't that bad and I am not the most devastated soul on earth... Nonetheless, it really doesn't get any easier. It doesn't at all. Just because there are people in worse situations than I am in, just because there are many others who had lost their precious little ones SIMPLY DOESN'T REDUCE MY PAIN a tiny bit. My heart hurts so bad. I feel the pain for others' loss like my own... And I feel the pain of my own child suffering. The pain of suffering is not one bit lesser than the pain of loss and vice verse...

Hence, regrettably... That had to be the worse day for Jase... For Charmaine and for myself. Even if time could reverse, I doubt anything would have happened differently... Even if at the back of my mind, I know it's highly possible that it may be one of our last birthdays together... I am beyond upset. I of course feel anger at myself too, for being totally unable to cherish the day the way I should have.

The truth is I am exhausted. I am so tired I couldn't even muster up any adrenaline to be alive and present. And I am so afraid to confess my exhaustion for fear that Heaven may interpret my exhaustion the wrong way and decides to steal my child away from me.

Anyway, we have been having pain at home for a few days and on Thursday night, it had gotten progressively worse to the extent both Char and I couldn't even get a wink of sleep. On top of pain on her right leg, she suddenly complained of pain in her left rib and abdomen. I was totally freaked out. I know of pain in her right leg and we have been living with it for more than a year now so we kind of know that infection or inflammation due to tumor growth may be a factor but I'm entirely new to infection or inflammation in the abdomen and the rib. Because of some other cases in the ward, my mind immediately took to the worse, fearing infection that may be life threatening.

On Thursday morning, I had even written Dr Aung an email, telling her that it seems like we were going towards to fever scenario. She usually starts with pain in her knee/leg and when it starts to be immobile, that's when the fever will set in. We had a scheduled CT simulation for Charmaine's Tomo Therapy at Mount Elizabeth Hospital with Dr Lee Kim Shang and somehow or rather, I managed to bring Char to Mt E to complete the simulation. Of course, I sort of prepared Dr Lee for a highly possible inpatient stay for fever.

True enough, her fever decided to spike on early Friday morning. Fever and pain are one of the worse things... Charlene had once again taken leave on Jase's Birthday and arrived early at our home. Dropped us to KKH emergency before bringing Jase out.

I texted the Palliative team and Dr Aung who was at course about Char's pain and fever. Unfortunately, Char had a cough and we required isolation. No isolation room in the oncology ward, hence we were lodged at some surgical ward single room which looks marvelous but is nothing but horrible beyond that. They just aren't trained in treating cancer kids. Thankfully, Dr Wynn from Palliative came by asap to access her pain. Throughout the 2 hours at Ward, I was self medicating with morphine and paracetemol, checking her temp myself... What were they interested in checking? SPO2! her oxygen stats! DUH!

And the Medical Doctors who came by were just, ermm... Inexperienced is the kindest word I can come up with. I had to keep repeating myself over and over, time and again to different nurses, doctors... The time I fed her the different meds when we were inpatient the whole time! I was already feeling like I am hyperventilating trying to keep Char comfortable... Feeling shitty because I just totally neglect my son's birthday... And yet, they kept putting my brain to further tests...

After a good 2 hours, she was not even accessed, no blood cultures were done and no antibiotics were started. When it was finally done 3 hours later, only one antibiotic was ordered. I wasn't comforted at all. In fact, I was highly stressed. I felt like I had to take charge because I simply don't trust the doctors who weren't experienced in managing cancer kids. And I did. I stressed that I am very anxious over her abdomen and rib pain and I kind of demanded that an Ultrasound be done. I honestly felt that it was a simple test and there was absolutely no need to observe her further since she's been having pain over mor than 48hrs which got progressively worse instead of better. If there was truly an infection, there wasn't any more time to be wasted, and the right treatment should start asap!

We did the ultrasound scan and the result came back normal which set my mind at ease a little.

Than barely a couple of hours later, Jase came by the hospital feeling lethargic and grumpy. I totally don't blame him. Yet another year at the hospital for his birthday... I had assumed he was just upset at us not being able to celebrate the day with him... But it turned out that he was ill. Hence the lethargy. And not before long, I started to present symptoms of some sort of flu myself. So yeah, Jase was suck at home, Char was in pain and feverish at the hospital and I was feeling ill too...

She continued to spike a fever daily and that was scary in a different way...

That was our weekend...

Come Monday, the palliative team still couldn't manage Char's pain. There were times I thought we were close to reaching a regiment that might actually keep her comfortable. But those moments were swiftly replaced by a different area of pain...

Finally, the Acute Pain team was called in... On Wednesday.

Char was started on IV morphine. That seems to work a little better... But that brought along different side effects... Urinal retention... Constipation... Dopey...

So, we added more medications to counter the constipation... Still in pain... Tried to tweak the IV Morphine...
On Thursday, IV Ketamine was added onboard...

Throughout everything, my little princess shouldered on. She cries when she is in a great deal of pain and shouts out loudly, "Mommy, I love you so much!" At her most painful, more vulnerable moments, not once did she curse or throw a tantrum, instead she just keeps telling me in between her cries that she loves me so...

She knows I love to see her smiles and she will make every effort to smile for me when she is awake and not lethargic... I have a couple of pictures from her post Op with her trademark smile... Need to figure out how to upload here for you all...

We were nearing a comfortable level with her pain when Friday brought on another nightmare...

I am not sure I want to start the day's events that went horribly wrong in this entry... Maybe another day... Nothing short of another movie in the making... From the loss of control of lower body to horrific pain from urinal retention in her bladder which couldn't function, to a last minute urinal catheter insertion, to a immediate ambulance ride to Mount Elizabeth hospital, to a emergent MRI on her spine, to another ambulance ride back to KKH to an immediate spinal cord surgery... To an overnight stay at Children's ICU with numerous puncture holes marks on her arms... To numerous tubes, drainage, and being hooked up to all sorts of monitors...

What is important for me to remember about Friday's nightmare is how brave and how resilient my little girl is. She woke up to being unable to move and feel her lower body and yet she has never even cried once because of that. When I asked her "what's wrong" upon seeing her shock and fear, she answered me in a way that makes sense to her "I think I feel pain in my left leg". Despite her fear, she didn't cry. I know its because she didn't want to make me upset. Despite her young age, she was matured and smart enough to try and rationalize her situation in the only way she knew - had to be pain.

It was only when she kept asking me to touch her toes, move her legs in a particular way that it dawned upon me something was not right. While I was certain something wasn't right, never did I imagine it to be paralysis. I knew there was a tumor growing dangerously towards her spine but it just didn't register to me that it was paralysis. I wasnt sure if I was just plain dumb or was I just numb.

Friday was also the first time I had actually allowed myself to answer in such a haphazard way to a doctor! To think that I actually replied "I don't know and I can't think" to Dr Lee is unacceptable to me. Throughout the journey, I had never once allow myself to be taken over by emotions and just quite literally switch off during consultations. No matter how tough it was, and whatever horrific news was thrusted onto me, I would always force myself to breathe and to think and respond as rationally as possible. This is not to say that I don't tear. I always cry like a big baby but somehow or rather, I was able to force myself to ask the necessary questions and leave the crumbling to home. Hence, Friday's nightmare was an eye opener of sorts for me. I don't know how I feel about my rather dismay response. In a way, it has shown me a side that I thought I was holding up well. Apparently not quite anymore. It's an awakening call to myself that I must not allow myself to just disengage and crumble at crucial moments. Even my adrenaline seems to be emptied out and that's just not good!

I am truly blessed to be surrounded by a team of wonderful doctors who are on the exact same frequency as I am on that fateful day. Without speaking to me, Dr Aung knew what I would choose immediately. With barely knowing me, Dr Lee, our Radiation Oncologist took charge and just knew what I needed. Similarly, Dr Seow, the neurosurgeon contacted also understood this Mother's wish upon hearing from Dr Aung. And just like that, Char was wheeled into OT immediately to remove the compression on her spine. And now, we pray harder than before and wait. Only time will tell how much damage was done and how much did we manage to salvage.

The decision of whether to go ahead with Char's spinal surgery was not an easy one to make. Both as a doctor and as a parent. This is not a procedure that will cure her. This is just an invasive procedure to remove the one tumor that was causing paralysis to her lower body and bladder. There are still about 7 other tumors growing in her body. While at Mount E, I questioned myself "Should I?". Even while I am sitting outside the OT waiting for Char, I asked myself "Why did I?".

However, post Op, when I saw my little girl break out in a BIG SMILE when she wriggles her toes or when she could move an inch of her leg, I am more certain than ever that this would have been what Char wanted if she could sign the consent herself. Doctors would tell you there is no right and wrong in almost all the situations at this phase of our journey. Nonetheless, seeing her smile now, I know I would spend the rest of my life regretting if I hadn't gone ahead with the surgery and instead allow Char to be in permanent paralysis for the rest of her journey.

While we are nowhere near being out of the woods, and still very much fighting fire, the fact that I see a big smile on Char's face whenever she manages to move her leg one tiny bit brings such great comfort to me. I couldn't imagine otherwise. If she hadn't gone through the op, I know no matter how many days I may have with her would amount to nothing but misery. And it's not my misery that I am afraid of, but rather that of my daughter's. And it would have totally made everything that we have been fighting for in the last 2 over years meaningless.

I want to thank all the doctors who made a wise decision and hence, made my decision much more easier.

Most importantly, I want to thank my amazing little girl. She is truly the one whom has made this traumatic journey seemingly straightforward. My every decision is so tough but yet because it's Charmaine, she has soften every edge out, every single time. She is barely even 6 years old but everyone, every doctor that has come into contact with her would tell you that she is wise beyond her age. Her determination, her zest for life, her fortitude, her love for her family and friends, her strength, her courage leaves no doubt for anyone that she wants to get well and she wants to live. It is without question for me of course that my little girl wants to get well. But what touches me greatly is how much others could feel the same determination and life in my little girl. Dr Aung told me this morning that in the past week, she has seen another side to Charmaine, the side that I have always known but others may not get to see it in action. I am so glad that Dr Aung got to see this amazing strength in my little girl.

Dr Aung would also be the first one to tell you that my little girl ain't that little in her mind, her thoughts and her understanding. She is sensitive, she is aware and she is understanding of her situation. We have been inpatient for almost 2 weeks now and I have had to repeat myself continually to the Pain Team, Oncology Team, Palliative Team and Surgical Team about her progress, her symptoms, my observations and concerns... It's really NOT easy to discuss in front of my little girl! Even when she is seemingly asleep. She is listening to every word I say and no matter how many big words I use, how incomplete my sentences are, she knows and she understands. She will subtlety do things to make me feel better from what she hears... That is how sweet she is. It's not about how to maker herself better. It's about how to make mommy feel better. When I commented about her lack of appetite, in no time, I will hear her telling me she is hungry and she will take a few bits of something... Many other tiny examples but both Dr Aung and me always know she understands. We try to be careful and it's still not easy, especially with many other doctors who may not be aware. I found myself telling Dr Aung that I honestly need to learn another foreign language soon!

