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

Tuesday, September 27, 2011

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!!!

Wednesday, September 21, 2011

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.

Cyn mommy

Char is OFF the ventilator and breathing on her own!

Tuesday, September 20, 2011

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!

Cyn mommy


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! :-)

Cyn mommy

A quick update

Monday, September 19, 2011

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!/group.php?gid=53217919641.

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

- Godma Jolene


Saturday, September 17, 2011

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.

Friday, September 16, 2011

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!!!

Cyn mommy

My heart hurts...

Tuesday, September 13, 2011


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.

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!

Sunday, September 11, 2011

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?

Cyn mommy

I am a mother of possibilities.

Friday, September 9, 2011

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...

Thursday, September 8, 2011

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.

Cyn mommy

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

Tuesday, September 6, 2011

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.

Cyn mommy
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