We are in NYC safe and sound!

Thank you everyone for the blessings, we have finally reached NYC safe and sound and the kids have settled in much more easily than the previous time. In fact, I think they are doing a much better job than me at overcoming the jet lag.

The internet connection at RMDH has been down since Friday after I gotten my password...

As I was joking with Jolene and Charlene, we are eating and drinking like an American, now we just NEED to SLEEP like an American. I am the one having the greatest difficulty adjusting! There were a few times when the girls called me and I had NO IDEA what I said to them. Sleep talking. In fact, I had no idea it was early evening or early morning and which day it was. Everything is very disorientated. And I can barely hold a decent conversation with anyone.

I like to say a BIG THANK YOU to ALL the SIA crew onboard SQ 22, 26 Aug 2010. ALL OF YOU HAVE MADE our flight from Singapore to New York so enjoyable! I've never seen the kids enjoy themselves this much. THANK YOU! The flight felt like heaven on earth compared to our previous nightmarish trip where the kids were both running high fevers and vomiting and was so sick.

The wonderful flight, the most caring ground crew, and the familiar faces made our return so much more sweeter.

THANK YOU Stephanie, Iris and all the SIA ladies at Newwark Airport! THANK YOU!
Without you ladies, I could never have safely reached NYC and most probably accomplish nothing at all on my own. Whenever people assure me how strong and brave I am as a mother, I honestly dont think so.

As the song goes, YOU are the wind beneath my wings...
I have been blessed with many, many, many silently supporting me in everyway... THANK YOU!

Also like to say a word of Thanks to Mr Chris!

We had a few hiccups here and there after we landed. I misplaced my phone barely a few hours after we landed and was devastated. But thankfully, I dropped it in Stephanie's car. If you have texted me and hadnt hear back from me, its because I hadnt gotten my phone back yet but we are fine. :-)

Charmaine's knee pain started to act up almost immediately after we landed and it got much worse on Friday. The swelling also looked like it got bigger. I had to literally force her not to walk and she got very upset and in her own words, "I am feeling very grumpy now".

I got pretty worried, and prayed fervently. Thankfully, our prayers are heard. Charmaine's knee pain finally subsided on Sunday night. :-)

Yesterday on Monday, we were supposed to do her MRI without anesthesia and as expected, Charmaine couldnt go through it. She was freaked out and cried big time.

We have another MRI with GA scheduled next week. Today, she will get her MIBG injection and on Wednesday, she will have her MIBG scan, bone marrow biopsies done on Thursday.

The feeling is so surreal. Alot of the NB kids' blogs I've been following in the past 6 months dilligently are also in NYC receiving treatment. I know them like they are family, but they dont know me. And I am still in my zonked out mode so I didnt make any introductions either. But to see them face to face is so heartwarming and yet somewhat painful.

The entire crew at RMDH also gave us a very warm welcome. Many things have changed over the last 6 months. I shall update another day.

We have to get ready to go MSKCC soon so I cant type much.

Take care everyone! We miss you all!

Love,
Cyn mommy

Onboard now, take good care everyone!

Dear all,

Thank you everyone for your prayers! Charmaine is
much better after a switch of antibiotics...

We are taking off in a couple of mins!

Just wanted to tell everyone char is much better and we are packed with tons of antibiotics. Pls continue to keep us
in your prayers!

Love,
cyn

We NEED prayers now.

Charmaine's knee is acting weird again! Oh how I hate this!!!

She started limping last night and is still in some pain... I'm waiting for Dr Aung to call me back as to whether we fly tmr or not...

I would really hate to end up in NY hospital straight after we land like what happened when we returned home... Argh!!!

It will be a mess because I have no one to look after Jase! Damn I hate this. Hate that I'm a nervous wreck now.

But please pray that charmaine's pain will disappear
miraculously and please pray that we will proceed as planned with no glitches...

My heart cannot take it anymore. I will totally crumble seeing her in pain...

Love,
Cyn

Leaving in 2 days...

Hi all,

We are OKAY. Lots of things happened last week, both good things and some disappointing things but we are good.

Charmaine was supposed to have another MRI scan last thursday but it was well, full of hiccups and I eventually made the decision to cancel it.

Charmaine is eating well and very excited about returning to NYC and so is Jase.