What is extremely courageous about my little girl is also her attitude despite her high level of comprehension. Bear in mind that she understands most of the things and situations like what an average adult does. Imagine yourself in pain, losing control of your lower body, seeing your mom in tears and probably knowing that whatever it is you are fighting, it ain't simple and easy. I imagine myself in her shoes and I truly would not have the same attitude and determination as she does. Just think of Friday's nightmare. I told her about every decision, every procedure like I would to an adult. I told her we were going to insert the urinal catheter because it was needed to make her bladder feel better. She is scared of course. She tells me too. But she doesn't say no. She doesn't put up a fight. She doesn't resist. She cries out in fear but she kept her body still. I told her we were going to Mt E for a scan. She didn't even complain. She didn't even get a chance to have a breather. It was one after another. After the scan, I told her we are going back to KKH to have an operation because we need to get her legs moving again. She understand totally what an operation entails and I see no fear in her eyes. None at all. She didn't even question me WHY. Nor did she beg for me not to do the operation. Throughout it out, she was so calm. Her only complain is her hunger and her exhaustion due to the lack of rest. To some, you might say it's because she's young and doesn't understand. However, Dr Aung and I will insist otherwise. Yes she is young but no, she understands it perfectly like an adult does. I dont know about you but this adult me would have totally freaked out the moment I wake up to paralysis on my lower body and I am certain that I might have already tried to kill myself many times immediately. Even if I was somehow rescued, I would have been a nerve wreck, full of despair and deprived of any hope. The subsequent loss of bladder function would have me begging for any doctor to euthanize me there and than.

This is WHY my dear princess, you are so special. I don't know how is it that you have such amazing strengths. I don't even know how you could do it, how you could remain so calm even when I first saw the fear on your face. Only God will know how you did it. I know I will never even have half your courage my precious. But you just are. In the face of fear, anxiety and unknown, you never waver once in your attitude and determination. For some odd reason, I don't know if you were trying to protect your mommy me, or you were trying to remain strong and calm to make things somewhat more bearable for your mom... You just do.

Thank you my princess. I appear strong to many others. Truth to be told, you are the one that makes every unbearable situation seem straightforward and even easy at times! My strength is derived from yours. My determination is channeled from the zest and life in your eyes. Just one look into those eyes of yours, and the answer is there. I know others see it in your eyes too.

~~~Medical Front~~~
Char is stable now. We got out of ICU after an overnight stay. She is doing as well as one can expect from a risky spinal surgery. She continues to improve on regaining control in her legs. She started off by wriggling her toes post op at ICU and she managed to swift her legs a little yesterday. Today, she is able to bend her knees a little and hold them for a few seconds. The doctors are happy with her progress. We are however still having constipation challenges and even though she has a urinal catherer, there still seems to be urinal retention in her bladder, making her tummy look distended. That is rather worrisome.

Since yesterday afternoon, she also seem to be more tired and dopey, less periods of wakeful times, decrease in appetite. She is on 3 narcotics, and we are weaning one of the narcotics off. Hoping that it's just cumulative sedative effects from all the narcotics and nothing more than that. She tried to sit upright once yesterday and once today. Actually she hasn't been able to sit upright since the day we were admitted on Jase Birthday.

We are also having a bit of challenges with her blood pressures since post Op. They are rather high and we are monitoring her closely. Her body temp has also been persistently low since her surgery, always hovering at 35ish and low 36ish... She also started to complain of dizziness since yesterday...

Her pain is thankfully under reasonable control. She has her occasional breakthrough pain and she is able to use a PCA pump to do a bolus whenever she needs it herself.

We are planning to start her on some radiation at Mount E tomorrow. She is on a couple of antibiotics to cover her. Her surgical wound seems to be healing ok. We have finally removed all her tubies and is only using the one on her portacath and that allows her to use both her arms to move her body.

Dr Aung and I have also started her on Celebrex and Thalidomide which will hopefully slow down the tumors growth and miraculously heal her!

~~~Prayers Needed~~~
Like I said earlier, we are out of curative options for Charmaine in Singapore and traveling is out of question for now. While I am slowly trying to educate myself in areas I wish I never had to, such as pain management, the different narcotics, the side effects, the signs, the symtomps of more progression and many other painful learnings... I still continue to pray and hope that a cure is already taking place in her body... It's not easy at all. Walking between faith and fear is a daily struggle. I continue to question my sanity on a second by second basis.

Nonetheless, for some rather odd and unexplainable reason, even to myself, I find myself feeling a tint of hope seeing Char's smiles post op. I cannot even begin to tell you how beaten and how devastated I had been for the last month, each day just takes a tiny piece of my soul away from my body. I am totally heartbroken and I live in fear of what's to come... I am a living dead.

The spinal compression has caused Charmaine to be unable to move her lower body now and yet the spinal op which wasn't even a cure has given me a new leash of hope. Hope in what I don't know. I mean I can still see her one other visible tumor growing at an disgusting rate and I tried to no avail to convince our surgeon to remove it. We still have tons of challenges to overcome, in terms of her functionality of her limbs and bladder... And this is not to mention the real challenge of the danger of her disease spreading without chemotherapy... And some of the doctors are even talking of EOL - End Of Life management with me...

I am writing like it doesn't bother me at all. And I am writing without tearing now. I don't know why. I try to remind myself not to be in denial because I have Jase depending on me. But I also am kind of surviving as though there is no real loss here, as though I am just doing what I've been doing every single day of my life in the last 2 years, living with cancer and coping. I think that Charmaine being a little more comfortable and not in constant excruciating pain seem to help a little in my sanity.

Even as I am writing right now, I don't know what tomorrow will bring to me. It's been close to 2 weeks since we are inpatient. Jase is wishing that his sister is not sick so we can be home. There are tons of challenges, many things that require my thinking and decision... But I am not exactly thinking too far ahead or too much... I am simply unable to. I am trying my very best to take one step at a time, one day at a time...

I like to ask for forgiveness for my lack of faith, lack of grace and lack of sanity... I find it extremely difficult to have faith in anything. But it doesn't mean that I don't believe in miracles. I do. Like Charmaine, I believe and know that there is magic and unexplainable forces at work. I am not sure if there is a God or a Buddha. And I found myself screaming at both of them last week, demanding to know where were they when I needed them most and where were they in the last 2 years. I almost want to scream profanities at them if I actually do know how.

In reality, we all know that miracules don't happen to everyone. And I have seen many more faithful and religious families lose their child to this cruel and despicable beast of neuroblastoma. Rationally, we also know that God doesn't heal everyone. The fact is such that. Buddha apparently can't do anything to reduce the karma incurred by us and spare our lives.

I am counting on your faith, your belief and your God or Buddha to save my little girl. I hope that my confession in my lack of faith counts for something in the realm of faith and miracles. I truly admire those who have such great faith and I will admit that I am not brave enough to take that leap of faith. My brain functions on scientific reasoning and taking that leap is almost as tough as asking me to stop treatment for Char.

I pray desperately all the times, without actually following a particular belief. Maybe I am wrong. Maybe that's why my prayers aren't heard. But that's the best I can do for now... Please, if you would be so kind to help me. Say an extra prayer or say as a many as you could.

Please pray for Charmaine to recover from her spinal op with no damage at all. Let her walk and let her bladder and bowel work perfectly and normally like an average person. Please pray that her blood pressures issues disappear and please pray that her body temp stabilize. Please pray that radiation works and reduces all her tumors. Please pray that Celebrex and Thalidomide is the cure that will eliminate all the cancer cells in her body. Please pray that she will not get any side effects from all the pain relief narcotics. Please pray that the constipation issue is resolved. Please pray that she doesn't get any side effects from all her other medications... Most importantly, please pray that Char is healed miraculously and completely with all the love so that she can be a testament to magic and faith.

Thank you.

Love,
Cyn momm

2011-05-28T17:30:00.000+08:00

Char woke up already. She's quite alert and is talking to cyn. She can feel her feet. Only uncomfortable part is the neck. Tink theres some tube which I cant see. She dun feel any pain on her back.

From Angela ( @12:25am Yday)

Blessed,
Charlene

Charmaine has completed the operation

2011-05-27T22:39:00.002+08:00

Thanks for everyone's prayers!

Though Charmaine is not out of OT yet, the surgeon has informed cynthia that the operation is a success. She has lost significant amount of blood but thanks to the op team, she is fine.

GA is now ensuring her stats is good and stable.

Thanks everyone!

Bless,
Charlene

Emergent Spinal Cord Op NOW

2011-05-27T19:59:00.002+08:00

I have been unable to get onto blogspot the entire time we are inpatient it's so frustrating!

Finally a friend just fixed it.

I will keep the long story for another day but the short story is I NEED HELP.

PLEASE FOR CHAR to have a successful operation and walk out of hospital.

It's been a devastating week for me... I'm heartbroken and I'm just miserable... I don't even know what words can I say...

We are out of curative options now and she has been in a great deal of pain. We have been inpatient for a week and is still struggling to keep her pain under control....

This morning, she woke up unable to move her lower body and unable to urinate...

Our Radiation Oncologist Dr Lee from Mt E rushed us down for an emergent MRI of her spine.... And I got another devastating news...
This honestly is insane and is just so unfair. As if me having to watch my own daughter suffer in pain daily and unable to help isn't enough misery for this mother here. As if me watching all her tumors growing right in front of my eyes every minute, every day isn't enough to suck the life out of me!!! I really feel like I am dying literally.

And as if me having to watch my own child slowly fade away from me each day isn't cruel enough for me....

I can barely breathe each day... I can barely hold myself together... I can badly even feel anything except sadness and misery and devastation....

And it isn't enough?!?!? WHY?!?!?

Dr Lee ran out of the MRI room, asking if I am okay to push char into an emergent spinal operation. I replied, "I cannot think."

What is wrong with this world? What is wrong with me? What is wrong with my family???

I am very grateful to Dr Lee. He basically was the one who started running around, making all the necessary calls... Called Dr Aung, tried to call KKH and get hold of the neurosurgeon...

And than before I know it... Dr Seow from KKH was informed and than the next thing I know is, the team at KKH were waiting for us to come back to KKH in our ambulance... so they could wheel charmaine into the OT to releases the compression on her spinal cord that is causing her to lose the functions of her legs and bladder and god knows what....

I want to say I feel like shit but I know Char is more traumatized than me. When I opened my eyes and saw the scared, shocked expression on her face... I knew something wasnt right... She is freaking out that she couldn't move her legs but yet she didn't shed a tear...

It has been one hell of a day gone terribly wrong... And you think it couldn't get any worse than watching your own child fade away... But yet again, I am wrong. It can get much worse and it did...

Please pray for me that her surgery will be completed successfully and that she will regain the use of her legs and bladder, despite all the other tumor pains....

I will try to update as we go along...

Love,
Cyn mommy

Last minute operation...

2011-05-27T19:37:00.001+08:00

Due to her Condition, the doctor has decided to do an op on our princess this evening. Please pray for her while they are preparing to wheel her in soon.

Currently, she has immense pain on her both legs and have difficulty sitting up.

Bless,
Charlene

This is fever # I lost count!

2011-05-16T10:35:00.002+08:00

Hello everyone,

I hope you all had a good time voting and celebrating Mother's Day!

As far as I am concerned, I am alien citizen on this planet called Earth and this country called Singapore. Am I an apathetic Singaporean? I don't know. Probably even worse. Is there such a thing called "Apathetic Human"? That might be a fitting term for me.

It's a strange strange feeling I have been developing through the years of fighting cancer, especially of late.

Everything around me seems to be so disconnected and unrelated to my life purpose and yet, I am still part of this whole process. (Yes, you got it - I am officially INSANE.) Haha... I grinned.

I find it ridiculously hard to function as a normal human being. Someone said I have an old soul. Is that what it is? Is that what an average 50 year human is feeling and thinking? Hmm, I don't know really. I don't even know if I can put down in words adequately how I feel inside.

Here's a scenario of how it feels to be me.

While everyone else was going on and on around me about Election Day and who's better and what's bad, (Please don't misunderstand me - I am not complaining. In fact, those discussions provided a great source of distraction for me each day and it's interesting to know what is going on around me even though I don't feel part of it.) I was anxiously praying that Char's pain would subside and she would be able to walk and play again. It's important how the General Elections will turn out because it will determine the future for my kids. Yet, what future will there be for my Char if I can't find a cure for her...

