Hi all,
Cynthia and the kids have touched down safely in Singapore. Safe yes, but healthy no.
The kids developed high fever on board the plane which lasted the whole 12hours. It was fortunate that the SQ staff was there for them or Cynthia would not have been able to handle it all alone.
Cyn mommy is also developing symptoms. Before flight, she was already very sick vomiting and all. Charmaine is currently admitted to KK and Jase is at home resting from his high fever.
Love,
Jolene
Showing posts with label updates. Show all posts
Showing posts with label updates. Show all posts
Halloween Cookies with Stephanie
Thursday, October 8, 2009
Stephanie has kindly hosted a cookie-session with the kids to prepare them for trick or treat.
Here's the video
Hama test - Negative!
Love, Charlene
~~~~~~~~~~~~~
Some post cookie-making session photos to add
"Ring ring"
The Skype telephone rang and I was greeted by very healthy-looking Cyn and Jase.
Jo: "Hey! The colour looks so much warmer!"
Cyn: "Yes, we were experimenting with the colour contrast and lighting cos we always look so pale and ghostly on Skype."
blablabla...
Jo: "Where's Charmaine?"
Cyn: "She's busy doing something. I dunno what."
Then Charmaine popped in to complete the family portrait. (As seen above in the bottom 2 pix.)
Then it was her turn to have some screen time.
I didn't know what she did with the colour settings but she slowly disappeared into whiteness. Kinda reminded me of an angel.
As we always have difficulty hearing one another via Skype, we've to use the phone to talk. While the adults talked over the phone. The kids would be making funny faces at the camera and asking if I could see or hear them as well.
Then, they would pester mommy for them to have the phone...
And finally... their MASTERPIECES!
Love,
Jolene
Here's the video
Hama test - Negative!
Love, Charlene
~~~~~~~~~~~~~
Some post cookie-making session photos to add
"Ring ring"
The Skype telephone rang and I was greeted by very healthy-looking Cyn and Jase.
Jo: "Hey! The colour looks so much warmer!"
Cyn: "Yes, we were experimenting with the colour contrast and lighting cos we always look so pale and ghostly on Skype."
blablabla...
Jo: "Where's Charmaine?"
Cyn: "She's busy doing something. I dunno what."
Then Charmaine popped in to complete the family portrait. (As seen above in the bottom 2 pix.)
Then it was her turn to have some screen time.
I didn't know what she did with the colour settings but she slowly disappeared into whiteness. Kinda reminded me of an angel.
As we always have difficulty hearing one another via Skype, we've to use the phone to talk. While the adults talked over the phone. The kids would be making funny faces at the camera and asking if I could see or hear them as well.
Then, they would pester mommy for them to have the phone...
And finally... their MASTERPIECES!
Love,
Jolene
Round 2 3F8 starts tomorrow
Monday, September 14, 2009
I have not gotten any updates yet from Cynthia on her round 2, but as soon as I get it, it will be updated.
Here's Charmaine's schedule in a nutshell:
1) 4th round 3F8 from 9/11/09 to 13/11/09
2) Accutane (which is oral).
3) Bone marrow biospy in Dec 2009 after 4th round of 3F8 (no fixed date yet)
4) 5th round 3F8 from 11/1/10 to 15/1/10.
5) Accutane #5
6) Accutane #6
7) Bone marrow biopsy in April 2010.
The more 3F8 for Charmaine, the better it is for her. Let's pray that Charmaine's *HAMA does not develop until after the 8th or 9th round of 3F8.
Her schedule is once again, tentative, depending on everything else that matters most.
But hey, the schedule looks good for a good Xmas trip!!! =D
I shall ask for some selfish prayers that... there would be no official trips in December and that my leave would be approved!
Good nite to all angels and I will try to update again tmr.
----
Edited to add:
0800 (SG Time)
It was yet another tough day for Cyn Mommy and Princess. Monday of each treatment round, will be the worst, as a parent of neuroblastoma had told Cyn Mommy. It never get easier, it seems.
Charmaine has just took her medication 5 mins ago. Her treatment was around 12-2am (SG Time) and she only managed to sleep 3 hours after the painkiller was given to her. Breathing was much worse and all types of oxygen masks were given to her today. It was worse than Round 1, but Cyn mommy seemed to be calmer than the first. Strong!
.
There was a boy that was nearly lost, in his third round, and another girl, who had the doctors and nurses sent scrambling to her ward.
.
Do pray for these little warriors too =D
What was Jase doing then?
While entertaining himself, he had constantly been asking Cyn Mommy, do you need any help?
.
I miss them... so.. I am on waitlist! whee~
Love, Charlene
----
Edited to add nuggets of information:
What is HAMA?
HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from the white blood cells of a mouse. This means that 3F8 looks different from a human antibody, and thus patients will eventually form antibodies (HAMA) against 3F8. Once a patient has developed HAMA, 3F8 treatments no longer effective because the HAMA blocks the 3F8 from getting to neuroblastoma cells. If the patient has received the desired amount of 3F8 (see next question for further information) by the time HAMA has developed, then treatment with 3F8 will be discontinued. However, if the patient has not yet received the desired amount, it is possible that HAMA may recede, and in that case we can resume 3F8 treatments. We conduct a blood test for HAMA usually one to two weeks after each round of 3F8 infusions. Patients with HAMA usually do not have pain or other side effects from 3F8 treatment.
