My Amazing Little Princess

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That was our weekend...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

Love,
Cyn momm

Char woke up already. She's quite alert and is talking to cyn. She can feel her feet. Only uncomfortable part is the neck. Tink theres some tube which I cant see. She dun feel any pain on her back.

From Angela ( @12:25am Yday)

Blessed,
Charlene

Charmaine has completed the operation

Thanks for everyone's prayers!

Though Charmaine is not out of OT yet, the surgeon has informed cynthia that the operation is a success. She has lost significant amount of blood but thanks to the op team, she is fine.

GA is now ensuring her stats is good and stable.

Thanks everyone!

Bless,
Charlene

Emergent Spinal Cord Op NOW

I have been unable to get onto blogspot the entire time we are inpatient it's so frustrating!

Finally a friend just fixed it.

I will keep the long story for another day but the short story is I NEED HELP.

PLEASE FOR CHAR to have a successful operation and walk out of hospital.

It's been a devastating week for me... I'm heartbroken and I'm just miserable... I don't even know what words can I say...

We are out of curative options now and she has been in a great deal of pain. We have been inpatient for a week and is still struggling to keep her pain under control....

This morning, she woke up unable to move her lower body and unable to urinate...

Our Radiation Oncologist Dr Lee from Mt E rushed us down for an emergent MRI of her spine.... And I got another devastating news...
This honestly is insane and is just so unfair. As if me having to watch my own daughter suffer in pain daily and unable to help isn't enough misery for this mother here. As if me watching all her tumors growing right in front of my eyes every minute, every day isn't enough to suck the life out of me!!! I really feel like I am dying literally.

And as if me having to watch my own child slowly fade away from me each day isn't cruel enough for me....

I can barely breathe each day... I can barely hold myself together... I can badly even feel anything except sadness and misery and devastation....

And it isn't enough?!?!? WHY?!?!?

Dr Lee ran out of the MRI room, asking if I am okay to push char into an emergent spinal operation. I replied, "I cannot think."

What is wrong with this world? What is wrong with me? What is wrong with my family???

I am very grateful to Dr Lee. He basically was the one who started running around, making all the necessary calls... Called Dr Aung, tried to call KKH and get hold of the neurosurgeon...

And than before I know it... Dr Seow from KKH was informed and than the next thing I know is, the team at KKH were waiting for us to come back to KKH in our ambulance... so they could wheel charmaine into the OT to releases the compression on her spinal cord that is causing her to lose the functions of her legs and bladder and god knows what....

I want to say I feel like shit but I know Char is more traumatized than me. When I opened my eyes and saw the scared, shocked expression on her face... I knew something wasnt right... She is freaking out that she couldn't move her legs but yet she didn't shed a tear...

It has been one hell of a day gone terribly wrong... And you think it couldn't get any worse than watching your own child fade away... But yet again, I am wrong. It can get much worse and it did...

Please pray for me that her surgery will be completed successfully and that she will regain the use of her legs and bladder, despite all the other tumor pains....

I will try to update as we go along...

Love,
Cyn mommy

Last minute operation...

Due to her Condition, the doctor has decided to do an op on our princess this evening. Please pray for her while they are preparing to wheel her in soon.

Currently, she has immense pain on her both legs and have difficulty sitting up.

Bless,
Charlene

This is fever # I lost count!

Hello everyone,

I hope you all had a good time voting and celebrating Mother's Day!

As far as I am concerned, I am alien citizen on this planet called Earth and this country called Singapore. Am I an apathetic Singaporean? I don't know. Probably even worse. Is there such a thing called "Apathetic Human"? That might be a fitting term for me.

It's a strange strange feeling I have been developing through the years of fighting cancer, especially of late.

Everything around me seems to be so disconnected and unrelated to my life purpose and yet, I am still part of this whole process. (Yes, you got it - I am officially INSANE.) Haha... I grinned.

