Wednesday, September 30, 2009
Before I forget (which is so terrible but yet, my brain just doesnt seem to be able to keep that much things anymore) and as time passes by me so quickly... I need to write this THANK YOU note to some of the kindest souls living amongst us...
From the day our flight took off...
1) The entire SIA crew, including the Captain! --- That was definitely the best first flying experience any mother could ever ask for, for their kids!
2) Barby and all the ground crew --- whom even rushed to buy MacDonald for Jase and Charmaine because they were hungry. And even visited us in RMH!
3) Ray and Orathai --- for so kindly picking us up at the airport and rushing to buy dinner and grocery for us! Amidst all the prep - I had actually forgotten toothpaste and you had saved our day!
4) Iris and family --- TOO MUCH HELP! I cant even begin to name one!
5) Chorina --- for putting in so much effort in helping and introducing dear Steph into our lives!
6) Stephanie --- The list is starting to get too long as well!
7) Vivian --- for the yummy chicken curry and prata. The kiddos love it!
8) Auntie Jasmine and Auntie Vivienne ---J for your HEADSTAND (haha) and the wonderful beauty services provided ;-) and Auntie Whee Whee for the eyeliner lessons! Above all, for the wonderful 9 days spent with us when I needed someone most...
9) Li Ching --- for offering assistance and being worried!
10) George and Lisa Westberry and not forgetting Elizabeth --- for being a part of Charmaine' s treatment in NYC! From room-mates to life-long friends...
11) Beatrice and Laura --- for sharing your experiences with me
12) Auntie Fanny and Sandra --- Folks I know I can depend on!
13) Patty --- for being one of the first to prepare me on what to expect!
16) Cheryl and family and all the mummies who helped! --- We receive all your beautiful bags and I am using them everyday!
17) Amelia, Huiping and Poh Kim and Auntie Meiling --- YES, we received your cards and love!
18 Chew Lian and family --- I owe you a great deal! Your CDs, your shoes... the never ending gifts coming along our way... THANK YOU!
19) Clara --- for the all so important medical supplies from NUH!
20) All the well-wishers whom wrote touching words and prayed so hard for my entire family, especially for Charmaine.
The list will go on and on... I will keep updating it as time goes by...
This is a note to myself more than anything. I dont want to forget all the people, whether its due to time, or due to my failing memory... I want to remember all of you when I grow old... Whether I can or cannot repay this gratitude... the least I can do is to remember the kind deeds so selflessly showered upon me and my family when I needed help most...
The brain is such an interesting mechanism... almost an irony... I notice myself penning down words during the most painful times in my life and never once during the most enjoyable... Its like I can write so effortlessly and let the tears flow... I remembered once I had promised myself to write down how happy I had felt for that day... however, I just couldnt. The words couldnt gel... I simply wasnt in the mood to write...
So when I flip those pages now... I only read of those tough times and those trying days...
And thankfully for Jolene and Charlene... this story book of Charmaine gets to be filled up with all the fun and laughters and beautiful memories that I will get to read and re-read...
Its getting late now... I shall fill everyone in on our baking activity next time round!
May eveyone be blessed with happiness and health, as always!
Arsenal fundraising on ourfeistyprincess
Arsenal fundraising on arsenalsingapore.com
There was a good turn out for the auction held at their club and a sum of $2800 has been raised from the 2 donated collectibles. As such $1400 has been raised for our little Charmaine.
Thank you to:
- Elvin (Donor of signed Arsenal shirt)
- Al (Donor of signed Arsenal Singapore cap)
- Jin Yan (Arsenal Singapore President and winning bidder for the cap)
- Tim (Winning bidder for the signed shirt)
- Kevin (VP of Arsenal Singapore for liaising and communicating with us)
It was really nice meeting all of you that night.
Monday, September 28, 2009
And these are not all!
Auntie Chew Lian must be wondering why our list is endless in the food section and thank youuuuuu for helping us!!
They have completed Day 7 of Accutane and Charmaine had nose bleed which is part of the expected effects of the drug. It causes your body to be dry.
Other than that, I believe, they are, baking cookies right now in the cosy home of Steph. All the kind hands that had reached out for them, thank you!!
Wednesday, September 23, 2009
Top pictures shows how long and thick Charmaine's hair and eyelashes is now =D
And I took JaseJase photo just for Godma Precious Moment kodak shot!
Thanks everyone for the prayers. charmaine's good with Accutane and it is good news!