Is HAMA good or bad?
HAMA is a positive sign in that it may mean the patient is developing an immune response against the neuroblastoma. However, when HAMA develops before the patient has received the usual 400 mg/m2 of 3F8 (two to four cycles), it may interrupt treatment. (As noted above, once HAMA is present, the 3F8 treatment is no longer effective.) Once HAMA has receded, treatment can resume. Most patients who have received chemotherapy only a short time before 3F8 treatment do not produce HAMA because part of their immune system is too suppressed. In these cases, 3F8 treatment will usually continue for up to two years. The aim of our protocols is to give repeated treatments with 3F8 until HAMA is made, because we believe that approach yields the best chances for cure. We continue to study HAMA to get a better understanding of how it may hurt or benefit patients in the long term.
Source:
MSKCC website
http://www.mskcc.org/mskcc/html/3215.cfm#261342]
Here's Charmaine's schedule in a nutshell:
1) 4th round 3F8 from 9/11/09 to 13/11/09
2) Accutane (which is oral).
3) Bone marrow biospy in Dec 2009 after 4th round of 3F8 (no fixed date yet)
4) 5th round 3F8 from 11/1/10 to 15/1/10.
5) Accutane #5
6) Accutane #6
7) Bone marrow biopsy in April 2010.
The more 3F8 for Charmaine, the better it is for her. Let's pray that Charmaine's *HAMA does not develop until after the 8th or 9th round of 3F8.
Her schedule is once again, tentative, depending on everything else that matters most.
But hey, the schedule looks good for a good Xmas trip!!! =D
I shall ask for some selfish prayers that... there would be no official trips in December and that my leave would be approved!
Good nite to all angels and I will try to update again tmr.
----
Edited to add:
0800 (SG Time)
It was yet another tough day for Cyn Mommy and Princess. Monday of each treatment round, will be the worst, as a parent of neuroblastoma had told Cyn Mommy. It never get easier, it seems.
Charmaine has just took her medication 5 mins ago. Her treatment was around 12-2am (SG Time) and she only managed to sleep 3 hours after the painkiller was given to her. Breathing was much worse and all types of oxygen masks were given to her today. It was worse than Round 1, but Cyn mommy seemed to be calmer than the first. Strong!
.
There was a boy that was nearly lost, in his third round, and another girl, who had the doctors and nurses sent scrambling to her ward.
.
Do pray for these little warriors too =D
What was Jase doing then?
While entertaining himself, he had constantly been asking Cyn Mommy, do you need any help?
.
I miss them... so.. I am on waitlist! whee~
Love, Charlene
----
Edited to add nuggets of information:
What is HAMA?
HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from the white blood cells of a mouse. This means that 3F8 looks different from a human antibody, and thus patients will eventually form antibodies (HAMA) against 3F8. Once a patient has developed HAMA, 3F8 treatments no longer effective because the HAMA blocks the 3F8 from getting to neuroblastoma cells. If the patient has received the desired amount of 3F8 (see next question for further information) by the time HAMA has developed, then treatment with 3F8 will be discontinued. However, if the patient has not yet received the desired amount, it is possible that HAMA may recede, and in that case we can resume 3F8 treatments. We conduct a blood test for HAMA usually one to two weeks after each round of 3F8 infusions. Patients with HAMA usually do not have pain or other side effects from 3F8 treatment.
Is HAMA good or bad?
HAMA is a positive sign in that it may mean the patient is developing an immune response against the neuroblastoma. However, when HAMA develops before the patient has received the usual 400 mg/m2 of 3F8 (two to four cycles), it may interrupt treatment. (As noted above, once HAMA is present, the 3F8 treatment is no longer effective.) Once HAMA has receded, treatment can resume. Most patients who have received chemotherapy only a short time before 3F8 treatment do not produce HAMA because part of their immune system is too suppressed. In these cases, 3F8 treatment will usually continue for up to two years. The aim of our protocols is to give repeated treatments with 3F8 until HAMA is made, because we believe that approach yields the best chances for cure. We continue to study HAMA to get a better understanding of how it may hurt or benefit patients in the long term.
Source:
MSKCC website
http://www.mskcc.org/mskcc/html/3215.cfm#261342]
A photo story: Charmaine's 4th birthday celebration
Thursday, July 16, 2009
14th July 2009... a happy occasion for Charmaine and cyn mummy.
For Charmaine, her happiness is of pure innocence. For cyn mummy, her happiness is of eternal gratitude.
~*~
Numerous gifts not just for Charmaine but for Jase as well... really thoughtful of all the donors and guests.
Middle top:
The cute little boy up there is Char's boyfriend. Hehe... She often tells us about him and now we finally saw him in real life.