I find it ridiculously hard to function as a normal human being. Someone said I have an old soul. Is that what it is? Is that what an average 50 year human is feeling and thinking? Hmm, I don't know really. I don't even know if I can put down in words adequately how I feel inside.

Here's a scenario of how it feels to be me.

While everyone else was going on and on around me about Election Day and who's better and what's bad, (Please don't misunderstand me - I am not complaining. In fact, those discussions provided a great source of distraction for me each day and it's interesting to know what is going on around me even though I don't feel part of it.) I was anxiously praying that Char's pain would subside and she would be able to walk and play again. It's important how the General Elections will turn out because it will determine the future for my kids. Yet, what future will there be for my Char if I can't find a cure for her...

The feeling is surreal. Relatively, compared to Char's life, everything else seem so insignificant. And the insignificance is increasing with each passing day at such an alarming rate, I don't even know how to make sense out of this life anymore. This questioning of life is as tough as the physical battle of the fight against cancer itself.

A lot of times, I feel this is as much a trial for me, as it is for Char. The physical war is draining but the mental battle is as unforgiving.

In the last 4 months of 2011, we have lost so many, so many precious babies. As I am typing now, so many of our friends in America are without their precious child, many of whom we have come to care and love during our stay in NY. It's devastatingly painful and heartbreaking. They are family that you wake up each morning to, have dinner alongside, played Bingo, shoulders I cried on... Neuroblastoma is so cruel... On some weeks, we lose as many as 3 precious kids.

And just last week, we lost a teenager in KKH. One moment (Saturday), I was talking to his mom as we were inpatient for blood transfusion and he was well. Well, not as good as your normal 16 year old boy but it's as good as he can be for someone fighting cancer. He was diagnosed just last year June and he relapsed this February. His tumor responded to chemotherapy and that's wonderful. But he was fighting an infection from zero immunity. And we got admitted for fever on Friday, barely a few days from I last saw him. Saw that he wasn't inpatient, was glad and thought he went home for a well deserved break. (He had been inpatient for months). Shockingly, I heard another mom said he had passed a few days ago. NO! :-( Not another one! It's too much to bear.

Everybody will die and that's the one thing that no one escapes from. But why, why is it so hard for me to learn to live with it? How does people who work in the medical world deal with death on a daily basis and yet find enough strength and courage to plough on?

There are fewer and fewer blogs that I read these days because many of whom have become angels in the last few months. I used to read to follow on how our friends are coping, learn of the latest clinical trials, and how they overcome the side effects... The knowledge I gained are invaluable. Most importantly, I was holding on to hope as I hear of triumph stories and miraculous healing. Lately, I've been reading of how they deal with own grief. It scares me silly. To actually feel the pain and devastation from just their words, a thousand miles away.

While I cursed and cried with some moms, I also draw a tremendous amount of inspiration from some of the greatest moms around. There's a particular mom I share an affinity with. She is so good at transforming her thoughts into words, the anger, the numbness, the pain, and most of all, the cursing feels so darn good. When I read her words, I am always tempted to just cut and paste her words here. She is the one that I think will make a great partner in crime with me when I want to go around town defaming cancer! www.rockstarronan.com

Caryn Franca, on the other hand, is the one who provides the strength and inspiration I need so badly. The motivation for me to not dwell in my numbness and sorrow. Instead, she reminds me to get up and continue to fight. www.caringbridge.org/visit/francafamily. Above all, she reminds me that I have a life to live, a life that her Nick had fought so hard for...

I couldn't help but feel guilty seeing her Nick. Nick is the one who is facing the beast head on and had never once complain what life had thrown at him. He just kept picking himself up and moving forth, with every obstacle thrown at him, seizing every moment he had in his short life. How does he even do it? I know I will never have his determination and courage. Look at me now, I am not even facing this beast head on, and I already feel beaten and drained. He fought for 6 years while we have been on this journey for only one third of his, yet I am already a weathered old soul who has lost my entire direction in life. I question myself numerous times. Why am I feeling so lost? Why am I allowing despair and hopelessness into my life so easily? Why am I feeling like I can't carry on in this constant state of sadness and helplessness?

