Charmaine's fever was high up 38.3degree this morning and Cyn rushed her down to A&E. After a 7 gruelling hours in the A&E ward carrying Char on her arms, they finally had the bed for Char in the Ward 88.
She has zero immunity right now, fighting on the fever that stil hovers a high 37 to low 38. But our very strong princess is still asking for her Char Siew Rice specially cooked and delivered by favourite gong-gong. A mouthful by a mouthful, it warms our heart seeing her eat finally. First meal for the day, and all thanks to the entire day wait in A&E without a good rest in the afternoon.
Back home alone, Jase had developed a fever and getting thinner by the day.
Keep your prayers on.
Love, Charlene
The date is set
Charmaine was discharged from hospital on Sunday after completing her 4th chemo.
We went back to NUH for outpatient consultation today and she needed a Haemoglobin transfusion. This is her 3rd Haemoglobin transfusion since Feb, my little princess has become a little medical expert herself. She knows that there are 2 types of transfusion, one being the blood which is longer and the other is platelets which is faster. As usual, she was initially slightly upset at having to be poked but quickly settled down knowing that we wont have to stay overnight. As her neutrophils is at the all time low, her temperature has been fluctuating. It went up to 37.8 and came down to 37.3 and went up again to 37.7. Charmaine and I continued singing and playing while at the back of my mind, I couldnt help worrying and whether we would have to admit instead of going home as what I promised her earlier. Thankfully, it went down again to 37.2 and we were allowed to go home. While waiting for taxi, I could feel her temperature creeping up slowly, so I just kept praying non stop hoping that it was merely a reaction from the transfusion and not any infection.
Because the next couple of weeks are very precious to me, or rather, to Charmaine. She has about 3 more weeks before her surgery. I need and I hope to keep her at home, infection free...
so that she can play all she wants without worrying about the needles dislodging... so that she can eat all she craves to pile up for the days that she cannot consume...
so that she can fight all she likes with Jase to make up for the days that Kor Kor is not able to visit her...
18th June 2009
On the one hand, I am glad we are closer to this hurdle, because its one of the important hurdles to cross for Charmaine and us. However, its not exactly something a mother would wish for her own baby. Yes, I want that monster our of her. Any quicker, the better. I just want all of that monster out of her totally. It should never even have gotten anywhere near my girl in the first place!
I know Charmaine is in good hands with Dr Chui and the team... but I dont even dare to imagine how would I be able to bring myself to see my Charmaine after the surgery!...
I know I should smile when I see her after her surgery. Because I have to tell her that you have done a wonderful job, my brave little girl! You have done it!
Indeed, this is what I am going to make myself do it, instead of crying. "Baby, I know you dont like to see mummy cry. So here, I am going to give you my word that I wont cry when I welcome you out of that operating theatre because its supposed to be a joyous thing that we have made it this far and because you dont like to see mommy cry and because I am not allowed to cry when you need me most".
Why am I writing all these nonsense when its 3 weeks away! Sometimes, I wish I can just switch off my mind!!!
Need to just swing off to something else to get this off my mind for a bit.
Like to say thank you to a few friends that has been helping me too much over these last months...
THANK YOU
Jolene and Kehang - for everything. Done too much for me to even name any [Happy Belated Birthday!]
Alexis and Johnny - for all the help
Josse - for being my rational mind
Charlene - our pretty, kind playmate who is always on stand by
Micky - for driving us up and down
Angela - for always being around
Emily, Christine and Fanny - for all the weekends burned
YY, Leonard and Vivian - for being so kind even we were strangers before this
Jan, Louisa, Keli and Jester - for rushing over when you first heard
Jason, Diane, Vivian - for being such kind neighbours
James and Caryn - for being so concerned and helpful
Kevin - for being our #1 COO and being so generous
Tim - for being so sweet
Danny and Dan - for always asking
Ken Wee and Rowena - for being around
Geraldine and Pei Ling - for being such wonderful playmates
Sibil and family - for supporting me
Meishi and family - for supporting me from afar
Shin Yi - for being the angel who led me to Dr Aung
Pansy - for you know what
Priscilla - for the cleaning products
Rachel and family and friends and colleagues
Jasmine, Yaxuan, Boon Siong...
The NGNBN Team from IDA
DEL Ex colleagues
Too many many many others...
Please please please forgive me should I not mention you here... Doesnt mean I have forgotten you, I just have way too many things at the back of my mind now...
Writing to Dr Yu, logistics to check for NY so that Char doesnt miss the critical timeline to receive the drug, How about Jase, How long do we need to stay in NY... Lodging, money... Jase's spelling, Jase not eating well...
Did I tell you I am actually very afraid to bring Charmaine all alone myself to New York. Did I also tell you that I am not confident I can do it... Did I also tell you that the treatment in NY is very tough and painful for my little girl? The thought of the pain makes me question myself every night am i doing the right thing?
