We just finished a Xmas lunch/dinner kindly organised by RMH with a group of warm volunteers. Thanks to everyone who made this day possible, to give us the strength, the warmth, the love and the support.
Here are a few photos taken over the last 1 week when the snow first touched our feisty princess.
The photos are not in chronological order as our internet connection is quite bad here. So we had randomly uploaded them.
1. RMH House organized a kid's charity run and Jase & Char had, of course, participated in this run.
Holding hands to support each other in their first run.
Running to her brother, who is waiting for her before crossing the finishing line.
2. A rock-climbing trip with Ray and Orathai
Donning her gear, she climbed at such a height that she froze when she needed to get down.
The time now is 8.30pm on the 24th of December. Charlene and I reached New York safely a few hours back. We've reunited with Cynthia, Jase and Charmaine and went for a Chinese Christmas eve dinner and did some grocery shopping just now.
The kids have grown. Their cheeks are so red and chubby and they look really adorable in their winter wear.
I'm embarrassed to say that I've forgotten to bring my camera cable as I was too used to using the card reader directly on my lappie. So as for now, there are no photos. We'll take note to use Cynthia's camera from now on.
Wishing all of you a Merry Christmas and have a fun time unwrapping your presents!
A very kind lady from blogshop Lilybeary has raised funds for Charmaine a few months back by donating proceeds of her sale to Charmaine.
She is having a flea market sale as stated on the ad above and there is still a dress left from Charmaine's donation drive the previous time.
The flea market is still going on as I'm typing this and this would be a good opportunity for getting last minute xmas gifts.
~~~
It's snowing in New York and Charlene and I are really excited at the prospects of being reunited with Cynthia and the kids in the Big Apple. The kids say they wanna bring us to the Statue of Liberty and we're really looking forward to our little tour guides bringing us around.
We're counting down to New York but meanwhile we've got soooooo many work stuff and personal errands to run so we're wishing and hoping for Santa to put TIME into our xmas stockings. Apologies if we're slow in replying emails.
Feisty team have been quite busy and the internet there wasnt really good.
Charmaine has gone for her second round of chemo and the kids are doing great there. Yesterday was her second day and had to go for a 6.5hrs of chemo. It started late, dragged by the hospital and she was heavily sedated by the time at 11am NY Time.
The kids are all thrilled with us going in 1 weeks time and punishments are being carefully plotted by them for the longesssst time ever.
Thanks to Ray and his partner, Steph, Chorina, Auntie Fanny, Iris and many many more for keeping Cyn sane and making New York a home to them. Ray, Safe travels to London and we will make sure your house is intact when you are back ;)
To the supporters who have been hanging there with us, sending regular sms-es to make sure the trio is fine.. thank you for making this year a wonderful one for us, despite the challenges they have faced.
Well, like what Chorina had said to us, all these had been panned out, to make sure that we are strong and never will fall again in face of other challenges.
We are leaving on 24th early early morning and be sure to update more when we are in New York!
Pray for good health for Godma Jolene for she has a new found love - toilet bowl. Pray for Hama negative to come soon!
We spent 9 hours in the hospital as the whole treatment ran for about 6.5 hours. Charmaine was heavily pre-medicated and was drowsy when the infusion started. She wanted me to jump into the bed and lay beside her. A couple of minutes after I jumped onto the bed, she fell asleep. It was very comforting watching her sleep and not suffering from whatever I had been cautioned of. Thank god. Thank you all.
Jase fell asleep soon after as well. After an hour, we all woke up. Auntie Iris arrived just in time to see Charmaine speaking and eating. :-) She even joked, "Now that she is talking so loudly, we know she is definitely back to normal!" Indeed, once the pre med wore off, she was up and bouncing again!
Its been awhile (almost a month) since we returned to the hospital for such a prolong period of treatment. Despite the long hours, Charmaine kept her spirits up high and watched the cartoons on TV and played with her brother Jase! My dear Jase has also outgrown his initial shyness and is able to make himself comfortable by going to the playroom to play by himself. He has also grown to be more sociable and would approach the nurses whenever Charmaine's machine alarm beeped!
We had a smooth day for sure and I am very thankful and grateful that everything has gone so well. Charmaine and Jase is now playing in the room doctor and nurse (Preparing to inject Charlene jie jie and Godma Jolene! Haha. Cheeky Charmaine has once again learned the names of her new medication and the doctors' names and is able to mention all the names fluently while role-playing!) and nobody will guess that she just had a 6.5hrs treatment barely a couple hours ago!
As happy and relieved as I am now, its still not time to let my guard down yet. :-( Still gotta watch out for that dreadful fever! Nonetheless, I will definitely sleep better tonight with my mind at ease.
Just wanted to let everyone know the updates so that I don't keep you people worrying for long. THANK YOU!!!
The next round of chemo is on 15th and 16th of Dec. For now, I am going into my 'escapist' reality and will not think too much about Round 2 until than.
Oh, the other shock I got today is her HAMA results for last week. I had presumed that the HAMA numbers will go down as the weeks go by. Imagine the shock and despair I felt when I heard that Charmaine's HAMA has in fact gone up from positive to super positive! She was initially at the 6000 range and last week's result showed that she has gone up to the 8000 range! :-(
How much more abnormal is my normalcy! Aren't we all brought up to think that a strong immunity is good? How can my definition always be different from the normal standard definition? I used to dream of being different from the norm when I was younger. In fact, I am different. I married younger than all my friends. I see the hardships in life as challenges rather than obstacles. I even believe that my divorce is not a bad thing after all! My divorce has showed me the most important thing in life - friendship. I used to joke with my friends that losing one husband and getting so many worthy friends in return is more than what I had bargained for! :-)
The topic of friendship is one that I can write entire novel on! I shall leave it to another day to talk about that. But needless for me to say, everyone should already know by now that I owe my daughter's life to some of the greatest friends ever!
Back to topic of the whole NORMAL definition. I was gonna say be careful what you wish for. I am sure I had wished for an unique life at some point in my ancient life. Although I could never ever imagine this is HOW UNIQUE my life is going to turn out! (Gosh, and I am barely at the midpoint of my average asian woman life expectancy! I do not even dare to look beyond a week in my life now!) Of course, I was always gonna whine that its probably about time some normalcy return to my life, isn't it? But than, I realise its my wishful thinking again. I remembered blogging that NORMAL doesn't exist in my life anymore. Just what am I expecting and what is there for me to sob about? I just have to remember that the guidebook to the norms of living doesn't apply in my life anymore! So yes, strong immunity is not necessarily a good thing in my life.
I just have to live with the fact that I am always going to be a standard deviation. And with this faith and belief, I hope that my little princess is going to be the very standard deviation defining the most magical ab-normalcy in my life. Defying all odds and kicking this monster out of our lives forever and ever!!!
