Tuesday, February 7, 2012

The waiting game

We are scheduled for Chemo this Friday at 11:30.

Today I am nauseous. Sick to my stomach. We are playing the waiting game once again.

Dear Lord, please HEAR my prayers. Please look over my baby, please keep her safe, please let her live the rest of her life. You gave this child to me for a reason, and I just need her. Please heal her. I am having a hard time keeping faith right now, please heal this as well. Amen.

There was no news on the MNYC amplification yet again today. We knew that it would be later in the week, I just held out some hope that we would get some answers so we can start looking forward. I am having a hard time today. I sat on the kitchen floor Jillian cuddled up in my lap and Mallory sitting in her bouncer and just cried and cried and cried. I smelled their hair, I touched their skin, I just cried.

I know that I HAVE to stay positive, that I NEED TO BE STRONG. I have faith that my Malibu is a fighter, but I am having a hard time keeping my mind focused on the goal right now and that's because there is so much unknown. Please let this tumor be no different that the last one, please let this chemo work.

She just amazes me, as I cried and cried and cried, she giggled and giggled and giggled. I wish I knew what babies were thinking. I just cannot lose her. I can't. I would trade places with her in a heartbeat.

Life doesn't go the way you plan it, it just happens, there is a reason for every season. Right now I am struggling, struggling so much. The last 2 months have been so slow, every day it just drags, every phone call puts my stomach in knots, every little thing bogs me down. I keep telling myself we will all be ok, we will come out of this stronger than ever. We already have come so far. Now we just wait for the rest of the puzzle to come together, and please let it have every single piece.


I am sitting here eating hot dog buns, yep totally honest, open and not gonna lie I am pretty much really drunk. So to sober up I am eating hot dog buns (It's the only fresh bread we have in the house currently so I know it probably would be much more appropriate to say bread but that's not the case). I have 100% decided that I am writing this for ME, for Mallory, and we write this because we are not here to butter up Cancer, any of the crappy things that come along with it, or the situation we are in. And I am 100% that I am REALLY drunk right now and I needed it.(THANKS MICKELLE!)

Ryan and the girls are sleeping, and yep I am sitting here eating hot dog buns. I am pretty much as awesome as it gets.

I will probably regret drinking by the time 8 am rolls around.

I tried to lay down, but I have sleep induced anxiety, pretty much my bun of messy hair hits the pillow and every possible situation runs through my head. Cancer is not only consuming my child but me to. I am physically losing my hair, it looks like chubahka (however you spell it) is living in my bathroom currently. So when you pick stray hairs out of Mallory's mouth assume they are from me because they are. My house is covered in hair and I can't blame my cat this time.

I can't believe it's been over 2 months since Mallory has been diagnosed, seriously where did 2 months go? Ever since this past weekend she has laid down at EXACTLY 11 every night, she's been eating 4-6 ounces, and is just doing great! She is back to normal baby mode again. We have scheduled to be admitted again friday for Chemo, they should have her pathology results back by then and a game plan ready so we are just being put down for that day. We have nothing to go by except this.

This week is dedicated to vegging out, cuddling up, and answering non stop phone calls in between. After several phone calls today I got prescriptions refilled, questions answered and insurance information filled out. Monday is done (CHECK!), we should hear something tomorrow about an admitting time and possibly pathology results, but most likely Thursday for those is what they told me. They have to grow the tumor in a petri dish and do tests on it which is why it takes so long. If only they knew how to cure the tumor instead of growing it would be nice.

I did forget to mention that we picked up Jillian yesterday and I was pleasantly surprised to hear her say "Lets GO! READY". She loves staying with Nana and Papa but she was ready to come home. She JUST turned 2 on December 30th so she is JUST understanding things a little bit more, so it freaks me out to leave my Jillian with anyone for long periods of time because I am terrified of her not remembering what "home" really is. (Not that my parents don't do an AMAZING job, because I totally always get the same kid back that I left with them. I am pretty sure she learns a few new words every time she's there too which is always a PLUS. Our new favorite "STOP THAT"). This is not the case, she is begging me for attention 24/7, I love the extra snuggles, the kissy lips, and the non stop chatter. I miss this when we are in the hospital, it breaks my heart. It's also hard to bring her up there, she is a LOT of work, we are constantly saying "no", and it just isn't fair for her because it isn't any fun. She deserves fun, she deserves normal, she just deserves so much and right now so much of our time is dedicated to Mallory's care that I try not to lose sight of this. Our goal is to have a well rounded child, with a stable home, great parents, and an all around FUN childhood. And the fun part is only possible if we keep her "innocent" as long as possible. We are trying so hard to make the best out of this.

So tonight was good, I did cry, but I laughed, I laughed a lot and it felt GREAT! I climbed into bed, touched Mallory's head and decided I couldn't sleep but now that I ate my hot dog buns I think it's time to try again.

Good Night All!! :-) - Ashley