I have to go check on her fever again... My bag is always packed, ready to leave anytime when it reaches to 37.8
Goodnight everyone.
Love,
Cyn mummy
We went back to NUH for outpatient consultation today and she needed a Haemoglobin transfusion. This is her 3rd Haemoglobin transfusion since Feb, my little princess has become a little medical expert herself. She knows that there are 2 types of transfusion, one being the blood which is longer and the other is platelets which is faster. As usual, she was initially slightly upset at having to be poked but quickly settled down knowing that we wont have to stay overnight. As her neutrophils is at the all time low, her temperature has been fluctuating. It went up to 37.8 and came down to 37.3 and went up again to 37.7. Charmaine and I continued singing and playing while at the back of my mind, I couldnt help worrying and whether we would have to admit instead of going home as what I promised her earlier. Thankfully, it went down again to 37.2 and we were allowed to go home. While waiting for taxi, I could feel her temperature creeping up slowly, so I just kept praying non stop hoping that it was merely a reaction from the transfusion and not any infection.
Because the next couple of weeks are very precious to me, or rather, to Charmaine. She has about 3 more weeks before her surgery. I need and I hope to keep her at home, infection free...
so that she can play all she wants without worrying about the needles dislodging... so that she can eat all she craves to pile up for the days that she cannot consume...
so that she can fight all she likes with Jase to make up for the days that Kor Kor is not able to visit her...
18th June 2009
On the one hand, I am glad we are closer to this hurdle, because its one of the important hurdles to cross for Charmaine and us. However, its not exactly something a mother would wish for her own baby. Yes, I want that monster our of her. Any quicker, the better. I just want all of that monster out of her totally. It should never even have gotten anywhere near my girl in the first place!
I know Charmaine is in good hands with Dr Chui and the team... but I dont even dare to imagine how would I be able to bring myself to see my Charmaine after the surgery!...
I know I should smile when I see her after her surgery. Because I have to tell her that you have done a wonderful job, my brave little girl! You have done it!
Indeed, this is what I am going to make myself do it, instead of crying. "Baby, I know you dont like to see mummy cry. So here, I am going to give you my word that I wont cry when I welcome you out of that operating theatre because its supposed to be a joyous thing that we have made it this far and because you dont like to see mommy cry and because I am not allowed to cry when you need me most".
Why am I writing all these nonsense when its 3 weeks away! Sometimes, I wish I can just switch off my mind!!!
Need to just swing off to something else to get this off my mind for a bit.
Like to say thank you to a few friends that has been helping me too much over these last months...
THANK YOU
Jolene and Kehang - for everything. Done too much for me to even name any [Happy Belated Birthday!]
Alexis and Johnny - for all the help
Josse - for being my rational mind
Charlene - our pretty, kind playmate who is always on stand by
Micky - for driving us up and down
Angela - for always being around
Emily, Christine and Fanny - for all the weekends burned
YY, Leonard and Vivian - for being so kind even we were strangers before this
Jan, Louisa, Keli and Jester - for rushing over when you first heard
Jason, Diane, Vivian - for being such kind neighbours
James and Caryn - for being so concerned and helpful
Kevin - for being our #1 COO and being so generous
Tim - for being so sweet
Danny and Dan - for always asking
Ken Wee and Rowena - for being around
Geraldine and Pei Ling - for being such wonderful playmates
Sibil and family - for supporting me
Meishi and family - for supporting me from afar
Shin Yi - for being the angel who led me to Dr Aung
Pansy - for you know what
Priscilla - for the cleaning products
Rachel and family and friends and colleagues
Jasmine, Yaxuan, Boon Siong...
The NGNBN Team from IDA
DEL Ex colleagues
Too many many many others...
Please please please forgive me should I not mention you here... Doesnt mean I have forgotten you, I just have way too many things at the back of my mind now...
Writing to Dr Yu, logistics to check for NY so that Char doesnt miss the critical timeline to receive the drug, How about Jase, How long do we need to stay in NY... Lodging, money... Jase's spelling, Jase not eating well...
Did I tell you I am actually very afraid to bring Charmaine all alone myself to New York. Did I also tell you that I am not confident I can do it... Did I also tell you that the treatment in NY is very tough and painful for my little girl? The thought of the pain makes me question myself every night am i doing the right thing?
I have to go check on her fever again... My bag is always packed, ready to leave anytime when it reaches to 37.8
Goodnight everyone.
Love,
Cyn mummy
Merry May 2009
Friday, May 29, 2009
Happy moments in May 2009.
- Cyn mummy walking the path strongly with Princess Chubby
- Finally an evening out to the park.
- Jase Birthday cake from Goodwood Hotel (courtesy of Uncle Micky)
- Secret Receipt Chocolate Banana cake for the pretty mummy
- Jase making monkey face
- This is what you get, when Jase holds a DSLR, and Charmaine the model.
- Quan Jia Fu. Even Cola is in!
- Building sandcastle
- Jase took his own feet with DSLR.