Monday, September 21, 2009
Accutane provides serious emotional stirs up, and Charmaine is expected to be grumpier, and throwing alot of tantrums when this drug is added to her. Having her eating it, will also be one of the challenges expected.
This coming week, she will be doing her Bone Marrow biopsy for research purposes, and hope her results will help the doctors to understand more on how her medication has been working on.
The kids have been fine after Charmaine is off from 3F8. She has counted and kept emphasizing, how many times she has gone through this painful drug. Auntie Iris had been a great help over there, bringing the kids and Cyn Mommy out and we are so glad to have her. Not forgetting, the much needed local helps there too!
Weather is turning cold and it makes a perfect time to head to New York.
Friday, September 18, 2009
Called her this morning, and boy, is she full of naughty plots:
- to poke WK and my butts
- to flush us down the toilet
- put us up the hot air balloon
- throw us at the skating rinks
you name it, she has thought of it all.
Yes, God ma Jolene and Uncle KH, u all are spared from the torture. This morning, she decided only WK korkor and Charlene jiejie to be punished!
Then, Jase jase joined in and listed his Brightkids friends (teo chew meng - yes he calls him by the surname as well i dunno why?!, weiyang etcetc that I cant catch all), and of course Charmaine has pulled up the handsome Savron, the pretty Skylar, in her battalion too. So what can I do? I transformed into the motorbot, that got shot down by Cyn Mommy even larger motorbot and eventually I have to lose... haha...else, I will get a loud "hmphf" from Charmaine and with her "yng yng" and all spread on my face.
When asked her how she is feeling, she said she is fine. "But I heard u crying that day wor" and she is embarrassed. Charmaine has a very strong character from her mom. She doesnt like to show her weakness in front of others. So she commanded me never to hear her cry again. (else, yeah, the same "yng yng" treatment will be thrown down to me)
And then she goes happily saying..
"U know ah, the 3F8, I do so many times already...." and suddenly changes her topic "this Jase jase ah, everytime touch my face and kiss me when i talking" Haha!
While I never got to know what she want to say on the 3F8, it pretty much amuses me!
Yes, all in all, the kiddos are back in shape, and thanks for everyone prayers that today, is a much better one for them.
Cyn's internet is down, so no skype photos, no msn photos for this period of time.
Love all, Charlene
Thursday, September 17, 2009
Today is hellish =( She experienced alot of pain, abt 20mins and they had to increase the Dilaudid to 4 doses. As such, she has been drowsy since. Vomited again. Couldn't keep her anti vomit pill either. Hasn't eaten. Drank only sips. And still suffering from pain on both legs now. Yesterday was slightly better. But today was just bad.
SMS 0911 (SGTime)
Legs still painful. but she's hungry. Just order food. Hopefully she can keep it in.
Somehow, the photos taken from Skype always fail to reveal themselves in the folder that they were meant to be in till the next Skype session. Better post all of them here before my laptop threatens to commit hara-kiri.
Sometime in August…
Each time they call, they would say,
"Godma Jolene I want to see you on the computer."
Wherever they want to go, the camera and laptop would follow, even right down to under the table.
[This is supposed to be a gif file but I dunno why the animation isn't working here.]
Ok so these are the 2 photos making up the gif
Now you see me...
Now you dun...
Charmaine can even go to the toilet and holler,
"Can you see me? I'm in the toilet!"
Sometime in September…
Loving kor kor and mei mei
On the above picture:
- Usually we don't use the headphones but the static sound was quite bad that day and so cyn mummy, Charmaine and Jase had to take turns to put on the headphones.
- Jase is really good at racing and he was showing off that he had won the race... yet again.
- Whenever it was time to go to the hospital, Charmaine would excitedly run away to pick her outfit for the day and after changing would parade in front of the webcam to ask if the outfit she chose was nice.
On the above picture:
- The kids enjoy making funny faces, especially so when Uncle/ Godpa kh squeezed into the picture. Why did they scold Uncle/ Godpa notti? Coz I told them that my comp was going to spoil soon and Charmaine hollered, "Ask Uncle Kehang buy for you new computer." When he said no, she started scolding him notti. Haha...
- When cyn and I wanna have a real talk, the kids would always budge in to disturb.
- Jase emjoys making sad faces for fun.
On the above picture:
- Charmaine would always spend more time skyping while Jase kor kor would run away and probably play his racing game.
- She had a pretty hairband on that day and she was very eager to show it.
- She started eating porridge in front of me and I asked jokingly, "Godma hungry. Can give me some porridge?" She said, "Wait huh, I bring the porridge for you to eat ok?" After that, she carefully carried the half full bowl in front of the camera.