Middle bottom:
When we saw the T-shirts, we just went "WAHHHH! So cute!!!" Jase has one too which he wore immediately.
What is a party without some dancing? Charmaine sure knows how to party!
A barbie cake...
similar to that from last year.
This was what happened to Barbie when Charmaine insisted on sticking the candles into the cake by herself.
Char was allowed to eat anything she wanted that day. She ate lots of cake. She loved the cream part best.
After eating some cake, little princess started her dance again.
The kids had a whale of a time... The Dora tent was enough to entertain them for hours. Charmaine was so happy to be mingling with her good friends -- something which she has not been able to do for months.
However,
Thanx to all the kind uncles, aunties, kor kors and jie jies who donated the gifts and also for making their way down to celebrate Charmaine's birthday and for making the occasion such a joyous one.
More video clips to look out for. I'm still in the midst of uploading them.
Love,
Jolene
For Charmaine, her happiness is of pure innocence. For cyn mummy, her happiness is of eternal gratitude.
~*~
Numerous gifts not just for Charmaine but for Jase as well... really thoughtful of all the donors and guests.
Middle top:
The cute little boy up there is Char's boyfriend. Hehe... She often tells us about him and now we finally saw him in real life.
Middle bottom:
When we saw the T-shirts, we just went "WAHHHH! So cute!!!" Jase has one too which he wore immediately.
What is a party without some dancing? Charmaine sure knows how to party!
A barbie cake...
similar to that from last year.
This was what happened to Barbie when Charmaine insisted on sticking the candles into the cake by herself.
Char was allowed to eat anything she wanted that day. She ate lots of cake. She loved the cream part best.
After eating some cake, little princess started her dance again.
The kids had a whale of a time... The Dora tent was enough to entertain them for hours. Charmaine was so happy to be mingling with her good friends -- something which she has not been able to do for months.
However,
Thanx to all the kind uncles, aunties, kor kors and jie jies who donated the gifts and also for making their way down to celebrate Charmaine's birthday and for making the occasion such a joyous one.
More video clips to look out for. I'm still in the midst of uploading them.
Love,
Jolene
In NUH for 5th Chemo
Wednesday, July 1, 2009
Dear all,
Charmaine is doing her 5th chemo now.
For direct contacts of Cynthia, please do not visit Charmaine if you are unwell as this round of chemo drugs would affect her quite badly.
For the numerous strangers who have dropped us notes and mails with the intention to visit Charmaine, we're sorry to say that we have to limit visitors to only cyn's family and close friends.
Hope to seek your understanding on this.
We mentioned previously that Charmaine has a window period of somewhere between end July to August to receive the drugs in MSKCC. Dr Aung has suggested to send her there after her 5th Chemo.
We have hit an astounding maximum of 2000+ new emails this morning. Charlene has managed to clear most of them a while ago. I could almost feel her heart attack. I've yet to clear those on my hotmail so for those of you who emailed me there, I'm so sorry I need more time to clear.
As mentioned by Charlene in another post, please check the blog very carefully for information you are looking for before emailing us. It would ease our load greatly.
Questions on neuroblastoma treatments, why NY and not Singapore, why only this particular treatment for Charmaine etc have already been answered on the blog. Believe us, if there are other alternatives to increase Charmaine's survival rate without having to to to NY, Cynthia would definitely have done so.
Please always check the blog for updates. Whenever possible, we would definitely update here.
Lastly, thanx to all our human angels for joining Charmaine in her battle. All of you are warriors too! =)
Love,
Jolene
Charmaine is doing her 5th chemo now.
For direct contacts of Cynthia, please do not visit Charmaine if you are unwell as this round of chemo drugs would affect her quite badly.
For the numerous strangers who have dropped us notes and mails with the intention to visit Charmaine, we're sorry to say that we have to limit visitors to only cyn's family and close friends.
Hope to seek your understanding on this.
We mentioned previously that Charmaine has a window period of somewhere between end July to August to receive the drugs in MSKCC. Dr Aung has suggested to send her there after her 5th Chemo.
We have hit an astounding maximum of 2000+ new emails this morning. Charlene has managed to clear most of them a while ago. I could almost feel her heart attack. I've yet to clear those on my hotmail so for those of you who emailed me there, I'm so sorry I need more time to clear.
As mentioned by Charlene in another post, please check the blog very carefully for information you are looking for before emailing us. It would ease our load greatly.
Questions on neuroblastoma treatments, why NY and not Singapore, why only this particular treatment for Charmaine etc have already been answered on the blog. Believe us, if there are other alternatives to increase Charmaine's survival rate without having to to to NY, Cynthia would definitely have done so.
Please always check the blog for updates. Whenever possible, we would definitely update here.
Lastly, thanx to all our human angels for joining Charmaine in her battle. All of you are warriors too! =)
Love,
Jolene
A BIG THANK YOU to everyone!!!!!!!!!!
Friday, June 26, 2009
Sneaking in for a quick post...
We are at $300K mark now!!!
Thank you everyone!!!!!
See you all on Sunday Soccer Match!
