She's fighting fearlessly...

BUT so are the damn bloody freaking sick NB tumors.

Feels like a nightmare daily...

I wake up and I see some new tumors popping out somewhere or I see the existing tumors becoming bigger.

Its so never-ending...

She has so much pain especially when she's awake... Hence, her awake hours are fewer and lesser these days... I wish for her to be asleep too... Because it's too painful to watch and hear her cry out " VERY VERY VERY PAINFUL"...

I can barely recognize my poor child... Without her smiles, without her chattering, without her "LOVE YOUUUU!!!"... My poor char has the same face but yet she is nothing the sweet, loving, happy little girl she was...

It's like Heaven is giving me more time with my little girl which I absolutely am grateful for BUT while I can feel and touch my baby... I honestly have NO IDEA what can I cherish with moments like these... Its such a cruel thing to do to a mom... You want to hold on to every second and imprint them as deeply as possible into your memory lane but these are such painful moments that will probably haunt me for the rest of my lifetime... My whole mind is just so messed up...

And then you worry about the tumors that are literally pushing out through her skin... I'm so sorry for being so graphic but it is every bit the reality I am living in now...

On days when I am delusional or hopeful, I urge myself to continue the fight and that the fact she is still alive and fighting is the reason that Heaven is giving me a chance to save her... So I have to think, and keep searching for an option...

We have sort of gotten into a routine with nursing Char at home and like the sweet girl she always has been, this really is the easier part...

Changing oxygen tank every 3 hourly, IV medications, taking her oxygen stats, BP, checking her lungs air entry... We have a mini ICU in our room...

And of course, still having to deal with systems that somehow doesn't work well for people like Char and me... Singapore Palliative and Home Care development still have a long long way to go and tons of improvement to be made... Or maybe not, because believe it or not, Char and me always ends up being the first case in KKH history for whatever reason... I've already learned quite some time ago that we are a minority but minority really seems like an understatement... It's more like we are the ONLY...

Amidst the crapiness in the systems, our silver lining lies in some wonderful amazing doctors and nurses (healers) who always go beyond their calls to try and make my little princess comfortable... It makes a world of difference compared to having to deal with some who can only say "I don't know" after all the years of education and training and work experiences. Let's just say that it gets on my nerves whenever my 7 year old boy says that to me... I have to literally knock myself on my head before finding enough patience to reply my Jase "why don't you try to think a little bit more? Explore, guess and you might just figure it out?" More often then not, I find myself having to say the same replies to the experts I'm depending on.

Jase has been my most amazing helper around the house albeit his trademark clumsiness. He is the one pillar that has provided a constant. He is comfortable in our little room with his very sick sister. His innocence, his nonchalance (not the negative way but a positive unaffected attitude), his confidence in taking over whenever I need to run out for toilet breaks, even his constant monkeying has helped to maintain a certain level of much needed 'normalcy'... Nothing is quite normal here but yet my boy is not at all intimidated with our new situation... Maybe because he's been living this life the past 3 years himself... It's sadly his norm to a large extent...

Please pray for us... Pray for Char's continual healing... Pray for peace and calm... Pray for Char to be pain free...

Thank you to one and all. Your words have always provided me a great deal of support...

Love,
Cyn mommy