It's Halloween here.

Sunday, October 31, 2010

Jase and Char had the day filled with Halloween activities today and tire themselves out entirely. They are now sound asleep.

I don't know what the pain on her shin means and I don't know if it was her shin that she was experiencing the pain or they could be entirely different areas of pain. Whatever that means, it just sucks big time! I'm angry, I'm so pissed at this damn thing called cancer!!! If it's something I could kill, I would turn myself into some montrous killer and kill this beast a thousand times and it would never even be enough to justify all the pain of the families whose kids are so cruelly ripped away and all that our little ones have gone through!!!

I'm so fearful, so worried and so anxious that I don't know what to think! All I know is that it's just NOT good to have all this pain while we just completed 5 days of chemo! The poison should have killed all the beast and there should be no pain... Every mention of the word 'painful' literally rocks my world violently. The chill and tremble that my body involuntarily reacts from the word 'PAIN' is beyond any normal healthy person's comprehension and no one should ever have to understand it either. Because it's almost inhumane.

Alot of my friends always tell me to trust my own instincts because a mother's instinct is unusually precise. At this moment, I am hoping that I am so wrong! I cannot stop worrying and I cannot stop thinking either. I'm still pretty sure that her left leg doesn't look right but in a very sick way, I'm almost feeling 0.1% relieved that I think I figured out this new area of pain. But yet, I'm so heartbroken... Why is it her shin? She never had disease on her shin. It shouldn't be coming from anywhere except her left femur. In fact, there simply should be no pain! Can you feel my agony and my frustrations and how sick this whole situation is? I don't want pain and I hate the pain but yet I'm somewhat relieved I found the site of the pain and yet it's tearing me apart with what I found!!!

Tomorrow is Sunday. I will have to live through one more day of hell. How ironical. It's actually Halloween day tmr so seems like I'm already in the right dark mood. Anyway, I already emailed Dr Kushner and we shall hear what the doctors make out of this whole insanity in my life. More scans maybe??? I dunno. Please don't ask me how... I simply dunno...

Charmaine is still walking with a slight limp and yet continued to dance through the Halloween party tonight. I'm glad that while she's really tired from the chemo, she really seem to enjoy herself so much. Nevertheless, seeing all these kids dance, laugh and play makes our reality a thousand times more painful. They all look so happy... And every now and than, you may look at one of the few whom you know their time is almost up... It's so hard, so tough I have no idea how medical professionals even live their lives like this on a daily basis. I can't, I simply can't. It's too painful and it's eating me away... Every single day. And the truth is I'm not left with much...

With your blessings and prayers, may the light finally shine on us, shine on my little princess and give us the miracle that I've been praying so hard for everyday... Please say a few more prayers if you could spare us some. I'm so worn out and I feel beaten... And the verdict is not even out yet!

Please pray that Charmaine's pain is healed overnight and her left leg will be as normal as any 5 year old can be. Please pray that there is no progression, the cancer did not spread and that Charmaine will win this battle and return to life of schooling and growing up normally.

Thank you all.

Cyn mommy

Hoping that all is a bad nightmare

Saturday, October 30, 2010

Not in the mood to write at all... But NEED all the prayers I can get for a miracle...


My facebook status:

I've lived 623 days of my life not knowing anything except cancer. Used up all my smiles, lost the ability to play, forgotten what it's like to be a human, barely remembers my friends' birthdays and yet, I just seemingly found the source of her left leg pain - not her left knee, not her left thigh BUT her LEFT SHIN. Feels like I'm hit with another blow at my already bleeding wound.

I must be over reacting and wrong right??????

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.

Falling hair, like the falling leaves of Autumn

Tuesday, October 19, 2010

I wanted to blog a few days ago but I didnt know what to write... Now, I wished I had blogged a few days ago because it would at least have been a boring but blissful entry.

Nothing much unusual the past week for us, in fact, nothing much unsual is a great gift to us, especially me. We had a good time, being ‘normal’ and during those few moments, cancer wasnt the dreadful monster because I think I sort of forgotten it. While it was extremely tiring for me, because of our daily morning radiation and shuttering between hospital and school, Charmaine was walking, smiling, laughing, being the cheeky monkey she is! And THAT IS PRICELESS.

Last week, I was also on the watch out for falling hair... however it didnt happen and as we got more busy, I had totally forgotten abt falling hair... Even with Charmaine admiring and commenting on her hair 24/7, I had clearly forgotten all about falling hair...

This morning, reality struck. And how cruel can it be.
I noticed them falling off almost everywhere. Charmaine hadnt realised it until just a couple of mins ago when we are all getting ready to go to bed. She took one look at her pillow (which I had stupidly forgotten to clean) and than started crying very sadly. I didnt know what to say. Tried to stop my tears from falling. Jase went quiet hearing Charmaine cry and than all of a sudden, he said: “You are making me cry too...” . Before I know it, we were all hurdled together, sobbing. I think to an onlooker, we might really seem ridiculous, crying because of falling hair which will grow and regrow... To be honest, I find it ridiculous myself. Why am I crying over falling hair? This really seems insignificant compared to the big picture. But its my baby’s tears, my baby’s sorrow, my baby’s cries that is burning my soul... When will she get a break...

There were things mentioned to me by the doctors that I never mentioned before... Words that has been rining in my ears since Char has been considered to have progressed.


Even typing out the word ‘chronic’ makes my hands tremble... Everyday, we learn something new, dont we? Everyday, I learn the scary, frightening emotions a new word can inflict onto me. They say that one will never be able to look at the same person the same way they used to do once they get hurt. I, instead, will never be able to look at WORDS, the same way I used to do.