A special thanks to :
- Rafi Ali Soccer School to arrange such an event for us! Of course, the sponsors for the event too! We might (cross our fingers) bring Charmaine along too, so please please remember to bring in more Cash to donate! Rafi Ali School knows Princess Char favourite colour is Pink, so these boxes will all be coloured in bright pink! They must have had great sponsors backing them up because I heard that any amount donated, you will be given a spa voucher too!
- Radio 100.3FM esp Kenneth and team for the money fundraised, for the torture the kids given to you all yesterday,
- Various forums, medias (you know who u are ;) ),
- The fundraising activities listed at the right-hand panel
For all who have landed on this page, who have donated in cash, in kind, in thoughts, in prayers, in accommodation, in food, and who have conveniently forgotten that I should be working, thank you everyone!!!!
Can never thank all of you enough!
(Sensing a pair of eyes behind me soon, so I shall thank till here)
We hope to have all the donations in by July 13th or 14th and have this as the best birthday present that Charmaine can ever receive.
We are all excited about Sunday! How about u?
Love, Char
--
Char is in very good condition right now. thanks for all the prayers!
I will be putting up her photos shortly.
The culprit Monster will also be put up to be shot to death!
--
Just received the news:
1548:
Dr Aung just called. They found cancer cells in her right bone marrow. Cant stop crying. :-(
Please pray....
We are at $300K mark now!!!
Thank you everyone!!!!!
See you all on Sunday Soccer Match!
A special thanks to :
- Rafi Ali Soccer School to arrange such an event for us! Of course, the sponsors for the event too! We might (cross our fingers) bring Charmaine along too, so please please remember to bring in more Cash to donate! Rafi Ali School knows Princess Char favourite colour is Pink, so these boxes will all be coloured in bright pink! They must have had great sponsors backing them up because I heard that any amount donated, you will be given a spa voucher too!
- Radio 100.3FM esp Kenneth and team for the money fundraised, for the torture the kids given to you all yesterday,
- Various forums, medias (you know who u are ;) ),
- The fundraising activities listed at the right-hand panel
For all who have landed on this page, who have donated in cash, in kind, in thoughts, in prayers, in accommodation, in food, and who have conveniently forgotten that I should be working, thank you everyone!!!!
Can never thank all of you enough!
(Sensing a pair of eyes behind me soon, so I shall thank till here)
We hope to have all the donations in by July 13th or 14th and have this as the best birthday present that Charmaine can ever receive.
We are all excited about Sunday! How about u?
Love, Char
--
Char is in very good condition right now. thanks for all the prayers!
I will be putting up her photos shortly.
The culprit Monster will also be put up to be shot to death!
--
Just received the news:
1548:
Dr Aung just called. They found cancer cells in her right bone marrow. Cant stop crying. :-(
Please pray....
Updates for Day 2 after surgery
Saturday, June 20, 2009
0825:
Still in ICU because they found fluid in her chest =(
1539:
We got out of ICU now at ward ** bed **. Her fever is still fluctuating on and off. She's rather lethargic and drowsy. Doesnt talk much except that it's painful. Doc Says she's still stable. But she jerks alot while asleep. Its apparently common after op reaction for kids who have completed a long op. Dr Chiu drops by everyday to check on her, which is very comforting and assuring.
2124:
:-( She's having allergy reaction. Thankfully dr chui noticed when he came this afternoon. Was on e med since yesterday in icu and yet no one noticed! Argh.
I thought its due to her crying over pain. Sigh...
2140:
(Char update)
Fluid still remains in our princess chest because no exercise on the lungs has been done yet. Pray that she understands why and will proceed to do the blowing exercises.
2206:
Urine in her blood. going to poke her again.
Full of issues. She's not even on any thing now. they stopped everything.
2229:
Quite a number of problems occurred the moment we are in high dependancy ward. Gotta poke her again. Quite upset and frustrated.
2306:
Argh. Now they stopped all med and even saline. SIgh. told them to access port instead. no matter where they set the plug, she will still swell.
Photos:
These were secretly taken, but not so secret anymore after put up on here. please do not circulate out. If anyone wants, then please direct them here instead. We do not want to sensationalise these photos. However as this blog is to document down our princess fight with monster, we decided to put it up.
Still in ICU because they found fluid in her chest =(
1539:
We got out of ICU now at ward ** bed **. Her fever is still fluctuating on and off. She's rather lethargic and drowsy. Doesnt talk much except that it's painful. Doc Says she's still stable. But she jerks alot while asleep. Its apparently common after op reaction for kids who have completed a long op. Dr Chiu drops by everyday to check on her, which is very comforting and assuring.
2124:
:-( She's having allergy reaction. Thankfully dr chui noticed when he came this afternoon. Was on e med since yesterday in icu and yet no one noticed! Argh.
I thought its due to her crying over pain. Sigh...
2140:
(Char update)
Fluid still remains in our princess chest because no exercise on the lungs has been done yet. Pray that she understands why and will proceed to do the blowing exercises.