This year's Christmas holds a great deal of significance for me. Traditionally, Christmas and Chinese New Year have always been my 2 favourite festive seasons of the year. I like the romantic festive lights and mood during Christmas which also usually marks the end of the year for me and adore the noisy bustling start to the new year with Chinese New Year.
Christmas is just around the corner. It means that another year is coming to an end. What a year 2009 has been for me and my family. They say the one's life is enriched with the experiences we go through. This entire year of experiences is something that I will definitely carry with me to my resting ground. The pain, the tears, the despair, the helplessness, the shock, the agony and the scars have been doubled and tripled and zillion-fied in the entire year for me. I cannot even begin to look back and reflect on what has transpired. Even up till this moment, everything is still so unreal to me. My past year has gone by in a flash (as fast as the flash light in a camera!). I believe subconsciously my mind has decided to block out some of the most painful experiences to help me cope better (Just like what had happened 4 years ago).
But while I am here in NYC, staring at the warm orange lights hanging on all the Christmas Trees in the house, all I feel is love. I feel very blessed and I feel that the world is still the beautiful place I've always believed in. The warm fuzzy feeling has not changed a single bit, if anything, it has grown even warmer and lovelier. I remember how strangers, by the thousands, have pooled all their resources together to help me in saving my little girl, a child they have never met. I remember meeting the Dream Team footballers for the first time in my life and watching the match they played to raise funds for my little girl. I remembered the DJs, the journalists, the neighbours, the school teachers, the new friends, the nurses, the doctors, the constituency members, the SIA stewardess/stewards, pilots, the ground crew, the Nickelodeon friends, the relatives, the ex-colleagues, the internet world of friends, the Nuffnang friends, the international supporters and many many more I have not had a chance to thank in person...
I have already received my biggest and most invaluable Christmas Present from you... Each and everyone of you have showed me the compassionate side to humanity. Your selfless heart has given me my most important miracle, a chance for my little girl to live and be happy. And life is priceless.
I have also received the most sought after gift in life - friendship. My dear friends, YOU have once again appeared in my life at the most crucial moment. And YOU are the very reason why I am still able to smile today. Jolene, Josse, Charlene, Alexis, THANK YOU. What I have received from you, I will never ever be able to repay. If anyone needs a definition of friendship, look towards my friends. We hardly meet during good times but they always appear during bad times and keep me afloat, never even once giving up on me. Some people think I am strong but the truth is I am the dwarf standing on giants' shoulders. These 4 ladies are the stronghold in my life. They each bring along with them a strength of their own and gave it all to me, never allowing me to quit. I have been betrayed by friendship before and knows how much it hurts but once again, I am compensated by way much more than what I had lost! Having you all in my life is a godsend blessing and I cannot imagine how my life would be without anyone of you. Thank you ladies. Jol and Char, I am so looking forward to seeing you both again! Miss you all so much!
Have I digressed too far out of point? Pardon me!
Am gonna end it now so I can get the kids ready for bed.
Sending some of Jase and Char endless engery and silly laughters your way!
A few hours from now, Charmaine will be heading for a new round of chemo, supposedly just a few hours course. This new chemo is meant to break down her body to revert back to Hama negative before she can proceed on with the treatment. As of the same as each new drug being injected to her, there is bound to have questions laying around when her body starts to react to it.
Every parents (minus that 1 dad) worries the same for their own children. Cyn Mommy had been paranoid the entire day, packing clothes in even though it was not required. You never know what will happen especially with new drug. I am sure, we all remember days of first 3F8 ...
Thanks for making arrangement, Aunty Iris, for the babysitter, in case Jase is being left alone.
If everyone could, do pray for Charmaine, to allow her to pass through this chemo, as uneventful as possible.
Its a been awhile. My internet connection was unstable and laptop is faulty. Got me a little frustrated so I just stayed away from my laptop for awhile. Its actually refreshing because I am so reliant on my laptop and internet since we arrived here... feels like my world is just virtual, other than time with my 2 kiddos.
So I survived. :-) Spent time reading and enjoyed myself immensely with books.
Charmaine repeated her blood test on Monday 23rd Nov, instead of the previous week (the team made a mistake in the dates and got us all worrying unneccesarily) and the result was out on 24th Nov. Charmaine is still HAMA POSITIVE.
The plan now is to start her on Chemo on the 1st of Dec. The drug is different from those in Singapore and its gonna be her first time. As such, we are not sure how her body will react to it... whether she will develop any allergic reaction which requires admission... As a precaution, Iris has helped me arrange a babysitter whom will come and look after Jase overnight in case Charmaine has to be admitted. Sigh... it is stressful even just typing this out.
Nonetheless, we are all doing OKAY. Stephanie invited us over to her house for Thanksgiving Dinner and the kids had a blast! They were creating tons of noise pollution and absolutely love the 'FAT CHICKEN' (as termed by Jase)! Charmaine even requested that Auntie Stephanie teach me how to cook the yummy turkey! Haha...
That was a very delicious meal and I ate so many things that I have never eaten before - the really yummy-licious stuffing, the pumkin pie and the pretty in pink jello! A very big thank you to Stephanie, Ron, Joanne, Andrew and Grammy for having us at their family thanksgiving. You are a home away from home to me. THANK YOU.
Finally had time to do a bit of webconference with kiddos =) they are doing very well. weather has turned cold for the kids.
They have also taken up karate and it might be a wrong step for our feisty princess for she is so strong in will and in strength. LOL. thanks to RMH for the session!
Cyn Mommy's internet is down. 6--7 years of age laptop is down. But, herself and the kids, are doing exceptionally well!
They were @ Auntie Fanny's place, and all I can hear from Princess Charmaine is...
"Charlene jiejie, I am jumping around in Auntie Fanny house. Very fun!"
Then shortly came Jase jase...
"Everyone keep quiet please. I cant hear Charlene jiejie."
Who continued a one-liner: "I am playing with meimei now. Very fun!"
And zoom off shouting,"I miss you!"
I miss you too kiddos...
Countdown to NY!
Thank you Chorina, and Chew Lian for the concern too =D Sorry that I had been very busy to catch up on things! The package that was supposed to be sent over, we reckon, will be faster if we would to bring it there when Godma and I are in NY.
Last friday when i recieved the phone call from MSKCC, I cried tears of joy and was just overwhelmed with relief and happiness. Although clear scans and NED doesnt mean the end of the battle for us, it still brought comfort knowing that at least the scans are clear. I was literally screaming and joying in joy and wanted so badly to blog about how I felt! Because I pull everyone along with me in this rollercoaster ride, its only fair that I pull you along at the highest peak of my happiness. However I decided to sit on it while I brought the kids out for a breather.