- GodMa cutting cake with Jase in BrightKids
- Licking off the durian cake. Charmaine doesnt take Durian. =X
- In the envy of his classmates eyes, Jase is finally 5.
- DSLR shot by Charmaine on her own hospital bills
- The view by Charmaine through DSLR
- Jase with the pretty babes. Charmaine decides to sulk.
- Fooling around with the knife
- Charmaine BMTroom through free upgrades! She was showing us her dance steps.
- Either taken by Jase or Charmaine. The camera was too heavy when strapped around their neck.
- Cheeky Charmaine hiding in the cave.
- Jase drew a picture of shark/whale
- Again, either byJase or Charmaine. Their desk.
- Taken by Jase. I was trying to figure out, was it an artistic shot captured, or simply too heavy for him to capture a straight photo. =)
- Our feisty princess decided to sit on the table
- She also loves our butts.
- Been whining about why her birthday cant come before Jase, she helps in cutting the cake.
.
It is very amusing to see how the kids struggle to have the weight of the big fat camera strap around their neck and all the photos turned out slanted. While most are blurred out by them, these are the very photos that are taken, from their point of view.
Round 4 Chemo is completed and tomorrow will be the 10th day. Fever has been shunning away from Charmaine and let's hope the same.
Everytime she visit NUH for a blood test, she knows that she will be getting her finger pricked. So our cheeky princess will choose which finger before getting poked. Today was no exception.
Me: "Charmaine, so which finger the nurse prick today?"
Char: "Pointer. Mummy, this is left or right?"
Cyn: "Right"
Char: "Right pointer finger"
Me: "So did you cry and scream today?"
Char: "I shout very loud but no water come out leh"
Adorable cutie that continues to cheer us up in our gloomy workplace.
- Posted by Charlene
- Cyn mummy walking the path strongly with Princess Chubby
- Finally an evening out to the park.
- Jase Birthday cake from Goodwood Hotel (courtesy of Uncle Micky)
- Secret Receipt Chocolate Banana cake for the pretty mummy
- Jase making monkey face
- This is what you get, when Jase holds a DSLR, and Charmaine the model.
- Quan Jia Fu. Even Cola is in!
- Building sandcastle
- Jase took his own feet with DSLR.
- GodMa cutting cake with Jase in BrightKids
- Licking off the durian cake. Charmaine doesnt take Durian. =X
- In the envy of his classmates eyes, Jase is finally 5.
- DSLR shot by Charmaine on her own hospital bills
- The view by Charmaine through DSLR
- Jase with the pretty babes. Charmaine decides to sulk.
- Fooling around with the knife
- Charmaine BMTroom through free upgrades! She was showing us her dance steps.
- Either taken by Jase or Charmaine. The camera was too heavy when strapped around their neck.
- Cheeky Charmaine hiding in the cave.
- Jase drew a picture of shark/whale
- Again, either byJase or Charmaine. Their desk.
- Taken by Jase. I was trying to figure out, was it an artistic shot captured, or simply too heavy for him to capture a straight photo. =)
- Our feisty princess decided to sit on the table
- She also loves our butts.
- Been whining about why her birthday cant come before Jase, she helps in cutting the cake.
.
It is very amusing to see how the kids struggle to have the weight of the big fat camera strap around their neck and all the photos turned out slanted. While most are blurred out by them, these are the very photos that are taken, from their point of view.
Round 4 Chemo is completed and tomorrow will be the 10th day. Fever has been shunning away from Charmaine and let's hope the same.
Everytime she visit NUH for a blood test, she knows that she will be getting her finger pricked. So our cheeky princess will choose which finger before getting poked. Today was no exception.
Me: "Charmaine, so which finger the nurse prick today?"
Char: "Pointer. Mummy, this is left or right?"
Cyn: "Right"
Char: "Right pointer finger"
Me: "So did you cry and scream today?"
Char: "I shout very loud but no water come out leh"
Adorable cutie that continues to cheer us up in our gloomy workplace.
- Posted by Charlene
Bone Marrow result
Thursday, May 21, 2009
"
A piece of hopeful news. Char's bone marrow is cleared of cancer cells except for one site where not enough sample size is taken. They will have to do another bone marrow biopsy during surgery. Thank you all for e prayers. Keeping fingers crossed.
"
- By Cynthia 21st May 2009 10:43am
A piece of hopeful news. Char's bone marrow is cleared of cancer cells except for one site where not enough sample size is taken. They will have to do another bone marrow biopsy during surgery. Thank you all for e prayers. Keeping fingers crossed.
"
- By Cynthia 21st May 2009 10:43am
Thank you NUH for granting Jase's wish
Today (or rather yesterday since it's past midnight) was Jase's birthday.
As stated in the previous post by Charlene, a mysterious Mr M sent an email to NUH requesting for Jase to be allowed to visit Charmaine as that was his birthday wish.