2206:
Urine in her blood. going to poke her again.
Full of issues. She's not even on any thing now. they stopped everything.
2229:
Quite a number of problems occurred the moment we are in high dependancy ward. Gotta poke her again. Quite upset and frustrated.
2306:
Argh. Now they stopped all med and even saline. SIgh. told them to access port instead. no matter where they set the plug, she will still swell.
Photos:
These were secretly taken, but not so secret anymore after put up on here. please do not circulate out. If anyone wants, then please direct them here instead. We do not want to sensationalise these photos. However as this blog is to document down our princess fight with monster, we decided to put it up.
Updates for Day 1 after surgery
Friday, June 19, 2009
0700:
Fever has subsided but still having plasma transfusion.
0923:
Pls put on the blog that I'm in ICU the whole day. No handphone allowed. Pls call only if its urgent. Else text me. I will check phone when i'm out.
1126:
she just demanded to sit upright despite the pain. We elevated the bed for her, and she dozed off. I'm at waiting area drinking a hot drink. Going in soon.
1615:
They just increase pain killer for her again. She has not slept for longer than an hour =( Hopefully this time she can slp longer. Her legs are double the size and she cried, I dont want my legs to be fat cause she felt the heaviness when trying to shift herself. Fever is creeping up again.
1855:
fever is up again =(
Fever has subsided but still having plasma transfusion.
0923:
Pls put on the blog that I'm in ICU the whole day. No handphone allowed. Pls call only if its urgent. Else text me. I will check phone when i'm out.
1126:
she just demanded to sit upright despite the pain. We elevated the bed for her, and she dozed off. I'm at waiting area drinking a hot drink. Going in soon.
1615:
They just increase pain killer for her again. She has not slept for longer than an hour =( Hopefully this time she can slp longer. Her legs are double the size and she cried, I dont want my legs to be fat cause she felt the heaviness when trying to shift herself. Fever is creeping up again.
1855:
fever is up again =(
Charmaine Operation Progress
Thursday, June 18, 2009
0924:
Sedated and in OT.
1447:
Charmaine was very strong when she went in. She didnt cry at all. And she didnt put up any resist. Am very proud of her maturity and her courage. She's still inside.
1603:
The anathesist just came out for her break. She saw me and said the op still has a long way. Pray for Char
1728:
Dr Chui just came out. Said they removed 99% of the tumour and 10% of her liver. Lost blood and had a few packs of transfusion. Dr Ong is stitching up her wound now. Will take some time. But she's stable and will be pushed to icu.
1851:
Char is still not out yet
2010:
Char just came out of ot. I still cant go in yet.
2130:
Cyn is wif char in the icu ward now. So she cant use the fone. We only get to see char ard 8.40pm in the icu ward. Get a glimpse of char when shes pushed into the icu ard 7.30pm if not wrong. The doc took out the respiratory thing after the ops. But later they feel that her breathin is not up to their expectation or standard. So they give her the oxygen mask and insert a tube through her nose til the nasal to help facilitate her breathing. Shes still breathin on her own. Char also have high chances of bleeding. Cyn will confirm wif dr chui as he didnt mention to up earlier on. thus they doing blood transfusion now as well. Shes also sedated with little bit of morphine as her wound is rather big and will hurt. Overall shes considered stable.
- sms from Angela Chua
Thank goodness.
Love, Charlene
2341:
Char woke up abt 10.30pm. She cried very loudly, shouted pain. Her nasal tube to aid her breathing got wrenched out. The doc decided to take it out than. She also asked for water but we couldn't feed her any. She cries that her throat is painful. :-( when i was told to wait outside, she again cried loudly for kor kor and mummy. I tried my best to hold my tears because i really don't wish her to see me cry when she's already in so much pain... She eventually calmed down when i told her e 'secret' of how Jase fell at waiting area.
2349:
I told Charmaine, 'you have already won your monster! Mummy knows you are in pain but just focus on 2 days later when e pain will be gone. Told her that if she drinks water now, she wil vomit and its more painful. She understood everything i said. She listened quietly, and asked for her towel pillow and dozed off into her sleep shortly. I don't know how is it that she can be this brave and strong, but she just is. So much stronger than this mummy of hers... I'm just sitting outside at e waiting area, too afraid to fall asleep now.
0012:
Sigh, char is having a fever now :-( am getting worried. The transfusions have not stopped yet. Plasma, packed cells. Hopefully she can pass tonight safely.
0014:
I just whispered into her ears, saying I'm going to rest for an hour. She's asleep but she actually shook her head!
0118:
She woke up in pain again. Immediately after my last msg. Cried, and wanted everything off her. :-(she can't sleep through. The painkiller they gave cannot be too high because she's not on respirator. Painkkiller will shrink e airway.
Please continue to pray for Charmaine to pass through everything safely.
Love,
Jolene
19 June 2009
0700:
Fever has subsided but still having plasma transfusion.
0923:
Pls put on the blog that I'm in ICU the whole day. No handphone allowed. Pls call unless its urgent. Else text me. I will check phone when i'm out.