HOW does one do it? The one answer that keeps popping up is LOVE.

Love for life. Love for someone so precious you would exchange your life for his or hers. Love for your own children.

I love my children so very much. Hence, I will have to crawl if it comes to that. For them, I have to, right? I read The Rescue by Nicholas Sparks and a particular phrase struck a chord in my heart.

How do I want to teach my children to face adversities in their life?

I cried. It hurt. Never once in my life had I imagined that I would be showing these tremendous amount of weakness in front of my children. This is not the mother role I envisioned as a kid. I wanted to be the mother who is laughing, living and loving life. I don't need my children to be scholars but I need them to be able to always look on the bright side, no matter how tough life is. I want to show them that even though their father doesn't want them and me, we can still make the best of what we have. Life is about falling in love and falling out of love and it doesn't matter how hurt we are, we move on because it's the journey and not the destination that matters. I want my kids to be able to fall madly in love and still pick themselves up even when love doesn't end well. It's all part and parcel of life. I embrace the fact that we once loved and that's all it matters. And I did it, didn't I?

But what happened now?

I am always in tears, as much as I hate it. I simply can't control it. This is the mother that Jase and Char have now. What am I to do? I even lost my love for life. How than can I show my own kids to love life? Everything seems wrong. Will I be the very culprit that ruin my children's lives instead of cancer? Am I truly going to allow cancer to suck the very essence of life from me? Is it too late for me? Can I still be the mother I envisioned for my children? The mother who laughs, lives and loves life despite everything that life has thrown at her.

When I think along this way... My survival instinct kicks in. I refuse to let cancer steal my baby away. I refuse to let cancer rob the mother that truly belongs to Jase and Char. The mother that laughs, lives and loves.

But yet, wouldn't this be an unnatural person if all I could do is to be one for the sake of wanting to be one, instead of just being one.

Hmm, do I make any sense now? Probably not huh? This is a rambling entry written for myself more than anyone.

It looks like a scene out of the movies where I have an angel and a demon standing on my head, each fighting to control my mind. And that's what's going through my head now. I am having this internal war within my head, trying to right my course towards hope and light. Finding every possible reason to convince myself to look on the bright side, to carry on, whether I like it or not, whether I want it or not. And more importantly, I have to carry on in the right way, the way I have always envisioned... The way I need to show my kids...

I'm telling you, its insanely tough. Everything is.

We are now inpatient at KKH. Came in for a consultation and platelet transfusion on Friday which turned into fever the moment we stepped into the ward! And for 2 days, we were working so hard to bring her high temperature down! Ironically, last night, I found myself trying desperately to bring her temperature UP because 35.8 degrees is too low! Just how much more fun can life throw at us huh!

I wanted to scream "Bloody Hell" so badly. However, I am reminded of the fact that unlike me, a lot of my friends are without their precious babies while I am playing with Char's temperature, bringing it up and down, feeling ridiculously insane. Nevertheless, while I know I should smile and be grateful that I am fretting and worrying about Char's temperature, it still just isn't easy! How does one even find the heart to feel grateful when you are so worried that you feel your heart can stop any moment?!?! And yet, I am expected to feel that and do it.

Medical Front
Charmaine's fever has subsided thankfully and we will probably be inpatient until Wednesday. She is still having pains. Leg pains and tummy pains but thank god, the morphine is doing it's job in keeping her pain within bearable levels. Of course, she tends to be in a certain level of discomfort throughout because the pain never really goes away. However, my little fighter will grab every minute to walk and move whenever she can. I sincerely believe it's your prayers that have carried us through. Thank you.

I've wasted last week of my life unable to function and hence, as a result, no one else seem to be moving along. In medical or should I say in life as well, one thing I have learned is while you trust your doctors to do their job, one needs to always work on it yourself as well. It's like what they say - not to depend entirely on others but ourselves in all situations. I'm not advocating you to doubt your doctors but I believe that it's for everyone's interest that we work together as a team.

