We reached NY safely, thank you.

Wednesday, August 5, 2009

Hello everyone,

I should write...
But its the first time ever I am so brain dead, probably due to the jet lag. Or maybe just having too much on my head, or maybe I am coping in my own realm of reality (denial?). Please pardon me but this entry is not going to be a coherent one.

Let me just touch on briefly what had transpired over the 2 weeks before our departure from Singapore. I was enthralled in a lawsuit with my ex-husband defending myself up against a top notch lawyer from a very famous law firm. I really dislike attending court because it never ever fails to drain the energy off me totally. This time, it was even more tormenting, having to shuttle between hospitals and the court. That was the first time I left charmaine in the hospital without her mommy and I couldnt feel more guilty - I couldnt even concentrate in the courtroom, as all my mind was on Charmaine who was waiting for me in NUH. [I know his lawyers are diligently reading up on Charmaine's blog and I wouldnt be surprised if I get some lawyer's letter from him seeing this blog entry.] I am so sorry that I cant share more of this and its precisely because of this very reason why I dare not blog much, not knowing any aspects of law and what am I not allowed to step on... [Even as I am typing now, I am full of apprehension... and its very tiring]

"Take each day as it comes" is pretty much how I am living my days...
No anticipation, no dreams, no zest. I just concentrate on what needs to be done the next few hours, the next day... I always quietly promise myself that the next entry I write has be a positive one, and one that doesnt make any of you reading it tear because I hate to be the reason for upsetting one's day. But I always fail.

Upon the closure of the case, I had to focus on packing. 2 days were all I had. Charlene, Godma Jolene, Uncle Kehang, Wei Kang kor kor, Angela, Emily, Josephine and Fanny all dropped by to help whenever they could. Thank you for being godsend. And I have to mention Lynn and Kevin who sponsored the DHL courier charges and helped to arrange for the shipment to be sent. And also thank you to SIA for being so understanding in accommodating our request to postpone the flight last minute due to Charmaine's fever. I seem to have forgotten to say a word of thanks to all the kind souls who made Dora party possible for Charmaine. It was the first time my feisty princess Charmaine was out in a public setting and the looks of her face said it all when it comes to how much she enjoyed that brief moment of being out there. THANK YOU ALL.

Last week when Charmaine was suddenly admitted for fever infection, I couldnt have been more stressed than ever. Amidst the court case, amidst the packing, amidst arranging the flights and the accommodation... everything just added up to a humongous amount of things to be dealt with...

Having said all that, we finally arrived in New York a day later than planned, but whatever it is, we are here. A few close friends told me to take it as an extended holiday with the kids and it may help me to cope easier. The mind is a powerful tool no doubt, but my physical body is incapable of commanding my mind, no matter how hard I try, having been battered so many times... I almost feel fearful to be happy, in fact, I do. I try to numb myself, not too much joy, not too much hope, not too much of happiness, in the hope that, if I dont have too much of happiness in my life, maybe whatever little happiness I have wont be cruelly snatched away from my life. I am sorry I digress...

The 2 days we spent over the weekend before the first consultation on Monday, were heavenly for the kids and myself. It almost felt like a holiday. In fact, it does. Although we are all trying to get over the jet lag, till today... We did simple things like walking down the streets, doing some grocery shopping and just playing in the park. Jase and Charmaine enjoyed themselves thoroughly, especially with their favourite Charlene jie jie. Charlene's presence definitely made settling in so much easier. She is a very efficient girl, so fast and swift in whatever she does and she takes on everything as if they were her obligations.

Good things do happen amidst all the trials in my life. First, Charlene is the best thing that has happened. The kids got themselves a best friend and I got myself an angel. Next, YOU are one of the biggest reasons. For making the miracle of raising that USD $350,000 a reality. Previously, I had prayed so hard to raise that sum wanting so badly to give Charmaine a 50% chance of survival... Now, that half a million gives a whole new meaning to me and my family. With Charmaine's bone marrow not cleared even after completing 5 cycles of chemotherapy for the standard treatment regiment in Singapore, Charmaine's chances of surviving even under the mere 10%-20% chances in Singapore is bleak. Put it simply, if we hadnt raised that sum, the treatment in Singapore would be "to give more chemotherapy until Charmaine's bone marrow is cleared or to give more chemotherapy until Charmaine's body can no longer take it anymore". Hence, the first and foremost goal ahead is to get Charmaine's bone marrow to clear. Without clearing, there is nothing to talk about... no hope... nothing...

