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.
Love, Charlene
Mixed Emotions...
Sunday, November 15, 2009
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.
Praying for good health for everyone.
Love,
Cyn mommy
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.
Praying for good health for everyone.
Love,
Cyn mommy
A Sweet 16 letter
Sunday, November 8, 2009
~ Extracted from an email whom Princess Char has touched her life with~
Hello Cynthia Mommy,
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.
Thanks and May God Bless You:D
With Much Love,
(Omitted)
Love, Char
(Omitted)
Love, Char
Cheers to Mee Sua
Saturday, November 7, 2009
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...
Have a great weekend all!
Love, Char
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...
Have a great weekend all!
Love, Char
ALL CLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Charmaine has cleared all the scans!
WOOHOO!!!
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. =)
Love,
Jolene
WOOHOO!!!
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. =)
Love,
Jolene
SCANXIETY
Friday, November 6, 2009
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:
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
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 am OKAY.
Wednesday, November 4, 2009
Yes, Charmaine HAMA positive.
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. :-)
Love,
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. :-)
Love,
Cyn mommy
Our princess is Hama positive
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.
Love, Charlene
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.
Love, Charlene
Over the weekend
Hello everyone,
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.
Love,
Cyn Mommy
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.
Love,
Cyn Mommy
Photos finally!
Saturday, October 31, 2009
The photos earlier were pretty limited to screenshots from skypes and msns and finally, clear high quality pictures of our princess and family!
Apple Picking Trip with Uncle Brendon and their new friends - Brendon Junior and Patrick - Boss of Auntie Stephanie:
The weather has turned cold for the kids. I think our princess has grown alot there!
Kiddos first halloween!
Our feisty princess waiting for infusion for 3F8..
Love, Charlene
Apple Picking Trip with Uncle Brendon and their new friends - Brendon Junior and Patrick - Boss of Auntie Stephanie:
The weather has turned cold for the kids. I think our princess has grown alot there!
Kiddos first halloween!
Our feisty princess waiting for infusion for 3F8..
Love, Charlene
Apologies for a delayed update...
Friday, October 30, 2009
Hi everyone,
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.
Love,
Cyn mommy
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.
Love,
Cyn mommy
For those who come in here every day for updates
To our concerned readers and to all who 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.
PLEASE PLEASE PLEASE pray for negative HAMA.
Love,
Jolene
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.
PLEASE PLEASE PLEASE pray for negative HAMA.
Love,
Jolene
Gather your prayers...
Sunday, October 18, 2009
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.
Love, Charlene
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.
Love, Charlene
Round 3 Day 2 3F8
Wednesday, October 14, 2009
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.
Counting down to the days in New York! WHEE~
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.
Counting down to the days in New York! WHEE~
A miraculous Day 1 of 3f8 for us at MSKCC... so thankful
Tuesday, October 13, 2009
Hi everyone,
I am just going to write a very short update.
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!
Love,
Cyn mommy
I am just going to write a very short update.
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!
Love,
Cyn mommy
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