Fever finally subsided this morning for first time in 7 days

Wednesday, March 31, 2010

Hi all,

Thank you for everyone's prayers and thoughts.
My little girl's fever finally subsided this morning for the first time in days!

Dr Aung comes by dutifully everyday to check on Charmaine even though it's not her round this week. With Dr Aung's experience and assurance, I was able to live sanely. I trust her with all my life and she has been so assuring that even though Char had been having this persistent high fever, she knew Char will recover. Despite char's high fever, she would still sing to the tune of her favourite movie when it's played on TV and she still talks and plays. And that's why Dr Aung declared: "I'm not too worried yet!"

She changed Char's antibiotics last evening and assured me that the fever would come down! And true enough, it did!!!
Thank god!

Dr Chui was in KK today and dropped by to say hi as well.

These doctors don't have to go the extra miles but they did. I'm not an expert but in medicine, it's rarely a definite situation. We are blessed with doctors who care, doctors who listen, doctors who share. I know I've said countless times how grateful I am to these 2 doctors but it will never be enough!!! Thanks to Dr Aung who would drop by every single day to make sure she sees Charmaine clinically instead of just staring at case notes! She understands the need to assess each child and treat each patient based on their symptoms instead of following a standard set of guidelines - switching from one medicine to another medicine when there is no response to the precious.

I'm so grateful I have these 2 angels by my side but yet I'm sad that not everyone is as lucky as we are...
Most treatment regimes are set guidelines but having a compassionate and understanding doctor makes a world of difference when it comes to getting cured. None the less, Singapore is still blessed in general with doctors like Dr Aung and Dr Chui. I know of kids around the region who doesn't have doctors whom can treat them and yet cannot afford treatment here!

Need to run now. Char is awake! Thank you all!

I will write another entry tonight about another little girl who needs extra prayers for tomorrow.

Cyn mommy

Day 6 - still here in KK and still having high fever

Tuesday, March 30, 2010

Char is still having high fever of close to 40 degrees...
Doc stand is still the same that it could be a viral fever like Jase...

Please pray that it's indeed only a viral fever and nothing more than a viral fever.
Please also pray that her counts/immune comes up quickly so that she can fight off her viral fever.


Dear Patrick,

I actually typed a very long reply to you but couldn't post it on the comment.
I'm sorry that you lost a child to medicine and is probably assuming that you have better ways to help me not repeat your steps. But I am not you and my Charmaine is not your child. Jolene feels very strongly for me because she has witnessed me crying numerous times over your words which actually hurts like a piercing knife. I thought I know you have only good intentions but those last couple of comments made me wonder.

One of the biggest reasons we didn't post your comments is because we know it would start another round of waging war here which we do not want to see. You chided me for being a child who doesn't take responsibilities... I am a child yes because I am struggling to cope with all these unknowns and I am feeling lost almost all the time in this journey. You said I've made a lot of mistakes. Ya, I regret and hate myself so much for not eating well and crying too much when I was pregnant with Charmaine and just kept cursing myself. But what else could I do when I was 7 months pregnant with a son that barely turned one and my than husband decided to not just walk out but kicked us out of the house...

Patrick, I don't know what happened in your life and neither do you know mine. Let's just stop here. I don't know what have I done to incur such wrath from you. To ask me to be prepared and to even imply that my son could be gravely ill. I'm sorry if we have offended you. Will you please accept my apologies if in any way have I offended you and just leave me alone. Please.

I'm a mother and I don't know how to be prepared for my own child's whatever. And I never will. And right now, I'm still fighting with my every ounce of strength left, what are you trying to imply or achieve, I don't know and don't wish to know. Point is I don't wish to cry in front of Charmaine and one of the things that made me cry are your words.

I've been silently reading your comments but it's reached a point that I know I cannot see any of your comments anymore because it might just tear me apart while I'm now still here praying for Charmaine's fever to subside. And yes I'm an onco mommy. I live each day of my life, wondering if it's genetic and if Jase is indeed safe...

Patrick, thank you for being concerned for my little girl Charmaine and my son. I appreciate your concern.
I wish you all the best. I would like to just make it clear that we would not be publishing your comments from today onwards. However, if you still choose to leave your words, I can only pray that you will be kinder to me and my family. Thank you.


Still having fever...

