Feeling an all time low...

I am finding it hard to write... I am finding it tough to control the tears... I don't understand what I'm feeling anymore...

What do I say to you? What do I even say to myself... I no longer know what is going on... What to think? How to decide? Who can I trust?

All I know is that I'm going through the motion every minute of my life. I wake up; get Jase ready for school; feed Char; go to hospital; pick Jase from school; feed them and than sleep to another day of routine. Like a robot, void of love, faith, hope and happiness.

I remember how to laugh and I still can smile but my heart feels so numb. Some hours are easier to pass, some days feel more grim than others... In one week, the number of bad news we hear in the house is enough to make me want to wither like a flower... Char's progression from nothing to something so large despite radiation and chemotherapy just makes me want to lay somewhere and turn myself into dust... Another 2 yr old girl who just recently completed chemotherapy and is about to get back to her normal life just suddenly lost conscious on the same day we hear our horrible news. They found a tumor in her head. That night, you see tearful faces of moms vs the laughters of the little ones unaware of the harsh reality their fate has brought them...

I still dont know what to write... everything is a jumbled mess in my head, my heart and my mind. Its as though that staying away from here, from updating our Facebook status 'helps' me in escaping all these. Maybe subconsciously my mind doesnt want to have anything to do with neuroblastoma or whatever cancer there is. I am drained. I am worn out. I want to hate something/someone. This fight feels so unfair. Why couldnt I throw my punches directly at it? I am fighting blind all the time. My enemy is out of sight, lurking, hiding and probably having a good time seeing my defeated, dejected self now. And this coward is using the most sickening underhand method towards me!!! Fight me openly!!! DONT TORTURE MY BABY LIKE THIS!

To wake up one day and find that her leg has grown more bow-shaped than the previous day is like having a knife stab at my heart a thousand times but at least when its a knife wound, at some point, I will catch my last breathe and not feel anything. But to force me to watch daily and fear daily, having absolutely no idea what is causing it and getting no help, no answers from the doctors is driving me nuts. I have no idea how is it other parents in the house can put on such a brave front, always striving to find the good in spite of it all. Even thankful for being able to spend Thanksgiving together, in spite of it all.

I cant. I dont want. I want to cry, to curse at every darn cancer I know of. I dont even pray the past week. What has all my prayers brought? Nothing. Absolutely nothing but one bad news after another. I lost my direction totally. Whats the point really. Its like I am just trying so hard to act like there is something I can do and that is to pray. I have nothing to be thankful for, at least nothing that I need. Yes, there is always the bright side to everything.

But today, I am done with searching for that bright spot in my life. I want to let my myself sink into my abyss of darkness, free falling, nothing holding me or pulling me back. Maybe, just maybe, only than will I reach my lowest point, hit the sea bed or touch the core of the earth or something and that there is simply honestly no other way but... up. Even this whole sentence feels like crap to me, if I may add. Like another myth, just to provide hope to the hopeless ones like yours truly.

I mean we are all programmed this way, arent we? To cheer the hopeless, to tell them not to give up, to give them something to hold on to even if its a myth... And this is what life is all about, isnt it? We all will end up 6 feet down, at some point. If everyone harps on our death, we might as well have given up on living from the day we were given life. And than, whats the point of living anyway.

Am I making sense here? I bet not. I know I am pretty much acting like a brat now, refusing to heed any advice, rejecting any support, and is all bent on living in my darkness. I dont know why am I acting this way. Truth is: THIS IS TOUGH. I am not always the positive, strong, courageous, and amazing mother. I have my weaknesses, my faults, my negativity, my fears and my desperation. And today feels like the moment of darkness has engulfed me entirely.

I dont want to fight this moment. Do you think if I stopped, call for a truce? Or take 5? and the battle can be paused momentarily? Probably not right? The enemy might be cunning and make use of my moment of weakness to finish me up once and for all? But truth is, even though I want to fight on, I'm badly wounded. So badly wounded I can barely stand up on my own. Whats more to protect my 2 little ones. Have you felt this way like I do? Like everything just seem to be wrong. Nothing is okay.

Tomorrow, Charmaine will be having a minor operation for the surgeon to put a temp into her body. They will check her counts and if her CD 4 is zero, we will have to head back to Urgent Care at 9pm to have an injection to boost her CD 4 counts in order for us to harvest her stem cells on Wednesday. I was told that the injection would not have any side effects but coincidentally met a parent here whose daughter got the same injection a couple of months back and suffered from hallucinations for over a week. I was shocked when I heard that. But its not like its anything new really. I mean I have already learned that my path will be strewn with obstacles big and small and it was never meant to be easy. To expect good news is like someone trying to win the lottery or jackpot. But yet everything when I hear another shocker, it still has that effect of freaking me out like the first time, and always never fail to upset me. One will never build an immunity to news like that, it seems.

And depending on the stem cells harvested on Wednesday, we may have to harvest on Thursday as well. And the plan is to start her on the new trial as soon as we manage to harvest enough stem cells from her.

So this is the part where I strive to be like everyone else and repeat the mantra:

IN SPITE OF IT ALL...

Charmaine is still walking/limping/running or whatever you call it, with her rather bow-shaped left leg, not complaining of pain (THANK GOD!). You would never be able to tell that we just received news of bad scan results a week ago and that she has progressed much more. She is still the same girl, smiling, playing, totally oblivious to what's in store this week. And it breaks my heart. I cannot even bear to begin to explain to her what to expect for this week. How is it possible? There must be a huge mistake somewhere. She absolutely do not fit the bill. Am I in denial? I dont know. All I know is that the docs themselves are having a hard time picture her physical reality with her scan reality. NOTHING fits except for that massive black spot on that stupid scan.

I am tormented daily on the decision. Under common circumstances, the child will be put through high dose chemo immediately almost without questioning. But yet, they have proposed a light dose with a new antibody. It definitely wasnt the norm. And I am struggling to convince myself which is better. I dont want to ruin her quality of life with a high dose but can I risk delaying the high dose for 2months while we do a light dose? What happens if she progressed even further? I am SOOOOOOOOOOOOOOOOOOOOO TORN.

But yet, we know that Charmaine's cancer is somewhat resistant to chemo and hence I do not feel safe just doing chemo alone, without something else. Hence, while high dose is norm, I dont know if her cancer cells will be killed or not. I mean those darn cells can even survive all the radiation and continue to multiply!?!?!?!?! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

On top of all these, I still have to fret about finances and all. Trying to set up new appointments with other hospitals should we run out of options in NY...

I just want to stop, wave my white flag and call for a truce. I miss home. I just want to go back home, lay on the same bed, be that 16 year old girl who can just hide in the room, from the rest of world, have a good cry and not have to carry any responsibilities on my shoulder...

My faith is being rocked big time but if you have faith in me, please help me pray that the operation will go smoothly tomorrow and that we will be able to harvest alot more stem cells than what is required without that hallucinating injection but just GCSF alone. And that we have finally found the right treatment for Charmaine. I NEED THAT MIRACLE NOW.

Love,
Cyn mommy