And by evening when we reached home, I received a message from George (Elizabeth's father) informing me that Elizabeth had relasped for the second time. I cried. And than all of a sudden, I couldnt blog anymore because I was too affected by the news... Elizabeth hadnt HAMA positive and although it had also been a crazy week for them, with scanxiety, they were looking forward to returning to NYC for their 4th cycle of 3f8. Alas, all is not what we had wished for.
Different kids start and follow different schedules for their 3f8 treatment here. And I was very lucky to have the Westberry family with me. We were the only 2 families who started our very first 3f8 cycle for our girls on 17th August and we should have been together every cycle for the whole of 2 years. Ironically, both Lisa (Elizabeth's mom) and me even counted that they would both receive 15 cycles to complete the treatment of 2 years. They provided much comfort to me when I felt all alone in the hospital room and always offered assistance to me. It felt like a very cruel joke but it seems like none of us is continuing as planned. :-(
And it kept me on my toes... Even though both Charmaine and Elizabeth had clear scans in August and completed 3 cycles of 3f8, anything is still possible with neuroblastoma. Sighz, the thought is very stressful and upsetting.
Anyway, I lived the past few days trying to be normal while always worrying about whats next. Did I mention that when I first heard the news from the hospital, I hugged Charmaine and told her she has once again won her monster! The first thing she said was "YEAH!!! Can we go back Singapore?" HAHA. I just smiled and said "Nope, because we have not seen snow yet!"
As for whats next, I am basically thrown off tracks twice and hence is feeling unsettled and anxious. When they called me to inform me of the HAMA results, the Nurse Practioner said that they will repeat Charmaine's blood test in 3 weeks and in the meantime, Charmaine has to take her cycle #3 of Accutane for maintainence. So I had mentally prepared myself for the blood test that was supposed to take place on 23rd Nov.
Just when you thought that you are getting into the new routine, routine changes again! On Tuesday, I received a call from MSKCC informing me that they want to start Charmaine on chemo next week!!!!!!!!!!!!!!!!!
I went numb and pale again. Though it wasnt as bad as when I heard the HAMA results, it was bad enough to send me into a zombie mode again. :-( Thats why I have been so quiet. *sighs*
HAMA is measured using some scale that I am not sure of. All that I know is if the counts show that its 1000 or above, the child is considered to be HAMA positive. I enquired what is Charmaine's level but they refused to say. Other parents also said that the team of doctors have never divulged the numbers to them before. Anyway, I managed to find out that Charmaine's numbers are WAY HIGH, like WAY WAY HIGH above 1000. Which means that her immune is good. BUT, almost too good for her own good now. :-(
Irony. Life is full of ironies. Or is it just my life?
In short, there is a change in plans again, due to whatever reasons I am not sure. I am only meeting the team on Monday to discuss and sign consent maybe... Consent for the treatment to hopefully bring down the HAMA numbers to negative... The doctors call it 'treatment' but the parents all call it 'CHEMO' because it consists of chemo drug and because it works on the same basis as well - to destroy our own immunity...
Thats all I have to share with everyone for now... The picture will only become slightly clearer after Monday's discussion.
~ Extracted from an email whom Princess Char has touched her life with~
Hello Cynthia Mommy,
I've always held you in great honour and respect for being able to be so strong in the midst of your circumstances. Having to look after two young kids by yourself is certainly not an easy job, more so that you have to frequent the hospital with Charmaine and Jase. I think it is only natural that at some point you come to a stage that you're at your wits end and you can't help but feel very emotional, sad, worried, stressed. It must have been even harder on you that Char and Jase are so little and they are unable to fully understand what ever that's happening. Still, you have to be their pillar of strength and the cement that hold the tiles of your little family together.
What I can say is that, your efforts and perseverance thus far really is not in vain. Though at times you really do get frustrated, tired and just want to scream out loud, I'm sure that Char and Jase just cannot be more thankful to have such a super mommy like you! At their young age, I'm sure they don't outrightly say "thanks mom for looking after us and going through so much" but you know in their heart, that's how they feel. Furthermore, I'm sure as they grow older, they will really be more and more grateful for what you've done for them.
And I must say, your relentless spirit to keep fighting this illness with Char and of course her own fighting spirit to take on 3F8 and all that comes her way, it has been a great motivation and encouragement for many out there including myself.
Well, I'm a 16 year old and your love for your kiddos really made me rather envious really. And sometimes I can't help but feel that my life is also a little less than complete. But each time I read about how char fights on and how you keep handling everything on your own, it gives me me this determination to press on for things that go on in my life. Well I'm currently in the midst of the O levels and I really do have this feeling that I will screw it up. To make matters worse, my parents are very devaluing and they really believe that I wont' make it in life. In particular my father who is very judgmental and critical. So each time I see how much you love your kids, I can't help but feel loved on their behalf. Well, I guess every family has their own set of problems. Similar to Char having to battle this illness, my father battles schizophrenia which explains his character. He constantly has to get those voices out of his head and will shout at me for no reason thining he is communicating with those voices in his head. Its very scary and it causes me a lot of emotional hurt as well. Just like Char and Jase, I personally think that I too, lack the maturity to understand everything that's going around me but I just know I have to go through them somehow although sometimes I question why am I the victim of his illness. Sometimes it pains me to see my mom having to handle my father too and I can tell its causing friction to their marriage. It has been so long, I wonder when there will be a stop to this.
However, after reading your entries on the blog. I really drew so much strength from there and my purpose of this letter is not to tell you my problems or unintentionally burden you further but to really tell you how much you've made a difference in my life although you don't know me in person. You're a really strong mommy and many kids would be proud to call you "Mom". So keep pressing on all right! I believe that everything happens for a reason. Char being HAMA positive, does not mean its the end of the world. Though its tough on you, having to accept this truth and being held in "scanxiety" as how you termed it, I'm sure you being as strong as you normally are, would be able to pull through this difficult time. I'll always remember the quote you've left on the blog. "life is a climb but the view is great on top" so keep climbing!! Also, hang on to every little thing you can give thanks for, breathing is a miracle on itself. We never know what tmr holds. We may just never wake up again.
Whether you're a Christian or not, I'm not sure. But I do hope this verse brings some encouragement to you.
"Then David continued, 'Be strong and courageous, and do the work. Don't be afraid or discouraged by the size of the task, for the LORD God, my God, is with you. He will not fail you or forsake you. He will see to it that all the work related to the Temple of the Lord will be brought to completion' " -1 Chronicles 28:20
Do pardon me if some stuff I have said has been rude or insensitive in anyway. i really don't mean it. I just felt a strong inclination to write you a note of encouragement and those words are really from the bottom of my heart. =)
Press on Cynthia Mommy for the challenges ahead just as you have indirectly really encouraged me to press on in life too through your love and commitment to Char and Jase.
Born again.. Having a phone call in the middle of night, always scare me. Last night, Cyn number flashed on my cell again. Heart skipped a beat and when the news was heard, the reaction is totally like what Godma Jolene has mentioned. . WHEE WHOO~~~
To celebrate the occasion, Cyn mommy cooked the auspicious Chinese dish.