The feeling is surreal. Relatively, compared to Char's life, everything else seem so insignificant. And the insignificance is increasing with each passing day at such an alarming rate, I don't even know how to make sense out of this life anymore. This questioning of life is as tough as the physical battle of the fight against cancer itself.

A lot of times, I feel this is as much a trial for me, as it is for Char. The physical war is draining but the mental battle is as unforgiving.

In the last 4 months of 2011, we have lost so many, so many precious babies. As I am typing now, so many of our friends in America are without their precious child, many of whom we have come to care and love during our stay in NY. It's devastatingly painful and heartbreaking. They are family that you wake up each morning to, have dinner alongside, played Bingo, shoulders I cried on... Neuroblastoma is so cruel... On some weeks, we lose as many as 3 precious kids.

And just last week, we lost a teenager in KKH. One moment (Saturday), I was talking to his mom as we were inpatient for blood transfusion and he was well. Well, not as good as your normal 16 year old boy but it's as good as he can be for someone fighting cancer. He was diagnosed just last year June and he relapsed this February. His tumor responded to chemotherapy and that's wonderful. But he was fighting an infection from zero immunity. And we got admitted for fever on Friday, barely a few days from I last saw him. Saw that he wasn't inpatient, was glad and thought he went home for a well deserved break. (He had been inpatient for months). Shockingly, I heard another mom said he had passed a few days ago. NO! :-( Not another one! It's too much to bear.

Everybody will die and that's the one thing that no one escapes from. But why, why is it so hard for me to learn to live with it? How does people who work in the medical world deal with death on a daily basis and yet find enough strength and courage to plough on?

There are fewer and fewer blogs that I read these days because many of whom have become angels in the last few months. I used to read to follow on how our friends are coping, learn of the latest clinical trials, and how they overcome the side effects... The knowledge I gained are invaluable. Most importantly, I was holding on to hope as I hear of triumph stories and miraculous healing. Lately, I've been reading of how they deal with own grief. It scares me silly. To actually feel the pain and devastation from just their words, a thousand miles away.

While I cursed and cried with some moms, I also draw a tremendous amount of inspiration from some of the greatest moms around. There's a particular mom I share an affinity with. She is so good at transforming her thoughts into words, the anger, the numbness, the pain, and most of all, the cursing feels so darn good. When I read her words, I am always tempted to just cut and paste her words here. She is the one that I think will make a great partner in crime with me when I want to go around town defaming cancer! www.rockstarronan.com

Caryn Franca, on the other hand, is the one who provides the strength and inspiration I need so badly. The motivation for me to not dwell in my numbness and sorrow. Instead, she reminds me to get up and continue to fight. www.caringbridge.org/visit/francafamily. Above all, she reminds me that I have a life to live, a life that her Nick had fought so hard for...

I couldn't help but feel guilty seeing her Nick. Nick is the one who is facing the beast head on and had never once complain what life had thrown at him. He just kept picking himself up and moving forth, with every obstacle thrown at him, seizing every moment he had in his short life. How does he even do it? I know I will never have his determination and courage. Look at me now, I am not even facing this beast head on, and I already feel beaten and drained. He fought for 6 years while we have been on this journey for only one third of his, yet I am already a weathered old soul who has lost my entire direction in life. I question myself numerous times. Why am I feeling so lost? Why am I allowing despair and hopelessness into my life so easily? Why am I feeling like I can't carry on in this constant state of sadness and helplessness?

HOW does one do it? The one answer that keeps popping up is LOVE.

Love for life. Love for someone so precious you would exchange your life for his or hers. Love for your own children.

I love my children so very much. Hence, I will have to crawl if it comes to that. For them, I have to, right? I read The Rescue by Nicholas Sparks and a particular phrase struck a chord in my heart.

How do I want to teach my children to face adversities in their life?

I cried. It hurt. Never once in my life had I imagined that I would be showing these tremendous amount of weakness in front of my children. This is not the mother role I envisioned as a kid. I wanted to be the mother who is laughing, living and loving life. I don't need my children to be scholars but I need them to be able to always look on the bright side, no matter how tough life is. I want to show them that even though their father doesn't want them and me, we can still make the best of what we have. Life is about falling in love and falling out of love and it doesn't matter how hurt we are, we move on because it's the journey and not the destination that matters. I want my kids to be able to fall madly in love and still pick themselves up even when love doesn't end well. It's all part and parcel of life. I embrace the fact that we once loved and that's all it matters. And I did it, didn't I?

But what happened now?

I am always in tears, as much as I hate it. I simply can't control it. This is the mother that Jase and Char have now. What am I to do? I even lost my love for life. How than can I show my own kids to love life? Everything seems wrong. Will I be the very culprit that ruin my children's lives instead of cancer? Am I truly going to allow cancer to suck the very essence of life from me? Is it too late for me? Can I still be the mother I envisioned for my children? The mother who laughs, lives and loves life despite everything that life has thrown at her.

When I think along this way... My survival instinct kicks in. I refuse to let cancer steal my baby away. I refuse to let cancer rob the mother that truly belongs to Jase and Char. The mother that laughs, lives and loves.

But yet, wouldn't this be an unnatural person if all I could do is to be one for the sake of wanting to be one, instead of just being one.

Hmm, do I make any sense now? Probably not huh? This is a rambling entry written for myself more than anyone.

It looks like a scene out of the movies where I have an angel and a demon standing on my head, each fighting to control my mind. And that's what's going through my head now. I am having this internal war within my head, trying to right my course towards hope and light. Finding every possible reason to convince myself to look on the bright side, to carry on, whether I like it or not, whether I want it or not. And more importantly, I have to carry on in the right way, the way I have always envisioned... The way I need to show my kids...

I'm telling you, its insanely tough. Everything is.

We are now inpatient at KKH. Came in for a consultation and platelet transfusion on Friday which turned into fever the moment we stepped into the ward! And for 2 days, we were working so hard to bring her high temperature down! Ironically, last night, I found myself trying desperately to bring her temperature UP because 35.8 degrees is too low! Just how much more fun can life throw at us huh!

I wanted to scream "Bloody Hell" so badly. However, I am reminded of the fact that unlike me, a lot of my friends are without their precious babies while I am playing with Char's temperature, bringing it up and down, feeling ridiculously insane. Nevertheless, while I know I should smile and be grateful that I am fretting and worrying about Char's temperature, it still just isn't easy! How does one even find the heart to feel grateful when you are so worried that you feel your heart can stop any moment?!?! And yet, I am expected to feel that and do it.

Medical Front
Charmaine's fever has subsided thankfully and we will probably be inpatient until Wednesday. She is still having pains. Leg pains and tummy pains but thank god, the morphine is doing it's job in keeping her pain within bearable levels. Of course, she tends to be in a certain level of discomfort throughout because the pain never really goes away. However, my little fighter will grab every minute to walk and move whenever she can. I sincerely believe it's your prayers that have carried us through. Thank you.

I've wasted last week of my life unable to function and hence, as a result, no one else seem to be moving along. In medical or should I say in life as well, one thing I have learned is while you trust your doctors to do their job, one needs to always work on it yourself as well. It's like what they say - not to depend entirely on others but ourselves in all situations. I'm not advocating you to doubt your doctors but I believe that it's for everyone's interest that we work together as a team.

In short, this translates to me dragging my slumped soul up and get my butt moving! It's time to start knocking and banging on doors again!

Oh God, I am so exhausted, physically and mentally. But hey, Charmaine only has me. And I am not the one suffering in pain so who am I to say that I am exhausted? Really, Cyn STAND UP and move on!

Love,
Cyn mommy

Mother's Day 2011

2011-05-10T09:54:00.002+08:00

Mother's Day Gift

What gifts do I desire on this Mother's Day?
I sit and I ponder for awhile
The hand-made treasures and store-bought trinkets
Should surely bring a smile

For some these gifts would be just fine
On this, so special a day
But no, not for this mother
I see things another way

The things I want cannot be bought
My gifts must come from Above
Please Lord, my list is from the heart
And borne of a Mother's love

I want to watch her play
I want to watch her grow
I want to hear her say
"Watch me, see how far I can throw"

I want to hear her laughter
Delight in every smile
I want her "ever after"
Running free and wild

Her future calls and calls to me...
I don't even know where to start
I want all the "firsts" that are yet to be
First kiss, first love, first broken heart...

These things so ordinary
I scarcely dare to dream
I want them all Dear Lord
and so much more unseen

You gave me the gift of this child so precious
I thank You with all my heart
Every moment together I cherish
From her, I cannot bear to part

Please grant me my wish Dear Lord
Today, and all my Mother's Days to come
My only wish is for the treasure You already gave me
The treasure of my daughter, Char....

I really want to write but I am finding it hard even eating...

PET SCAN RESULTS:

More tumors, more tumors in her lungs, in her lower abdomen, in her thighs. Soft tissue diseases suck big time.

Almost all but one doctor is saying: "There's medically nothing to be done." OR, "How about bringing Charmaine to Disney?"

And the one left standing with me right now is Dr Aung.
I cannot even begin to tell you how devastated I am.

In Survival Mode for awhile...
For the last 3 days from Wed to Fri, I have been doing everything I possibly can, reading, calling, making appointments and just making sure that there are doors opened for Charmaine.

And I did. I found all the doors I could and they are now opened.

The quiet weekend has brought out the intense pain in my heart which I've been withholding and hiding firmly over the 3 weekdays, keeping my mind focused on what had to be done, instead of crying out in desperation.

But the quiet weekend... I couldnt withhold my emotions any longer... and now I find that I cant think... I am struggling and I feel weak and sick, but I cant stop and rest because I am the only person Char has... She is depending on me and me alone...

Over the weekend, we had a a few small talks about her thoughts on treatment and travelling...

She said very clearly not once, not twice but many times...

"I WANT TO GET WELL!"

While we both prefer to stay at home... home isnt the place with options anymore. I managed to find some treatment options available for home and Dr Aung has agreed to treat but it takes time for the drugs to be found, brought into Singapore.....

And I dont know how much time...

At the back of my mind the entire time, Char words keep ringing in my head:

"I WANT TO GET WELL"

Love,
Cyn mommy

Waiting for PET scan

2011-05-03T11:03:00.004+08:00

Its Tuesday morning... We are waiting for Char PET scan and I don't know what I'm thinking.

We started chemo last Friday. I want to tell you what cycle that is but I lost count. Am I pathetic or is it me aging exponentially?

I know I have to be positive. I know I have to cast away all my negative thoughts.

But believe me, it's insane. Its beyond insanity actually. To be able to see the tumors with your naked eyes and to be able to track their growth like a medical doctor. I didn't know that a mother has to endure anything like that... Beyond anything humane.

I dont want to know the results tmr. I don't think I can come and collect the report and not suffer a heart attack or a stroke.

What am I supposed to do? I pictured them as frogs and is willing them to just die and disappear but my will power is heavily used up... Barely enough to last me another day...

We are finishing up chemo today and hopefully, we will finally go home and sleep on our beds. We have not even touched them since we landed.

I can't write any more.

But please keep those prayers coming in. Please pray that we have good scan results.

Please pray that Char pain is controlled and she can regain her ability to walk again.

Thank you all.

Love,
Cyn

An entry wrote on 22nd April 2011

2011-04-28T18:41:00.002+08:00

In the last 3 weeks, many things have transpired. I have travelled miles again to look for anything that may help to stabilize my precious girl’s disease. Along with a supportive friend who wouldn’t allow me to travel alone, we flew and decided that it may be worth a try. It wasn’t conventional, but at least we were still trying to give her body a chance to fend off the ever mutating cells, or whatever you call it, while she is recovering from her last chemo.