Sunday, March 28, 2010

It's Sunday now and Charmaine is still having a fever. Her 24hrs culture results came back negative which is good. But as fever is still climbing up and they just did another culture.

Jase fought his virus for more than 3 days so I reckon if char indeed got the virus from Jase, with her zero immune, it will take her awhile to fight it off. Please pray that Char will fight off her virus soon and that she will recover fully. Thank you everyone.

Cyn mommy

Admitted again at 12 midnight with a fever and tummy ache

Friday, March 26, 2010


Thursday, March 25, 2010

Just hours ago, I was still 'alive' updating everyone of her scan results and now... I am in the deepesy abyss of the ocean. BLACKNESS and BREATHLESSNESS.

Dr Aung just emailed me that Dr Kushner from MSKCC emailed her and that he is proposing that we switch Charmaine to a very intensive chemo ICE.

At this moment, I have NO IDEA what ICE is all about. All I know is that a couple of families in NY which I happen to know all decided to seek treatment elsewhere because they were not comfortable with ICE. I vaguely remember one saying that ICE is equivalent to BMT (Bone Marrow Transplant itself!).

Another family just emailed me saying that his son that is undergoing the same chemo is having seizure and suffering from confusion and is HARSH.

I cant stop crying again...

I dont understand...

I have been following some of the other kids' treatment in States and saw that some switch to even milder chemo therapies when the child doesnt respond to what Charmaine had received - Vincristine/Cytoxan/Topotecan.

I dont understand WHAT URGENCY did Dr Kushner pick up to make such a decision.
I dont know if I should proceed as suggested by him...

Charmaine is happy now and having a decent good quality of life... Should I succumb her to something that will cause seizures and many more issues? I dont want to... And I honestly do not think that we have exhausted all other means either...

I dont want to make a wrong decision... so afraid and so helpless again...


Scans stable...

Dr Aung just called me about an hour ago...

I wrote her an email yesterday, must have sounded desperate or insane.

So yes, she called me today the moment she returned to work from sick leave. THANK YOU Dr Aung.

Here's the results:

Her right femur showed a mild reduction in cancer cells.
Her left femur remained the same.
Her sacrum also remained the same.

I dont know what to say. Else we can call it stable. I knew beforehand that I wouldnt be seeing a report that says CLEAN. (Dr Aung explained the cancer cells in the skeleton bones do not disappear so fast, some even show up on scans one year later but it doesnt mean that the cells are cancerous.) But, my heart still felt a tinge of despair and sadness upon hearing the results.

Dr Aung comforted me saying that she is glad that as long as there isnt any progression, we are still on track.

Dr Aung also emailed Dr Kushner in MSKCC whom suggested that Charmaine also repeat her bone marrow biopsy and MIBG scan (which is THE SCAN that bothers me a little). I just wish the Iodine they use here in Singapore is same as the one they use in MSKCC which is apparently much more 'edible'. I cant say its fair for me to make the statement since I have never swallowed the Iodine myself but I can assure you that I have seen the physical color of the liquid med and its different! Charmaine never ever once complained of the Iodine in NYC but oh god... the one here which she had only consumed once last year march when she was diagnosed, smelled terrible and it would be rather traumatising to get her to drink it. :-( Another mommy said her daughter simply refuses to take it. :-( The after-taste is just too much for the kids and it stays for a LONG TIME! SORRY that I rant again... :-(

My breathing is still not normal yet but... stable is something that I will take it now...

Please continue to keep Charmaine in your prayers that her cancer cells have already been killed even though they still show up on the scan... Dear God, please let Charmaine be healed completely and that there are no more cancer cells in her body. Please let her live happily and healthily for a long time!

PS: For those of you who heard, Jase's fever has finally subsided this afternoon thankfully. His temp took another spike at 39.5 this morning but after medicine, the fever subsided. THANK YOU. I will have to continue to watch over him and make sure the fever doesnt creep back again.


Discharged and home now!

Monday, March 22, 2010

Charmaine completed her scan past 9 and we were discharged just before 10.

She fought off her after effects of the GA only when we reached home and is now having her dinner.

Thank you everyone...

cyn mommy

Just wheeled in for her MRI scan at 1920hrs

We are still at KK but Charmaine's fever has already subsided since Saturday.