Getting ready to chomp chomp!
The last few days had been a roller-coaster rides for the feistyfamily. And who is not, given the things they have thrown on to.
To reward the kids, Cyn Mommy has finally agreed to the longest wish from Princess Charmaine and Jase korkor....
TADAH!!!!
YES! It is scooter!Scooter , is the present for her first mouth of Accutane, and finally, after so many rounds of Accutane, we decided it is theirs! The princess is all so excited wearing her full gear!
Indeed, it didnt come cheap and Cyn Mommy's personal account is depleting. However, to reward the kids, for picking themselves up, over and over again, each and every falls they encounter, every single pain they suffered, THIS IS IT!
Before I end off, this is what happened at this present moment:
Cyn mommy turned to tell Charmaine "Korkor is aslp" With that, Charmaine let out a YAY! and off the cartoon on the tv. It was too scary for her and she has been trying to force herself to watch it with both hands on her eyes ALL THE TIME! The bond of the babies...
Cynthia just called and she was screaming and cheering and rejoicing and I was like screaming and cheering and rejoicing and I'm very sure that while she is on the phone with Charlene right now, Charlene would be screaming and cheering and rejoicing too.
=D
=D
=D
Cynthia just cooked yummy mee sua for our very Asian-diet kids and the whole family was eating mee sua when the call from Kettering came. As we Chinese know, mee sua is usually eaten on birthdays and it was as if they were reborned.
Thanx and big hugz to all you for your prayers and words of encouragement!
xoxo, Jolene
~~~ Edited to add: Charlene mentioned this in the comment page and I thought it would be good to put it here as well.
"All clear" means that as of now, whatever that is detectable and could be picked up by the scans shows that Charmaine is clear of cancer cells. However, it does not equate to being totally cleared of cancer.
3F8 treatment would still be in progress after clearing Charmaine of HAMA to keep the Monster away.
However, at any point in time, before, during or after the treatment, there is always a risk of relapse case which happens to quite many cancer individuals.
Hope this clarifies any doubt that you may have about what "all clear" means. It's always good to ask. =)
I am gonna be sleepless tonight for sure! I went to Dr Kushner's Office asking for Charmaine's scan results. And I was told someone would call me back by the end of today. Indeed, I received a call. A Dr M called me at 4pm asking if anyone called to inform me of Charmaine's results. I said "NO." So, Dr M, instead of telling me the results, told me that she will check and get someone to call me back by tomorrow morning!!! Argh. Why couldnt she just tell me instead? Doesnt she know she is making me more paranoid than ever by actually calling me and not telling me!
Ahhh... I am trying very very hard to stay calm, focused or just simply being normal. I know I need positive thoughts to get my good news but its so tough. :-(
I just put my cell phone into the washing machine and spun it twice! Hmm, how smart can I be! And I 'cooked' my hand along with the food. ARGH. Am I losing it? Feels like insanity is surrounding me again. :S
The truth is its driving me nuts just waiting to hear the results. And everytime the phone rings, i can barely breathe. More so if the number is from Sloan Kettering.
DEAR GOD, If you can read, hear or see me, PLEASE PLEASE PLEASE tell me that Charmaine's scans are awesome and perfectly clean or clear or just normal! I am begging, pleading, praying and crying out to you. PLEASE KEEP CHARMAINE SAFE and HEALTHY.
On the one hand, I keep telling myself I have to be positive and smile and be happy and have faith that everything is okay and I am just being overly paranoid. On the other hand, I cannot stop my mind from straying onto those fearful thoughts.
The angust, the anxiety (or what parents here term as SCANXIETY) and the fear is really painful and tough to manage. One NB parent described it best:
"I do not need to explain to oncology families what any of this feels like. For those of you that do not walk in our shoes, I wouldn't even want you to imagine the angst of a parent as you undergo the "SCANS" week. Not being able to breathe, pretty much sums it up for a visual. Sitting here on a gorgeous Fall day, watching XXX play... and I not having any clue as to what may be in store for our lives in just a few short days can bring one to their knees. We are ofcourse putting our faith in a clear, clean, NO EVIDENCE OF DISEASE path..."
Living life on the edge is how I feel everyday since Charmaine's diagnosis, and especially so today. Ironically, I used to complain and whine about how life is too boring and monotonous. Now I know what I have taken for granted all these years of my life, I would give it up all to have a chance to live that monotonous and boring life everyday because such 'excitement' is too much to bear!
Sometimes, no news is good news. And, no excitement and just being normal is really not a bad thing after all.
Still praying... fingers and toes and everything crossed for good news.
By the way, both Jase and Charmaine are going great though. Both Jase and Charmaine has grown! Looking at Jase big shoulders and some tiny muscles around his arms makes me forget all the anxiety for awhile there. He has become tougher and silly him, he doesnt realise how 'strong' he is and often forgets his strength when he plays! Our little princess, Charmaine has grown to her pre-treatment weight and has in fact put on a little more. Chubby is the best word to describe her now. :-) She's getting so heavy I could barely carry her longer than 5mins! (But did I mention that seeing her tummy grow bigger freaks me out every single minute of my life?) Dr Kushner and I were having a discussion on Charmaine having no pain worries and freaks me out totally and he jokingly rebuked "WHAT KIND OF MOTHER ARE YOU? Wishing for pain for your kid?" Irony isnt it? Yeah, nothing beats being watching your own child grow taller and gaining weight. But here I am, happy and worried at the same time. Mixed emotions. Its a mental torture. You laugh but somewhere in that mind of yours, the fear lingers always.
Another NB parent wrote something which I think eclipsed my thoughts or actually every NB parent's thoughts perfectly. "I will never stop worrying ever, probably until she celebrates her 80th Birthday."
Hmm, sometimes I try to normalise, screaming at myself: "Which parent doesnt worry for their child in the first place!" Being a mother or a father, whether our child is sick or not, we will always worry, isnt it? When I think that way, it makes me feel a little 'normal'. (When you read some of the NB kids' blogs, you realise that all the parents use the word 'normal' usually in italics or with a open and close inverted comma) I am also living in that 'normal' world now...
Pardon me for this rather messy entry that keeps jumping topics with my incoherent and rather anxious thoughts now. :(
Once again, I feel better after typing/saying it out. THANK YOU for listening. I know you are. :-)
Its time for me to get back to my chores and keep my thoughts positive and busy.
Sending my regards and love to everyone, Cyn mommy
I dread hearing my phone ring yesterday. We went out to Chinatown to stock up on grocery and came back about 4:30pm. I was kind of jittery but still hopeful that the call wouldnt come in.
Darn. Did I ever mention that I hate my jinxed 6th sense? At 5pm sharp, the phone rang. My heart jumped a few beats faster. I was half hoping that it might be the office calling to inform me about the CT scan timing this morning.
