Chemo Number #15

Wednesday, October 27, 2010

Hi everyone,

Its Tuesday and we are onto our day 2 out of 5 days of chemo. Cycle number #15 for my princess warrior Char. One of the nurses at KKH wrote in her facebook status: "Have you heard of anyone who has a heart full of poison but with a mouth which spills sweet honey??" Thats my sentiments exactly. A heart full of poison, with consent given by her own mom, to try to combat the beast in her, all the while breaking her immune and damaging her healthy organs. If only it works the same way as those unrealistic soap dramas, neutralizing one poison with another poison. In reality, nothing is quite neutralized, at least in my opinion, the trade-off is so huge it makes all other problems in life seem insignificant.

We had a good week! Despite the left knee pain coming on and off, Char was able to tolerate her pain and still participate in the daily activities organized by the house. Like always, THIS IS A PRICELESS GIFT.

Last week, Jase and Charmaine had their photo-taking session with their classmates. As Charmaine was still having radiation, she couldnt attend class and I had to bring her in just for a quick picture. I stood by the side, like a really proud mom, staring at her, standing amongst her classmates, having her first class photo taken since she was 3 and once again, tears streaked down my face uncontrollably. Who would have thought a simple class photo-taking session would evoke such bittersweet emotions from a silly mom. In fact, I find myself getting teary over the simplest things more often than not. Simple things that didnt mean much to me previously, simple things that I could take for granted, simple things that I thought didnt need any effort protecting... I found myself fighting so hard everyday just to allow Charmaine to have a chance to do simple things, to be a simple girl, like you and I. A simple thing like going to school, a simple thing like taking a class photograph... If you are one of the many students, dreading to wake up early to go to school, think of Charmaine and many of her friends with not even a chance to dread and complain...

I have been focusing on fighting cancer and getting through each day alive so much so that I had forgotten I have 2 beautiful kids growing up each single day. And I do mean it literally. Graduating from Kindergarten, admission into Primary One, dropping of their first milk tooth which are all wonderful significant milestones that have totally been replaced by WHEN we get over the operation safely, WHEN we finish up our last chemo, WHEN we can remove her port-a-cath and celebration our new lease of lives... these are all the milestones in my life now... Such an irony, I cant wait for cancer to disappear and get out of my life and yet, the milestones in my life are marked by cancer entirely.

Hence, in the past week, I was pleasantly reminded by my 2 babies just how much alive they are and how they have grown! Jase would suddenly take up my phone and start reading my text messages aloud. I was freaked. Now I have one less avenue to keep my secrets. Its funny how I was always whining to him about how he couldnt read and spell but when the ability of his reading skills were put to test on my stuff, I almost wished that he was still the baby toddler who couldnt dig into my secrets. :-)

As for my dear princess Char, the fact that she sobbed so sadly over her lost hair has not only got me so depressed but also highlighted the fact that she has grown up to be a little lady, so conscious of her looks... Even the discussions we have everyday pertaining to treatments have taken a whole new level with her increased level of understanding and conception. Its interesting though that ever since the first day of her diagnosis, I've never failed to inform her of our next admission for chemo, next blood test, next appointment with the doctor so she pretty much understood since day 1 and yet, the reaction when I got from my 3 year old Charmaine is interestingly different from my 5 year old Charmaine.

And wait till the next time when I share with you the story about the few "MATURED" adults we bumped into while we were outside, in a mall checking some of the winter gear. The incidents that I sorely remember. All interestingly on the same day. The day I found out my son could pronounce 'Neuroblastoma' better than some of you can say 'Interesting'.

It happened the week before we were leaving for New York, when we were out. Quite a handful of head-turners over Charmaine's baldness. I was aware and I was frustrated, but I did nothing. Once, a salesperson had purposefully waited for me to walk a little far from the kids and went up to Jase to ask him, "WHY DOES YOUR SISTER HAVE NO HAIR?" Of course, they had asked, making sure I wasnt aware but when I was walking towards Jase and Char, I saw them talking to Jase, I asked him what happened. To my astonishment, he repeated what they had asked and what he had told them which was, quite frankly, a shock to me. He said: "My sister has cancer. She has neuroblastoma, and thats why she doesnt have hair." It was a shock that I dont know how to describe. Him, pronouncing 'Neuroblastoma' so clearly like a doctor was not what I had expected and imagined.

Aside from my shock, I was definitely upset, very upset with the adults. Arent they supposed to be the adults here? Why did they do such sneaky things behind me, to 2 kids, a quarter of their age! What would be going through Charmaine's little head? And to be such sneaky animals to sneak behind me and go up to Jase instead!?!?! I am beyond mad, really. I just held both their hands and walked off. It took every ounce of my energy not to walk up to them and just let them know how hurt I was.

That was NOT ALL that happened that day. We went for lunch and yet again, from afar I saw a man staring blatantly. Another sneaky one. When I left them at the table while I go grab food, I found the man sitting on the table besides ours, with his seat behind Jase's and he was facing our table, talking to Jase. When he saw me walked over, he spinned around to face away from our table. I asked Jase what happened and he basically said the same thing, "WHY DOESNT YOUR SISTER HAVE HAIR?" ARGH. I think you could probably sense my hurt, my frustration, and my urge to scream at them, "If you have a freaking question, why couldnt you walk up to me and ask me instead? Why are you being a sneaky cat, going up to my son when I am not around to question him? Imagine me doing that to you!" ARGH.

I have to end this because its dinner time.

Just want to say we are good. :-)

Take care everyone!

Cyn mommy

PS: Pardon me for ranting. I think I kept it in my heart for too long, just had to blur it out.


jellies said...

o i feel your anger Cyn cos i am feeling it too. one doesn't need to ask to know the reason why someone doesn't have hair.
if it happened to me, i would go up to say "because my child has cancer but she is getting well soon and u know what? it can happen to anyone including YOU or your family."


Ms. Potatoe said...

ARGH adults acting like immature kids!!! I can't understand why they have to do this to the kids too, do they think kids are stupid or have no feelings? Stupid people.

shearerkk said...

Mummy.... dont take it too hard on the adults actions, you have much more things to focus on than that... and maybe you are abit stress out too.

Sometime, human dont really know how to behave; drawing a line between sensitive and non- sensitive can be abit tricky.

Imagine this :- if all those adult had done the way you would picture it, coming towards you and asked directly the same question, having you repeat the same answer over and over again, stating the fact of the condition of Char; dont you think it would be equally painful for you to be thinking abt it over and over again?

Well.. like I said, social behaviour is not a easy skill. Lets focus on our fight with the monster than these adults.

ying said...

be strong, mummy. y waste energy at getting angry at ppl who aren't worth ur time? as long as ur angels understand the situation...
while it's unfair for them to have to act & think beyond their age, but life isn't fair. ur strength & perseverance are inspiring to me, & i hope i can b strong, like u, for my children too.
keeping u in my prayers ♥

2amYH said...

Social behavior need to be taught and learn. Obviously these adult are not taught and they did not learn properly, so insensitive and crude....don't think over it too much. Take care.

2amYH said...

Social behavior need to be taught and learn. Obviously these adult are not taught and they did not learn properly, so insensitive and crude....don't think over it too much. Take care.

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