What does ‘Chronic’ mean to us?

Doctors fear that Charmaine’s cancer is displaying symptoms of being resistant to chemo, hence the progression. However, it also seem to be growing slowly... In terms of treatment, our GOAL, our focus that I have always been looking forward to may take a long long time to reach... Basically, Charmaine will ALWAYS need some sort of treatment until we find a CURE for this sick monster.

Subconciously, this has probably been the biggest reason why I have not been blogging as much... on top of us being really busy with treatments. And now, with her getting so upset over her hair loss, and with me knowing that she will probably not stop treatments until our miracle happens, it just makes me even more upset...

I think I am not in the right frame of mind to write tonight...
Please allow me to copy another NB mommy’s words which describes my feelings entirely...

SO...Because, there isn't a specific cure for Neuroblastoma, the goal is to always stay one step ahead of it. The only way we can do this is through the TRIAL THERAPIES that are available through limited funding for our kids. So in hindsight, we all need a cure to save our kids, which is simply....NOT we use what is available to stay ahead of the game until the next "TRIAL" is available to add to our arsenals. GOT IT??. NB acts differently in every child, and there is NO ONE CLEAR CUT WAY TO GO AT IT, which creates a bigger challenge for research. It is a diabolical hell in retrospect to be at the mercy of this cowardly bastard of a disease that reeks havoc on our kids, but then you have to thank it for being as kind as it has by not taking their lives entirely, even with all it has done.....MY APPLICATION FOR THE CRAZY HOUSE, now complete.

By Francesa Demers~~~

Cyn mommy

One step at a time...

Saturday, October 9, 2010

Once again, I have no idea where I last stopped with our updates and I am getting increasingly confused with dates and events. Memories are jumbled and emotions are all over the place.

Nevertheless, we continue to try and make the best of what we have and pray for the best on a daily basis. Some days, it gets tougher, while some days, the simple pleasures are enough to make me forget our challenges momentarily.

On a typical difficult day, PAIN is something we struggle to deal with. Charmaine, having to cope with the excruciating pain and the physical discomfort of being immobile. Myself, often crumbling at the sight of seeing my own baby suffer and crying, and yet I am totally helpless. Jase, having to help me run around while Charmaine is immobile.

On the other few good days, with no pains, no fevers, no hospital appointments, and no chemos, we get to be like your average family! Waking up to a lazy Sunday morning, with no plans other than rest, play, eat and poop, it is such a joy. We get to smile, laugh, complain about the cold, whine about the boredom, stress about what to have for lunch and dinner.

In terms of treatment, Charmaine has completed 5 days of chemo (Cyclo/Topo); her #14 cycle on 1st Oct. In the past week, Charmaine has also completed 3 sessions out of the scheduled 10 sessions of radiation to both her femurs, which will run through to 19th Oct.

Charmaine’s right knee pain subsided on the day after we completed chemo. Coincidence or chemo at work, guess we will never know. But our ‘normal’ life always seems so short-lived. Barely 6 days later, yesterday she started to walk with a limp again. BUT THIS TIME ITS HER LEFT KNEE. Do you know how she moves around the room? She uses her butt to ‘slide’ around like a snail... My heart aches so much. However, she remains cheeky and cheerful. She would always giggle and laugh and seem to enjoy her new found mobility. Charmaine is the reason why my heart is numbed with pain, and yet SHE is also the reason that I am still able to see hope and feel the happiness.

On the 8th day post chemo, when we tested Charmaine’s counts, it has already dropped to zero, nothing. That means she has no immunity at all. This is what I fear most and is also the reason why I dread high dose chemo so much... The chemo that Charmaine just did, is supposedly light and some kids never even go neutropenic. Yet, my dear baby, not only does she goes completely neutropenic, she also reaches neutropenia at a much shorter time. Usually, the body’s immunity gets hit only around day #14 and recovers around day #21. But Charmaine’s immnunity reaches zero almost after we complete the chemo... It really sucks... All these just mean one thing, that her bone marrow is so so so weak now... so weak that the danger of her bone marrow not recovering on its own is getting higher and higher...

Everyday for the past week, I have pretty much been living with constant fear, worry and paranoia. Her being neutropenic means that if she spikes a fever, it will be a direct admission into inpatient ward and over here, we have to stay much longer until her ANC reaches 0.5! (May take almost 2 weeks since they bounce up around day #21.)

Neutropenic from the light chemo, and daily radiation just means that her counts will be further suppressed. So she is going to remain neutropenic for a much longer time... and of course, transfusions wouldnt be a surprise. In fact, Charmaine had her first blood and platelet transfusions yesterday.

Neutropenic, the immobility that comes with pain, the constipation that comes with immobility, fever risk, low platelets and blood... these are Charmaine’s daily challenges and my daily worries and fears...

The past week, I have to drag both Jase and Charmaine up by 6am, rush to hospital, wait for Charmaine to complete her radiation and rush both of them down to school to drop Jase off, and than rush back to hospital again for more procedures, if necessary. And of course, everyday, I have to keep track of the timing, making sure that we rush back to school in time to pick Jase up from school. And if not, I have to call for help...

Alright, thats pretty much what is going on in our lives while I have not been updating... Its time for me to go check out on the kids...

May everyone be blessed with happiness and good health.

Cyn mommy

PS: We won the USD $250,000 grant for MSKCC, thanks to everyone single one of you who have been voting daily for us. THANK YOU SO MUCH. With options running low, this means too much to me!
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