According to discussion with Dr Kushner, with 3F8 in MSKCC, the chances of clearing the bone marrow is more than 85%. One of the misconception I had before about 3F8 was that 3F8 is only administered if the child is cleared of any disease in the body. I checked with Dr Kushner and he said MSKCC uses 3F8 to treat the disease in bone marrow especially when it is difficult to clear the bone marrow of the cancer cells even after beating the body with numerous high doses chemotherapy. The question of when to start 3F8 infusion will be discussed after we get results of all the numerous tests done this week.

Saturday and Sunday were the most 'noraml' days in my life since god knows when. I didnt discuss much about the reality of having scans and tests scheduled daily for the whole of this week with Charmaine because I wanted her to be able to just enjoy the 2 carefree days happily. To Charmaine, those 2 days were pure happiness even without her speaking explicitly in words. Because, even to mommy me, those 2 days were just plain simple and easy.

I actually didnt realise how relaxed I was until the harsh reality of Monday set in. Sitting in the clinic, waiting for Charmaine's name to be called, I was numbed with unknowns, trying to fight the jet lag, coming up with questions to ask the doctor, figuring out the environment and keeping Charmaine feel safe... Even though we are international patients at MSKCC, it is nothing like the international patients in Singapore (Although much of the patients here have traveled distances to come to MSKCC). Back in NUH, services for international patients were admirable. Not because they are paying more. But each patient had a point of contact from their fellow country (or rather speaks in similar language, I didnt speak to everyone but based my assumptions on my observations) who would visit them and always appear besides them when they visit the clinic in NUH to assist them. It was this same sort of assistance that I had hope to receive upon arrival in MSKCC. Sadly, none.

I had to figure out where to go. I had to figure out what to do. I had to figure out what is what. It is intimidating, especially being the only asian in the room packed with Caucasians. Since this week is fully packed with the numerous scans and tests, it means we will be going to various departments at various levels and I have to figure out everything down to the elevator location all by myself while trying to calm my little girl. I am most certainly not hoping to receive special treatment but surely a short orientation tour around the hospital would help greatly. Sadly, none. Indeed, I had chosen this path voluntarily and is not allowed to complain. I am choosing to say out my fears aloud, in the hope that it would give me some much needed courage to plough forward.

One of the most striking differences here in New York is most of the kids we have seen living in Ronald MacDonald House do not wear a mask. The same goes for people in MSKCC. Almost none except for a couple of them wears mask in the hospital. The next shock came when we went in to the clinic, waiting for our turn to do a finger prick - for blood test. I had explained to Charmaine saying its her favourite finger prick, told her to choose a finger and that there was nothing to worry about. To our dismay, when we went in, the RN said they had to collect alot of blood to many tests and hence had to access her port instead. Upon hearing that, Charmaine broke out in tears and cried very loudly, clinging more tightly than even onto me, refusing to move. I was shocked too. I really hate to have explained the situation wrongly to Charmaine because I really hate to have her trust on me betrayed. And what transpired next was just sheer nightmare. In Singapore, to access the port, the nurses would apply a cream called emla (anesthetizing cream) on the port before they poke the needle. Over here, they said we are going to spread some ice coolant on the area and we can access the poke. There I was, given little reaction time to think and I had to decide for Charmaine. Gesh, it sucks. The only words that came out from my mouth was "dont you use emla?" They answered yes but that means you would have to wait for another hour. Charmaine was already very tired from jet lag, so was Jase waiting outside for more than 2hours already. I asked if the ice coolant really numbs the area, they said yes and so I said yes. What happened next was everyone's imagination. Charmaine fought hard, crying out aloud "mommy, mommy, mommy!!!" and gripped me so tightly that we couldnt spray on her skin. I, her mother, had to be the very person to restraint her down and allow the nurses to do the procedure on her.