In short, this translates to me dragging my slumped soul up and get my butt moving! It's time to start knocking and banging on doors again!

Oh God, I am so exhausted, physically and mentally. But hey, Charmaine only has me. And I am not the one suffering in pain so who am I to say that I am exhausted? Really, Cyn STAND UP and move on!

Love,
Cyn mommy

Mother's Day 2011

Mother's Day Gift

What gifts do I desire on this Mother's Day?
I sit and I ponder for awhile
The hand-made treasures and store-bought trinkets
Should surely bring a smile

For some these gifts would be just fine
On this, so special a day
But no, not for this mother
I see things another way

The things I want cannot be bought
My gifts must come from Above
Please Lord, my list is from the heart
And borne of a Mother's love

I want to watch her play
I want to watch her grow
I want to hear her say
"Watch me, see how far I can throw"

I want to hear her laughter
Delight in every smile
I want her "ever after"
Running free and wild

Her future calls and calls to me...
I don't even know where to start
I want all the "firsts" that are yet to be
First kiss, first love, first broken heart...

These things so ordinary
I scarcely dare to dream
I want them all Dear Lord
and so much more unseen

You gave me the gift of this child so precious
I thank You with all my heart
Every moment together I cherish
From her, I cannot bear to part

Please grant me my wish Dear Lord
Today, and all my Mother's Days to come
My only wish is for the treasure You already gave me
The treasure of my daughter, Char....



I really want to write but I am finding it hard even eating...


PET SCAN RESULTS:

More tumors, more tumors in her lungs, in her lower abdomen, in her thighs. Soft tissue diseases suck big time.

Almost all but one doctor is saying: "There's medically nothing to be done." OR, "How about bringing Charmaine to Disney?"

And the one left standing with me right now is Dr Aung.
I cannot even begin to tell you how devastated I am.

In Survival Mode for awhile...
For the last 3 days from Wed to Fri, I have been doing everything I possibly can, reading, calling, making appointments and just making sure that there are doors opened for Charmaine.

And I did. I found all the doors I could and they are now opened.

The quiet weekend has brought out the intense pain in my heart which I've been withholding and hiding firmly over the 3 weekdays, keeping my mind focused on what had to be done, instead of crying out in desperation.

But the quiet weekend... I couldnt withhold my emotions any longer... and now I find that I cant think... I am struggling and I feel weak and sick, but I cant stop and rest because I am the only person Char has... She is depending on me and me alone...

Over the weekend, we had a a few small talks about her thoughts on treatment and travelling...

She said very clearly not once, not twice but many times...

"I WANT TO GET WELL!"

While we both prefer to stay at home... home isnt the place with options anymore. I managed to find some treatment options available for home and Dr Aung has agreed to treat but it takes time for the drugs to be found, brought into Singapore.....

And I dont know how much time...


At the back of my mind the entire time, Char words keep ringing in my head:

"I WANT TO GET WELL"


Love,
Cyn mommy

Waiting for PET scan

Its Tuesday morning... We are waiting for Char PET scan and I don't know what I'm thinking.

We started chemo last Friday. I want to tell you what cycle that is but I lost count. Am I pathetic or is it me aging exponentially?

I know I have to be positive. I know I have to cast away all my negative thoughts.

But believe me, it's insane. Its beyond insanity actually. To be able to see the tumors with your naked eyes and to be able to track their growth like a medical doctor. I didn't know that a mother has to endure anything like that... Beyond anything humane.

I dont want to know the results tmr. I don't think I can come and collect the report and not suffer a heart attack or a stroke.

What am I supposed to do? I pictured them as frogs and is willing them to just die and disappear but my will power is heavily used up... Barely enough to last me another day...

We are finishing up chemo today and hopefully, we will finally go home and sleep on our beds. We have not even touched them since we landed.

I can't write any more.

But please keep those prayers coming in. Please pray that we have good scan results.

Please pray that Char pain is controlled and she can regain her ability to walk again.

Thank you all.

Love,
Cyn