We are here now. It has been 2 weeks. In this foreign country, we were thrown with more unwanted discoveries. The system here doesn’t well with me, coming from different cultures and practices. I have had to deal with many medical challenges on my own and was strangely grateful to the journey preceding this. The 2 years have taught me a lot, precious in-depth life lessons, and medical knowledge which I am not sure that I wanted to learn anyway. However, moments like these, armed with knowledge like that was invaluable.

Sometimes, I wish I could write more but I dread my own negativity. On rare painful occasions, I find myself hitting my head hard, trying to knock those negative thoughts out of my head, my brain. But they stayed stubbornly. Occasionally, I would read an enlightening book which will bring some reprise from all these. But come morning, I wake up knowing that I have to face my enemy and the war is still ongoing. My tears flow… I sob wishing all these were nothing but a nightmare. However, I know it is painfully true and real.

During times when I can no longer contain my despair and hopelessness, I turn to reading to escape.

And when I find enough strength to plow forward again, I turn to endlessly researching and reading on our options.

To cut a long story short, we have completed our 2 weeks treatment and I am packing our bags to return home. How I wish that I have better news to share. I can even rejoice with no change. But this is not what it is.
Throughout her neutropenia (which would have rendered us with no treatments at home anyway) and even with the additional alternative therapy we are giving her, her stubborn mutated cells just wouldn’t give all of us any break at all. They continued to multiply and I found more tumors in her pelvic area. The only reason I can even write it now as though they are nothing but a matter of factual development is because I have once again cried my tears dry and knows that all the tears will bring me nowhere…

I do not know if I have come to terms with my reality or not but I am thankful to have my ever-supportive doctors, Dr Aung and Dr Chui by my side. They never judge, never discourage me. Instead, they are always there to hear my sobs, my cries, my nonsensical rambling and my insistent questioning on the next option. Most importantly, they always give me hope. I cannot even begin to tell you how important and how essential their very existences and support have been for me. They are the very definition of HEALERS.

This is not to say I am calling it quits. I honestly don’t know how to ever bring myself to stop searching for a way to save my only daughter’s precious life. Maybe I will. Maybe I won’t. I do not know.
However, my mind wouldn’t rest and I keep telling myself the next thing will be my miracle. Is this how positivity is supposed to work or is this me being in denial with my reality. The way I see it, no one needs to tell me that my baby is slowly fading away from me… but until the day when I can no longer physically protect her, my only instinct now is to continually protect her. I only wish that I could wrap her around my belly, and know that nothing will touch her unless they get through my belly first.

I have researched and found some more alternative therapies that I can do myself at home.

Africa is probably the only continent left that I have not ventured into. Where else can I go? Just where in this universe does the solution to the cure for our kids lay…
All of a sudden, this planet doesn’t seem big at all. America, England, China, Japan, South Korea and Russia… none of these places seem to have anything for our kids. How can it be? Our engineers have created ipad, iphone and even 3D Television sets, so it means that we have some really extremely smart people amongst us, isn’t it? How is it reasonable that we can continually create objects of wants and yet still have no cure for our bodies, the very existence of us…

I never once imagined that I would be thrust into this world, questioning so many things in life. The bureaucracies, the red tapes, the different cultures, the different systems, the idea of profiteering, the capability of human love and even the meaning of life itself. Even my sociology classes back during my university days did nothing of that effect to me. My world and my view of the world is forever changed.

What is considered a norm?

I wonder how I would have answered my professor now that my view of the world is oddly skewed to the extent I don’t even feel human anymore. Is that what growing up does to you?

I feel like an alien living in a planet called Earth. I am desperately trying to save a live I am more than willing to die for at any time. And yet, even my death will not cure her.
Strangely, everyone continues to move on. Everything continues to evolve. And the earth continues to rotate.

I am the only one left standing, immobile, incapacitated and unable to fit in. Do you ever feel the way I do now?

‘Life goes on’

Do you have any idea how repulsive that idea sounds to me right now?
I want to say that I hate it. Yes, I do. How can life still go on when it is obviously wrong? How can a mother outlive her kids? I don’t want life to go on. I don’t want time to heal the wound and I don’t want the pain to become more manageable. I want time to come to a complete stand still. And if its meant for me to feel the pain of loss of someone so dear, so precious, than why let the pain heal with time? Might as well let the pain grow and grow. Seriously, I am out of my mind.
I take it that it is time for me to end this before I drive everyone insane along with my imbalanced hormones and uncontrollable emotions.

This is actually an attempt at me trying to be neutral. Notice that I am not trying to be positive because frankly, I am incapable of anything to that extent at this very moment. All I want to do is cry my heart out, cry till my voice is hoarse and cry until the heaven is touched.

Quite obviously, I have failed miserably. I am not only unable to sound neutral but instead, I am so sore. Angry at what life has thrown at my innocent baby. Angry at myself for being useless and unable to save my baby’s life.

Hence, I have to apologise. I am sorry that I sound like a lunatic right now because this is exactly how I feel right now. I am sorry that I ruin your day with my pessimistic emotions because I really am finding it so hard to stay upbeat about life here.

Please forgive me.

And PLEASE PRAY. PLEASE PRAY FOR A MIRACLE FOR CHARMAINE. My innocent baby.
And please remember all the other innocent children fighting for their lives when they should be fighting for attention and toys.
Since when did life become this difficult…

Love,
Cyn mommy

PS: We are now inpatient at KKH for a nagging fever...

Why not continue 3F8

2011-04-24T13:06:00.003+08:00

A blogger commented earlier, why we did not continue 3F8.

Based on their requirement, Charmaine needs to be in a stable condition. Unfortunately, it was not on our side.

Love, Charlene

Updates on Charmaine

2011-04-18T21:59:00.003+08:00

Sorry for this lack of updates as things have been turning on the wrong direction for them.

They are still fighting, and please keep praying.

April 17, 10:37pm
Cynthia: I am suddenly out of steam :-( the 2 new lumps in her abdominal are freaking me out totally. They are HUGE. I was okay whole day since yday, but now, I cant stop crying... i dont think I can handle any of this.. I really wish I am the one suffering..

This came in last night, and please keep them safe.

Thanks everyone for their concerns.

Love, Charlene

Chemo #19 and inpatient with fever

2011-03-28T06:54:00.002+08:00

Hi everyone,

Last week, we started Chemo #19 which is a new protocol but basically similar drugs. We switched Avastin into Vincristine and converted Irinotecan into Oral which was supposed to allow us to do it at home but alas, we had to have our fever so back inpatient since Thursday night. Extremely high fevers above 39.5 degrees. We finally finished our chemo yesterday but our fever spiked again yesterday morning so we did another blood culture which may mean another 48hrs stay...

Jase started his first day at LAA on Saturday and came straight to hospital for the weekend. We had a wonderful time racing on our self improvised car track on Sat but Sunday, Char was feeling more crappy and hence Jase just spent his time watching TV programs besides Char.

We are due to start another 5 days of chemo on Wednesday. Please pray that it will be uneventful and that we can do it at home with no surprises.

Thank you all.

Love,
Cyn mommy

Staying on course

2011-03-14T17:17:00.003+08:00

I'm thinking and wondering how to begin this post...

As I'm typing this right now, both Jase and Char are happily cycling around me at our void deck. It really is so simple to be happy in life. A walk in the park used to sound like a really dry and boring idea to me. Nothing to excite me, nothing to thrill me, nothing fanciful and just nothing close to interesting. However, to this little precious ones, a 'boring' park brings them such tremendous amount of joy it is infectious. And I learn. All they want is a place to run, cycle abit and they are happy! I am learning from them everyday to see the world through their eyes and I rediscover what I have been missing all along. I genuinely hope that as both my kiddos grow up daily, the world will not change or influence the way they seek happiness.

So here we are, despite the madness and uncertainty surrounding us, we continue to have fun and live life to the max. I read a comment left by one of our readers a few days back, having to cut down on returning to read our updates because it just got too depressing. I sincerely apologize. I know you will probably come back to say that I don't need to but I feel like I want to. :-)

To a large extent, I rely heavily on being negative on this site. It helps me to function. It allows me to get some of my desperation, my fears, my anger out of my system. I don't openly discuss any of Charmaine's progress with my parents because it does nothing but worries them. At their age, I figured they could do with less of my burden. All my friends around me have their own fair share of challenges and quite frankly, most of whatever I have to say may not make much of a sense to most people unless you are living in my world. Most of what I want to discuss about may not even make much sense to people actually in the medical world. As such, this has become my official crying ground. And the truth is I have been crying too much in the last few months. I started off the year promising myself that I will continue to move forth and fight harder than I've ever fought. It has not only gotten extremely hard and we are running out of treatment options. Despite everything we have done and tried, her cancer is still not stable and is still spreading.

Obviously, most of the times I am just a total nervous wreck. And when I get the results that I totally dread, I would lose control of my entire body. I would be in this 'calm before the storm' stage at the hospital, seemingly OK and able to talk, find our way home. And than the storm comes. I would for no reason cry and cry buckets till I puke and puke. And than I would get a vicious headache. And than I would have to pop panadols, force myself to sleep it off. The next day, I will wake up and continue to try and stay on our course. It's a miracle even to myself. I am thankful to my body for being able to re-boot itself time and again.

Anyhow, I wanted to let you know that while I am crying out desperately for a miracle, we do still try to function as normally as possible. And as soon as I pick myself up, I know its all about having fun. Hence, as and when Charmaine feels well enough, along with some of my most precious friends, we have activities lined up for Charmaine and Jase. Be it a simple cycling trip around the neighbourhood, a short trip to the beach or an impromptu last minute decision to the Night Safari.

We played, laughed and live. Both Jase and Charmaine had so much fun over the last few days at the beach, at the Safari and just cycling around. It was very touching for as a mother to watch. To see their smiles, to hear their laughters and to feel their happiness is simple priceless!

Needless to say, some days are easier while some days are harder. On our easy days, we try to make the best out of them and pack them with fun and laughters, cherishing every moment we have with each other. On days when the going gets tough, we cope and deal with the situation, and quietly pray for relief.

I am happy and deeply grateful for our moments together but each day, the fear of losing my little girl is always at the back of my mind. I don't have the courage to stop treatment and be at peace with whatever comes. I need to keep searching for the next option, the next thing to try and that's how I cope and function. Alot of times, I don't know if I'm right. Its strange because I am not a person who keeps trying to change something not within my control. I am happy go lucky in all things but this.

Charmaine is still so full of life and excited about all the big dreams she can fulfil when she grows up. While I am painfully aware of our situation, that this cancer is slowly taking over my baby's body, I will continue to do whatever I can, pray as hard as I could, hold on to whatever little hope I can find, keep the faith and look for my miracle.

Scans Updates~~~
We completed our MIBG scan and MRI of her both legs last Tuesday. Her MIBG scan is once again showing that she is almost 'clean'. OH HOW I HATE THE MIBG SCAN IN SINGAPORE! As for her MRI of legs, I am not too certain. Dr Aung is waiting for another Radiologist to read her scans. But her preliminary reports by another radiologist is basically saying that some parts are stable, some parts are not and he thought he saw another bloody lymph node growth!?!?! That is THE KILLER for me that. The result which gave me my 24hrs of complete breakdown.

That was last week.

Basically her LDH (a blood test, a tumor marker) that New York relies heavily on tracking the NB growth has been accelerating over the last 3 months and now it has gotten to a stage where I find myself breathless and possibly dying from heart attack just hearing the numbers. A normal person's level is anything below 240. My little precious girl's LDH was at 734 two weeks ago. In NYC, anything above 300 would have set off some major alarms but its not an common tumor marker used in Singapore. Our many months stay in NYC has resulted in me being influenced with their ways of treatment to a certain extent. So while Dr Aung is not overly concerned with her numbers, I am closing to paranoia. We discussed closely and because of her recent bouts of nausea and vomiting, dizzy spells, we decided that we should order a MRI of her brain to check the situation better.