I perpetually feel busy but certainly doesnt feel like I've accomplished much at all. Our departure date keeps getting changed over and over again but it seems like we should be leaving on Thursday.

I'm so sorry for the lack of updates... I know I must have made everyone worried once again...

My next post will most probably be from NYC. In the meantime, may everyone be blessed with good health and happiness!


Love,
Cyn mommy

Happy Birthday Singapore!

YES! Charmaine and her 3 warrior friends gotta watch NDP Flypast and Fireworks THANKS TO

The Kind Soul ~ who contacted NDP Committee
I wish I knew who you are, nonetheless, THANK YOU from the bottom of our hearts, especially for the mommies and daddies who saw the excitement and happiness on our little ones' faces.

NDP Fireworks Committee ~
Chairman Sean Tan
Soon Mong
Shane Mok
Harry

Branding, Publicity and Media Engagement Committe ~
William
Sheng Yang

Marina Bay Sands ~
Serena

Volunteers ~
Rachel and Family
Thank you for volunteering to take care of us.


As Charmaine suddenly complains of tummy pain, I am not able to write a full entry so I shall just post an extract of the email I wrote last night.

Hello Sean, William, Soon Mong, Sheng Yang and Shane,

WOW - that was impressive fireworks! Beautiful and the kids were just in awe! I wish I had captured those moments but I was 'in charge' of taking the fireworks pictures for my little bosses. :-) Haha.

All the other mommies and daddies are also very touched and thankful that you have put this together specially for our little ones! 2 of the kiddos, Gabriel Liam and Janelle actually has an immune below 1 which in medical terms means no immunity and also their platelets are 30 on Friday - anything lower than 20 means an immediate transfusion. (And the trend is such that it will go lower instead of higher)

BUT THEY ALL TURNED UP! YEAH!

Because its something that we wouldnt miss for anything else! An experience so priceless and a memory so special and beautiful. Frankly, I am probably more happy than anyone else. Charmaine has been blessed with many angels in her life but unfortunately not many others are as lucky as her. Hence, I am just SO GLAD that her friends got the chance to experience this along with her! And all these coordinated and made possible within a span of less than 24hrs! You guys are fantastic! I dont think I can put down adequately in words just how much this means to us.

My 2 little ones are exhausted by the time we got into our taxi but I heard Janelle and her sister were just talking all the way non stop until close to their bed time at midnight. :-) I'm sure when Charmaine and Jase wakes up tomorrow, they are going to start talking non stop abt it too. :-)

I want to apologise for causing quite a bit of hoo-ha with my last minute request of allowing Gabriel Loh and Gabriel Liam's family to cut queue for the taxi. I'm so sorry, I should have thought of that earlier and mention it beforehand to you guys rather than making such a last mintue request. SORRY.

Nonetheless, THANK YOU to Soon Mong, Harry and Sheng Yang for rushing here and there and making countless phonecalls to coordinate to my last minute request. YOU GUYS DID IT AGAIN. :-) Gabriel Loh and Gabriel Liam were allowed to cut the queue after sometime and we all made it home safe and sound!

And I realised that I made Sheng Yang's entire family volunteer to take care of us! They took such great care of us I literally mistook them for trained volunteers! THANK YOU Rachel! Charmaine loves YOU! :-) Without Rachel and family taking care of us, I would definitely be overwhelmed.

Also, not forgetting sweet Serena from MBS! She is so thoughtful in our needs despite our last minute addition and took extra care to make sure we didnt have to stand under the hot sun to queue for long and also made sure we were escorted off before everyone else once the parade ended. Please convey our appreciation to her.

And this is wonderful hospitality, Sean! Definitely comparable to New York! I was very impressed with how children with cancer were taken care of in New York when we were there. (They had police escort for every trip planned for the kids, even if its just a movie premier and our most memorable experience was this once where the police officer arrived late and in order to make up for lost time, he literally sounded his siren and bit every traffic light down the entire trip. Did I mention him honking all the way? Haha.) AND YOU GUYS WERE JUST AS AWESOME, IF NOT MORE! I am almost certain that they wouldnt be able to fix up something like this in 24hrs. :-) SO KUDOS to everyone of you!

We are simple average folks, fighting a different battle. And tonight, we felt like royalties. :-)

For that few hours, your show and hard work took our minds off the battle we are all fighting. Its just us celebrating Singapore's birthday!