The most tormenting thing throughout this journey is having to be the very devil to restraint our very own child for any procedures. It is one of the most painful experience ever. [It doesnt help even when one knows that whatever needs to be done is for the good of our own kid. At least, I feel this way each time. To witness your own child scream out in total fear, crying out for you to help her and yet you join forces with the other team in restrainting her down too... I cannot even begin to imagine what goes through the mind of every child having to go through all these painful procedures...] Will they understand? Or will they end up hating us? That reminds me of nurses and doctors. Even though the kids are not their own, it can still be daunting on these medical professionals. THANK YOU for being so strong. Whenever Charmaine cries out for mommy and just freezes up her body, I just cant control myself from crying... and when Charmaine sees me crying out too, she will cry even louder, saying, "I DONT WANT MOMMY TO CRY"! There I am, a nervous wreck, trying to stop crying, in order not to be the reason for Charmaine to cry harder and yet tears wont stop flowing seeing her struggle in fears.

As painful as it is, we completed the procedure and inserted the needle into her port-a-cath successfully, with the less than usual standard of 'steps' practiced in Singapore hospitals where port-a-cath access and de-access is seen as an very important task.

Next shock, do I want to leave the needle on her for the whole of the week. For people unaware of the port-a-cath care in Singapore, we are never allowed to leave the hospital or even venture out of the ward with the needle still inserted. They take great care in the needle and fear greatly for any risk of infection and believe that only nurses or medical professionals can take care of the port-a-cath with the needle carefully. So yes, another adjustment. After seeing how much Charmaine struggled, the RN adviced me to leave the needle on, I was there still numbed by the trauma of the poking of the needle and now, another decision. I wasnt quite sure what to say but decided to leave the needle on, while trying to adjust my mind from the Singapore practice. Gosh - thank goodness we left the needle on. Barely 5 mins after we walked out of the room, we were called in for more blood to be drawn. THANK GOD. Else Charmaine will have to be accessed again! No showering for Charmaine for this whole week with the needle. I am not going to risk her for anything. More shock to come, of course but I will leave it to the next time.

The general update from Dr Kushner is that he is rather concern for Charmaine's condition because the tumor has invaded her liver. In his own words, "Charmaine's disease is very large (meaning that her tumor was very big) and that liver is a very hard to treat area. It is an area where it is hard to eradicate the disease. There will be radiation for Charmaine 5 days after the first 3F8 infusion. Liver is an organ that is difficult to radiate and hence the concern too. We will most slightly treat Charmaine with another round of chemotherapy regardless of what the bone marrow results show and it will start on Monday 10th Aug. If bone marrow is not cleared, we will do another bone marrow biopsy after the 6th chemo - may do another round after 6th cycle if disease persist in bone marrow and start antibody treatment (3F8) after.".
It felt like a bombshell thrown onto me when I heard that the tumor site is an area of concern and worst of all, its difficult to treat, because its the first time I am hearing this.

I have to end this quick because we need to go to the hospital for her MIBG injection and CT scan soon.

Once again, thank you all for the prayers and blessing given unto us. THANK YOU all.
[My mind is now in a blur, having to figure out what to do after Charlene leaves next wednesday...]

Warmest Regards,
Cyn mommy

27 comments:

Kao Bei Gia said...

U are really very strong Jolene. Charmaine is so lucky to have a great mother like u. All the best!

susanteh said...

Cynthia, take care. I really admire your courage and the love you have for your beautiful children. Things will be tough - but stay strong and know that many of us are praying for you.

Stay strong little ones!

Jessica said...

Stay strong Cynthia! I really couldn't help but admire you, for your courage. Please take care and all the best to you!

Catz said...

Sorry that you have such a creep of an ex-husband! Hope you have a nice time in NYC whenever you can! Take care and know that there are a lot of people praying and hoping for you!

Magdalene said...

Hi, Cyhthia
Stay Strong n be brave!!
As I read ur post, I m glad that u had left such a man!! How can he add on problems to u knowing his own daughter is so seriously sick n U R HANDLING ALONE!!!
Take care..

Inix said...

We'll all pray for you. You've made thus far, and you will make it home.

Laura said...

Hi Cynthia!

I had just found out about your daughter Charmaine since somebody on their youtube video posted a link to the site.

I have to say your such a strong person and it's evident what a loving mother you are.

I'm praying for the both of you!

twin said...

Cyn mummy, U r really strong. I feel so sad n sorry for you having such an ex-husband. Having to know his child is so sick n many pple are there to help n encourage, yet he is disgusting enuf to add xtra problem for you.