Charmaine looks so cute and innocent here
Jase is my Precious Moments boy boy
Just in case the gif file doesn't work, here are the shots:
Monday, September 14, 2009
Here's Charmaine's schedule in a nutshell:
1) 4th round 3F8 from 9/11/09 to 13/11/09
2) Accutane (which is oral).
3) Bone marrow biospy in Dec 2009 after 4th round of 3F8 (no fixed date yet)
4) 5th round 3F8 from 11/1/10 to 15/1/10.
5) Accutane #5
6) Accutane #6
7) Bone marrow biopsy in April 2010.
The more 3F8 for Charmaine, the better it is for her. Let's pray that Charmaine's *HAMA does not develop until after the 8th or 9th round of 3F8.
Her schedule is once again, tentative, depending on everything else that matters most.
But hey, the schedule looks good for a good Xmas trip!!! =D
I shall ask for some selfish prayers that... there would be no official trips in December and that my leave would be approved!
Good nite to all angels and I will try to update again tmr.
Edited to add:
0800 (SG Time)
It was yet another tough day for Cyn Mommy and Princess. Monday of each treatment round, will be the worst, as a parent of neuroblastoma had told Cyn Mommy. It never get easier, it seems.
Charmaine has just took her medication 5 mins ago. Her treatment was around 12-2am (SG Time) and she only managed to sleep 3 hours after the painkiller was given to her. Breathing was much worse and all types of oxygen masks were given to her today. It was worse than Round 1, but Cyn mommy seemed to be calmer than the first. Strong!
There was a boy that was nearly lost, in his third round, and another girl, who had the doctors and nurses sent scrambling to her ward.
Do pray for these little warriors too =D
What was Jase doing then?
While entertaining himself, he had constantly been asking Cyn Mommy, do you need any help?
I miss them... so.. I am on waitlist! whee~
Edited to add nuggets of information:
What is HAMA?
HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from the white blood cells of a mouse. This means that 3F8 looks different from a human antibody, and thus patients will eventually form antibodies (HAMA) against 3F8. Once a patient has developed HAMA, 3F8 treatments no longer effective because the HAMA blocks the 3F8 from getting to neuroblastoma cells. If the patient has received the desired amount of 3F8 (see next question for further information) by the time HAMA has developed, then treatment with 3F8 will be discontinued. However, if the patient has not yet received the desired amount, it is possible that HAMA may recede, and in that case we can resume 3F8 treatments. We conduct a blood test for HAMA usually one to two weeks after each round of 3F8 infusions. Patients with HAMA usually do not have pain or other side effects from 3F8 treatment.
Is HAMA good or bad?
HAMA is a positive sign in that it may mean the patient is developing an immune response against the neuroblastoma. However, when HAMA develops before the patient has received the usual 400 mg/m2 of 3F8 (two to four cycles), it may interrupt treatment. (As noted above, once HAMA is present, the 3F8 treatment is no longer effective.) Once HAMA has receded, treatment can resume. Most patients who have received chemotherapy only a short time before 3F8 treatment do not produce HAMA because part of their immune system is too suppressed. In these cases, 3F8 treatment will usually continue for up to two years. The aim of our protocols is to give repeated treatments with 3F8 until HAMA is made, because we believe that approach yields the best chances for cure. We continue to study HAMA to get a better understanding of how it may hurt or benefit patients in the long term.
Thursday, September 10, 2009
We like to thank Arsenal Singapore, for coming up to arrange the next fund raising event for Princess Charmaine, to ensure her ongoing treatments in New York, as well as the expenses that will arise, be it living, or medical.
The official supporters’ club for Arsenal in Singapore will be holding a special auction this Saturday, 12 September, 9pm, at the club’s official hangout, Modesto’s at Elizabeth Hotel. 50% of all proceeds raised will be donated towards the care of our princess, who is in New York undergoing treatment, and the remaining proceeds will go towards the club’s community funds. Arsenal Singapore is appealing to all Arsenal fans in Singapore to show their support for these charitable causes. The auction is open to all members of public.
1. A signed Arsenal home shirt from the 2005 FA Cup winning team which includes signatures from Arsenal legends such as Patrick Vieira, Thierry Henry, Dennis Bergkamp, Robert Pires and Ray Parlour. The shirt comes with a certificate of authenticity from Arsenal FC.