And the MRI was squeezed in this morning. We spent the entire morning from 8am till 2pm at KKH, for an Ultrasound scan on her thigh to check that suspicious lymph node and MRI of her brain. Dr Aung is currently out of town so I wont hear from her until she is back.

Its been 2 weeks since we last checked her blood counts hence Dr Aung decided that we should do a 'finger prick' today. It was agreed that we wouldnt see any doctor unless I gotten alarming results from her finger prick. Guess what? It definitely ALARMED me. I wasnt expecting her to have no immunity after all its been almost 3 weeks since we last did her chemo. BUT SHE IS INDEED NEUTROPENIC. :-( And her platelets are at a shocking low too. I am definitely feeling sick to my stomach again and is trying my very best to hold it together.

The reason for my shock is unpleasant. Charmaine hasnt had her bone marrow biopsies done since September last year. I am watching it closely because in NY, they do bone marrow biopsies regularly, within every 3months. With Charmaine's LDH being so extremely high and last week's scans not picking up conclusively, I am freaking out and very very worried. I told Dr Aung about my fears and she said that she will only start to worry if her counts are dropping for no reasonable reasons. AND WALA. WE HAVE LOW COUNTS TODAY!!! ARGH.

I know that our last trial has most probably not worked on her and its devastating to me. We are working on our next option. One of which requires going through the Ethics Board for approval as its a non approved drug unavailable in Singapore. It will take weeks before we even have an answer. Please pray with me for another door to be opened to us. Please pray that we will be able to find another treatment for Charmaine which will work very well in reducing her disease to a minimal and keeping her stable for as long as possible. Time is obviously never on our side. Hence, please also pray that everything will eventually work out well.

I need to have a clear head to work out our options and decide on how best to move forth. With each passing day, I feel that my feet is heavier and it gets increasingly harder to even take a small step forward. However, time wont come to stand still even if I try, and the only way is forward.

With your prayers, blessings, love and tears, I will continue to push through and take whatever baby steps I can.

THANK YOU for loving us, for crying with us and for praying with us.

Love,
Cyn mommy

On the brink of insanity. Emotional Wreck.

2011-03-06T23:24:00.002+08:00

Scan in less than 9hrs from now...

We just got home after spending 3 hours, gatecrashing and surprising Charlene at her wedding. I am glad I dragged myself there. I had been hesitant, fearing that Charmaine will be mindful that she has her plug on her hand. However, she was so excited when I mentioned to her about Charlene's wedding this evening. Seeing that the diarrhea got better, I decided that she will be able to decide if she wants to go out and celebrate it with her Char jie jie. Despite her fatigue, she wouldn't miss it for the world. :-)

I am so glad I dragged myself there. Frankly, almost ashamed of my own insanity and emotional wreck. But seeing how Char, despite her lethargy, still pushed on. I knew I should push on too. We went and both the kids had so much fun. Thankfully, I will have one less regret. I've always been kind of disappointed that I had missed Godma Jolene's wedding even though I know it was for the good of Charmaine.

Thank you to Charlene for accommodating us even on her big day! I am truly happy to witness this special day of a very special friend.
And of course, Godma Jolene for helping me with the kids. Otherwise, I might have tripped or embarrassed myself, given the fact that I am totally brain dead.

Anyhow, its back to reality again. I am so scared right now. I wish that tomorrow never comes. Can't believe that I would say that.

For the first time in 2 years, I am scare to face everything on my own...

What if I surprise even myself and faint on the spot in the room? What if I become hysterical and forget the way home?
I am so so scared. The fear is so real I can already feel my intestines knotting right now...

On the one hand, I keep forcing myself to calm down, breath and focus on next steps no matter what the outcome is but saying is easier than doing. My brain is not in control. My heart and my soul is. I am not a rational human being.

I am a MOTHER.

My job is to protect my babies and keep them safe from harm. Shelter them, love them and comfort them.

But I feel so helpless. :-( My despair, my fears and my anxiety have taken such a huge toll on my mind the past week. And it just keeps getting worse...

Pray for me, pray with me...

A part of me really wish that tomorrow never comes... Maybe End of the World isn't such a bad idea after all...

I am sorry this is so depressing. I can't help it...

Love,
Cyn mommy

Discharge!

2011-02-28T21:29:00.002+08:00

We were discharged on Sunday afternoon after waiting forever for our medications and fentanyl patches!

Anyhow, Char is doing generally ok, except for the nausea, vomiting, diarrehea and fatigue.

I have been seriously squeezing every cells in my brain trying to rationalize this ---

"I AM POURING ALL THESE POISON INTO MY BABY'S BODY, KILLING ALL HER HEALTHY CELLS AND YET THE CANCER CELLS SURVIVE?!?! HOW IS IT EVEN RATIONALLY POSSIBLE?!?!?!?!"

I wish that someone can just turn themself into a teeny tiny person and just travel into her body to switch off a button and just kill all the cancer cells!!!

As you can see, I am highly strung!

I feel like an atomic bomb waiting to explode any minute.

I want to cry my heart out and make all these go away...

Pls just let this nightmare go away... I want to wake up and hear the wonderful news that my baby girl is NED again!!!

Scanxiety. Stress. Fear. Anger. Frustrations. Desperation.

I need to dig much deeper into my soul this week and it's still not helping!!!

I can't find my happiness, my smiles, my laughters, my joy, my contentment and I can feel my vomiting reflux is coming back again.

Well, at least I tell myself now I am in it together with Char, puking our way to some fun, maybe?!?!?

Dear Buddha, hear my pleads and my cries, please have mercy on my dearest Charmaine. PLEASE heal Charmaine so that she can return to her normal life of growing up happily like everyone else. I believe in you and I believe in miracles.

Love,
cyn mommy

We are having our afternoon tea party at KKH inpatient!

2011-02-26T13:15:00.002+08:00

Jase is here, Char and me are extremely happy to have him here with us! This is how Jase will remember his growing up childhood years; all the bus trips, MRT trips he takes with his Gong Gong to KKH to deliver breakfast and dinner for his sister. Albeit somewhat not an ideal or typical way to spend weekends but we do have our UNO games, siblings rivalry and movies time together! And that's what matters at the end of the day! So, here we are with tons of food, fruits and drinks to cater to Char's occasional bouts of hunger pang and pray that it's something she finds appetizing.

On the medical front, char spiked a fever on Thursday. Nothing surprising really. But that explains why we are inpatient! Waiting for blood culture results and hopefully no infections so we can get out of the hospital soon! Not that we don't like it but nowhere beats being at home!

As for other aspects of our medical situation, let's just say I am totally freaked out. We have scans the following week and the scanxiety is driving me nuts. I am literally on a nervous breakdown and YES I am trying so hard to put on my fake brave front for my little ones. Her latest series of blood tests have revealed that her tumor markers are once again elevated. I am just heart broken, devastated and at a total loss. :-( we are out of options in Singapore and I am so scared, so frustrated with our no options in Singapore shld the news be one I don't wish to hear. I want to keep everyone at home for treatment but Singapore has almost nothing. :-( I keep telling myself not to think about it now and just live, laugh and treasure every moment but the painful truth is my fear and anxiety is eating away at my faith and courage...

I need your help. Please, please pray harder, louder and longer for us. I am holding on desperately to hope and praying that some miracle is already happening right now. Please heal my child. My innocent, helpless child... And every child who simply doesn't deserve any of these suffering, pain and tears. They ALL deserve to be by the side of their mothers!!!

Thank you so much for being by our sides... I truly appreciate it and I don't know how to ever repay all the love that have been showered upon us...

Love,
Cyn mommy

Cycle #18 and still holding on to HOPE

2011-02-22T00:34:00.002+08:00

We need a miracle and we need it now. So badly. Please keep those prayers coming in for us. I read somewhere that collective thoughts and energy is powerful and I have no doubts that all your prayers and thoughts have kept my little girl in the good fight continuously until now... So please keep it coming. Positive vibes!

A little update about us...
We started Cycle #2 of our new protocol last Friday with 90 min infusion Avastin and admitted Monday morning for 5 days of chemo. This is our cycle #18 and we are still fighting. If you recall, we had a rough time with our first cycle, had to deal with lots of pain, loss of sleep, nausea, vomitting and loss of appetite. As such, I am definitely wary and anxious this round. I'm praying, keeping my fingers crossed for Char to have more comfort but for the drug to work as effectively as possible in bringing her disease under control.

We had a good week last week. I am so grateful, thankful and blessed. Both Jase and Char got to cycle over the weekend and we had lots of fun! I don't know what lies in the future ahead. All I know is that it is going to be tough. The odds for a cure for my little girl is sadly little and low but I continue to hold on to whatever hope there is I can grab onto. Char, my dearest is blissfully unaware of the uphill mountain we are climbing and continues to be the ever sweet, feisty princess she has always been. She has dreams of starting Pri 1 next year, making friends and can't wait to learn, sing and dance and conquer the world! Her smiles, her never give up attitude and her abilitiy to live each day to the fullest is what that have enabled me to remain strong, and inspires me to live out each day happily, add one more day to my treasure chest and leave tomorrow's worries to tomorrow.

Our scans are scheduled for the second week of March and based on the results, I will have some huge decisions to make. My birthday wish for this year is to finally hear some positive news from the scans!!! Dear Buddha, please continue to watch over my Char and bless her with a miraculous recovery from this disease.

Finally, I like to apologise for not updating as often. I guess writing no longer has that therapuetic effect on me and instead, it just reminds me of my tears. As the saying goes, no news is good news with us. Our good news is simple, just a day waking up to sunshine, minimal pain and discomfort, and going about the daily routine of eat, sleep and be boring! Each day that we spend being together, doing nothing, complaining and whining is each additional day of gratitude and great bliss for me! I wake up everyday repaying thanks for yesterday and praying for another yesterday today.

Last but not least, please keep all those much needed prayers coming in. They must be working for us to be enjoying so many days of joy and bliss at home. But we need more for our miracle to work! For our chemo drugs and Avastin to work effectively on killing the cancer cells, keeping them under control and for us to be able to remain on this option for as long as possible!!! For Char to have no pain and no discomfort so that she can enjoy her days like a normal 5 year old!

From the bottom of my heart, I say a thousand word of thanks. I appreciate all the comments, all our silent supporters and all your love for my family, especially for my feisty little princess.

Love,
cyn mommy

A blissful start to the year of Rabbit

2011-02-08T14:41:00.003+08:00

Hello everyone,

Its already the year of the Rabbit! 2 years to us battling and I am very grateful to still be fighting this war, which I termed it dearly as my very own WWIII. Although its as physical as it gets, more often than not, I feel the physiological aspects are my biggest enemy.

My fears, anxiety, desperation, depression, disappointments and scanxiety drive me nuts and make me lose my faith, my hope, my drive and my belief. At the end of the day, I am just left with nothing. Or rather, I feel that way - that I have exhausted all my means, used up every ounce of my energy and expended all my determination... I am drained and empty.

But the very sight of Charmaine is the biggest reminder to myself that I still have everything. She's the only thing, other than Jase that matters in this war and she is everything to me.

Nevertheless, I am only human. I will always wonder why arent we one of the lucky ones? Why isnt my baby one of the lucky ones responding well to treatment? Whenever I hear of friends travelling for vacation, I would be envious of their happiness. It is exceptionally hard when I see other families with innocent and happy kids doing mundane and simple things, like running around at the playground or just going out for a simple dinner. I miss those days terribly. I miss all these simple pleasures of life. I miss worrying over normal things such as having enough money to pay for bills or if the kids are doing well in school. I miss being normal. I find myself occasionally looking back towards the past and re-living those moments over in my mind, just to remember how it once felt. The memory is getting more vague as time goes by and I just wish I could capture those emotions the way we freeze a moment in time through pictures. All the mental torment that my mind has to go through on a daily basis isnt helping much with keeping memories because the way I cope is to block out and forget. While I forget the harsh moments, I also have to forget the happy ones too. Another NB mommy in US coined the term "Collateral Damage".