(Email us, and if needed, we will provideo our contact number instead)
Love, Charlene
Sedated and in OT.
1447:
Charmaine was very strong when she went in. She didnt cry at all. And she didnt put up any resist. Am very proud of her maturity and her courage. She's still inside.
1603:
The anathesist just came out for her break. She saw me and said the op still has a long way. Pray for Char
1728:
Dr Chui just came out. Said they removed 99% of the tumour and 10% of her liver. Lost blood and had a few packs of transfusion. Dr Ong is stitching up her wound now. Will take some time. But she's stable and will be pushed to icu.
1851:
Char is still not out yet
2010:
Char just came out of ot. I still cant go in yet.
2130:
Cyn is wif char in the icu ward now. So she cant use the fone. We only get to see char ard 8.40pm in the icu ward. Get a glimpse of char when shes pushed into the icu ard 7.30pm if not wrong. The doc took out the respiratory thing after the ops. But later they feel that her breathin is not up to their expectation or standard. So they give her the oxygen mask and insert a tube through her nose til the nasal to help facilitate her breathing. Shes still breathin on her own. Char also have high chances of bleeding. Cyn will confirm wif dr chui as he didnt mention to up earlier on. thus they doing blood transfusion now as well. Shes also sedated with little bit of morphine as her wound is rather big and will hurt. Overall shes considered stable.
- sms from Angela Chua
Thank goodness.
Love, Charlene
2341:
Char woke up abt 10.30pm. She cried very loudly, shouted pain. Her nasal tube to aid her breathing got wrenched out. The doc decided to take it out than. She also asked for water but we couldn't feed her any. She cries that her throat is painful. :-( when i was told to wait outside, she again cried loudly for kor kor and mummy. I tried my best to hold my tears because i really don't wish her to see me cry when she's already in so much pain... She eventually calmed down when i told her e 'secret' of how Jase fell at waiting area.
2349:
I told Charmaine, 'you have already won your monster! Mummy knows you are in pain but just focus on 2 days later when e pain will be gone. Told her that if she drinks water now, she wil vomit and its more painful. She understood everything i said. She listened quietly, and asked for her towel pillow and dozed off into her sleep shortly. I don't know how is it that she can be this brave and strong, but she just is. So much stronger than this mummy of hers... I'm just sitting outside at e waiting area, too afraid to fall asleep now.
0012:
Sigh, char is having a fever now :-( am getting worried. The transfusions have not stopped yet. Plasma, packed cells. Hopefully she can pass tonight safely.
0014:
I just whispered into her ears, saying I'm going to rest for an hour. She's asleep but she actually shook her head!
0118:
She woke up in pain again. Immediately after my last msg. Cried, and wanted everything off her. :-(she can't sleep through. The painkiller they gave cannot be too high because she's not on respirator. Painkkiller will shrink e airway.
Please continue to pray for Charmaine to pass through everything safely.
Love,
Jolene
19 June 2009
0700:
Fever has subsided but still having plasma transfusion.
0923:
Pls put on the blog that I'm in ICU the whole day. No handphone allowed. Pls call unless its urgent. Else text me. I will check phone when i'm out.
(Email us, and if needed, we will provideo our contact number instead)
Love, Charlene
Removing the monster
Wednesday, June 17, 2009
"We are buying bullets to kill the monster"
"A knife will cut open stomach and take out monster"
These are words that we told Charmaine yday.
Now, she is in the hospital, getting ready for Round 1.
From now till she gets back, Cynthia will be out of internet access.
---
SMS Update:
17:21
"Stepphing back into the same level 5 brings back all the memories i dont wish to be reminded of. Those first few days of diagnosis.. my days of bad news and crying. Cant hold my tears the whole day. Having the surgeon, oncologist, anathesis getting me to sign forms of consent, explaining the risksmakes it even more tough to stay sane and calm" -cyn mummy
Love,
Charlene
~~~~~~~~~~~~~~~~
[Edited to add]
On Tuesday night, cyn mummy did a pep talk with Charmaine to prepare her for the upcoming surgery. Our little princess was a little afraid and apprehensive. She asked cyn mummy lots of questions. Finally, she overcome her fear and decided she would face the battle with the monster bravely.
"I will throw the naughty monster in the dustbin and laugh at monster," declared little Charmaine with a cheeky little chuckle.
For the next few moments, Jase and Charmaine were thinking of the various ways to deal with the monster after it was taken out from her "tummy".
Just now at KKH, little Charmaine was as feisty as ever. She was so energetic, often getting down from bed, climbing onto seats and observing the people around her. We could even go to the indoor playground to have a great workout. She truly enjoyed herself with no restriction whatsoever. Seeing her run around with a huge smile plastered on her face, we can't help but smile to ourselves.
Have I already mentioned that char was more than ready to face the monster anytime? Each time we walked out of the ward, she would ask, "Is it take out monster now?"
Fight on, my dear Charmaine! You can do it!
Love,
Jolene
"A knife will cut open stomach and take out monster"
These are words that we told Charmaine yday.
