SMS 0808 (SG Time)
Today is hellish =( She experienced alot of pain, abt 20mins and they had to increase the Dilaudid to 4 doses. As such, she has been drowsy since. Vomited again. Couldn't keep her anti vomit pill either. Hasn't eaten. Drank only sips. And still suffering from pain on both legs now. Yesterday was slightly better. But today was just bad.
SMS 0911 (SGTime)
Legs still painful. but she's hungry. Just order food. Hopefully she can keep it in.
Love, Charlene
Skyping with the kids
Posting some skype photos with the kids. Thank God for technology. It feels like the kids are just a computer away.
Somehow, the photos taken from Skype always fail to reveal themselves in the folder that they were meant to be in till the next Skype session. Better post all of them here before my laptop threatens to commit hara-kiri.
Sometime in August…
Each time they call, they would say,
"Godma Jolene I want to see you on the computer."
Cheeky smiles
Wherever they want to go, the camera and laptop would follow, even right down to under the table.
[This is supposed to be a gif file but I dunno why the animation isn't working here.]
Ok so these are the 2 photos making up the gif
Now you see me...
Now you dun...
Charmaine can even go to the toilet and holler,
"Can you see me? I'm in the toilet!"
*LoLz*
Sometime in September…
Loving kor kor and mei mei
On the above picture:
- Usually we don't use the headphones but the static sound was quite bad that day and so cyn mummy, Charmaine and Jase had to take turns to put on the headphones.
- Jase is really good at racing and he was showing off that he had won the race... yet again.
- Whenever it was time to go to the hospital, Charmaine would excitedly run away to pick her outfit for the day and after changing would parade in front of the webcam to ask if the outfit she chose was nice.
On the above picture:
- The kids enjoy making funny faces, especially so when Uncle/ Godpa kh squeezed into the picture. Why did they scold Uncle/ Godpa notti? Coz I told them that my comp was going to spoil soon and Charmaine hollered, "Ask Uncle Kehang buy for you new computer." When he said no, she started scolding him notti. Haha...
- When cyn and I wanna have a real talk, the kids would always budge in to disturb.
- Jase emjoys making sad faces for fun.
On the above picture:
- Charmaine would always spend more time skyping while Jase kor kor would run away and probably play his racing game.
- She had a pretty hairband on that day and she was very eager to show it.
- She started eating porridge in front of me and I asked jokingly, "Godma hungry. Can give me some porridge?" She said, "Wait huh, I bring the porridge for you to eat ok?" After that, she carefully carried the half full bowl in front of the camera.
Charmaine looks so cute and innocent here
Jase is my Precious Moments boy boy
Just in case the gif file doesn't work, here are the shots:
Somehow, the photos taken from Skype always fail to reveal themselves in the folder that they were meant to be in till the next Skype session. Better post all of them here before my laptop threatens to commit hara-kiri.
Sometime in August…
Each time they call, they would say,
"Godma Jolene I want to see you on the computer."
Cheeky smiles
Wherever they want to go, the camera and laptop would follow, even right down to under the table.
[This is supposed to be a gif file but I dunno why the animation isn't working here.]
Ok so these are the 2 photos making up the gif
Now you see me...
Now you dun...
Charmaine can even go to the toilet and holler,
"Can you see me? I'm in the toilet!"
*LoLz*
Sometime in September…
Loving kor kor and mei mei
On the above picture:
- Usually we don't use the headphones but the static sound was quite bad that day and so cyn mummy, Charmaine and Jase had to take turns to put on the headphones.
- Jase is really good at racing and he was showing off that he had won the race... yet again.
- Whenever it was time to go to the hospital, Charmaine would excitedly run away to pick her outfit for the day and after changing would parade in front of the webcam to ask if the outfit she chose was nice.
On the above picture:
- The kids enjoy making funny faces, especially so when Uncle/ Godpa kh squeezed into the picture. Why did they scold Uncle/ Godpa notti? Coz I told them that my comp was going to spoil soon and Charmaine hollered, "Ask Uncle Kehang buy for you new computer." When he said no, she started scolding him notti. Haha...
- When cyn and I wanna have a real talk, the kids would always budge in to disturb.
- Jase emjoys making sad faces for fun.
On the above picture:
- Charmaine would always spend more time skyping while Jase kor kor would run away and probably play his racing game.
- She had a pretty hairband on that day and she was very eager to show it.
- She started eating porridge in front of me and I asked jokingly, "Godma hungry. Can give me some porridge?" She said, "Wait huh, I bring the porridge for you to eat ok?" After that, she carefully carried the half full bowl in front of the camera.
Charmaine looks so cute and innocent here
Jase is my Precious Moments boy boy
Just in case the gif file doesn't work, here are the shots:
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]
FundRaising: Arsenal Singapore
Thursday, September 10, 2009
No matter how much Mommy Cyn and family has lost out in, lacked and robbed off, the lucky stars and guiding angels are always there, forever supporting.
We like to thank Arsenal Singapore, for coming up to arrange the next fund raising event for Princess Charmaine, to ensure her ongoing treatments in New York, as well as the expenses that will arise, be it living, or medical.
Love, Charlene
We like to thank Arsenal Singapore, for coming up to arrange the next fund raising event for Princess Charmaine, to ensure her ongoing treatments in New York, as well as the expenses that will arise, be it living, or medical.
The official supporters’ club for Arsenal in Singapore will be holding a special auction this Saturday, 12 September, 9pm, at the club’s official hangout, Modesto’s at Elizabeth Hotel. 50% of all proceeds raised will be donated towards the care of our princess, who is in New York undergoing treatment, and the remaining proceeds will go towards the club’s community funds. Arsenal Singapore is appealing to all Arsenal fans in Singapore to show their support for these charitable causes. The auction is open to all members of public.
Two collectible items will be put up for auction:
1. A signed Arsenal home shirt from the 2005 FA Cup winning team which includes signatures from Arsenal legends such as Patrick Vieira, Thierry Henry, Dennis Bergkamp, Robert Pires and Ray Parlour. The shirt comes with a certificate of authenticity from Arsenal FC.
2. An Arsenal Singapore cap signed by current Arsenal and Netherlands forward Robin van Persie. It comes with the message “Best Wishes RvP” and was received personally from the 26-year-old Dutchman at the end of last season when Arsenal Singapore was present at the Emirates Stadium to present him with Arsenal Singapore's Player of the Season award.
More information can be found on the Arsenal Singapore website: www.arsenalsingapore.com
Thank you Elvin, Kevin and team in ensuring the lives of Jase, Charmaine and Cynthia are smoother one.Love, Charlene
A little thanks from ourfeistyprincess
Charmaine has been very happy these few days, and as usual, while Char jiejie is working to earn her ticket to New York this holiday, she makes funny faces to entertain poor jiejie. =D
Lucky charms on Charmaine, her HAMA is tested negative so her second round of 3F8 will start soon. Her first, was a nightmare for all of us, let's pray her second will be alright.
And yes,a little thanks from Charmaine, here's her cheeky face.
love, Charlene
Lucky charms on Charmaine, her HAMA is tested negative so her second round of 3F8 will start soon. Her first, was a nightmare for all of us, let's pray her second will be alright.
And yes,a little thanks from Charmaine, here's her cheeky face.
love, Charlene
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