People often ask me: "How are you coping?" I honestly dont know how to answer. Quite frankly, I myself dont know how am I coping? Maybe I would need an expert to sit down and observe me for a day and put me in a certain 'stage' or a certain 'phase' of whatever medical term there is.

We are living each day like an average person, as 'normal' as can be. We sleep, eat and wake up and repeat the cycle with minor surprises everyday. The side effects of the treatment are taking a heavy toll on Charmaine and our 'average' day isnt quite your average day. Generally, we wake up and because of the pain in Charmaine's leg, she cant move around like a normal 6 year old kid. Her leisure is laying on bed, watching her Winx Club DVDs, counting down to the time Jase comes back from school and continue watching more episodes with Jase. In between those moments, there would be the bickering over being too squeezy, or Jase disturbing her, or Jase hurting her when he touched her... Complains that usually have me staring at them, with the "No fighting" warning.

And all the while, Charmaine is coping with the constant pain on her right knee. This chemo is known to cause diarrhea and that is the other pain that Char is having to deal with on a daily basis. Her appetite has also been very poor in the past 2 weeks. She has already lost almost 2kgs since we returned in December. She feels the hunger pangs but the vomiting and nausea is making it very hard for her to stomach the food. And that adds on to her frustration and sadness. She asked me: "Why is it when I see food, I am not hungry and when I dont see food, I get hungry? But when I am hungry, I cant eat?"

She is always tired and occasionally feeling dizzy. Weak from the lack of food intake and weak from pain. The oral morphine is probably also doping her to a certain extent but she finds it difficult to sleep with the pain in the leg and the pain in her tummy.

So THAT is Charmaine's average day at home.

I live my life daily, always on the alert for the next increase in pain, the next dose of medication, the next run for puke bags, or just laying on bed besides Char. She feels very uncomfortable with me out of her sight and is constantly calling out to me even when I am showering...

I read a quote about 2 week's ago that has eased the fear and pain in my heart a little and taught me to remember to see things from a different perspective in order to carry on...

"Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish."
-Robert Brault

I continue to be grateful each morning I wake up with Charmaine by my side. And I cannot be happier to be able to spend this Reunion Dinner at home with my family by my side. Although Charmaine was too sick to join us for the whole dinner, she managed to pull herself through the Lo Hei with us and went back to bed to rest.

We also had to admit to KKH on Thursday night for an 90mins infusion on Friday morning. However, all in all, it was a wonderful Chinese New Year for me. I am truly blessed with many tiny blessings each day.

I hope everyone had a blissful CNY like us, counting the tiny blessings each day, despite the challenges we are thrown with daily.

Have a BLESSED RABBIT YEAR 2011.

Love,
Cyn mommy

Charmaine says hi to all =)

2011-02-06T22:27:00.002+08:00

Love, Charlene

Happy Lunar New Year to All

2011-02-05T18:49:00.003+08:00

Happy rabbit new year to all our friends and readers! I hope you've enjoyed yourselves these few days gorging on CNY goodies, catching up with extended families and friends and receiving/ giving lots of ang pows.

Charmaine is enjoying CNY this year far from the hospital. Yay! She's so happy she called me and possibly the other of her adult friends to wish us:

恭喜发财 (gong xi fa cai)
红包拿来 (hong bao na lai)

Lots of love
Jolene

Still inpatient

2011-01-29T15:17:00.002+08:00

I'm deeply sorry for the lack of updates but I have been finding it harder to write...

This is will be short update...

We completed chemo yesterday on Friday. She spiked a fever on Wednesday and the 48 hours culture (blood test for infections) result came back negative yesterday which was a relief. However she spiked an other fever yesterday so we had to do another blood culture and we are stuck inpatient again...

The palliative team came in on Wednesday to help us manage her increasing leg pain... And now her pain is better managed. She's on oral morphine as and when she needs it and also on a fentanyl patch which will release morphine onto the skin throughout 72 hrs, which will save Char the discomfort of having to swallow huge amount of medication almost every 2 hours on a perpetually empty stomach because of her loss of appetite.

In her own words, her pain is never at zero, at best a one which she can tolerate... With all the antiobiotics, anti vomit medications, pain relief medications, she is feeling extreme fatigue and doped most of the times but she continues to push herself to stay awake and play with Jase whenever he is here...

I'm hoping that we will be discharged in a few days so that we will get to spend our CNY eve at home. At this time when my faith is wavering and almost non existent, I am ever more dependent on your faith and prayers to get through. Please pray for a miraculous healing for Char and for her pain to disappear soon...

Love,
cyn mommy

Excruciating pain...

2011-01-25T19:53:00.003+08:00

Charmaine's right leg is in excruciating pain...

We cried and cried and amidst her pain and cries, she kept touching my face, telling me: "Mommy, I'm so sorry to make you cry... I'm so sorry I can't control my pain..." when the pain gets worse, she screams: "Mommy, I love you so much!"

She keeps repeating those lines and keeps screaming "I love you so much Mommy!!!"

My heart keeps bleeding... My tears keep dropping... Not because of my helplessness but because of her love for me... I can't save her... How can I be deserving of such depth of love... She doesn't forget to show me her love even when she is suffering so much and in such degree of pain...

Please please please pray for my little girl to be healed on earth... The toughest part of this entire journey is not wheeling her into a major operation, neither is it the high dose chemo, nor the horrific side effects... IT IS WATCHING MY BELOVED CHILD IN EXCRUCIATING PAIN and I am rendered helpless... The degree of pain all these kids with cancer have to suffer through is inhumane and heart wrenching. And they have done nothing to deserve any of these... Nothing at all...

Please pray with me for a miracle...

Tearfully,
cyn mommy

Some happy times, some rough days...

2011-01-24T10:04:00.002+08:00

Has it been a week already? Everything seems to be flying past me and yet, I feel like nothing much has changed; like we are still at a stagnant phase in our lives, doing the same things over and over, praying, wishing and hoping for a positive change...

We were basically home to recuperate from Char's surgery last Monday. It wasn't easy to tell my feisty little girl to not move around much even when she is in pain. Her mind is very capable of shutting away her pain when she is at play. Her mind power far surpasses mine and she keeps pushing herself to just do one more thing, despite the pain and fatigue. Just like her surprise 20.3 million stem cells collection in one day, she continues to draw her strength from her secret treasure chest somewhere deep down in her.

Of course, we had a good scare when she went down for a walk barely 2 days post surgery while I was out to fetch Jase from school. And the night ended with the area surrounding her wound becoming red and her temp climbing up to 37.8! I was freaked out! Took a picture, emailed Dr Chui and called him. Thank God the redness subsided after a dose of antibiotics and strict instructions from Dr Chui not to move too much.

We went to Clinic for a discussion with Dr Aung on Thursday and were pleasantly suprised to find that her get ANC (immunity) has risen to 0.9! Not the best because the minimum is 1 nevertheless, her little body has gone through so much chemo, it takes a much much longer time to recover and we are already a month past our last chemo in Dec... Which didn't work to control her cancer cells... As such, each additional day that we take to wait for her counts to recover is an additional day of risk, knowing her cancer is spreading... Double whammy as usual.

Before I went down to meet Dr Aung, I had already sort of decided on the direction of Char treatments, knowing that I do not want to put her through another high dose chemo. As such, we immediately started her new treatment the next day, last Friday.

She is on a new protocol which is under a clinical trial phase in New York, and we were really blessed to have the drug available in Singapore for adult oncology patients. The drug is called Avastin and it is not exactly a toxic drug like chemo but of course, it is not without side effects as well.

In fact, I was dismayed and shocked to find that her lips turned pale a couple hours after the 90mins infusion... I had spoken to 2 moms in NY whose child was on the same protocol and was warned that one of the side effects was severe nose bled for hours... Hmm, definitely wasn't prepared for the extreme fatigue, the pale lips, the nausea, the vomiting to set in... So while I'm comforted that we have a plan... I'm heartbroken to see her suffer... My only push factor is to tell myself to pray that everything is going to be worth it...

She continues to be more unwell over the weekend, but was adament abt going out with Angela jie jie and Rich Kor Kor to fly kite. In fact, she said she was not in pain, insisted to walk and even stood up to fly her own kite... Despite her efforts, I could tell that she was straining herself, pushing herself constantly because it's so easy to tell that she is just plain exhausted with a pale face...

Her pain also surfaced on Saturday night... This time, it's her right leg again. Both nights, she was in so much discomfort and pain that she couldn't sleep... Even after the pain relief meds... Last night was even more rough... Only this morning did she manage to fall asleep after different pain relief meds...

This morning, we rushed to Mt E to have Dr Chui check her surgical wound and is now at KKH, waiting to start our 5 days chemo - Irinotecan and Temodar. 2nd part of this protocol. Our last part will be next Friday, the second infusion of Avastin. Hoping that Heaven will have mercy on us and allow my dear princess to be home to enjoy CNY the way a normal child enjoys it - no pain, no inpatient stay...

I was actually very concerned over her extreme fatigue and nausea over the weekend and wasn't sure if she still has low immunity or not... But her counts we took an hour ago is showing incredulous results - ANC of 3!!! HGB 11 and platelets 189! To be honest, the numbers do not represent her physical behaviour. I'm almost skeptical and wonder if they got a wrong sample from a different patient!!! How else cane we explain her lethargic and all that nausea with such great immunity? Side effects of Avastin?!?! Never heard from other parents about this... Are we one of the rare ones?!?!

Nevertheless, Dr Aung is confident enough to start chemo and I trust her! We really can't afford any delays anymore...

So please pray with me that this new protocol will be able to bring Charmaine into our much needed stability. And that we will be able to complete our chemo regimen smoothly with no hiccups. Please also pray for her pain to subside totally so she
can walk on her own again and be the happy girl she is.

Thank you everyone.

Love,
cyn mommy

The Kiddos saying Hi

2011-01-23T23:07:00.000+08:00

Love, Char

Char is out of surgery

2011-01-18T08:40:00.001+08:00

The surgery went smoothly and char has already started walking on her own. She still complains of pain in her wound but is insisting to 'control' her pain rather than relying on pain relief meds.

Thank you all for the prayers and thoughts.
Keeping this short. Will update once I get out of limbo land...

Love,
cyn mommy

Tumour Removal

2011-01-17T15:22:00.001+08:00

Charmaine just had a last minute operation to remove her tumour.

Thanks for everyone prayers and Dr Chui's expertise. She is safe out of operation theatre.

Love, Char

A last minute decision... Surgery right now...

2011-01-17T14:52:00.002+08:00

I met our Surgeon, Dr Chui this morning for a discussion on the probability of surgery.

And everything just kind of moved really fast. We did a blood test to check her platelets and it was 56. Not exactly high but we barely made the cut for surgery - above 50.

Her ANC (immunity) fell by half instead of going up! So from a minimal of 1, her ANC dropped back to barely 0.6!!! It sucks big time for me because that would mean her healing process with be lengthen and the risk of infection is much higher...

Anyhow, everything was set up within an hour... And she was wheeled into the Operating Theatre at 2pm...

I haven had much time to process... Functioning on auto mode now... But I'm just glad that we are finally taking her tumor out...

Please pray for a fast and smooth recovery for my Char...

The battle continues...

Love,
cyn mommy

A letter addressed to Miracle!

2011-01-16T23:16:00.003+08:00

Today, the tumor grew again... I don't even have to touch to feel it now. It's visible by sight...