Now, she is in the hospital, getting ready for Round 1.
From now till she gets back, Cynthia will be out of internet access.
---
SMS Update:
17:21
"Stepphing back into the same level 5 brings back all the memories i dont wish to be reminded of. Those first few days of diagnosis.. my days of bad news and crying. Cant hold my tears the whole day. Having the surgeon, oncologist, anathesis getting me to sign forms of consent, explaining the risksmakes it even more tough to stay sane and calm" -cyn mummy
Love,
Charlene
~~~~~~~~~~~~~~~~
[Edited to add]
On Tuesday night, cyn mummy did a pep talk with Charmaine to prepare her for the upcoming surgery. Our little princess was a little afraid and apprehensive. She asked cyn mummy lots of questions. Finally, she overcome her fear and decided she would face the battle with the monster bravely.
"I will throw the naughty monster in the dustbin and laugh at monster," declared little Charmaine with a cheeky little chuckle.
For the next few moments, Jase and Charmaine were thinking of the various ways to deal with the monster after it was taken out from her "tummy".
Just now at KKH, little Charmaine was as feisty as ever. She was so energetic, often getting down from bed, climbing onto seats and observing the people around her. We could even go to the indoor playground to have a great workout. She truly enjoyed herself with no restriction whatsoever. Seeing her run around with a huge smile plastered on her face, we can't help but smile to ourselves.
Have I already mentioned that char was more than ready to face the monster anytime? Each time we walked out of the ward, she would ask, "Is it take out monster now?"
Fight on, my dear Charmaine! You can do it!
Love,
Jolene
The date is set
Saturday, May 30, 2009
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.
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
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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
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.
A quick update after 3rd chemo
Sunday, April 26, 2009
Dear all,
This post was supposed to come earlier but I didn't have the time to update till now.
Charmaine has been quite sickly after she was discharged. She kept suffering from nausea and vomited quite a few times. She was weak and lethargic most of the time, quite different from how she looked in the recent photos. These are the side effects of chemo.
Jase was having fluctuating high fever since Wednesday. His temperature reached as high as 39.5. Doc said it was the flu.
Cynthia had succumbed to sickness as well. She was really weak on Friday and vomited too. Doc said she caught the flu from Jase. She was a lot better on Friday night but it requires some time to fully recover from flu.
~~~~~~~~~~
Quick update from Charlene via email
Friday, 24th April
This morning, sms from Cynthia came.
"Need your help. I am very sick. Char look bad too"
I knew her appointment with Dr. today, so i had pre-empt my office for urgent leave.
"See u in NUH 8th floor"
When I was there, Cynthia looked worse than yday, and she is trying to avoid contact with Charmaine and other kids for fear she might pass her virus to them. She seemed to have gotten it from Jase, who has high fever for 2 days of 39ish. She couldnt seperate them on the bed. So the virus just passed from 1 to another.
Dr consultation was that Charmine need not be warded, but counting the days, it seemed that these few days, will be her low imune day and the first week of May will be the bone marrow test. There were some qns that Cynthia asked which i didnt catch cos i was looking (playing) with Charmaine.
Some key points:
- 2 to 3 out of 20 children were cured
- 3F8 couldnt be made available to her despite Dr plea.
- Dr encourage (shld $ not an issue) to go to New York for her treatment. But at least USD70K to be deposited with the bank (like a form of guarantee?)
- 3rd chemo has a substance that will cause Charmaine to be nausea that why she been vomitting so much after that
- ch14.18 that we checked online, Dr did not hear of it but mentioned it could be other hospitals treatment. So 3F8 is still our best bet for now. 100% movine (mice) though.
Cynthia health been going downhill. She vomitted while heading back on a cab. Basiaclly is zero action but the kids keep asking for her. She seen the doctor took her medicine. But not good.
New maid is in, but not yet adjusted.
~~~~~~~~~~
Dear kind souls who have been leaving comments,
Just to let all of you know we've been reading all your comments.
Even though Cynthia doesn't leave replies here, you can rest assured that she reads every single one of the comments and she really appreciates it. =)
Thanx for all your well wishes and words of encouragement.
~~~~~~~~~~
Edited to add: I see nuffnang ads on both the leaderboard and skyscraper! Do help by clicking on them whenever they appear. Thanx!
This post was supposed to come earlier but I didn't have the time to update till now.
Charmaine has been quite sickly after she was discharged. She kept suffering from nausea and vomited quite a few times. She was weak and lethargic most of the time, quite different from how she looked in the recent photos. These are the side effects of chemo.
Jase was having fluctuating high fever since Wednesday. His temperature reached as high as 39.5. Doc said it was the flu.
Cynthia had succumbed to sickness as well. She was really weak on Friday and vomited too. Doc said she caught the flu from Jase. She was a lot better on Friday night but it requires some time to fully recover from flu.
~~~~~~~~~~
Quick update from Charlene via email
Friday, 24th April
This morning, sms from Cynthia came.
"Need your help. I am very sick. Char look bad too"
I knew her appointment with Dr. today, so i had pre-empt my office for urgent leave.