Please pardon my long windedness. Keeping short and sweet isnt exactly my forte if you guys read Charmaine's blog. :p
But can anyone sense my happiness here? YES, still so happy and still so excited!

Please do take heart that whatever you have done for us and our little ones will be remembered for a long long time. Maybe some of the little ones may forget when they grow older but most certainly, us mommies and daddies will always look back to this treasured memory fondly and will not forget your kindness, your big heart, and the fantastic show you have put up tonight!

What may seem to you as a 'little gesture' is a huge gift to us, so once again, THANK YOU. :-)

Charmaine, Jase and myself will be flying back to New York by end of the month for further treatments not available in Singapore and I am going to have to switch to the 'mad preparation mode' for the next 2 weeks to try and settle everything in time. Hence, I may not be able to keep in touch as much as I want to. And probably, I may not get a chance to meet up with some of you personally to say a word of THANKS so please forgive me.

Tonight's excitement and happiness has most certainly given me the boost I so needed to recharge my mind and prepare for our next battle ahead. I was actually rather drained from these few months of treatments and am very scared to return back to New York all alone, with a much more weaker body of Charmaine. I dont even have any idea of what her treatment in New York is going to be, unlike last year where I had a somewhat clear direction and plan. Tonight miraculously brought back my determination and focus. Not sure if its the fireworks after-effects or just the love we received to remind me of how wonderful life is. But something did it and I'm all ready for tomorrow!

I cant speak for others but my heart tells me that if I could miraculously recharge my mind tonight, I'm sure the other mommies and daddies also had their little reboot in their own ways through your gift and show. :-)

Alright, I think I better end it soon. :-)

May each one of you finally get your well-deserved rest after all these months of hard work. And may all of you be blessed with abundant happiness and great health. (Because you all truly deserved it!)

THANK YOU ALL!

Love,
Cynthia

I also like to take this opportunity to thank a few other people who went the extra miles to call and enquire around to ensure that Charmaine will get a chance to view the fireworks she missed so much...

~ Chwee Teng for so kindly offering to pay for a hotel room for us but I have to humbly reject because I didnt want money to be spent unneccessarily. THANK YOU so much! I know I must have made you anxious for awhile because you so desperately wanted to help fulfil Charmaine's wish. I cannot say enough thanks. :-)

~ Ronnie Ang for contacting the various hotels to check if they can accomodate Charmaine's wish. You are an angel to us because frankly with Charmaine being inpatient, it was rather tough trying to put together something. Without the presence of big hearted people like you, the experience last night would not have been possible. (I almost wonder if you were the one who called up NDP Committe!)

~ Mandarin Oriental Hotel, Miss Usha Brockmann, Marketing Manager and Mr Amit Majumder, Front Office Manager
THANK YOU SO MUCH for putting in so much effort to try and accommodate to our every request. I appreciate your kindness and would like to say sorry that we could only choose one venue. Nonetheless, we are truly amazed and very thankful.

~ Lilin and Husband
THANK YOU so much for offering your house to us. I'm sorry that we couldnt go but its really a pleasure to have made a new friend in you.


I am sure that there are many other kind souls out there that has helped in one way or another to make this possible for Charmaine, Janelle, Gabriel Liam and Gabriel Low. I may never know who you are individually but your contribution and 'little gestures' have touched our lives and brought on the biggest smiles on the kids' faces.

SO THANK YOU TO ALL OF YOU! WE HAD A BLAST!


Love,

Cyn mommy,
on behalf of all of us who benefited through all of your kindness.

Day 3 of chemo but spirits are good!

Hi everyone,

We are still inpatient with 3 more days of chemo to go. Considering that we have been inpatient for coming close to 2 weeks with a 24hrs break on Tuesday, Charmaine is definitely being a champ! She is happy, she is not walking, bouncing and dancing like she always does because of her knee problem but her cast is off totally and she has started to walk without limping! So yeah, that's great!

We are all happy with her progress but cautious in allowing her to roam freely like others 5 yr olds as her knee needs rest and time to heal. However, we don't want her to be on constant bed rest either, as not moving will weaken her leg muscles significantly.

Just like the previous cycles, Charmaine complained of knee/leg pain on her Left leg yesterday 5mins into infusion... It's always something that freaks me out and we are definitely watching her left leg very closely... Sigh...