We could have been discharged this afternoon but Dr Aung managed to schedule a MRI scan last min so we didn't have to go to a private center. Thank you to the radialogists and the doctors and nurses who stayed behind for overtime just to slot us in.

I am of course feeling anxious again from the scanxiety.

Charmaine is feeling wonderful after she was de accessed this afternoon and we spent the last 3 hours playing in the room.
Maybe because we were having so much fun just minutes ago and now I had to force the sleeping gas mask onto her face to sedate her, she struggled and cried loudly... And maybe because I couldn't switch myself back from the happy moments earlier as well, I'm feeling horrible now. The radialogy dept is closed and hence I had to come back up to the ward to wait for the next 2 hours... This physical distance away from her also makes me very uncomfortable and jittery. Like even if it's just seating outside the scan room creates some sort of comfort feeling knowing that you are just very close. A few steps away doesn't ease the scanxiety but it just makes me feel less guilty to some extent... Because I just want to keep her close, as close as I can since I'm already breaking the promise of staying right beside her during the scans... I'm sure all the other parents feel the same way...

Charmaine always tells me not to leave her alone and to stay by her side throughout. This is one of those promises during her treatment that I've hardly kept to it and yet still has to lie about. Maybe that's why the guilt stays in my mind... And continues to build up every time she has a scan... Of course having scans are the least invasive part of our journey and I am just being a pig ranting about it. But I must say scanxiety is probably one of those factors that has the highest risk of causing a heart attack for parents.

Today's scan is going to determine our treatment moving forward and it's the first time since her relapse that we will know how effective were the previous 2 chemos... I'm a total nervous wreck now, typing and waiting...

Please do keep my little girl in your prayers and please pray that she has responded very well and that we have achieved another successful remission... Thank you all.

cyn mommy

Waiting at KK A&E now...

Friday, March 19, 2010

A really quick update for all...

Charmaine was discharged on Monday afternoon after her fever subsided. But her appetite has been rather poor over the last 3 days. Even her energy is also at an all time low.

This morning, we came in for a blood temst and her blood counts were above the minimum level and hence no transfusions was needed. We returned at about 3pm for her outpatient consultation with Dr Aung and by the time we reached home about 6pm, her head felt hot. I took a temp check and indeed she has a fever at 38. I prep her for the admission because she has zero immune.

She just started crying. It's been a long day, esp for Char and it's going to be the third time we are in KK today! Thankfully, after some explanation, she understood the implications of a fever and made the decision herself to come to KK.

It was another tormenting time watching her being poked not only on her port but also on her hand. No matter how many times I witness it, the pain is as excruciating as the first time...

It's now 12 midnight and she just fell asleep after her paracetemol. I am still waiting for them to start her on the antibiotics fortum. KK is once again full to the brim and we are sent to the woman's tower. The nurses from ward 76 are such angels! They brought her the commode all the way from children's tower.

I need an extra prayer for my baby girl again... Please if you may, pray that there is no infections and her fever will subside once they start the antibiotics. Every fever always turns me into some paranoid mom. My mind and heart cannot rest until her fever has fully subsided...

Another weekend in the hospital for us! There's only been one or two weekends that we were blessed with being able to enjoy it at home since we arrived.

Have a good weekend for the rest of you blissful souls.

With love and hope,
Cyn mommy

Day 4

Sunday, March 14, 2010

Hi everyone,

I hope everyone is doing well.
Another update from the hospital.
Char's temp spiked above 38 degrees yesterday and experienced the same left shin pain in the wee hours of yesterday. Hence blood culture was done and she was started on 2 antibiotics. One of which is oral cipro, the drug used on puppies that showed abnormal bone growth. No studies has been done on human but I'm forewarned.

Life in the oncology world consists of one after another hurdle. And the most terrifying part of this journey is that it's a lifelong challenge. You never know if you created another harm in your body while trying to treat the cancer but yet you are left with absolute no choice. It makes me think, it makes me confused and it makes me feel lost. I feel like I am mentally dead half the time literally because the decisions I'm forced to make, goes against some of my beliefs. My only guiding beckon that has remained the same throughout my life is "Life is precious and wonderful". Despite my faith and belief, I have to admit it gets tougher not to be shaken with each passing day.