"See u in NUH 8th floor"
When I was there, Cynthia looked worse than yday, and she is trying to avoid contact with Charmaine and other kids for fear she might pass her virus to them. She seemed to have gotten it from Jase, who has high fever for 2 days of 39ish. She couldnt seperate them on the bed. So the virus just passed from 1 to another.
Dr consultation was that Charmine need not be warded, but counting the days, it seemed that these few days, will be her low imune day and the first week of May will be the bone marrow test. There were some qns that Cynthia asked which i didnt catch cos i was looking (playing) with Charmaine.
Some key points:
- 2 to 3 out of 20 children were cured
- 3F8 couldnt be made available to her despite Dr plea.
- Dr encourage (shld $ not an issue) to go to New York for her treatment. But at least USD70K to be deposited with the bank (like a form of guarantee?)
- 3rd chemo has a substance that will cause Charmaine to be nausea that why she been vomitting so much after that
- ch14.18 that we checked online, Dr did not hear of it but mentioned it could be other hospitals treatment. So 3F8 is still our best bet for now. 100% movine (mice) though.
Cynthia health been going downhill. She vomitted while heading back on a cab. Basiaclly is zero action but the kids keep asking for her. She seen the doctor took her medicine. But not good.
New maid is in, but not yet adjusted.
~~~~~~~~~~
Dear kind souls who have been leaving comments,
Just to let all of you know we've been reading all your comments.
Even though Cynthia doesn't leave replies here, you can rest assured that she reads every single one of the comments and she really appreciates it. =)
Thanx for all your well wishes and words of encouragement.
~~~~~~~~~~
Edited to add: I see nuffnang ads on both the leaderboard and skyscraper! Do help by clicking on them whenever they appear. Thanx!
Back Home After 3rd Chemo
Monday, April 20, 2009
During her stay in NUH over the past few days, Charmaine had been quite active and cheerful.
However, she has been experiencing more side effects as compared to the first 2 rounds. She vomitted and complained of sore throat and tummy ache which Cynthia suspects could be nausea as this is one of the side effects of chemo.
~*~*~*~*~*~*~*~*~
Happy moments over the weekend
Charmaine had been really active over the weekend.
She kept requesting to come down from the bed to take a walk.
That was troublesome to the adults as we had to push the bar with all the drips. More importantly, we were afraid of the line being jerked out from the port.
Most of the time instead of walking, she would be standing on the bars while being pushed around. It's much safer this way.
It was really cute… the way she got onto the “surf board” and waved goodbye while Charlene pushed her around. Indeed, she looked like she was surfing.
Sometimes, Jase would get onto the “surf board” as well. There was once when he put his hand on the small of Charmaine’s back and said,
“Mei mei still small. I must hold mei mei wait she fall down.”
I didn’t manage to capture that candid shot in time and I could kick myself for it.
~~~~
Had a study session with Jase on Sunday and he was such a darling.
He was supposed to draw himself since it was the theme of "Body". However, he insisted on drawing mei mei and cyn mummy in the box too.
Who could fault him for being out of point when he was being a loving son and brother?
Cooking and play time!
Both kids are so sweet to each other!
However, she has been experiencing more side effects as compared to the first 2 rounds. She vomitted and complained of sore throat and tummy ache which Cynthia suspects could be nausea as this is one of the side effects of chemo.
~*~*~*~*~*~*~*~*~
Happy moments over the weekend
Charmaine had been really active over the weekend.
She kept requesting to come down from the bed to take a walk.
That was troublesome to the adults as we had to push the bar with all the drips. More importantly, we were afraid of the line being jerked out from the port.
Most of the time instead of walking, she would be standing on the bars while being pushed around. It's much safer this way.
It was really cute… the way she got onto the “surf board” and waved goodbye while Charlene pushed her around. Indeed, she looked like she was surfing.
Sometimes, Jase would get onto the “surf board” as well. There was once when he put his hand on the small of Charmaine’s back and said,
“Mei mei still small. I must hold mei mei wait she fall down.”
I didn’t manage to capture that candid shot in time and I could kick myself for it.
~~~~
Had a study session with Jase on Sunday and he was such a darling.
He was supposed to draw himself since it was the theme of "Body". However, he insisted on drawing mei mei and cyn mummy in the box too.
Who could fault him for being out of point when he was being a loving son and brother?
Cooking and play time!
Both kids are so sweet to each other!
In NUH for 3rd chemo
Thursday, April 16, 2009
Charmaine is in NUH now for her 3rd chemo session. After the 3rd chemo comes the many procedures such as bone marrow biopsy, scans and preparation for the upcoming surgery.
Let us pray that Charmaine would undergo everything smoothly and that she would be able to keep her fighting spirit there.
Thank you all who have been praying and keeping Charmaine, Cynthia and their family in your thoughts.
Let us pray that Charmaine would undergo everything smoothly and that she would be able to keep her fighting spirit there.
Thank you all who have been praying and keeping Charmaine, Cynthia and their family in your thoughts.
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