Not only was Jase's wish granted, a team of NUH staff actually gathered together outside the ward to sing Jase a birthday song and presented him with a card, a balloon and a gift.
Jase was so shy seeing all the smiley strangers that he hid behind por por.
What the NUH staff did not see was how Jase tore the wrapper eagerly after they had left.
That's our real Jase!
Charmaine also had a card -- a get well card.
Since our little chubby princess had got a mask on, cyn mummy and jase kor kor decided to cover their mouths too.
We don't know if any of you would be reading this. Nevertheless, thank you to the NUH staff involved for taking precious time off your busy schedule to arrange a mini celebration for Jase. Charlene and I are sorry for being a little off schedule as we had to pick Jase up from school. Hope that didn't disrupt anything. It was really very sweet and thoughtful of all of you. Jase got to see his dear mei mei and Charmaine got to see her beloved kor kor.
Love,
Jolene on behalf of Cynthia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Charmaine, you're really a brave little princess. Continue fighting the bad monster with mummy in the hospital. Saturday would arrive very soon and it'll be home sweet home for you.
Taken on 15th May -- Day 1 of 4th chemo
P/S: Please inform me should there be a need to remove any photos.
As stated in the previous post by Charlene, a mysterious Mr M sent an email to NUH requesting for Jase to be allowed to visit Charmaine as that was his birthday wish.
Not only was Jase's wish granted, a team of NUH staff actually gathered together outside the ward to sing Jase a birthday song and presented him with a card, a balloon and a gift.
Jase was so shy seeing all the smiley strangers that he hid behind por por.
What the NUH staff did not see was how Jase tore the wrapper eagerly after they had left.
That's our real Jase!
Charmaine also had a card -- a get well card.
Since our little chubby princess had got a mask on, cyn mummy and jase kor kor decided to cover their mouths too.
We don't know if any of you would be reading this. Nevertheless, thank you to the NUH staff involved for taking precious time off your busy schedule to arrange a mini celebration for Jase. Charlene and I are sorry for being a little off schedule as we had to pick Jase up from school. Hope that didn't disrupt anything. It was really very sweet and thoughtful of all of you. Jase got to see his dear mei mei and Charmaine got to see her beloved kor kor.
Love,
Jolene on behalf of Cynthia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Charmaine, you're really a brave little princess. Continue fighting the bad monster with mummy in the hospital. Saturday would arrive very soon and it'll be home sweet home for you.
Taken on 15th May -- Day 1 of 4th chemo
P/S: Please inform me should there be a need to remove any photos.
Charmaine on 4th Round of Chemo
Tuesday, May 19, 2009
She is starting her 4th round of chemo tonight and here's a photo of her and the heart she made this afternoon while waiting for the chemo to start tonight. This round of chemo will be the same as the 1st and 2nd. NUH do not do the same as KKH, so her left hand is different from previous. Still, this is our princess. She calls herself "chubby princess" right now. =)
NUH has visitor restriction and kids below 12 are not allowed to enter.
Happy Birthday Jase Jase. Mei mei and mummy are all fighting with the monster in NUH but they still love you the same!
Love, Charlene
-Edited-
thanks to the mystery M person who wrote in to NUH to grant Jase the short vist to see little Char!
BIG THANKS by Cynthia
NUH has visitor restriction and kids below 12 are not allowed to enter.
Happy Birthday Jase Jase. Mei mei and mummy are all fighting with the monster in NUH but they still love you the same!
Love, Charlene
-Edited-
thanks to the mystery M person who wrote in to NUH to grant Jase the short vist to see little Char!
BIG THANKS by Cynthia
Health Status on Charmaine
Friday, May 15, 2009
Friday 15th May 2009
Update by Cynthia on SMS @ 20:21
"
Char is discharged at 5pm. She's doingbetter than the first biospy, wasn't as freaked out when she touched the plasters. Complained of pain once so far when we were getting ready to come home. Now, we have to make sure the wounds aren't infected and pray real hard for bone marrow results next week to show no cancer cells. Doc says one difficulty is alot of kids' bone marrow do not clear even after chemo. 4th chemo is scheduled on tues.
Thanks.
"
Love, Charlene
Update by Cynthia on SMS @ 20:21
"
Char is discharged at 5pm. She's doingbetter than the first biospy, wasn't as freaked out when she touched the plasters. Complained of pain once so far when we were getting ready to come home. Now, we have to make sure the wounds aren't infected and pray real hard for bone marrow results next week to show no cancer cells. Doc says one difficulty is alot of kids' bone marrow do not clear even after chemo. 4th chemo is scheduled on tues.
Thanks.
"
Love, Charlene
Char sedated for bone marrow biospy
Friday , May 15 2009
After three rounds of chemo, and a long wait, Char's neutrophils still remains as 0.84. Ideally, she needs 1 to do this. the doctor gave a go ahead for bone marrow, but chemo will be delayed. In this case, Cyn and Char will be missing Jase birthday celebration on May 20th in school.