Anyway, we have gotten confirmation from our doctor in NY to start making preparation to head back to NY. We are hoping to fly off once she recovers from this chemo which usually takes about 3 weeks, pending no surprises.

As such, I'm going to be madly busy with all the logistics, from getting air tickets to arranging for accomodation, getting doctor's appointments and getting Jase out of school, trying to get Jase a primary one slot before we fly off and not to mention the packing!!!

Both Charlene and Jolene have been extremely busy with their work commitments and life, and with me concentrating on getting our trip organized, please do pardon us if we missed out in email replies or is slow with updates. Please do not be alarmed if you don't see much updates from me because I have about 21 days to get air tickets, lodging, hospital appts in NY and not to mention all the packing settled! On top of that, we still have follow up outpatient appts here in KKH for Ortho Pedic, Infections Disease, Onco and numerous tests such as hearing test, echo, dental and more MRI done! Gosh, I need to breathe!

Anyway, if you do not hear from me, it's most slightly NO NEWS IS GOOD NEWS from us!

Please continue to keep your prayers coming in. We need God's blessings to keep Charmaine fever free and infections free and have good immunity for us to fly off safely! Please also pray that she doesn't get the horrible diarrhea from the chemo and that the chemo is doing it's job in killing whatever residual hidden in the tiny body of hers!

I also probably need tons of prayers for myself so that I will find the strength I need to travel back to NYC with both my kids alone. This time around, I'm more scared than ever...

Thank you everyone!
Have everyone be blessed with a wonderful long weekend and stay happy and healthy as always!

Love,
Cyn mommy

Charmaine's wish to view fireworks on NDP...

Just a quick update...

Charmaine and I were discharged yesterday late at night (Monday), and is converted to Oral antibiotics for 6 weeks.

The one day discharge is to give Charmaine a break from hospital and an important day for me to run all my errands, especially Pri 1 registration for Jase.

Charmaine's right knee is definitely much better, her swelling has gone down but not totally normal yet. Initially Dr A wanted Charmaine to keep her cast on for another 2 weeks but after discussing with Dr Aung, Charmaine is allowed to remove her cast for short periods each day.

Charmaine is very happy to be home with Jase. I am constantly reminding her that we have to readmit on Wednesday but she seems to be taking the news very well. (I almost suspect if it actually registered in her head or not. We shall see!) In the meantime, Charmaine has not started walking yet because some of the doctors seemed more keen to keep her immobilised for a longer period.

Anyway, the plan is that we will readmit tomorrow morning (Wednesday) for another round of chemo while we await news from MSKCC.

Please pray for Charmaine to go through her next round of chemo (#13 cycle) smoothly and safely. And more importantly, please pray that her immunity will be able to take another hit from the chemo drugs and will remain strong or bounce back quick, so that she doesnt get any other sort of whatever infections or fever. Please also pray that we will be blessed with a doctor who can actually diagnose Charmaine's knee problem more conclusively so that we can have a treatment that will target the problem directly, rather than just broad coverage. Please also pray that Charmaine's pain will subside entirely.

Charmaine loves fireworks and we never missed any fireworks before Charmaine was diagnosed with Neuroblastoma. However, it has been more than one and a half years since she last saw fireworks. Last Saturday, we heard the sound of fireworks from KKH Ward 75 but couldnt see anything and she got a little disappointed.

So, I am writing here, hoping that maybe one of you kind souls here can do some special arrangements and actually allow Charmaine along with a few of her other fellow warrior friends to be able to see the National Day Parade away from the crowds and yet still be mesmerized by the fireworks they all love.

We will be admitted for a 5 days chemo ending Sunday, and I am trying to figure out if there's anything I can do to make Charmaine's wish of seeing fireworks be a reality. Because of Charmaine's knee, she is rather immobile and I do not feel comfortable juggling with crowds... so if anyone of you out here has a better suggestion for us, PLEASE WRITE TO ME. I would be very grateful.

In New York , Ronald MacDonald House is able to get companies to allow all the cancer kids to literally view all the parades and shows and countdowns right besides the events in the offices, while away from crowds and germs... However, in Singapore, kids here doesnt seem to have this luxury...

I'm taking the liberty here to ask and hopefully, this year, Charmaine and her fellow warrior friends will get lucky...

THANK YOU ALL.

Best Regards,
Cyn mommy