Surgery and Hospital stay day 2

Audrianna had her surgery on Friday August 19th to remove the tumor they found between her spine and her aorta. The surgeons were able to remove at least 75% of the mass but the other %25 percent was wrapped around her aorta and the main artery supplying the blood flow to her left leg, to try and get that she probably would have lost her leg or bled out so the docs left it there and we hope that they can now get it with whatever course of treatment we do next. My poor baby is in Alot of pain, her poor belly was cut from one side to the other so they could get in where the tumor was...right now she has an Epidural Infusion running into her back,Dylaudid every 3hrs and Toradol as Needed..Plus Benadryl every 4hrs as needed for the itching and she is still restlessly tossing and turning from the pain. She wakes up long enough to ask for more pain meds and go back to sleep. Sitting here watching my poor baby in pain is making me crazy and now she has to be on oxygen to because everytime they give her pain meds she desats-:(...i want to stand and scream WHY DAMMIT WHY!!!
Today my parents came to see us and tried to cheer audri up but that wasnt happening and she slept through most of the visit but it was still so good to have them here,I thank god for them everyday because without them i dont know how Audri.Kyra and I would have fought this battle the last 2 1/2yrs.
We also had a visit from our Dear Friends Annette and Jennifer Mckeon, who came bearing laughter which was greatly needed and lunch which was much appreciated.Poor Annette thinks audrianna hates her lol but really she just picks on her because she know she thinks that!! Annette bought audri a Butterly Light and audri didnt want anything to do with it while Annette was here but as soon as she left she asked me...Mom where's the Butterflies Auntie Nette bought me...omg she is such a stinker! While annette,jen and i were looking up treatments on the computer for relapsed neuroblastoma i saw Sommers Mom and i was like omg what is she doing here and went chasin her down the hall...Sommers Mom Jen and i have been through this fight together like family and Sommer like Audrianna was Cancer Free...today my heart broke when Jen told me Sommer is relapsed and its bad-:( WHY the F*&* cant Cancer leave our kids alone, why do they have to suffer?? And goddammit most of all WHY ISNT THERE A CURE YET???????????? These are all the questions i want answered and i want to scream them at the top of my lungs till someone gives me an answer. Why do kids who are told they are cancer free and you think they are gonna go on and be normal kids and goto the prom and get married end up back in here dying?? Audrianna is 5 and Sommer is 12....how is this fair? AND why oh why does everyone preach to me about how god is going to fix this?? Come sit in an oncology ward for an hour,meet these babies and then tell me if your all powerful god is sitting here with us because right at this moment im having a hell of a time finding the FAITH to BELIEVE that!!

Surgery Tomorrow

Audrianna is having Surgery on Friday August 19th to try and have her tumor resected, if they cant get the whole tumor out they will just biopsy the tumor to see what we are dealing with.The doctors are hoping they can get the whole thing but its in a very bad spot so they arent sure till they get in there. The docs say it doesnt look like its wrapped around her Aorta or her Spine or her bowels so they are hoping they can get it out without any problem but its in such a tight spot they arent sure. Oncology isnt sure if we are still dealing with Neuroblastoma or not because her urine levels were fine,so it could have mutated into a different type of cancer or it can be a benign tumor which is what im praying for. If it has mutated that could be a good thing or a bad thing, good because then they will have different treatments to use on her that she has never gotten before....bad cause it could be something worse not better uughh the waiting and the worrying is the worse part. They could go in there, cut her open and find out its benign and we worried all this time about relapse for nothing BUT really in my cancer mom heart i dont think thats what they will find because it has NEVER been that easy, yet in my logical brain im trying with all my might to BELIEVE that is the case. One of the hardest things about watching your child go through something like this is you never know whats going to be thrown at you/her next.I have found in the last 2 1/2 yrs of treatment for Audrianna that there is NEVER good news without bad news following and that to get your hopes up in anyway always means having them crushed later.Our Family is trying so hard to stay positive...keep our chins up and know she will be ok...but its a really really hard and scary place for us right now-:( ....i am asking all of you whether your atheist,catholic,whatever....please ask the universe, the goddess, god, or whatever else you talk to for guidance to help Audrianna through this surgery. The doctors say if all goes well she might be able to come home monday, if there are complications we could be there much longer. I dont always have computer access there but i will try and keep everyone updated and informed on how things are going......love the bartol family!