It was Yih Chih, the nurse practitioner. My heart sank. "Miss Lim, Charmaine HAMA positive." The only words that came out of my mouth was "OK." And before I know it, tears started flowing down. I couldnt conceal my shock, my sadness, my disappointment, my worries, myself. Yih Chih heard me. She comforted me and assured me that things will be ok. But nothing makes sense to me anymore. I just couldnt get my brain to focus.
All that I know I had to absolutely remember and understand was this: - They will repeat blood test in 3 weeks time on the 23rd of Nov. Results will be out on 24th. In the meantime, Charmaine is going to be maintained on Accutane for 2 weeks starting 16th November.
And if she still is HAMA positive on the 24th of November, they will start a 'treatment' to bring down the T cells and something I couldnt make much sense of. In laymen's terms, they will bring down her body immunity so that the resistance will wear off. However, even after the treatment, its really up to the body as to when she will HAMA negative. (It may take months) They use 2 types of drugs. One of which is a chemo drug which is why I really hate it. She assured me that the dose is small and that her counts wont drop BUT the point is, I just dont want it to happen!
I basically couldnt stop crying ever since that call and the kids found out. They said they felt like crying too seeing me cry. So I lied. I said I am sick, having a bad headache and a runny nose, not crying. Jase made the bed, and Char tried to make her useful as well, kept kissing me on my cheeks. I really had such a bad urge to cry out loud and scream my head off but I couldnt. And that kind of made everything worse. Got sick too.
Called Jolene and Charlene immediately but I couldnt talk except to inform them. I'm sorry I got both you ladies stressed out with my cries and inappropriately timed call. Stephanie and Iris called too. Sorry for stressing you both out as well. I was still trying to fight the reality and was just very very lost. I dont know what's going to happen and all I could do was to cry.
I knew that when I decided to come to NYC alone with the kiddos, there will come a day when I have to face challenges like this. Its tough indeed. I felt like my whole world crashing down onto me again and yet I have to be strong. I have to continue my days as though nothing ever happened and go on doing my chores and being sane. I was just telling my friend that only now do I realise that those movie/drama scenes whereby ladies faint upon hear grim news actually is not that fake. I could hardly breath and just couldnt control my body from going sick and weak and numb. My headache was killing me as well. I threw up everything that I had forced myself to swallow.
It sounds terrible. It is. I wont even lie. Because it is the only time where I can get to be myself and be honest with how I am feeling now. I am really feeling shit now. I cannot focus and I dont know what or how to think. And I just cant stop my darn tears gushing out! BUT I dont want to cry anymore because it is going to make me more sick than ever. And I cannot get sick. Not now.
So here I am. I refuse to write a depressing entry. Especially today. NOT today. Even though I feel like a piece of nervous wreck now, I do not want to remain this way when I wake up tomorrow. To everyone else who cried alongside with me upon hearing the news, thank you. I cried and cried BUT its enough. I questioned what did I do wrong again? I asked if it was because I started to be happy again and hence I had to be pushed down the abyss once more. I can continue to write about how tough and how depressed I am but I choose not to! Because I dont have the luxury to do so. And I know everyone must be worried sick for me.
I am feeling much much better after taking the much needed nap. My headache is gone, almost totally. And we still have tons to be done in a few hours. CT scans today, MIBG scan tomorrow. I am going to need ALL the positive energy I can gather to pull through the rest of the week with good news. And if thats what it takes to get the good news, I will do it! I will smile and attract whatever positive aura I can get! CLEAR SCANS CLEAR SCANS CLEAR SCANS!!!
And I need your help. I promise I will be okay. And I promise I wont let this get me down longer than a day. So please dont worry for me. Instead, please channel all the prayers towards Charmaine and pray that she will have CLEAR SCANS all the way!!!
As for what is going to happen from now in terms of treatment, we are at the phase where we have always mentioned earlier. Uncertainty. I dont wish to speculate and jinx my little princess. But I will try to update everyone as we go along. Hence, please bear with me as I cannot answer your questions.
I'm just focusing on the rest of the week. Scans week is very nerve wrecking. :-( I will think about others at the end of the week.
Please please keep those much need prayers coming in. THANK YOU so much, from the bottom of my heart. And we will be OKAY, just in case you are worried. Ending it with a big smile. :-)
Some of you have received the sms. It is too early in the morning, i cant remember the numbers much so for those who care, and did not receive the sms, I am sorry. . Charmaine has just been confirmed positive. . What to do from now, what to do next, what is the status etc, i will fill in later. . Please just continue praying.... Pray for the blood test 3 weeks later to clear, to continue treatment.
I'm just gonna blog a quick entry on what happened over Halloween weekend for us (will add pictures later).
It was a rather uneventful day for us as both Charmaine and Step got sick. I felt so bad because Stephanie had to drag herself out of bed just to ferry us to Brendon's House for Halloween Party.
Not long after Charmaine got into Stephanie's car, she started to cry and wouldn't tell me why. Before I knew it, she threw up on her Princess Costume! Thankfully, I brought extra clothes for the kids to change out of and after cleaning her up, she was all happy again!
Upon reaching Uncle Brendon's house, they ran up the stairs and down the stairs again to his basement full of toys for kids!
They were so at home with Uncle Brendon's 2 kiddos - Brendon Junior and Patrick. I could actually spend a few mins talking to Grandma Peggy without them dragging me off to play with them. :-)
After some getting ready, we were ready to gatecrash Uncle Brendon's neighbour’s Halloween Party for kids!!! I was so impressed with all the kids' costumes and even more impressed with the owner's playroom for their only girl! WOW - that cute lil pink playroom is filled with all sorts of girly toys, even I felt like a lil girl again! When we arrived, the house was full of lil girls, except our 3 boys. Brendon Junior and Patrick bravely walked into the girly room to play but Jase was too shy. He refused to enter and stood outisde the room. Than his Power Ranger mask scared another lil girl. HAHA. As for lil Char, she just held my hand and pulled me in with her. Always so feisty! Haha...
After awhile when the kids went down for lunch, Jase finally walked into the room and played with Char. As usual, my very 'rice and noodles' kids werent used to their american party delicacies and hence didnt eat much. But that didnt keep them from running around to play. After awhile, Jase decided that everyone was running away from him and he was actually proud of his scariness. Haha.
When it was trick or treating time, I had assumed that Jase would be shy and Charmaine would refuse to walk. But I was wrong! Jase ran up every house happily with Charmaine and shouted "Trick or Treat" and "THANK YOU". And our dear princess Charmaine was very feisty! She walked down the entire street with all the kids and always tried to catch up with the bigger Kor Kor in front! Though not as fast, she completed the course as well! So PROUD of her!
