Wednesday, February 1, 2012

What happens when you find your bitch bone!


Mallory will be having a biopsy tomorrow morning. She will be under general anesthetic and while they have her under they will be replacing her broviac as well.

They tried to tell me that they would let me know later today or tomorrow about what he said. And I would NOT accept this. That I HAD to know NOW that I would NOT wait for an answer. That they HAD to find me SOMEONE that could give me some answers. And I got a call back 10 minutes later. BITCH BONE WORKS AFTER ALL!!!

I am 100% for advocating for my child, I will not accept "ok" or "call back later". My child has a cancerous tumor inside her that is growing, I will NOT accept a waiting period. Time is NOT on her side, Neuroblastoma is a fast moving cancer, and we need to kill it as fast as we can so that Mallory can keep on living. So that we can just get back to worrying about her rolling over, or when she starts crawling, or when she starts talking. Instead these things are on the back burner, as long as she lives 1 more day thats all we care about right now.

We play the waiting game again

Jillian was standing at her door this morning saying "MOMMA OUT! Mooooommmmmaaaaa". So I knocked on her door and said "I'm coming" and she squeals back at me "YAY!!!!!!!" I open the door to get the biggest leg hug of my life. I sat down on the floor and she wrapped her arms around me and just let me hold her for a good solid 5 minutes. She knew I needed that this morning, she just knew.

Still waiting for our call about the biopsy this morning. The problem with this adrenal tumor is it is infused the inferior vena cava making a resection very tricky. Not impossible but very tricky. If she looses her 2nd adrenal she would also be on medications for the rest of her life, I'm pretty sure if it comes down to it, I'll take that over the chance that the cancer spreads.

I think the crappiest thing about this all is how naive we were. This happens to "other" families, Not us. Definitely NOT us. It still seems like a nightmare, that's partly because it is.

I thought life would go back to "normal" but that's not the case. I have appointments every Monday and Thursday, but some are 2 hours, some are 8 hours long. It just depends. Sometimes we go in on Wednesdays, sometimes we have a surprise ER trip. So I cannot plan anything out, I can only take the girls a few select places that I know are clean. It just gets old, when does life turn back to normal?

We continue to pray (don't worry I asked God to forgive me for all of my horrible language yesterday). I have faith, I know God has a plan for us, I know that he is working even though we can't see it.

It just seems like we go 1 step forward, 2 steps back. We're pretty much stuck in limbo. I can't get anything done because I am too busy feeling sorry for my child, I've let everything fall apart around me. I'm not sure where I find strength, I'm not sure how I find motivation. I just take it minute by minute and that's the ONLY thing keeping me a float right now. I put on a brave face for everyone, I smile, I laugh, but inside I am one giant pile of mush.

This is MY baby, the one that I gave birth to. The one that showed us from the beginning that she was "special", that she had a total different attitude, a different personality, a different EVERYTHING. She is strong, she is sweet, she is amazing. And I am totally giving her permission to sleep in our bed for the next 18 years if she wants. She just has to keep on fighting, she has to make it to the next day, she has to see many many birthdays.

When I am ready to give up, throw in the towel, that sweet little smirk of her's comes out. I am going to keep moving on because I NEED that smile. I need her to someday hug me, someday give me kisses, she teaches me how to be a better person, a better mother, and a better wifestobe. Shes taught me so much already, that little girl is a rock star, and we will fight every minute of everyday until she is better.