Nonetheless, the girl is very strong.
Cyn sms on 10:58:
" Just went in. She was terrified. Cried non stop. When they gave the sedation, she laughed loudly. Freaked me out. Wanna cry so badly everytime i see her so terrified :-( "
Apparently, the nurses said kids get excited when the sedation is kicking in.
At 11:42, Cyn sent the MMS below. Our girl is out. But still sedated. "Glad is all over"
After three rounds of chemo, and a long wait, Char's neutrophils still remains as 0.84. Ideally, she needs 1 to do this. the doctor gave a go ahead for bone marrow, but chemo will be delayed. In this case, Cyn and Char will be missing Jase birthday celebration on May 20th in school.
Nonetheless, the girl is very strong.
Cyn sms on 10:58:
" Just went in. She was terrified. Cried non stop. When they gave the sedation, she laughed loudly. Freaked me out. Wanna cry so badly everytime i see her so terrified :-( "
Apparently, the nurses said kids get excited when the sedation is kicking in.
At 11:42, Cyn sent the MMS below. Our girl is out. But still sedated. "Glad is all over"
Comprehensive websites on 3F8
Thursday, May 14, 2009
Dear all,
Many of you have been asking many questions -- why treatment in Singapore is not on our list, why must it be New York, is that the only alternative, why such a huge amount etc.
Charlene has explained in this post:
Updates on Charmaine and Jase
3F8 has been used in clinical trials for neuroblastoma for more than 20 years and is a treatment for high-risk neuroblastoma. Currently the only places 3F8 is available is in the US at Memorial Sloan Kettering Cancer Center and in Hong Kong.
For added info about 3F8, the 3 websites below provide very comprehensive info in Q&A. For the layman, don't worry. Even medical knowledge noob like me could understand and interpret the info quite well.
Sloan Kettering Cancer Center
http://www.mskcc.org/mskcc/html/3215.cfm
What is 3F8?
http://www.paccgroup.org/faq.html
What is 3F8 and why funding is necessary?
http://www.graceoughtoncancerfoundation.org/loneliestroad/3F8.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please direct your messages to:
1) ourfeistyprincess@gmail.com
2) wall or discussion forum on Facebook group "Our Feisty Princess Charmaine Lim"
All messages directed to the above would definitely be read by Cynthia, Charlene or myself. Please refrain from sending pte msgs to us on Facebook as we would prefer the messages to be more transparent.
Thank you very much!
Regards,
Jolene
Many of you have been asking many questions -- why treatment in Singapore is not on our list, why must it be New York, is that the only alternative, why such a huge amount etc.
Charlene has explained in this post:
Updates on Charmaine and Jase
3F8 has been used in clinical trials for neuroblastoma for more than 20 years and is a treatment for high-risk neuroblastoma. Currently the only places 3F8 is available is in the US at Memorial Sloan Kettering Cancer Center and in Hong Kong.
For added info about 3F8, the 3 websites below provide very comprehensive info in Q&A. For the layman, don't worry. Even medical knowledge noob like me could understand and interpret the info quite well.
Sloan Kettering Cancer Center
http://www.mskcc.org/mskcc/html/3215.cfm
What is 3F8?
http://www.paccgroup.org/faq.html
What is 3F8 and why funding is necessary?
http://www.graceoughtoncancerfoundation.org/loneliestroad/3F8.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please direct your messages to:
1) ourfeistyprincess@gmail.com
2) wall or discussion forum on Facebook group "Our Feisty Princess Charmaine Lim"
All messages directed to the above would definitely be read by Cynthia, Charlene or myself. Please refrain from sending pte msgs to us on Facebook as we would prefer the messages to be more transparent.
Thank you very much!
Regards,
Jolene
Updates on Kids
Wednesday, May 13, 2009
Discussion thread on fund raising for Charmaine is up:
http://www.facebook.com/home.php?#/topic.php?uid=53217919641&topic=8358
We need more ideas, and more funding for our dear Charmaine. I have also approached a public funding,pending for a medical social worker to submit the application form up. However, such fundings are usually only applicable for patients in Singapore, we are hoping that they can understand why we need to send Charmaine to US, since Singapore hospitals could not provide for that.
As for Charmaine, minus the hair drops, you basically cannot see that her body is fighting with the monster right now. She keeps jumping, webcaming, eating, demanding for Yakult, Meiji Milk etc . She has put on quite a bit of weight, and her cheeks are so chubby right now. Very cute. Today, she stopped me from heading home and said I had to go to her place before I can go home. So, almost reaching her place, Char called my cellphone.
"Hello, Charlene jiejie, where are you? Why so late haven come?"
"I am in the lift (ok, i lied), coming up, you count to 10 ok?"
So when I was at the doorstep, the kids shrieked out loud for dont-know what reason. And Cynthia was very amused that Charmaine really counted 1 to 10 by the door after we hanged up the phone.