But this little princess is still princessly! HAHA. For some weird reasons, she refused to open her 'golden' mouth to say "Trick or Treat".
Amused me though. Jase would be the sweet brother he always is, he would always take 2 candies, one more for his lil sister whom could save a few steps up the stairs. And he would tell me "I said thank you for mei mei too!" :-)
As for me, I am just very very happy that both the kids had so much fun! Way more than I imagine! Especially with them being such a sport! :-) I kept snapping as many pictures as I could. I could have sworn I had forgotten all the tiredness and the challenges ahead! The view was just awesome. The beautiful autumn leaves, all the beautifully decorated Halloween houses, nice weather and all the excited and cutely dressed kids running down the streets. They would run back showing us all the candies they have gotten!
Its indeed one of those fine moments in life that you truly feel that all the pain and toughness is so worth it! And life couldnt get any better. :-)
Thats the not end! We had a fun fun finale with a very simple trick Uncle Brendon showed the kids when we drove back to Uncle Brendon's house. Uncle Brendon got Brendon Junior to switch off all the lights in the basement and casted shawdows using his Halloween Torchlight with interchangeable covers. One moment - there was a bat that was flying. It got bigger! HAHA. The kids ran. Than the 'witch came flying across the ceiling!" More screams and more laughters! That certainly brought the mood to an all time time and we couldnt have asked for a better way to end the day! The kids left Uncle Brendon's house happy and wanting more. :-) Within minutes of getting onto Auntie Stephanie's car, the kids fell asleep. Just before Jase dozed off, he asked "Are we going to do more trick or treat?" Guess it said it all for how much fun they kids had for their first ever Halloween!
I will have to end it now because its Scans week and I'm not quite sane now.
As Jolene has mentioned, our internet connection was down for a week and we only got it back yesterday, hence this very late update.
I'm typing this entry with mixed emotions. I had actually only wanted to update a few days later as I cant seem to gather the positive mood to write a decent entry. However, I know that many of my friends and many others following the blog is getting concerned. Thus, I have decided to write something. Hmm, I will make an effort to ensure as much rationality and sanity as possible.
So what started out to be a miraculously Day 1 of cycle 3 for 3f8 ended with me feeling somewhat lost and scared. It was a feeling I cant even begin to describe. To wish for pain or not. Charlene seemed to put it how it felt best. It has never ever occured to me that pain was an indicator. I've never heard another parent caution me that if there was no pain, than it would mean bad news. Hence, I was always kind of praying for minimal pain... not because I was aware that some sort of pain is good. It was more because I never imagine a day where there would be no pain with 3f8.
The nurses took turns and walked in a couple of times, waiting to give Charmaine the pain relief medication but Charmaine just looked great. It probably took me a good 5minutes or so to realise that something about no pain just doesnt sound right. The thought freaked me out totally. In a daze, I dont know how or where did I muster enough sanity to actually ask the nurse, "Can I ask a silly question? Does this mean that its not good?" Princess Lea (one of the nurse codename) looked at me and said "Well, she had pain from Mon to Thurs. So it may not mean anything." And when nurse Jessica walked in, Princess Lea immediately said to Jessica, "Mom is already asking me!" So realisation number 2, the nurses were already discussing amongst themselves. Just adds on to the insanity right at that moment. I thought I looked alright. The kids were just great. Charmaine was up and running immediately after the flush was done. Jase was happy, playing with his sister. I was kind of alive, I think. Another of the nurses, Cat walked into the room and gave me a big warm hug assuring me not to think too much into it. I nodded my head and probed further. Apparently, if the kid doesnt experience any pain from Monday to Friday of the 3f8 infusion, it was a sure sign of HAMA positive coming. At that point, nothing seemed to get into that head of mine. Even though she did have pain from Mon to Thurs, that one day of zero pain is enough to send me go crazy for awhile. Until I get the HAMA negative results, I guess my heart will never be peace and calm. Ironically, its not exactly like my mind has been anything near peace and calm since Charmaine was diagnosed...
Last week has been tough for me. I am not sure if I can blame it on HAMA, or is it just me reaching the lowest point. My fuse short circuited easily, my mind is just depressed. Even the internet and the lift broke down. What great timing. :-( Jase and Charmaine did great though. It must have been really tough for them to face a very grumpy mommy. I'm very sorry babies. :-( I just wished I could control my frustrations more but its so tough. Every night, I would promise myself that I would wake up happy tomorrow but I never did.
Well, I guess the important thing is that I am feeling better now.
Another hiccup last week would be the Home Isolation that Charmaine was put under. Sigh. Just one of those times when all the worse things has to happen all at the same time again. Saturday, there was a Pumpkin trip organised by RMH which I signed up for but didnt go eventually because there was a slight drizzle that morning and I decided against going. (It turned out to be a good call)
Saturday night past 10pm, I received a call from MSKCC. The fellow doctor called to tell me that a child in RMH was diagnosed with Influenza at 5pm that day and Charmaine was identified as one of the child exposed to the kid. FEAR. PUZZLED. WORRY. The 3 things that went through my mind when I heard it. Fear because treatment would just heighten my already very stressed out body and mind. Puzzled because I know my kiddos dont mix with other kids much and where and how could she have been exposed. Worry because if she was indeed infected, than all the hospitalization and stuff would just make my life turn upside down.
I asked politely if I could know who is the kid but was told it was illegal to divuldge. I wasnt keen to gossip but more to get a clearer picture if Charmaine was indeed around the kid. But yes, I was just left with no choice but to follow instructions. Home Isolation until Thurs and everyone including myself has to taken Tamiflu for 10 days. It cost USD $160 per pax for the medication. I wasnt very convinced that Char or Jase has been exposed because none of us has any symptoms at all. In fact, they couldnt be happier and more active. Nonetheless, it was for our own good, I cant exactly complain either. The only issue was the stress of confining the kids to the room and yet keeping them happy. But the kiddos did it. :-)
Yesterday, I heard from another neighbour that the kid was part of the Pumpkin trip and hence everyone who went on the Pumpkin Trip was treated as being exposed to the Influenza virus. OH GOD. But we didnt go. They probably got our names from the sign up list. :( Oh well, the important thing is that it puts my mind at rest knowing that we werent on that Pumpkin Trip.
Home isolation, all 3 of us on Tamiflu, Charmaine on her cycle 2 of Accutane, I should be grateful that I am here typing this entry unscathed. I am. Thank you all for always supporting us.
For now, the kids are excited about their first ever Halloween. The TV cartoons have been showing Halloween cartoons for a week so they know its Trick or Treat. But they dont exactly have any idea whats its about. Frankly, neither do I. I brought them out today to get their Halloween Costumes and Stephanie has arranged to pick the kiddos and me to her boss - Brendon's house to spend Halloween with his kids. The kiddos are very excited about spending Sat with both Brendon and Patrick - their new playmates. Jase is dressing up as The Black Ranger and Charmaine as a Pink Princess. Charmaine kept telling me "Mom, I'm so excited about Halloween Party and I'm ready!" :-)
Oh yes, I forgot to mention. Because of Home Isolation, Char didnt go for her blood test today but we will most slightly do it on Monday. The blood test results will only be out on Wednesday. I am praying not to hear any news from MSKCC. Their usual practice is no news when there is no problem.