2. An Arsenal Singapore cap signed by current Arsenal and Netherlands forward Robin van Persie. It comes with the message “Best Wishes RvP” and was received personally from the 26-year-old Dutchman at the end of last season when Arsenal Singapore was present at the Emirates Stadium to present him with Arsenal Singapore's Player of the Season award.
More information can be found on the Arsenal Singapore website: www.arsenalsingapore.comThank you Elvin, Kevin and team in ensuring the lives of Jase, Charmaine and Cynthia are smoother one.
Lucky charms on Charmaine, her HAMA is tested negative so her second round of 3F8 will start soon. Her first, was a nightmare for all of us, let's pray her second will be alright.
And yes,a little thanks from Charmaine, here's her cheeky face.
Monday, September 7, 2009
Its been awhile, I hope everyone is doing well and being happy!
Firstly, I like to update everyone of Charmaine's progress to date. Char has finally completed all her 14 sessions of radiotherapy safely, last day being Wednesday. Thank you all for the blessings and prayers because I am certain they contributed to make it a smooth sailing one for my feisty princess. She experienced some mild diarrhea and nausea over the last weekend and that was all. I couldnt be more glad because I had imagined it to be as bad as chemo. Thankfully, I am just overly paraniod. The only reminder for little Char and us are the 5 permanent tattoos, which is really a price I am willing to pay for keeping Char alive and happy, experiencing life with me.
Over the course of the 7 days, she had gotten into the routine herself, knowing that we have to go into MSKCC for her 'white medicine' - which is really the anesthesia drug... For some peculiar reason, she would let out a few cries whenever they inject the 'white medicine' into her port-a-cath. When I asked her why, she replied that the medicine tasted sour and she dont like it. I dont quite understand how is it she can taste the medication which is injected into her port... but I figure its probably her way of describing that she doesnt like it... Even the toughest challenge of not allowing her to eat was miraculously manageable. The medical staff made it easier for us too, scheduling her first sessions at 7.30am in the morning and afternoon sessions at 1pm daily. When I wheeled the kids in the morning at 6:45am , they were still asleep... after we were done with the morning session, they would go back and fall asleep again.... Before I know it, its time to go in for afternoon session. Thank you to the understanding staff! On wednesday, I told her its officially our last session and last day, she was just so excited! Kept hurrying me to bring her into the hospital after we returned from that day's morning session. The nurse who carried her out of the RT room said when she woke up from the anethesia, she waved goodbye to everyone in the room. That was another pleasant surprise to me! Usually, she would be terrified not seeing me. Its just one of the signs to tell me that I have aged and the kiddos have grown... (I am not complaining though!)
Time flies! Its been a month since we arrived in New York! Amidst all the initial fears of not knowing anyone, difficulty in getting meals, commuting around, and just being alone... I survived. Or rather, we survived! Auntie Jasmine and Vivienne came just when I needed them most. I cannot imagine what a nervous wreck I would be if not for them. When Char developed a fever and we had to rush her to Urgent Care, they didnt panick and that was the biggest reason why I didnt break down. Because while I was packing the bag, getting ready to leave for the hospital and waiting for the aunties to come back, I was tearing and very stressed up. Hence, my heartiest thank you to both of you angels! In fact, you ladies even brought back that old cyn. It really felt like those days... where I am just me, a nobody living a mundane average life with my little family. Well, not that I am somebody now... but it just doesnt feel the same anymore when I owe my entire life to the world now. Something which I can never repay...
Secondly, Charamine went in on Thursday for her HAMA blood test and her results wont be out until next week. I will bear in mind to update everyone once the results are out. If the test results turn out normal which means she has not developed HAMA (Human Anti-Mouse Antibody), than Char will start her 10 days of GM-CSF injections on Wednesday to prepare for cycle #2 of 3f8 which will commence on the week of 14th Sept.
In the meantime, from now until than, I am just treasuring these few days of 'normalcy'. No hospital visits, no injections, no food restrictions and just us being us. I get to be a normal mummy, nagging at them to finish up their food, whining at them to pack up after playing their toys, washing and cleaning, and washing and cleaning again daily. And please pardon my lack in updating, I was yearning to have a little time to just have some peace and quiet moments... away from everything, including the net. But please do not worry for me. I am fine. I needed this to re-charge myself before the next round begins.
Actually, I do have alot in my mind. Things I want to share. Or rather, things that I just want to talk to a friend about since I am just talking to the kiddos daily. (No complaints either! Its a blessing to be talking to our own babies and answering to their never-ending lists of "WHYs". But I guess what I wanted to say was I miss talking to a friend, an adult in our 'seemingly full of troubles and challenges world'. And this blog is an avenue where I can write and feel like I have actually chatted with a long lost friend for hours and hours.
