Falling hair, like the falling leaves of Autumn

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.

CHRONIC NEUROBLASTOMA

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 THERE....so 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~~~

Love,
Cyn mommy