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
Friday, October 28, 2011
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
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
Tuesday, October 25, 2011
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.
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
Monday, October 24, 2011
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...
Saturday, October 22, 2011
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...
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
Friday, October 21, 2011
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.
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...
14 July 2005 - 21 Oct 2011
She is pain free and she gave us her parting smile.
She is pain free and she gave us her parting smile.
Really too much
Thursday, October 20, 2011
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...
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.
Sunday, October 16, 2011
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
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?"
Friday, October 14, 2011
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
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...
Wednesday, October 12, 2011
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
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...
Friday, October 7, 2011
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.
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
Wednesday, October 5, 2011
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.
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?
Tuesday, October 4, 2011
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’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...
Monday, October 3, 2011
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.
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
Sunday, October 2, 2011
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
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
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
Pray not only for Charmaine, by Cynthia, to face the final moments.
Thank u.
Love all,
Charlene
In ICU again...
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!!!
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
Saturday, October 1, 2011
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
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
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