A Year Really?!?! {2013 February 23}

This was something I wrote last month as we approached her one year since diagnosis. These emotions are still real and fresh and so I share.

Hasn’t it been forever since we started this fight? Or maybe it was only yesterday…I’m lost!

This is one hard road, not the fast paced highway type, not even the bumpy offroad type, this is the off beat road travelled by so very few that you barely see your way within the thick brush. Family and friends can offer support of all sorts and are we ever rich there, we have amazing love all the way around but do they truly know what this wrenching aching feels like inside. The lump in my throat has grown so large after watching my baby go through what she does daily that I can’t compare it to anything ever felt before.

Can I turn to those dealing with child disabilities? Maybe those dealing with behavioural problems…Oh wait how about the parents facing childhood cancers…they must be able to help me relate and find a way to air so I can breathe again. As I look around, there is no one…a few distant people around the world offer their understanding and support but not over a coffee or meal, simply by text on a screen. There are no books to read or prepare you for what is to come and there are no studies or cases to fall to for comfort that state “it will be ok”.

It’s been a year, tomorrow will be a year since diagnosis, 365 days ago today an MRI searching for a brain tumor accidentally found her cancerous neuroblastoma tumor on her adrenal gland. 365 days ago I prayed to god and he answered me, I asked him not to let our baby girl be consumed by a fate of cancerous tumors in her brain…after hours in that MRI, I was filled with tears of joy. Although we didn’t have answers as to where her symptoms were coming from, I knew we didn’t have to deal with cancer…or so I thought. Who knew 24 hrs later they would share what they really found that previous day in the MRI.

I am not sure what I am trying to accomplish by writing this out, but it feels like my only outlet and the only appropriate place to type out these words without feeling judged…maybe I am wrong though and maybe judgment stands here too.

It’s lonely…for Abbigail and myself. As hard as they try, there is no one that truly gets it like I do. She doesn’t look sick half the time yet we pump her full of poison, blood products, steroids, changing her immune system forever, causing more symptoms on top of the damn cancer and OMS produce and unless she is bald and vomitting, people just don’t get it! I want to throw up when I actually sit and think of what my daughter has gone through and continues to and what she will have to endure for the rest of her life. This isn’t going away! Yeah the tumor is gone right now but if we were “safe” from cancer they would not put her through MRIs every three months for hours on end searching for more cancer.

Ahhhhhhhhhhhhhhh I hate cancer and I hate what it did to my innocent little girl! I hate what it’s doing to our family. Cancer gave her OMS and that will never change. No amount of chemo will undo the damage done or stop further damage. She is 1 in 10 000 000 … in a medical book and irreplaceable in our hearts and I will keep fighting with her and for her but for today I’m tired…and so is she.