The treatments by Charmaine also meant that Jase do not have a proper schedule to follow, and studying wasnt the top priority for any of the two kids. Jase has spelling test the next day, learning : Noodles, Cereals and Biscuits. I wonder who he has the genes from, but everytime without fail, when i take a book to him, it takes less than 3 secs to hear him saying, later, tired etc.
But it is also very interesting to see how he skips no opportunity to impress his mum, Cynthia. He stood there, memorising the three words, wrote them down a couple of times, until I was sure that he remembered all, and let him show off to Cynthia. And all it takes, was less than 15mins =D
After that, there is nothing more to say, except, PLAYTIME! We rolled, jumped, curled around the bed and mattresses, until Charmaine's hair was soaking wet.
Till tomorrow then, lovelies!
Love, Charlene
http://www.facebook.com/home.php?#/topic.php?uid=53217919641&topic=8358
We need more ideas, and more funding for our dear Charmaine. I have also approached a public funding,pending for a medical social worker to submit the application form up. However, such fundings are usually only applicable for patients in Singapore, we are hoping that they can understand why we need to send Charmaine to US, since Singapore hospitals could not provide for that.
As for Charmaine, minus the hair drops, you basically cannot see that her body is fighting with the monster right now. She keeps jumping, webcaming, eating, demanding for Yakult, Meiji Milk etc . She has put on quite a bit of weight, and her cheeks are so chubby right now. Very cute. Today, she stopped me from heading home and said I had to go to her place before I can go home. So, almost reaching her place, Char called my cellphone.
"Hello, Charlene jiejie, where are you? Why so late haven come?"
"I am in the lift (ok, i lied), coming up, you count to 10 ok?"
So when I was at the doorstep, the kids shrieked out loud for dont-know what reason. And Cynthia was very amused that Charmaine really counted 1 to 10 by the door after we hanged up the phone.
The treatments by Charmaine also meant that Jase do not have a proper schedule to follow, and studying wasnt the top priority for any of the two kids. Jase has spelling test the next day, learning : Noodles, Cereals and Biscuits. I wonder who he has the genes from, but everytime without fail, when i take a book to him, it takes less than 3 secs to hear him saying, later, tired etc.
But it is also very interesting to see how he skips no opportunity to impress his mum, Cynthia. He stood there, memorising the three words, wrote them down a couple of times, until I was sure that he remembered all, and let him show off to Cynthia. And all it takes, was less than 15mins =D
After that, there is nothing more to say, except, PLAYTIME! We rolled, jumped, curled around the bed and mattresses, until Charmaine's hair was soaking wet.
Till tomorrow then, lovelies!
Love, Charlene
Updates on Charmaine and Jase
Monday, May 11, 2009
I thought I would do an update on the status of Charmaine and Jase.
Her Bone Marrow Biopsy was postponed as mentioned, the numbers of her health status weren't looking good. But it is a stark difference to how our little princess is holding on now.
Her constant jumping around, cycling around the sky garden, non-stop of chattings, all shows no signs of her being .. sick. For those who deemed her as a goner, you are all wrong. Our little princess, is so strong and chirpy, that now, she runs with her buttock shaking. My.. she has put on so much weight, i tell her, I cant carry her for long now. But the thought of next week, for her chemo, of course hurts us. So, we did not stop her for her continuous binging of chocolate milk, soya bean drink, milo, icecream and the what's not.
Now, her favourite is to play with the mattresses and blankets, hiding in the man-made cave with the Dora DVDs and dolls in it. Jase, of course, is her cave companion. Cynthia has no idea how the two kids can stuff themselves in that hot cave, but i guess, that is where they bond.
It has been almost 3 weeks since she last went to the hospital and it gave the kids time to adjust themselves. Now, Jase shows less of a problem and can mix with Charmaine more. There was sibling jealousy for a period of time and we are glad, they arent that obvious now.
The new maid is settling in sllllooowwly but mingled quite ok with the kids. At least, Cyn has a spare pair of hands to help her.
Jase has since, bore the brunt of Cyn's frustration, and Char's tantrums. He is taking it well, but for how long .. who knows? He is too young to understand why the special treatment to Char but let's hope when he turns 5, he can come to understand more.
Jase birthday is in a matter of weeks and let's wish him, Happy Birthday!! =D
---
Some quick information off from my memory right now..
A few of you have asked, why US? Why not in Singapore? For those who have followed the blog, you would have read that there is a clinical trial in US (New York), teaming up with a Hngkong doctor and hospital.
Dr had tried to get this medication that will increase Char's rate to 40-50% (exact figure cant remember), but to no avail. She needs to be a Hong Kong resident, which our dearest is a Singaporean. So no no to that. Hence, the next option, was to go to US. A quick check on the price tag, is USD350K, not including the other living costs which we try not to fret over it rightnow.
In veryvery layman terms, on how I interpret by reading on those medical articles.. there seemed to be two types of drugs out there on clinical trial and this one we are looking at, let's termed it as Drug B, is where Char's Dr is more familiar with on the developments.