Dear God, if the lesson I have to learn here is to 'accept and be at peace', does it mean that once I accept cancer in my life, you will let my baby live? Isn't that what I'm already doing now? I am really more than happy to give up everything and to live with anxiety and fear with NB for every single day of my life. Just let my baby live please.

I won't even complain about anything... I won't hate it, I won't kill it either... Can't we co exist in a peaceful manner?

Both Char's legs are already curved and she can never walk like a normal child, but it's okay. I am still feeling blessed that she has both her legs and she can still move around on her own. Even if it's a limp, I am still contented and deeply grateful.

Her spine is also curved. Needless to say, scolioces is also part of her life. I promise I won't complain and I will try not to cry... I confess that I've been burying myself with grief over her difficult future but I realise that I am being the world's biggest fool.

No matter how challenging the road ahead will be, I will be more than happy to walk it with my girl every single step of the way. We will find joy in everything and we will treasure every single moment. If it's not too much to ask for, whatever plans you may have for Charmaine, can I borrow her for a lifetime? Just one lifetime for her to grow up, to share her miracle with the world and to return the favour to the world who has helped us tremendously.

Please guide me towards the right path so that I can bring Charmaine back to stability. All that I ask for is stability. The NB cells are more than welcome to remain in her body as long as they remember to let her live. Medication for life, a much more different path compared to others are everything that I am willing to live with. We don't even need a normal life like others. It don't matter to me if I have to work doubly hard, or even indefinitely harder. I am happy to do just that! Just as long as you allow Charmaine to live.

Please give me a chance to save my own child. I am literally at wits end now. I prayed. I cried. I begged. Nothing seems to work. Please help me.

Dear God, Buddha and all the mighty ones, heal my char. Please.

Love,
cyn

My best friend is called Denial

2011-01-16T10:50:00.004+08:00

I don't know how to begin this entry...

I have not been able to talk much... To anyone or anything...

I don't want to talk about cancer... I don't know her prognosis... We never discuss about that with our doctor...

Char is enjoying her days at home since our discharge last Wednesday night. She is always hungry and we are always figuring out what to eat next.

I'm writing this down so that I won't forget it...
On the night where Char was having temperature spikes of over 41 degrees, in between her dizziness and trembles, she suddenly spouted these words:

"Mama, I think Valtor pulled a curse on me. That's why I can't see properly."

Valtor is the Bad Guy in Winx Club Season 4 and Winx Club has been her latest indulgence. Char actually said those words while crying and was in so much discomfort. Of course when I first heard those words, I was in shocked for a few mintues and when I regained my thoughts, I was back to worrying about her so ridiculously high fever and wondering if she was having some hallucination side effects.

However, the next day, we both had a good laugh about her sudden outburst of witchcraft assumptions! It was her first time ever, and looking back now, I thought that was really cute!

So, back to my reality. Like I said, my best friend lately is called Denial. When my best friend is hanging around me, I totally disregard the real battle I am fighting and I can even sing along to the CNY tunes. And I am even able to feel excited about my favourite festive celebration. In the year of 2010, we spent practically every major festival in the hospital. From Chinese New Year to Christmas to New Year's countdown. Hence, I am more desperate in wanting to make it possible for us to at least spend CNY at home for a couple of days this year but our chances look bleak once again... Maybe that's why I am trying to be not too excited abt CNY because I will be doubly disappointed if we have to spend it inpatient again.

When my best friend decides to ignore me, I an often left in a daze, crying and some days, even hating myself. My brain wouldn't stop those bad thoughts from haunting me daily and just some days, I really wish to be able to rip my brain out of my head just so that I can stop thinking once and for all.

Yesterday, I spent an hour talking to a pal who advised me to be at peace. Many a times, I just want to scream and yell back, "What do you know about?!?! My refusal to be at peace is what that has kept me going until today and telling me to be at peace is like telling me to let go and give up. I can't see it any other way. I know everyone of you mean well and truly care. I'm the one who's being ungrateful and spoilt. Did I also mention that I have enough of people asking me "how are you?". Isn't that something obvious enough? How am I? How do you expect me to reply? I have absolutely no wish to vent my frustrations and my anger at my friends but I see myself having lesser and lesser control over my emotions... I'm so afraid that one day, I may just unleash all my fears and anger on a friend who doesn't deserve any of these.. So please forgive me when that day comes... I am trying all my means to hold up and I feel like I may explode soon.

But in the meantime, I wish to deal with all these on my own. Hear me out when I cry aloud but otherwise, please allow me to live in my own little world...

Presently, I'm trying to wreak my brain to figure out if there's anything I can do to even slow this beast down a little... In between that, I'm trying to see how I can fulfil every little wish that Charmaine might have... But it's not easy with her low immunity and the aggressiveness of the disgusting beast.

Needing a miracle now more than ever...

Love,
cyn mommy

Scans outcome

2011-01-12T23:13:00.001+08:00

Cyn Lim
Apologies for not replying to msg and texts. Not really in the mood to talk abt it now. Her scan shows that she didn't respond to ICE. We found a few new spots. She isn't even considered stable. Through all the high dose and it did nothing to even slow it down.

(On behalf of Cyn)
Love,
Char

SCANXIETY today, again.

2011-01-11T09:07:00.004+08:00

I'm sorry I have not been updating but we are still in the hospital...

We were actually discharged on Thursdays afternoon only to reach home and find that Char had spiked another fever soon after. Needless to say, we rushed back to Children's Emergency and Thursday night was a nightmare literally. Her temperature ran up to almost 42 degrees and she was trembling, shivering non stop. I freaked out totally, was scared stiff. I was so helpless and I really thought I was going to lose... It was the most horrific night ever since her diagnosis. Thank God for a wonderful experienced nurse here. Auntie Lek was the one who sailed through the night with me. I trusted her when she told me that we couldn't do much except to help Char ride it through... Until her temp settles...

Anyway, it's almost 2 weeks now, excluding the few hours that we were 'discharged'... Char is definitely feeling better but her bone marrow is still asleep apparently - she still has no immunity and low counts... Had 5 transfusions in barely a week and her platelets are still not holding up! We also had a reaction from one of our platelets transfusion last week. Hives all over. All in all, I'm just so glad last week is over!

Her platelets is dropping at such a fast rate even after transfusions that I'm so scared... I've heard too many stories of having too much chemo poison to such an extent that the body doesn't really recover from it and can no longer make their own platelets... It's just so so so horrible. It's not like our babies don't already have a difficult battle and yet things just keeps getting tougher.

I'm drained, burned out and plain exhausted. Not to mention the fear and paranoia always hanging at the back of my mind. We are in an isolation ward and we don't get to see Jase often enough... That makes all these more painful than it already is.

I have almost nothing to divert my mind from cancer. Char is suffering from separation anxiety and wouldn't allow me out of sight unless to a quick toilet break. Coping in this bed with curtains drawn, most of the times not even aware if it was day or night or the heavy thurderstorm pouring outside. We are living in our little cacoon and I think it's driving me nuts.

My only indulgence is reading. I am now so good that I usually can finish a 600 pages novel in less than 2days. I find relief living amongst vampires, monsters, half bloods,

Charmaine's fever spiked

2011-01-07T08:58:00.001+08:00

Barely two hours of discharge, Charmaine went back to hospital 9 hours ago with a high fever. It didnt stop till 41 deg. The first that Charmaine has experienced, as it came with shivering too.

With everyone's blessing, she has fought it once again and the longest nightmare has ended.

Pray that it is not an infection.

Love, Char

Winx Club Season 4

2011-01-06T23:24:00.002+08:00

Anyone knows where to get the DVD for this? Dubbed in English. Subtitles not impt.

Update:
Char was discharge for 2 hours this afternoon before heading back to KKH again with a high fever of 40degree.

Love,
Char

O+ Platelets and Blood

2011-01-06T01:08:00.004+08:00

Charmaine has since been admitted to the hospital over the past few days. Her counts are not sustaining @ the optimal level for discharge. Her last transfusion of plalets by random donor sent her into a serious hives state, and Cynthia has been avoiding that option. Currently, she can only receive CSP, which to my knowledge, means, a single donor donating platelets, and not those cultivated from the donated blood. (which by the time this is posted, she has also subjected to hives from the CSP pack)

Whichever is the case, CSP or not, bloodbank is coming back to us that, there is not enough blood and platelets for Charmaine. It is just not comfortable for us to know this @ the back of our head.

Since Char went into operation last year, we keep a small group of us (O+) active and standby in case she requires. However, from blood to platlets, there seemed to be an increased of requirements by bloodbank. At the minimal, donor must be 50kg, which we are on borderline cases. Healthy platelets will help her alot.

I have enquired but bloodbank and KKH both mentioned, no direct donation for 3rd party. =(

That said, any increase in blood availability will help Charmaine, help other little ones who need it urgently.

Hence, I would like to request from all of you, to donate your platelets (for the hunks out there, healthy, and non-medicated) and blood (for the ladies) as regularly and as much as u can.

If u dont mind being on the "reserved" list, when @ the very last minute, they do not have any supply, and we can call upon u, let us know too.

Charmaine is on blood O+ and she is the ONLY one in the trio with this blood type.
No prize to guess where she get that from and dont bother to guess why the contributor is not contributing to this. =)

Thanks alot everyone, and a new year for a good deed.

Love, Charlene

Thanks for reaching out to us on our plea for blood and platelets donation.

Anytime u are ready, u can head to any blood bank conveniently located in Singapore for the donation.

Edited to add:
As there couldnt be a specific donor programme, all "blood funds" are donated to the common pool. That said, please do not let this stop u from donating. It requires a few days to process the appropriate end product for transfusion and anything more in the pool, means Charmaine can get them faster.

Happy New Year 2011!

2011-01-01T11:58:00.002+08:00

We wrapped up 2011 at KKH inpatient!!!

Her temperature starting creeping up slowly during the last day of 2010. And it went down just when I was going to bring her in. I kept praying, hoping that we will at least get to count down with Jase before her fever surfaces. Alas, just not meant to be.

Anyhow, we got into KKH at abt 10pm. And I was extremely impressed with the efficiency of the entire process. From checking in at A&E to being seen by a Doctor, to getting us admitted at our inpatient bed, the entire process took slightly over an hour!!! Unlike our previous records of waiting more than 3 hours at times! However, the entire episode that could have been their best ever was ruined when the nurse used a wrong size needle on Charmaine! :-(

Char has never winced whenever she is getting accessed. She would
clutch fist tight and bear with it. But when she started complaining of pain even after the needle was put in, I knew something was amiss. And when I saw at least half an inch of needle jutting out of her body, I knew something was just wrong!!! Argh. They insisted the needle was already in placed and that it was the right size but to me, we had never had pain or needle jutting out like that! I was worried that it wasn't secured at all! They even claimed that maybe she has lost so much weight! Absurd! Finally they came back and applogised. Said they used a longer needle. DUH. What else can I say.

Just gotta pray that nothing happens. Else who is going to be responsible!

Char also has her lowest ever platelet and haemoglobin numbers. Single digit of 6. Really scary. No wonder she is so lethargic! I knew that her blood must be low but was really surprised that it's that low! Not a good sign really. Her body's immune is getting weaker. She needs a break!!! Please pray that 2011 will be a good year for Char! So that she can stay away from chemo and enjoy her normal
childhood.

The past year has been a remarkable journey filled with what seems like more downs and ups but at the end of the day, what matters most is the fact that I am crossing into 2011 with Jase and Char by my side...
Happy New Year everyone!

I am alittle disappointed that I won't be able to send Jase to Sch on his first day of embarking into his life of independence. But I know that my son will not have a single problem adjusting! He is the most adaptable kid I've ever seen and I couldn't be prouder.