Nonetheless, isn't life full of ups and downs for everyone! I'm grateful that my guiding beckon has kept me walking in the right direction and I will have to continue to remind myself to focus on nothing beats being alive! Because as long ad we are alive, there's always a chance for anything.

With Char's spike in temperature yesterday, we are not allowed to be discharged today. Chemo today was very nearly postponed as well. However, thankfully I shared a mutual understanding with Dr Aung and chemo was allowed to proceed as planned! You have no idea how much I really hate to disrupt the protocol because I'm so terrified of how the disruption will affect the end result! So the good news is we have finally completed our 2 cycles of chemo and Charmaine will have a scan repeated in 2 weeks on both her legs to determine our course of action moving forward. These 2 cycles were supposed to be less scary than the previous 5 cycles but it turned out to be Char's most sensitive and my most worrisome ones...

Now that chemo is done, I'm praying that her fever will subside totally today and please also pray that she doesn't have any infections! All I can do now is to wait for her counts to drop and for us to climb up to her normal happy 4 year old with pink rosy cheeks.

Cyn mommy


Friday, March 12, 2010

Charmaine's pain in shin is gone and she fell asleep about 7 after one dose of paracetemol.

Now, she is my happy girl again, albeit some swelling on face, probably due to water retention. We are watching Tom and Jerry on tv.

I just want to drop a quick update so everyone can rest their mind for a bit. Next infusion of chemo starts at 5 pm.
I sincerely pray and hope that tonight will be a better one for us.

Cyn mommy

Urgent prayers needed

It's 5 am now and we just finished first day of chemo at 2:30am.

She suddenly cries of leg pain in her left shin! I just requested the nurses to inform the doc so that paracetamol
can be given to help her sleep.

I entered KK yesterday with mixed emotions. Half my mind was glad that we can move forth with 2nd chemo but the other half was jittery about what may happen. I simply can't shake my mind off what happened the previous time... It's so tough to send my happy and active little girl in because at the back of my mind, I know we have to start and repeat the climb once again...

Dear god, please take away this pain and let it be a one off unrelated incident!

Please pray for my little girl!
Thank you...

Why another challenge again...
Each sudden cry of pain could litterally make my heart stop beating...


Touched and grateful for the wishes

Wednesday, March 10, 2010

Post last edited by Jolene to include pictures

Hi everyone, we are at Day 30 post chemo today and hopefully her neutrophils have already gone up and beyond 0.75! As of Monday, we were at 0.39, very low but definitely coming up. Hence 2nd chemo was postponed once again to tomorrow.

Charmaine is doing well, eating well and being generally a 4 year old!

We finished her 10 sessions of RT on mon and I would like to say a word of 'thanks' to all the nurses, radiation therapists at treatment room 2 of SGH!

Thank you for being understanding when we had to change timings abruptly due to her transfusions and KK visits. And most of all, the radiation therapists at NCC for waiting more than 2 hours for our chirpy princess to fall asleep! Thank you!

In addition, thank you for all the wishes and blessings sent for my birthday.

I have to thank my kids for making me the happiest mommy.

Throughout the past year, the one thing that I'm regretful of is not being able to stay in touch with the very people whom has kept me alive till today - FRIENDS! I am what I am today, not only because of my family but also because of my friends! Nonetheless, I feel like an unworthy friend to them all. Even though I know none of them will blame me but it's just one of those few things etched in my head.

The 2 friends that I really regard as family more than anything else have once again warm my heart. Thank you Jolene and Charlene for celebrating my birthday with me like the way you celebrated Jase's birthday last year on my behalf. I'm truly blessed in many ways.

I'm not good at posting up pictures in here and hence you don't ever see pictures in my posting but I will try again and hopefully I can put up pictures of them cycling.

Other than cycling, my 2 babies found another new hobby! Doing work on their assessment books which I bought for char to get over the studying part she misses.

It really never fail to amaze me how the NYC trip has matured Jase and especially Char. Jase used to dread going to school after his sister's diagnosis last year as he couldn't understand the fact why Char didn't need to attend school wheras he had to, instead of spending time with his mommy at home, like his sister. But 6 months in NYC and away from school, he has found a renewed interest and passion in learning so much so that it hurts me.