The other, as far as I read now, though has gone through to Phase3 ready for commercial, it was pulled back due to some toxicity level.
Drug 3F8 is a 100% movine (mice antibody). In this case, this antibody will attach to a marker to perform antitumour therapy. The marker (GD2) will still be present even after chemo. A good thing. But because 3F8 is mice antibody, there is still a risk that Char's body will react against it. Note that all these are still in clinical trial phase as her age group, survival rates on such is not high.
Well, why not in Singapore?
In Singapore, she can go through all the chemo and surgery, but % will remain low. Based on Dr, only 2 out of 20 survive, and this is not including her age group. For this cancer, kiddos less than 3 years old, are in a much higher chance. Our dear Charmaine will turn 4 this July. She has completed her 3 rounds of Chemo, and 4th is coming up. After this, the plan would be to go through the surgery, and if possible, sending her to New York. Once she is there, the doctor will treat her with 3F8. We have touched base with the hospital and that is how we got the initial guestimate on the pricing.
There are actually alot more groundwork needed to be done before we can be sure of sending her there.
Jolene has also set up a discussion forum in facebook, so you can direct all suggestions there, or through email.
http://www.facebook.com/profile.php?id=741817783&ref=profile#/topic.php?uid=53217919641&topic=8358
---
For those parents who are fighting with their kids right now, hang on to the faith. Your little ones will pull through it.
Love, Charlene
Her Bone Marrow Biopsy was postponed as mentioned, the numbers of her health status weren't looking good. But it is a stark difference to how our little princess is holding on now.
Her constant jumping around, cycling around the sky garden, non-stop of chattings, all shows no signs of her being .. sick. For those who deemed her as a goner, you are all wrong. Our little princess, is so strong and chirpy, that now, she runs with her buttock shaking. My.. she has put on so much weight, i tell her, I cant carry her for long now. But the thought of next week, for her chemo, of course hurts us. So, we did not stop her for her continuous binging of chocolate milk, soya bean drink, milo, icecream and the what's not.
Now, her favourite is to play with the mattresses and blankets, hiding in the man-made cave with the Dora DVDs and dolls in it. Jase, of course, is her cave companion. Cynthia has no idea how the two kids can stuff themselves in that hot cave, but i guess, that is where they bond.
It has been almost 3 weeks since she last went to the hospital and it gave the kids time to adjust themselves. Now, Jase shows less of a problem and can mix with Charmaine more. There was sibling jealousy for a period of time and we are glad, they arent that obvious now.
The new maid is settling in sllllooowwly but mingled quite ok with the kids. At least, Cyn has a spare pair of hands to help her.
Jase has since, bore the brunt of Cyn's frustration, and Char's tantrums. He is taking it well, but for how long .. who knows? He is too young to understand why the special treatment to Char but let's hope when he turns 5, he can come to understand more.
Jase birthday is in a matter of weeks and let's wish him, Happy Birthday!! =D
---
Some quick information off from my memory right now..
A few of you have asked, why US? Why not in Singapore? For those who have followed the blog, you would have read that there is a clinical trial in US (New York), teaming up with a Hngkong doctor and hospital.
Dr had tried to get this medication that will increase Char's rate to 40-50% (exact figure cant remember), but to no avail. She needs to be a Hong Kong resident, which our dearest is a Singaporean. So no no to that. Hence, the next option, was to go to US. A quick check on the price tag, is USD350K, not including the other living costs which we try not to fret over it rightnow.
In veryvery layman terms, on how I interpret by reading on those medical articles.. there seemed to be two types of drugs out there on clinical trial and this one we are looking at, let's termed it as Drug B, is where Char's Dr is more familiar with on the developments.
The other, as far as I read now, though has gone through to Phase3 ready for commercial, it was pulled back due to some toxicity level.
Drug 3F8 is a 100% movine (mice antibody). In this case, this antibody will attach to a marker to perform antitumour therapy. The marker (GD2) will still be present even after chemo. A good thing. But because 3F8 is mice antibody, there is still a risk that Char's body will react against it. Note that all these are still in clinical trial phase as her age group, survival rates on such is not high.
Well, why not in Singapore?
In Singapore, she can go through all the chemo and surgery, but % will remain low. Based on Dr, only 2 out of 20 survive, and this is not including her age group. For this cancer, kiddos less than 3 years old, are in a much higher chance. Our dear Charmaine will turn 4 this July. She has completed her 3 rounds of Chemo, and 4th is coming up. After this, the plan would be to go through the surgery, and if possible, sending her to New York. Once she is there, the doctor will treat her with 3F8. We have touched base with the hospital and that is how we got the initial guestimate on the pricing.
There are actually alot more groundwork needed to be done before we can be sure of sending her there.