Next week is another fully packed week. A week where even more prayers are needed. I cant help but gave a bitter grin after saying that. It just sounded silly to me because since Feb, there has not been a week in my life where no prayers are needed. And I reckon there will never be such a day anymore.
2nd Nov - Brain MRI 3rd Nov - CT Scan and MIBG Injection 4th Nov - MIBG Scan 16th Nov - Bone Marrow Biopsy.
I am telling my heart, my mind and my soul to be happy this weekend for Jase and Charmaine's Halloween celebration. Thats all I can do right now.
Before I end this entry, I like to say a big THANK YOU to Chew Lian for her package from Singapore. I had forgotten to request for them to include the Chui Kway mould in the package and thankfully, you did!!! We love everything and finished almost half of what was sent. :-)
Our Auntie Iris in NYC who has helped us greatly had a minor op today and hence, I would like to ask for some prayers for her speedy recovery (if its not too much to ask for).
Lastly, our 3f8 neighbour Elizabeth also had a somewhat uneventful cycle 3 of 3f8. I'm praying that both Elizabeth and Charmaine will be HAMA negative and will continue their cycle 4 together, as always!
Read a phrase last week - Life's a climb but the view is great. I'm still climbing, holding on to the thought that I'm gonna reach the top of the mountain one day - where the view is gonna be all worth it.
I shall end this for now and wishing everyone good health and happiness. Take good care.
Today's the date of the HAMA test results (NY date)... Can't sleep. Tried calling NY but there was no answer.
Cynthia, Charmaine and Jase have been fine the past few days. Their internet's down so there was minimal correspondence. Everything's down... lift's down... spirits were a little down but Cynthia assured that all's still ok.
For parents going through 3F8, it is always a torn between whether they want pain to be felt by the loved ones or not.
Many a times, kids are nearly lost during 3F8, yet when there is no pain, the same will apply.
round 3 of 3f8 had been a breeze for Charmaine. Almost too perfect on the last day. Yes she felt pain on the first four days. However, on the fifth, there was nothing.
Not a good sign, for it means, her body has develop resistance to 3F8, fighting against it, rendering the treatment useless. No, we do not want that to happen. Remember that the more the better for 3F8.
Her blood test will be on 29th october, please pray for her that she will never get HAMA positive. Have mercy on the pain but do not remove the pain entirely.
Thank you all for she will need this prayer big time.
Strong as she is, she tries to crack a few jokes and whine about how much she wants someone to be there to play with her. After 5mins with Princess, she handed the phone to Cyn Mommy and pretty much was pain throughout the left over 11ml of dosage.
After her morning treatment, she still has the energy to pop downstairs for the tuition. As Jase has been out of school for many months, his long summer break has finally ended. RMH has so kindly arranged tuition for Jase and to our surprise, Jase love granny alot!
Being close to her korkor, Charmaine insisted getting changed and sit through the tuition, colouring her apple while granny comes over for tuition.
In all, this round, is still manageable for our super Cyn Mommy.
We just came back from the hospital after completing Day 1 of 3f8 (3rd cycle). Both the kiddos are now sound asleep...
Its a long day as compared to our usual discharge around 2pm. Nonetheless, Day One(1)s are always much longer because all the kids have to do a CBC (finger prick/stick) to check the blood counts and neutrophils. Also we have to be seen by a Nurse Practitioner who will certify if the kid is good to go ahead to receive the treatment for that week.
Today, we were pretty much the last one to receive the 3f8 infusion... started about 1.30pm. Jase was really tired and sleepy. Thankfully, Iris arranged to come by almost every monday knowing its the toughest. (Thank you Iris! Really appreciate your help and very grateful)
To keep the long story short, Char did wonderful today!!! Of course, she didnt escape totally unscathed... BUT I consider today a miraculous Day 1!!! Our little feisty princess slept through almost the entire infusion except for the last 10ml (which was probably the last 5mins) where she woke up crying in pain. They had to give her 2 rescue of pain relief med - Dilaudid (which was 1 less than the maximum dosage she had received). She fell asleep after the 2nd rescue was given and slept throughout the flush of another 20mins.
Despite the pain she experienced today, I am certainly most willing to live with the side effects of today. :-)
Baby girl, you are a superstar today. Awesome. You are mummy's pride. :-)
Had to ruse her up at about 3.45pm as Jase was simply too tired. She wasnt even cranky!!! Oh god, what did we do right today? I wish for everyday of 3f8 to be like today!!!
I have to go get the chores done before the kiddos wake up...
Praying that everyone has an awesome day like we did.
THANK YOU THANK YOU. I cannot be more grateful for the prayers that worked the miracle today!
Stephanie has kindly hosted a cookie-session with the kids to prepare them for trick or treat.
Here's the video
Hama test - Negative!
Love, Charlene
~~~~~~~~~~~~~
Some post cookie-making session photos to add
"Ring ring"
The Skype telephone rang and I was greeted by very healthy-looking Cyn and Jase.
Jo: "Hey! The colour looks so much warmer!"
Cyn: "Yes, we were experimenting with the colour contrast and lighting cos we always look so pale and ghostly on Skype."
blablabla...
Jo: "Where's Charmaine?"
Cyn: "She's busy doing something. I dunno what."
Then Charmaine popped in to complete the family portrait. (As seen above in the bottom 2 pix.)
Then it was her turn to have some screen time.
I didn't know what she did with the colour settings but she slowly disappeared into whiteness. Kinda reminded me of an angel.
As we always have difficulty hearing one another via Skype, we've to use the phone to talk. While the adults talked over the phone. The kids would be making funny faces at the camera and asking if I could see or hear them as well.
Then, they would pester mommy for them to have the phone...
My little princess Char just swallowed her 14th dose of Accutane with ease and delight! YAY! I'm just so glad that we have completed the 14 doses of Accutane!
She woke up this morning with a terrible nose bleed, blood on her pyjamas, pillowcase, bed sheet... I got a shock. Got her to sneeze out her mucus and it was just blood and more blood.
I contemplated calling the hospital but decided it was pointless. It was a Sunday and there are only fellows around at the Urgent Care. I was already taught that nose bleed was one of the common side effects due to the dryness and we have already completed 12 doses out of the prescribed 14... I have faith that Charmaine would finish unscattered. After all, she even enjoyed the taste which I was told that it would be an uphill task getting some kids to even put it into their mouth!