You might wonder why would I be upset? Because I've had to deprive him of all the many things I had once envisioned for both him and Char. In fact, Jase developed a keen interest in drawing and has mentioned numerous times to me that he wants to go for lessons and even said he wants to go back to phonic classes (something he didn't like previously). It's one thing for a parent to sign their kids up for lessons and another when a kid tells you he actually wants the lessons! I'm of course more than happy to have 2 kids so passionate abt learning but because of the uncertainty in Charmaine's life, I'm so torn. I still am very much in a turmoil, not knowing how to plan ahead. As much as I've said that for oncology families like us, future planning doesn't always seem to make any sense since things can change any minute and the best thing to do is to take a baby step each day. However, the fact that I have a son about to start his primary one schooling soon remains a near future fact that I have to consider.

I'm definitely starting to rant, am I not? On days or moments like these when my head is cramped with too many decisions, too many questions, too many unknowns, I have to remind myself to just look at what I have right in front of me now - my 2 kids happily playing, and that's the most realistic present that I should be enjoying and treasuring. And of course, this shifting of focus would help me to breathe better and just live 'sanely' until god knows when those thoughts and fears would invade my mind again. Whatever it is, I am just very glad to be here typing this and surrounded by everyone that I love.

Hospital Crunch - the headline in today's papers is a topic very close to my heart, for obvious reasons. Its not only CGH or TTSH that has this problem, KKH is definitely experiencing this nationwide challenge as well. So its seriously not just a problem caused by our aging population.

Our young ones are also for many reasons, known and unknown, fighting for bed space in the hospital as well. I do not have the hospital statistics to prove my point but based on our previous 5-6 admissions in the last month, I think its more than enough to make me worry about what is happening to the young ones! I thought 'NO BEDS AVAILABLE" was only for Oncology patients who more than often require Isolated Rooms due to their low or almost non existent immunity but to my shock, when I enquired with the Admissions Desk, I was told it was a whole hospital issue - even normal kids who seek treatment in A&E for fever and others, also had to wait for a long time for a bed to be freed up.

On our previous admission on 25th Feb for Charmaine's neutropenic fever, we arrived at KKH A&E about 10ish in the morning and we didnt get treatment until almost 6 hours later about 4pm. I must confess that I myself was amazed that I didnt scream my head off while waiting for a bed and watching Charmaine's fever slowly creep up to beyond 39 degrees with absolute no treatment or whatsoever.

Its partially because I am now an experienced oncology mommy and no longer that paranoid mommy like the time Charmaine was admitted for her first neutropenic fever. The thing about neutropenic fever is that you are taught by your oncology doctor that its an emergency and should not be taken lightly in any sense. And of course, as a new oncology parent, I pretty much translated that to life and death urgency and can you imagine the first time she had a fever and when I rushed her down to hospital, I honestly believed that any seconds delay would harm her greatly! Of course, I'm not saying that I dont panic like I used to do. I still panic each time she has a fever but I guess I am able to keep my brain in my head and tell myself to try and act like a rational human being.

Back to our 6 hours wait in KKH, there was another father who smiled at me when I heard that he was actually going to drive his feverish daughter back home to pack while waiting for a bed which will most slightly be available when the patients are discharged in the afternoon. As for us, we were told by the pleasant admission office staff to maybe 'go for a walk' or 'go for lunch' at 12ish since the bed wont be available until 2:30pm. I smiled back and replied "OK". (I only managed to do that because Charmaine's fever was in the mid 38 range but frankly, I do not wish to discuss about the system lapse here). Besides, I know that KKH doesnt dispatch their nurses down to A&E to treat the onco patients and since without a room, pretty much nothing would be done on Charmaine.

I have to sigh sadly at what the world is becoming into. Whats up with the more number of sick children? Whats up with the lack of beds in hospitals? Nursing and medical professionals shortage is a scary reality... As Singapore progresses to build more and more hospitals, what about the mindset in treatment?

I have absolute trust and faith in the doctors and nurses in Singapore and thats why I have chosen to return to Singapore for treatments that are available in Singapore. However, there are certainly frustrations for me as well. I definitely cannot speak for anyone else except myself but I never stop to ponder... Why is the dye used in NY for the same MIBG scan better than the one in Singapore? When it comes to clinical trials, I can accept the reason that results are not proven and hence not allowed in Singapore but why dye? Dont we claim to have medical treatments of worldclass standards? But why... Why is it that even Hongkong has MIBG Therapy and yet Singapore has nothing... (I'm just stating what I know about Neuroblastoma treatments).