Jolene has also set up a discussion forum in facebook, so you can direct all suggestions there, or through email.
http://www.facebook.com/profile.php?id=741817783&ref=profile#/topic.php?uid=53217919641&topic=8358
---
For those parents who are fighting with their kids right now, hang on to the faith. Your little ones will pull through it.
Love, Charlene
I need help
Sunday, May 10, 2009
I thought over, probably a couple hundreds of times wondering how to write this entry. At the end of the day, I still have no idea what to write.
Truth is when I first saw the email sent by Dr Aung on the amount needed to bring Charmaine to New York for treatment, I was shocked. $350,000 is the upfront deposit. I weren’t sure what currency it was in. Sent Jolene and Charlene a text message, ending the message with “I would give up if it is in USD”.
And of course, the bad news never ends.
$350,000 USD.
Half a million Singapore dollars.
How would I ever be able to raise this amount of sum? How do I convince anyone that Charmaine’s life is worth half a million dollars? I don’t know how. I seriously don’t know how. So many times, I want to give up. I don’t know how to think. I don’t know what to think. I don’t want to think. I don’t dare to think.
A week has passed since I received the email and I know I have already procrastinated a week away and made no progress.
I am brought up to think rationally and weigh my decisions against benefits and cost. Rationally speaking, I know fully well that half a million dollars can be better spent on saving thousands of malnourished kids in Africa than on Charmaine who only has a 40-50% chance of survival even with the antibody in New York.
But Charmaine is my daughter. No amount of money can justify how important she is to me. And Jase. Despite Jase’s young age and maturity, I know fully well that he loves his mei mei just as much as I do.
I would do just about anything to save her. I thought about selling my kidney, being a surrogate mom. They may sound stupid and crazy but my conscience feels so much better with me earning that USD $350,000 because I cannot think of any rational reason to convince you to help me save Charmaine.
I really thought of giving up. Its so much more easier and I am so tired.
I don’t want to think about anything anymore. Its easier just remembering the next doctor’s appointment, the next time for medication, the next time to pay the bills and just things I can do without thinking…
I even avoided Jolene and Charlene for a week because I have no answer for them. Their suggestion to go public and seek for help. My permission to allow them to publicise the materials.
Even as I am typing right now, I don’t exactly know what am I doing. I don’t know what I have decided. I don’t know the consequences of me typing this.
The only thing I know for sure is that should anything happen to Charmaine, I would never be able to forgive myself for not trying to fight for Charmaine when all she has to help her is me.
This is the very reason why I am typing this.
Dear friends, please help Jase and me to save Charmaine.
Thank you.
Cynthia
Truth is when I first saw the email sent by Dr Aung on the amount needed to bring Charmaine to New York for treatment, I was shocked. $350,000 is the upfront deposit. I weren’t sure what currency it was in. Sent Jolene and Charlene a text message, ending the message with “I would give up if it is in USD”.
And of course, the bad news never ends.
$350,000 USD.
Half a million Singapore dollars.
How would I ever be able to raise this amount of sum? How do I convince anyone that Charmaine’s life is worth half a million dollars? I don’t know how. I seriously don’t know how. So many times, I want to give up. I don’t know how to think. I don’t know what to think. I don’t want to think. I don’t dare to think.
A week has passed since I received the email and I know I have already procrastinated a week away and made no progress.
I am brought up to think rationally and weigh my decisions against benefits and cost. Rationally speaking, I know fully well that half a million dollars can be better spent on saving thousands of malnourished kids in Africa than on Charmaine who only has a 40-50% chance of survival even with the antibody in New York.
But Charmaine is my daughter. No amount of money can justify how important she is to me. And Jase. Despite Jase’s young age and maturity, I know fully well that he loves his mei mei just as much as I do.
I would do just about anything to save her. I thought about selling my kidney, being a surrogate mom. They may sound stupid and crazy but my conscience feels so much better with me earning that USD $350,000 because I cannot think of any rational reason to convince you to help me save Charmaine.
I really thought of giving up. Its so much more easier and I am so tired.
I don’t want to think about anything anymore. Its easier just remembering the next doctor’s appointment, the next time for medication, the next time to pay the bills and just things I can do without thinking…
I even avoided Jolene and Charlene for a week because I have no answer for them. Their suggestion to go public and seek for help. My permission to allow them to publicise the materials.
Even as I am typing right now, I don’t exactly know what am I doing. I don’t know what I have decided. I don’t know the consequences of me typing this.
The only thing I know for sure is that should anything happen to Charmaine, I would never be able to forgive myself for not trying to fight for Charmaine when all she has to help her is me.
This is the very reason why I am typing this.
Dear friends, please help Jase and me to save Charmaine.
Thank you.
Cynthia
Biopsy postponed
Wednesday, May 6, 2009
Charmaine didn't undergo the bone marrow biopsy today as her neutrophil count was 0.
Bone Marrow Biopsy Postponed
Tuesday, May 5, 2009
The bone marrow biopsy which was initially scheduled to be on Tuesday has been postponed to Wednesday due to the swine flu.
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