Updates after the family conference at KK…

Tuesday, February 24, 2009

In a nutshell, Charmaine would have:

- 10% chance of recovery after undergoing the strongest chemotherapy available
- 30% to 40% chance of recovery if surgery to remove the tumours and bone marrow transplant are performed after the chemotherapy

It does sound grim but on the bright side, Little Charmaine was so cheerful today. She didn’t throw any tantrum and she had her cute cheeky smile plastered on her face most of the time. She was clearly very happy and her mood had certainly changed ever since she was brought home.

I seriously think that the mind is a very powerful tool to control how one’s body would respond.

Guess what our princess said today with great determination?

"I want to fight the monster in my tummy!"

That's our feisty little girl!


With 2 hours of sleep the night before, I’m typing this with half my eyes open so I’m just doing a short summary for now for the many of you who are looking for updates on little charmaine’s situation.

I will be back to elaborate more on what happened today. =)


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Pleasant surprise #1:
Seeing the stats count of 600+ at cyn's house just now when this weblog was barely set up 24hours ago.
700+ at midnight and 800+ now!
Thank you to all of you who help spread the word around.


Pleasant surprise #2:
Opening my email just now to see a flurry of emails about Charmaine and the intention to help her.
Most of you are wondering how to go about donating. I will be opening a separate a/c for Charmaine hopefully this Wednesday on my off day. I will include the a/c number here once it is done.

You may also donate via the paypal button located at the right side bar.
[Special thanx to good friend Charlene for helping me with this paypal thingy. =)]

Thank you for all your sms-es. It’s rather tough for Cynthia and me to reply to every single sms so do come back here for updates on Charmaine.

For those of you who know how I can take weeks and months to procrastinate on my personal blog, I promise to do my best to update here religiously. Thank you all for your concern and support.

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Back to update…

Besides the grim family conference, we got to meet various people from the team. We managed to talk to 2 social welfare workers from the hospital itself and from the children’s cancer society.

Charmaine underwent a hearing test. The hearing test acts as a “baseline” marker. After undergoing strong chemotherapy, little char would have certain organs being affected, one of which is hearing.

Char failed this test a few days ago as on that day she was in such a foul mood with all the piercing of needles, drawing of blood and basically all the changes in her life. She was so agitated that she pulled off the earphones and refused to do the test.
Today, little char performed very well. Cyn said she followed all the instructions accurately. Cyn mummy was really proud of her!

Little char was a darling the whole day. I was really quite surprised that she was almost back to the same old charmaine just coz she hadn’t been in a hospital environment for the past 2 days. This is how much the environment can affect one’s mental state and overall well-being.

Rewind 2 days back…
Cyn requested for home leave over the weekend and brought little Charmaine home. Her mood improved tremendously and she did not even behave like a sick girl. She was happy with the simple pleasure of being allowed to step into a shopping complex for just a little while after more than a week of being confined and feeling miserable. Of course, she still felt the pain from all the surgery cuts on her body and cannot exert too much energy.

There were also the trying periods when little char simply starved herself despite being very hungry, controlling her bladder etc.

She is aware of how different she is now. She is very conscious of herself. She is really wary of everything around her and guards herself against many things.

It was really difficult trying to get her to eat with so many of her favourite food to avoid. She refused to eat all the healthy things that cyn cooked and prepared for her. She hates all the changes in her routine and was very upset about it all.

She could even hold her pee just so that cyn would not be able to collect her sample coz she’s so conscious of all these new changes.

She is such a stubborn or should we say determined girl that it was difficult to coax her to do things which she clearly didn’t want or like doing.

Hence with all these happening over the weekend, it was really very comforting to see cute little charmaine almost back to her normal self today. The only thing was that she refuses to kiss and hug me and refuses to be kissed and hugged by me. Normally, she would be very generous with hugs and kisses,

She constantly called me a “naughty godma” whenver she sensed that I was trying to coax her to do things. She’s really a smart little girl who can’t be easily tricked and persuaded to doing things she doesn’t like.

Heard from cyn that char watched some Superstar (or was it?) show on tv and she aspires to sing on stage.

“Next time, Charmaine will sing on stage then mummy, kor kor and Aunty Sonia will sit in the front row and clap.”

Decisions to make…
Should we put little charmaine through chemotherapy soon? If so, it would start this Wednesday. We actually thought of trying out alternative healing methods and seeking help from Chinese physicians first. There have been cases of tumours shrinking and cancerous cells to be under control with Eastern healing.

We were thinking of combining both Eastern and Western form of healing. As we all know, western healing encompasses all the drugs and everything “unnatural” whereas Eastern healings focuses more on balance and natural healing. For chemo? Against chemo? Surprisingly, there are many people I know in both camps.

Should we even wait any longer? Can we wait till the biopsy results are out in 2 to 3 weeks time? Can we afford the time?

9 comments:

Justina said...

Read the entries while trying to control my tears.
However, stay strong like how lil Charmaine is yea?
I will do a blog entry about this blog in mine. Can I use the pics?

deedee said...

i've been spreading the url in my facebook, my blog and my multiply as well... hope Charmaine will be strong and well... she will fight the monster and win the battle! *hugs*

from LD said...

i saw this on youtube moments ago..
http://www.youtube.com/watch?v=dMpdCw3vHkU

it's about a little girl who is diagnosed with neuroblastoma in 2007. she's still fighting the battle bravely.
i truely believe little char will also be as brave & strong as the little girl :)

lian said...

Charmaine Ganbatte! Aza Aza fighting!

Jolene said...

Justina,
Thanx for your kind words. Yes, it's fine to use the pictures for awareness of this blog. Remember to credit and link back here.

Oh yes, if it's convenient, could you include keywords like "neuroblastoma" on your blog while you're at it?

Thank you very much.

Jolene said...

deedee,
Thanx for your effort in helping us to spread the word. I popped by your blog a little while just now. Really appreciate it. =)

Oh yes, if it's convenient, could you include keywords like "neuroblastoma" on your blog while you're at it? It's for search engine purpose. We would like more interested-in-neuroblastoma pple to click here. Cynthia would love for anyone to share personal experience here.

Thank you very much.

Jolene said...

from LD,

Thanx for sharing the link. =) She's such a fighter. Really looks like a smiley and positive gal. Thanx for your kind words.

Jolene said...

lian,

Thanx! I'm sure Charmaine would be a little warrior.

Justina said...

Done with it.

 
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