New York Trip

First i want to say a HUGE THANK YOU to Gwen Cardaci, Alana Geller and Kathy Geller the wonderful family that sponsored Audrianna's trip to Ny to see the beach!!!!! They are FAMILY to us and treated all of us wonderful. Audrianna and Kyra LOVED the beach, i have never seen there smiles bigger or either of them happier then the day we surfed the waves and played in the sand. Both girls had such a wonderful day even if they got sunburned after being smothered in sunblock over and over....they are like there mom Irish/Italian girls that Burn and then get a small tan and Burn again lol but they didnt care about the Burn as long as they were playing in the waves, looking for seashells and digging a sandcastle-:) After the beach we went to adventure land and went on rides with the girls....the last ride of the night for Audrianna was the lady bug roller coaster which she rode 12 times in a row and stayed on till they closed the park she loved it so much.....the next day was another fun day at FUN LAND an inside playhouse on long island. The girls had an amazing time with Gwen,alana and allison and then back to the hotel to swim. The next day Gwen's Aunt Pina(hope i spelled that right) and her Uncle Ken invited us to there house for lunch before we headed home and the girls got to swim in there pool and both learned to jump off a diving board into 9ft of water in there vests!!!! After that we said our sad goodbyes and made our way home and back to reality....But this is something Audrianna and Kyra will NEVER FORGET and i will always have these memories thanks to Gwen and her Family...we love you guys so much thank you from the bottom of our hearts<3

Hardest Conversation Ever

Tonight i had to have the hardest conversation of my life with a 3yr old and a 5yr old. Tonight i sat both girls down and explained to them that Audrianna was either going to have surgery or start chemo next week and that Kyra wouldnt be able to stay at the hospital with us. Audrianna wanted to know if it was going to be Good Chemo(one that doesnt make her hair fall out) or Bad Chemo(one that makes her lose her hair again) And Kyra wanted to know why she couldnt get Chemo to so she could be with her sister-:( Audrianna and I both tried to explain to Kyra she didnt want to have to get chemo because its Yucky and makes you sick, but all Kyra cared about was that if she got chemo too she wouldnt have to be seperated from Audrianna-:( And then when i told her she could come to the hospital as much as possible to visit and we could go on webcam everynight she cried and cried im gonna miss my sister,over and over. My heart is Broken in a thousand pieces right now....Audrianna is 5 and was hugging her sister and reassuring her they were never gonna be apart long and she would always love her sister and come home after chemo!!!!!!!!! Kyra is 3 and couldnt understand why she cant sleep in audrianna's room at the hospital and make her sister feel better.
Im 39 and i dont understand why this is happening sooooo i can imagine how hard it was for my 3yr old to understand....I HATE CANCER,GODDAMMIT WHY CANT IT LEAVE MY BABIES ALONE!!!!!!!!! I have never been more sad or angry in my life. I am so tired of being scared and i know audrianna is too and now Kyra who was to small the first time has to live with that Fear and Sadness too. I really wish i would wake up and this would have all been a bad dream.....but if wishes were rainbows right?

I wish people understood my choices

I sit here crying and wondering why i always feel so alone, why cant people understand the choices i make in my life arent only for me?? My husband and i are mostly estranged because cancer sucks and has torn our family apart. Everyone wants to know WHY wont i throw him out since we fight and he isnt really an active part of our life...the answer is WE HAVE CHILDREN AND ONE OF THEM HAS CANCER!!!!! I will not Tear My Kids Life apart worse then it already is just because me and there dad cant always get along. There Father Loves them even if he doesnt always know how to show it and even if he lives in his own bubble and wont admit that Audrianna is sick and may die..but thats his way of dealing with this horrible fucking disease thats tearing our family apart.
I am so tired of the people i love the most looking down on me because they feel i should be stronger and just tell him get out and go away...what they dont realize is i am being VERY STRONG by not telling him to get out and go away, i am being as strong as i can to keep my kids happy and i wish with all i have that people would respect and understand that.
Jim is not a bad person,he has a good heart, he just doesnt show it and lives in a different world then i do now that audrianna is sick...i dont hate him as a person i never could we have been together 20yrs. I hate that i feel like he has left me to fight this battle with our child alone, i hate that he cant deal and i have to make all the choices and decisions...i hate ALL THOSE THINGS but i dont hate him. Just because we arent the same people we were 20yrs ago or even 2yrs ago when Audrianna was diagnosed doesnt mean we dont still Love and care fo each other it just means the Love has changed and that this disease is Killing it slowly piece by piece no matter how hard we try not to let it.
Cancer doesnt just affect the person that has it, Cancer affects the whole family, your friends,everyone around you and sometimes even if you beat the cancers affect on the body, the cancer still wins because it tears apart the family and the friends you thought would always be there.
Im sitting here right now listening to my girls fight over CRAYONS of all things and to most moms the yelling and screaming that is coming from my living room would make them crazy, to me its the most beautiful Noise in the world. I have friends that cant understand why it doesnt bother me if Kyra pulls audrianna's hair or vice versa, or they beat each other up, why doesnt it make me crazy and yell? Because TOMORROW they might not be able to do that so SCREW IT let them fight,cry,make a mess and tear things apart TODAY because they can and they can do it TOGETHER.Right now all i care about is that Audrianna can still Yell and be a Kid even if it means beating up her sister or her cousin.
One thing Cancer has taught me is that you have to live for today and stop sweating the small stuff...who cares if the house is a mess, or the kids are fighting and beating each other up...as long as your all together when it happens??