Love,
cyn mommy

Discharged on Boxing Day!

2010-12-28T17:56:00.002+08:00

Hey everyone,

We were discharged on Boxing Day afternoon and is now home recovering.

Charmaine had a meltdown on Sunday night after discharge which got me really down as well.

She suddenly starting crying: " I want my hair, I want to be normal
like you and everyone in the family. I want to gonto school, run and hop like kor kor, have many friends..."
I tried my very best to tell her that everything will be good, she will be able to go to school and have many friends... Like everyone else... However, I found myself choking with tears. I couldn't lie but I couldn't tell her that she can never, run or hop like any other kid, not to mention walking.

As she gets older everyday, she becomes more aware of her condition and her differences... I try my best to over compensate for everything that she is missing out every single day of her life. Even all my friends. Everyone of you.

I guess there will always be days when it's harder to focus on what we have rather than what we are lacking. As I look around me, the many toddlers playing and running around, even the scenes of a family walking simply on the streets can make me tear up. All I want is something simple and yet it just gets further from me. I honestly can't imagine how much more depressing it is for her...

Nevertheless, we continue to hope, to pray and keep the faith. We continue to pick ourselves up after the numerous meltdowns, after the numerous episodes of crying. Because the only way we know is forward.

Love,
cyn mommy

The Log Cakes Arrived....

2010-12-25T11:04:00.002+08:00

Just as arranged, the cakes by Icing Room has arrived in KKH for the kids to decorate for their loved ones to eat. Charmaine and Jase were thrilled to see the white cream based log-cakes with colourful creams tubes to decorate the cakes.

It started off in finding ways to make our princess happy during this painful chemo and it became hours of fun for Charmaine, forgetting the pain this chemo brings to her.

Kids love arts and craft, loves handiwork. Our dearest princess is definitely one of them. Love how she spend efforts in thinking who to decorate the cake to, and how she will decorate. Love how all these made her forget the pain she is going through, forget that she is in war with the monster in her. We probably would not know why, decorating a cake brings so much joy in her. But all we know is, it brings a smile to our little girl, who has been vomitting, fever, refusing to eat over the last few days.

Thank u Breadtalk, thank u Icing Room, thank u delivery van, and thank u Jessie and team for their swift responses and getting this request up in such a short time. Thank you all, for bringing strength to our little one, when she badly needs a happy diversion of energy.

Merry Xmas all, and pray for Charmaine smoothy recovery on her last day chemo! =)

^^ Happy Holidays!

Love, Charlene

Day 3 - No surprises

2010-12-23T09:38:00.002+08:00

We had a rough rough day yesterday.

One moment she was perfectly herself, hungry, cheeky and screaming, getting all excited over her Winx Club DVDs, all of a sudden, she starting screaming out in pain and crying uncontrollably. I freaked out immediately. I asked where was the pain ad she said it was her right leg but she couldn't tell beyond that. Pain is nothing new to us but we all know that her threshold for pain is extremely high. Off hand, I couldn't even recall any other times where she was crying like that except the murderous attempt we did to her while pulling out her temp line post stem cells harvesting.

That was around noon time and since than, we have been dealing with all the side effects of the chemo, the entire day and night. I gave her a dose of panadol for pain relief; she fell asleep after abt 15mins of crying and woke up 20mins later again, with all the pain and crying. I immediately know that she needed more pain relief med. Had to leave her crying, ran out to the nurse to get the doctor to prescribe coedine for her. I have it with me but needed the doctor's approval to give. Thankfully, Dr Khawn left her lunch half eaten to rush up and examine her. With the coedine in, she finally managed to get a good sleep.

I had to wake her up 2hrs later to pee (it's what we have been doing since we started ICE, every 2hrs daily) and miraculously, she woke up feeling good, with no pain!!! YEAH! To watch your own child in that kind of pain is what no parent should have to experience ever! But I just focused on the fact that we resolved the pain and that's all that matter!

Of course, while she was not in pain, she was nausea, couldn't eat and drink pretty much the whole day. But that's no surprise to me. I had expected it to hit her hard and bad, just was taken aback by the excruciating pain which was so sudden. And of course, she is very very lethargic, not herself really. She tries constantly to pull herself together to want to play alittle, to watch a little DVD but within 5minutes, she would feel the energy draining from her.

By night, her fever spiked. She threw up numerous times. Changed PJs, changed bedsheets, and change it again and again. My first concern was that our Day 3 chemo was just halfway done with one more drug to start at 12midnight. The standard protocol is to stop it immediately but if you had been following our journey, you would know that I'm not comfortable with any disruption to her chemo schedule. So while dealing with all the nausea, throwing up and fever, I knew that I had to convince the system and overcome the protocols. I must say that I'm grateful, deeply grateful to the doctors here which are definitely becoming more open in listening to every child's unique situation rather than a number in their many cases. It didn't take me long and all of us reached a consensus to continue the day's chemo, do cultures, start antibiotics, and add another anti vomit medicine which she has responded well before. Char has coincidentally always been on drugs that skips one or 2 levels of the protocols the doctors are trained in and hence, I am constantly being a petulant mom, insisting on using what works for her rather than what the protocol calls for. I know I must be quite the irritant pest, but I had to do what's best for Char. I feel bad always though, and wonders if I am one of the blacklisted moms here. Nevertheless, blacklisted or not, it will not deter me from fighting the protocols or the systems. It's never a personal thing but just a firm belief that my baby isn't a number, but an unique individual that as her mom, having walked together the journey, I know what works for her.

And it works! With an IV Lorezapem added, she went back to sleep and she woke up this morning feeling good again. It seems like we have kept the nausea at bay and that's great! One day at a time. Keep calm and move on. She isn't herself entirely but that's expected. Still tired and having no appetite, but we'll deal with that and the fever.

With the fever that's not coming down, discharge on Xmas day is impossible but it's Ok! As long as she is well!

All I want for Christmas is... to spend it together as a family. Doesn't matter where. :-)

Love,
cyn mommy

Xmas thanks...

2010-12-23T08:24:00.000+08:00

Thanks to those who dropped in their kind notes, and offered their time and heart for the requests made in Xmas seasons. Thanks to those who have never forgotten to pray for our Charmaine good health. Thanks Ling Lee, Sheau Wen and friends in the preparation and of course, to Jessie from Breadtalk for readily agreeing on the cake-decoration session.

Some updates:
@ midnight: First Fever 38.6 throwing up, nausea, no intake of food. We have not even completed Day 3 chemo. At risk of having to stop the chemo running at 12midnight. :-( got alot to convince tonight... I wldnt be surprised that she is already neutropenic.

Love, Charlene

The Spirit of Joy, Love and Magic!

2010-12-21T00:52:00.002+08:00

Day 1 of ICE chemo - loads of laughters, eating and of course, pressies from bed 12, Char's style! Despite us having left for months and only recently returned, Char fits right in this time around, with a loving and supportive Jase who insists on coming to the ward every single day from morning till night. I am proud and comforted to say: "Thank you Santa, I truly feel the Christmas spirit here, in spite of it all."

The celebration of love - I feel and see it in the 2 kids gifted to me. I feel the support of you, many of you, I do. Both right here in Singapore, and 16500km away in another continent. Old friends, new friends, 'comrades at war', friends yet to be made, we are so loved. Thank you.

Magic - Isnt it magical that love always creeps in when you need it most?

I lost count of days, months and years. My calendar is marked with scans, blood tests, chemotherapy and more scans, more blood tests and more chemotherapy. Until yesterday, someone said to me, "2011 will be yet the most challenging year in your life, in a way you can never fathom." Seeing the big picture is a skill I've trained myself to switch off 2 years ago. Hence, it didn't occur to me to think that way. My life is filled with little tiny steps. If anything, the past 3 months of my life, this is the one skill I've been taught too many times, and through all the pain staking lessons, I found out that I actually learned. Especially when the big picture was put forth to me yesterday.

I am aware of the reality but I still want to grab on to the hope, to the wavering faith, to the magic of Christmas that miracles are possible. Against all odds, against all my negativity, against all your 'kind hearted efforts of asking me to be prepared', the only thing keeping me alive is hope. Please, please please spare me all your kind hearted intentions, I appreciate it BUT I'm not ready to give up my battle. (The last 2 days of hearing such kind hearted intentions shocked and hurt me tremendously. So please spare me such words because it would only bring nothing but hurt, pain and tears. Which honestly, I have no lack of.

Yes, 2011 will be nothing I've ever imagined but it will just mean that I will fight like I've never done before. :-) The mountains to climb will be huge and the path will be full of twists and turns. I will continue to trip and fall, I will probably hurt myself continously and maybe cry an even bigger ocean of tears... The point is, my war isn't over and I will not stop fighting ever, with or without my faith. And if I have to live the rest of my life fighting this war, I would be glad to! Despite of me being drained completely and wanting to just escape from all these pain, I just won't give up! And if it's a pain and fear I have to live with my whole life, at the expense of me giving up everything, I'm more than happy to be in this constant fight, fear and going in and out of light and darkness, despair and hope, love and sadness, disappointments and elation roller coaster ride! AS LONG AS CHAR IS WITH ME, bring it on anytime. :-)

It's already Christmas here with the feisty family!!! Merry Christmas everyone!!!

Love,
Cyn mommy

PS: YEAH!!! I did it right??? I finally wrote an uplifting entry, did I not?!?!?

Insanity lives within me

2010-12-18T08:32:00.002+08:00

We found a lump on her left thigh yesterday.

I'm heart broken and I'm scared mad. I don't know what else to say.

I cannot stop crying. One moment I'm ok. One moment I'm just incredibly weak, I honestly feel that my body can just give way and crumble any minute, any second. I'm just barely functioning but I am already using every ounce of energy I can find to breathe and stay awake, stay sane... Stay alive...

When I first heard and felt the lump myself yesterday. I was emotionless.

But today, the reality has hit me real hard. I wake up and I find myself tearing non stop. I was crying when I was brushing my teeth. I was crying when I went to buy bread, I'm still crying when I'm eating.

Char kept asking if I'm ok. Why do I look like I'm crying. I said I'm sick, I have a running nose, I have a headache... I don't know what else to say...

I'm not ok and I don't know how to be okay. If you bump into me or see me, pls don't ask if I'm ok because obviously I'm not. Don't ask me how or why or what because I'm done explaining and I don't want to relive my fears time and again, by narrating our situation non stop.

We are admitting on Monday to start the ICE chemo. Our Chinese New Year this year was spent at Ward 76, so will our Christmas. If you feel like doing something for Char, feel free to drop by with a Xmas gift for her. I keep telling myself it's ok to miss a Xmas as long as we get many more to come.

I try to distract myself with what I can do to make everything better for her. I know she misses Santa and thought that Santa only visits in NYC where kids are spoilt with gifts every other day in December... Know of any Santas in Singapore? Pls let me know. I would very much like to ask if I can find a Santa to bring gifts to kids spending their Xmas inpatient.

It's time to get into battle mode again. Not like the war has ever stopped for us. But I won't give up. I simply won't. Because she has so much life and is still my cheeky baby dreaming of school and having long hair.

ICE is very tough, hopefully it will be tough enough to wipe this damn thing once and for all.

I admire the families who could laugh and enjoy in spite of it all... and I'm striving very hard to be one of them. First, I have to learn to stop my tears, and than I have to find my smile back... And than I have to search for the positive in all this insanity...

But I seek your help to not remind me of my pain... So please pardon me if I don't talk abt our situation... Anything but cancer...

At this juncture, I am still finding it so tough to keep the faith, to pray. I need your help and your faith to keep us alive. Please say many many extra prayers for my dear char. From the bottom of my heart, thank you.

Love,
cyn mommy