It seems like a long time since I could proudly declare that I wake up with a smile on my face, just happy to be alive. Day by day, Jase and Char, with their little gestures and small talk, is bringing their mommy back alive. One fine day, we were seated down on the floor, having our meal. My little man, Jase burst out in joy and excitement, shouting, :"YAY! We are yi jia ren (one family)!" There I was, thinking to myself, what a failure I am as a mom, getting my kids to sit on the floor to have meals and there he is doing everything in total opposite of what I am feeling. :-) I lost that battle to him gladly. Thank you my dear boy. For reasons unknown to me, you seem to have a magic power to be able to comfort your mommy me in the most loving way. :-) When I first showered Char, she noticed that I was totally wet and was squinting my eyes, she asked why. I said its because the shower head couldnt be adjusted and hence water would splash onto me whenever I shower her and I had to squint my eyes so I can see clearly. This feisty little one took it onto her responsibility to protect this useless mommy of hers. She stepped forth and positioned herself in such a way that the water wouldnt rain onto me too much and declared. "I protect you so that the water wont hit your eyes and clothes!" Looking at her face, at her smile and her satisfied look, I just couldnt help smiling and tearing. And today, I think I can finally attempt to say that I am picking up the pieces and I am slowly starting to wake up with that smile. [Aunty J said that we shouldnt confess bad things so than our lives will start getting better. :-) I am still not back to the state where I can proudly declare that I see the good to this experience because I dont dare. However, I must say that the experience so far has brought me as much love as the hurt.]
Love in the form of priceless friendship, love in the form of kind hearted souls, love in the form of angels everywhere. I had always mistakenly thought that all the donations came from mostly singaporeans. However I was recently told that there were donations even pouring in from USA and other parts of the world. Very touched by the human spirits. Thank you to the world reading this, helping me and walking this journey with me!
I have always been an emotional piece of work, wanting to live life to the fullest, experiencing all that life has to give. Guess what, I got what I wanted. I dont know to laugh or to be cynical here. But in some of the most unimaginable ways, some of the little things or dreams that I had wished for as a kid or as a teenager or as a wife seemed to have become a reality. Certainly not in the exact manner that I had dreamed off but still... the same outcome. It is only now that I realise the meaning of "You get as much as you dare wish for".
Just a few experience to share... I will keep it short. My first trip overseas was to USA when I was a teen. And amongst all the different destinations around states, I had declared to my ex husband that New York was my favourite destination. Look where I am now. Strange feeling. Heaven has created this opportunity for me to bring me back to my favourite destination which I probably would not have had the chance to return. And to top it off, I am back with my kids.
When I was married, knowing that my ex husband would be outstation from time to time, I dreamed of a lifestyle of living abroad with my ex husband and kids and just experiencing a different environment. Than came my divorce. Sometimes, during one of those lazy quiet moments, I would think back and feel a tinge of disappointment. (Not that its really important, just one of those moments of "what if"). In my sore loser attitude, I would sometimes tell myself that I can find myself a job and get outstation and than I would be able to provide that opportunity to my kids myself. Than came my first business trip abroad to China. I was so useless and afraid that I ended up cooping myself in the hotel the entire time because I had no sense of direction and I was just simply gutless. It was than I decided that I was just being ridiculous and I couldnt' even take care of myself, let alone my kids. So it was the end of that dream for me. BUT HEY! I am here with my kids, certainly for all the wrong reasons. Nonetheless, the outcome is the same. Of course, if given a choice, I rather us just being in Singapore and Char being healthy... And because I have already self sentenced myself that I would not be able to live abroad with my kids alone, heaven has decided to give me strength in different ways, or rather just take away the option of saying "no".
So here I am. Despite the wrong reasons, despite me not feeling the joy and happiness of this wrong 'vacation', what I wanted to share with the people that matters is that dreams do come true. Maybe not the way we had wished for or dreamed of... but it still happens. So please take heart. Especially to the friends out there still facing their own hardships and challenges and battling their own destiny... (I think you know who you are!) Jia you too!
PS: I am so very sorry that I digressed and sprouted too much nonsense. I just needed to say out aloud some of the many things going through my head. Once again, I seek your forgiveness and understanding. THANK YOU all.
Alright, I need to ciao soon. The kids are waiting for me to sing them their lullaby.
Have a good start to the week and stay happy and healthy as always!
Thursday, September 3, 2009
Godma Jolene and me definitely loves the clarity compared to skype!