Tomorrow is Scan Day

As i sit here tonight watching my 2 beautiful little girls sleep all i can think is please please please let the scan come back normal...please please please dont make me have to tell them any bad news, please let them continue to be children not Small Adults, which is what kids with cancer and there siblings become. I think every adult in my family is terrified of tomorrow, terrified this scan will show relapse and we dont know how to deal with that...But we are also trying with all we have to be POSITIVE and say she is NOT RELAPSING she is so tough and she has already beaten this so there is no way in hell this scan will come back bad.I think the worst part of the scan is the wait to find out the results, the waiting is enough to make you crazy and your hair turn grey overnight. I ask that anyone reading this says a special prayer to god/the universe/the goddess...anything you believe in and ask them to please let Audrianna still be N.E.D. and not have to suffer anymore!!!!!!
On a Postive note after her scan we are going to act like nothing happened for a bit and get in the family car and drive to Columbus Ohio so the girls can participate in a Fashion show Hosted by Nellie's Catwalk for Kids, they are going to be Models and they are super excited. I have always said i would NEVER stop Audrianna from doing anything she wanted to do incase there were no tomorrows, so even though we have the scan results hanging over our heads we are still going to let her be the best Model she can Be<3 Thank You Nellie for Making this trip possible and sponsoring our family so that we were able to travel to Ohio and be a part of this!!!!!
Goodnight everyone, dont forget those special prayers tonight<3

Scared, Depressed and Trying to Smile

Ever since i talked to the doctor on wednesday i have been living in a constant state of fear and worry,wondering if Audrianna has relapsed.Both Audrianna and Kyra have been sick since friday and i am praying with all that i have that the spot they saw on the CT is an Infection due to this wonderful summertime cold...BUT that's the logical side of me, the Terrified Cancer Mom side of me hasnt been able to be that optimistic and is still just putting on the Fake Smile for everyone to get through the days. Now with Audrianna being sick and having a Cough im afraid they are going to be rescheduling her Scan due to the fact they wont sedate her if she is sick and then we have to wait LONGER and the Waiting is the worst part....the Not Knowing is worse then the Knowing. Once you know the results one way or another then you can move on and figure out a plan from there,you can handle whatever they tell you even the bad stuff because you have to...but the waiting uuughh the waiting can make you feel like your suffocating/drowining and never gonna come back up for air until you get that phone call that tells you one way or another...relapse or clear scan!!!!!
I tried to take a break from the worry this weekend and we spent the weekend with Great Friends...Gwen,Alana and Kathy came in from NY and we had some retail therapy and lots of swimming even though the girls werent feeling the best. I just want to say Thank You to all of them for helping me Smile through this weekend and giving me and the girls a great time and lots of love.....xoxooxx
But now the weekend is over, everyone has gone home and its just me alone with my thoughts again.I had such a meltdown earlier i was yelling at everyone for no reason and i hope they will forgive me but i had to let some of this anger out before i just burn up. I even locked myself in the kitchen and threw things at the wall and one of them was my New Nonstick Frying Pan which i Dented the whole side of and then sat on the floor and cried because i broke it uughh the emotions go from mad, to sad, to happy to i dont give a fuck in 5 seconds flat and i cant stop them.I probably wont be able to reign it all in until i know the results of her MIBG Scan and you know what...THAT SUCKSSSSSSSSSSSSSSSSSSSSSSSS....NOBODY SHOULD HAVE TO LIVE LIKE THIS....NO Parent should have to worry every second of every day if there child is going to die, no parent should have to bury there child, no parent should have to hear the words your child has cancer, or there is nothing else we can do so take your child home and make them comfortable uuughhh I HATE CANCER, I HATE THE FACT THAT THERE IS NO FUNDING FOR PEDS CANCER AND OUR KIDS SUFFER EVERYDAY!!!!!!!!!
I am so angry right now that most of the time i feel like im living in a red haze but its just like when she was first diagnosed, if i let go of the anger which is holding me up, i feel like i'll fall down and never get up and thats not what she needs, she needs me to be strong for her.So right now i am staying angry to stay strong and for some of you that's going to sound CRAZY and to some of you thats going to sound completely normal and you'll understand what i mean.
Please keep praying for All of Us that we can handle this pressure and get through this and that she stays N.E.D. and that damn spot on the CT was Nothing because i dont know how to explain to my 3yr and 5yr old that my 5yr old has cancer again and they will once again be seperated while audrianna suffers in pain and that there might be a chance they could be seperated forever-:(