Stay strong always n think of positive way. All the best!

Savyon n Sherell said...

Stay strong Cyn, you never fail to amaze me n Sherry for the things you have endured and yet coping it. Savyon will be rooting for the return of Char in good health. All the best! Stay strong and all the best!
Savyon's Dad

Savyon n Sherell said...

Cynthia, do stay strong and focus Char n Jase will need your support likewise you need theirs. Savyon will be delighted if he sees Char again. All the best Char!!!
Regards
Savyon's Dad.

Jing..xx said...

Take care! Keeping you in my prayers!

Roxanne said...
This comment has been removed by the author.
Roxanne said...

Dear Cynthia, Stay brave and strong. It pains me to hear of the recent ordeals. But even at the bleakest moment, the Star of Hope still shines. Never Never lose hope. Please continue to have faith!!

We are all behind you!

Mic said...

U r really very strong.... Sty strong and dun give up no matter what... Having faith and hope in urself will ultimately give faith and hope to charmaine... she is fighting.. u must fight together with her!!!! JIAYOU!

totoro said...

Dear Cynthia,

Remember you are now the heroine for all the mommies with sick kids. You are showing a good example of how one can succeed with just one simple aim - To save a daughter life !
Many mommies are reading your blog everyday to learn from you. I cried when i read your blog but i keep coming back to remind myself to be strong like you.
It is okay to cry with Princess, she will realise how much you love her.
Please take good care and let us know if you need any help.

Chris said...

Hi Cyn

How's Charmaine today? I hope no more needle poking. We will be praying for Charmaine, she will get better, she is strong.

Eve said...

Hi Cyn,

Wonder if you mum or dad can help?

know they may be old but if they are well enough to handle Jase when you are looking after Charmaine - that would help to ease your responsibilities a little?

love_is_all_around said...

Hi Cyn,

You are a very strong mother! Very proud of you! Is very hard not to cry when you see your princess in pain and you can't do much. Please do get as much rest when the kids are sleeping. You need your health to fight together with little Charmaine! :)

All the best!!!


Sorry but I need to say this....

To the ex-husband,
Please! If you are reading little Charmaine's blog.

If you still have a PIECE OF YOUR HUMAN HEART, help little Charmaine, she needs her mother's attention and concentration in nursing her little body back to health. Don't snatch away her beloved mother's concentration!

Maggie said...

I am so sorry to hear of all the things U have to go through. Everyday U and your girl are in my thoughts. I hope god will answer our prayers. Kiss Charmaine for me. Tell her that I feel she is even a braver person than most adults

kgkool said...

Told u so. It's only going to get more painful.

Chris said...

Cynthia,

Charmaine is going to get better, the pain is only temporary. She is going to come back strong and healthy. Will be praying for her.

Princess you going to fight the monster, you are a very brave little princess, you will win this battle

Juliet said...

Hi dear Cyn,

I thank God that you have arrived NY safely. I'm really sorry to hear about the craziness you have to go through even before your trip here.

I will be praying for Charmaine.

HUGS...Jas

yuene said...
This comment has been removed by the author.
tabby said...

Hi Jolene,your post have greatly touched me,and definitely all readers.The dilemma of choosing the best for your child and versus the pain charmaine has to go thru.You are the strongest person that i ever come across.Jolene and little charmaine,fight through the battle and i believe you can do it. =)You are in my prayers.

none said...

Dear Cynthia, you have made it this far. Just a few months ago, this would have seemed so unsurmountable, but you (with your angels by your side) have overcome the odds to make it to NYC. Hang in there, take it one day at a time, and be strong for your princess. Praying for all of you.

Jolene said...

Hi Kao Bei Gia & tabby,

Cynthia is Charmaine's strong and feisty mummy. I'm only the godma. =)

Advocateur said...

Hi Cynthia Mommy, pls steer clear of your ex husband; i.e. avoid mentioning him (not worth a mention at all in the first place)in your blog. You have enough problems on your plate. He has done enough damage and the last thing that the readers want is to see you getting into trouble becoz of him.

I believe God is answering our prayers and He will take good care of Charmaine. She's a gem and will definitely recover!

Take care Cynthia Mommy and God Bless!

 
Feisty Princess Charmaine. Design by Pocket