THANK YOU for the prayers. It must have helped. I am very certain all your prayers have brought us this far! Please keep it coming. Because of your prayers, Charmaine has completed 2 rounds of 3f8, radiation and her first cycle of Accutane!!!
Her nose bleed finally stopped an hour later and I gave her the Accutane as prescribed. I told her to drink lots and lots of water to prevent the bleeding again and she smartly obliged.
Couldnt help contain my excitement even though its just a 'mere' completion of 14 doses of Accutane. Its simply another milestone for me and the feisty team. :-)
Silly I know, but I just want to share with you this joy I am feeling right now!!! I am keeping my fingers crossed, hoping that there will be NO MORE nose bleeding!
Now that Accutane is completed, in the next few days, if her HAMA results turn out normal (which means NO HAMA), than Charmaine will start her GM-CSF injection (which I personally feel is as daunting as the 3f8 itself - irritation on her insaflon area, pain, redness, itch and swell)on wednesday and she will receive her 3rd round of 3f8 next week!!!
Gosh... its already the 3rd round... Time flies!
In the mean time, please keep those prayers coming for NO HAMA!!!
THANK YOU everyone!
We appreciate it sincerely, from the bottom of our hearts.
So I typed and re-typed this many many times... but I dont know how to start this entry.
I was going to write about our cookie baking session at Stephanie's house but I checked my email and received an email which saddens me greatly. Another NB child. Another Stage 4. Another devastating mother.
I really cannot bring myself to even write about what went on last Sunday anymore...
It is no secret that I am a receiver of many help and is still in the process of receiving help from kind souls everywhere. In the most ironical way, I seem to be the most inappropriate person to say that I want to help but I do.
3 weeks ago when Charmaine went in for her Bone Marrow Biopsy, I saw Dr Kushner. I dont know what came over me but I decided to let the words flow out of my mouth (even though I know it is probably very silly). I asked Dr Kushner, "Is there any way I can bring the antibody back to Singapore?" Dr K let out a big laugh and had a smile on his face which seemed to say "Just what this ignorant young lady is thinking here!?!?" Than he went on to say, "impossible, we dont even produce enough for our patients here." Than I went on to probe further, "I remember you said that the drug formula has already been sold to a drug manufacturing company who is looking to commercially produce them. Maybe I can find out more?" He laughed again and said maybe Dr Cheung would be able to talk to you more.
So that was it. I felt silly. And I felt stupid. And to make matters worse, that day wasnt a good day either. So I just got more depressed with my own stupidity. And hence I decided to just shut up and not probe anymore. Nonetheless, the thought is always lingering at the back of my mind...
Bumped into Dr Kushner again 2 weeks ago and first thing he asked was "So did you manage to get your special package (antibody 3f8) back to Singapore yet?" I was embarrased and replied, "Was it really that funny? I know I am being silly but I just had to ask." I know he meant no harm at all. And I agree that he has every right to laugh because I am indeed being very silly.
The receipt of this email once again reminded me of how close and yet how far I am to being able to pay forward all the kindness that has been showered onto us.
It is frustrating. Many neuroblastoma kids in Asia who can afford a little bit are probably in Singapore since we have one of the best surgeons and yet the higher hopes eludes everyone else who simply cannot afford the USD $350,000 upfront deposit.
I have never been a science student in my entire life and the best medical knowledge I have is feeding medication to my kids when they have a fever or flu. Charmaine's experience has taught me more medical knowledge than any textbooks could teach me. Yet, what I know doesnt even amount to a fraction of what most NB parents in the New York knows.
I know that 3F8 is a clinical trial drug. But hey, talk to the parents in New York and they will tell you that if 3f8 is not effective, why is the rest of the states using antibody treatment as well?!?! (CH14.18 is also an antibody which rides on the results of its predecedant drug, 3F8 - pardon my very layman explanation here).
Be it clinical or not, it gives way better hope than the opposite of having none. I am in a NB group in FB which is based in UK and they have recently organised a conference for which doctor(s) from MSKCC will participate. Because one particular parent who has lost their child to neuroblastoma is fighting very hard to convince other parents of NB kids in UK that 3f8 is indeed very good.
Am I begining to sound like a salesperson here? I guess what I want to say is that whether 3f8 is good or not, it is simply not fair when most of the other unfortunate kids do not even have an option to reject the treatment. Because the treatment is not even available to them in the first place!
And yes, I feel bad. I feel guilty that my little girl has the chance to be here whereas the other ones couldnt.
I know being a one man show, I cannot accomplish anything at all. I can only say, I can only wish. I have no idea how. I have no connections. I am not even in the medical profession to begin with! I do not know what the laws in Singapore state.
I do know that there are many kind souls out there.
Maybe I am just remotely hoping that amongst one of the many kind souls out here, someone may have an idea. Maybe, just maybe someone would be kind enough to point me to a direction... I know that it may take years and years before we can even come close to having the same percentage of survival in Singapore... And I know that maybe some of the doctors may have already been looking into doing whatever they can...
But I feel oblige to mention it here.
As much as I am still fighting my little girl's battle with this terrible monster, I am sure that Charmaine would want other kids like her to have the same chance as her too.
Maybe, just maybe... if there's anything you think I am in a better position to find out about... please do not hesitate to email me.
I do not talk to the other NB parents as much as I wish, or as much as I should.
I am always hanging out with my 2 kiddos and living in our own little world because I am tired, because I am drained... because I dont dare, because I just dont like to talk much anymore...
Although I should focus my every ounce of energy on my kiddos. But we are here today because of everyone of you who helped in one way or another. I may never be able to repay this gratitude to each one of you personally, but I want to pay it forward... I dont know how but I really want to...
I'm going to end this here as my heart is still heavy after receiving that email.
I am utterly sorry for writing such a depressing note... forgive me.
In the earlier days, Charmaine resists the fact that she has to take medicine orally as some of them tasted real bad. To encourage her, we usually will take video, and clap our hands while she is consuming it. Almost fell asleep while playing with her, called her this morning, in time for her "yellow medicine". As Mommy Cyn has put in, "it is a real tedious job preparing this medicine" Finally, the show is up! =D Of course, our strong Charmaine knows very well, the monster is kept at bay and she took in the medicine in less than 2 secs. Look at her big smile.
Today they had gone to MSKCC for her HAMA test and she whined about how the needle at her "circle bone" was hurting her. Apparently, based on what future-nurse Charmaine says, the anethestic was applied off center, so it hurts her while the needle was poked in and out. So she proudly declared that she cried for awhile. |||
Our babies have also been eating so much recently and probably it was due to the weather turning cold. Charmaine take in cold very well, but she claimed she wore two layers while Jase had three on. Then, came the long list of what they ate for dinner -Pork, cauliflower, brocoli, mushrooms, soup, the red-thing-gonggong-put-in-the-soup (gou qi zi) and alot alot of rice.