When I was younger and ignorant (still am ignorant actually! but no longer young!), I used to read news about Singapore wanting to focus on R&D in biology and wanting to contribute in finding more 'cures' for cancer. It was great news, just reading it as a normal person living outside the oncology world. But now, I wonder "HOW". Most of Singapore treatments are considered reliable, based on my personal opinion of course! Why reliable? Because we prefer to stick to methods and treatments that has been proven and probably even used for a long long time. Frankly, its not fair for me to comment so much because I am nowhere trained and skilled in any medical knowledge and seriously, what right do I have to judge and comment. (I just wish to clarify that I am not trying to judge anyone or any hospital or any doctor or any nurse for that matter, I am just using this avenue to rant and get my frustrations out of my head.)

Granted that no one will ever want to be a guinea pig in medical trials but by only allowing trial and tested (or proven and FDA approved or whatever approvals there is)treatments to be available in Singapore, wont we always be a follower? Just a random thought. I am not the only one who has a child diagnosed with Stage 4 Neuroblastoma in Singapore and there is at least one other parent who wished that there are other treatment options available in Singapore for her child, clinical trial or not. I know we have a long way to go in terms of allowing clinical trials in Singapore and frankly, I think I may never live to see that day.

For me to wish that cancer doesnt exist at all in our world is like me wishing for dinosaurs to come back from their exstinction, isnt it? But on top of me needing Charmaine to be healthy and alive, I do have a wish that rules and regulation in Singapore will advance appropriately in relation to the infrastructure development so that the next unfortunate child diagnosed with neuroblastoma will not need their parent to beg for that increased chance of survival, no matter how small...

What I can do here is to only provide a voice for the others who is not as blessed as Charmaine is...

With that, I hope that everyone is healthy, happy and enjoying your precious moments of being normal!

With love and hope,
Cyn mommy

PS: Charmaine is most probably admitting tomorrow for 2nd chemo pending good blood counts. After the rather frightening experience with our first chemo, I need your prayers to ensure that Charmaine will get through her 2nd chemo smoothly and our 4 days stay will be uneventful. Thank you from the bottom of my heart.


Other photos from cyn

Swollen knee

Walking Cola with plug still attached to hand

The kids with por por

Sharing some happy moments with our readers

Friday, March 5, 2010

As part of the surprise for cyn mommy, Godpa and Godma "kidnapped" Jase while char was sleepng after her radiation.

We went to The Icing Room to decorate a cake for cyn mommy.

After that, Jase chose a bright and cheery "sunflower" bouquet for his mommy as he knew that Cynthia loves sunflower.

PS: We're aware that the flower pictured above seem to be some other species of flower instead of sunflower.

Before heading back, we went to buy some chicken wings. The stallholder who is every bit the benign-looking uncle asked Jase teasingly,

[loosely translated: All for you to eat?]

Jase who is usually uncomfortable in his mother tongue piped,

[loosely translated: No. It's for my mother. It's her birthday.]

The uncle laughed heartily and said,

"这样的话,记得跟你妈妈讲 uncle 祝她生日快乐!"
[loosely translated: If that is the case, remember to convey the message to your mother that uncle wish her a very happy birthday.]

With that, he passed the bag of chicken wings to Jase.

Back at home, Jase remembered to relay the message to mommy whereas godma has clean forgotten about it.

Before dinner started, a sweet old friend popped by with delicious fish head curry and pork knuckles. Together with some home-cooked food prepared by cyn's dad, we all tucked in.

Next came the moment the kids had all been waiting for-- singing, cutting and eating cake.

There are 2 cakes seen above as the delicious cheesecake was brought over by Charlene jie jie when she popped by during the day to surprise cyn.


A wish that all mothers make during this special day

Wednesday, March 3, 2010

I know you cant enjoy it right now, and have no mood for it.
But, it is still your birthday and you should cut yourself some slack in it.


Happy Birthday Cyn Mommy!

We all know your wish this and every year to come.
And we all have the same too!

You have learnt the Monster, its real name, and its symptoms. we have all learnt and seen the effects of it. But today, enjoy this day with your babies, and let's fight on it again tomorrow.

Happy Birthday babe!

From your lovelies
Feisty Princess Charmaine. Design by Pocket