Scranton for Aimee's Army Cancer Walk This Weekend

So this week has been a whirlwind of different thing since we came home from the hospital. Audrianna and Kyra were so excited to finally see each other again and be able to hug and kiss.Our wonderful friend Dari McManus THE BEST PHOTOGRAPHER EVER aka Auntie Dari went to the hospital with us for the week and then came back to the house and took pictures of the girls.She catches the soul's of the children she photographs and she travel's all over taking pictures of Sick Children,sometimes they are the last pictures that the parents have to hold onto later.One of the pictures she took of my girls speaks volumes and im going to post it here to show just how precious of a gift she gave me.


When it was time for Dari to head to scranton to help get things ready for the walk our wonderful friends Annette and Jennifer came to pick her up and of course they played with the girls for a while and here is the picture of them...Our Family..before they left.


Once everyone was gone it was back to normal lol whatever that is. Girls went to school and Audrianna was so happy to be back with her class. Then when they came home from school we went through all there clothes,toys and blankets and put about 8 garbage bags together for the victims of the horrible flood we had last week. I am so proud of my girls, they went through and picked out all the stuff they wanted to give to kids that didnt have anything.My girls gave away clothes that still had tags on them that they never wore because they wanted the *flood kids* to have new stuff too!!!!As a mom i was never so proud because i know that i have done something right in raising them,they both have very generous souls.<3

Now we are getting ready for a wonderful weekend in Scranton,Pa with our Cancer Family at the Pediatric Cancer Walk held in Honor of Aimee Dickey by her wonderful Mom Annette who keeps Aimee's Army running just as Aimee wanted. Audrianna gets to be one of the Golden Children and help cut the ribbon for the walk and she is so excited. The walk is Saturday September 17th at Nayug Park in Scranton and it starts at 10am. We love the fact that we get to raise awareness for pediatric cancer and raise money to find a cure and help stop this damn disease from killing our babies!!!!!!!! Hope to see some of you there:)
Have a good weekend everyone and we will see you all on monday, hopefully with New Pictures by our wonderful friend Auntie Dari<3

Chemo week

Audrianna,Auntie Dari McManus and I all checked into the hospital for chemo on wednesday morning.So far Audrianna is doing well with the chemo, other then complaining her tummy hurts and a little bit of itching she is feeling good.Eating isnt going so well though,she asks for food and then takes a bite and doesnt like it and wants something else,today we went to the cafeteria 3 times and i think she ate maybe 2 bites each time!!!! Audrianna's friend Karson is in the room next to us and she loves playing with *Her Baby Karson* all day when they are both feeling ok, and Karson's dad Brian has been keeping both of them laughing which is a great thing.The flooding here in danville is pretty bad and we havent been able to get any visitors since all the roads leading in and out of here are closed,audrianna is upset because nobody came to visit her but i keep telling her its not because they dont want to...its because they cant...but she is 5 and omg is she MAD!!!! She keeps asking if the hurrican is over so the rivers will go down and stop flooding so people can come visit lol she misses her sister and wants her here NOW she told me earlier. Im just glad she is feeling well enough to be mad!!!!!!!

So I spent wednesday night in the ER getting my foot looked at...last week i got glass in my foot and now my foot is INFECTED and Painful because i kept saying i dont have time to goto the doctor(im a mom,who has no time for herself) it will be fine and cleaning it with peroxide and putting a bandaid with triple antibiotic cream on it,BUT once we goto the hospital it got very painful so off to the ER i went...the ER doc did an xray and said there isnt any glass left in there and gave me CIPRO for the infection, so i am hobling around in pain while Auntie Dari chases Audrianna which makes both of them extremely happy. Hopefully i can get the infection under control because as a diabetic thats one thing i have to worry about alot is keeping my feet healthy!

Oh well i will keep you all updated on audrianna and myself tomorrow!!!!! To all our Friends and Family in the path of this horrible flood, please be Safe, our thoughts and prayers are with you<3

Chemo Plan and Life Plan

Thursday September 1st Audrianna and i went to see her Oncology Docs and talk about a plan of action for her relapse.While Audrianna played with the child life specialist i sat and talked to her doctor about what this relapse means for her since EVERY Parent of a child with Cancer and especially Neuroblastoma knows how bad it gets...Relapsed Neuroblastoma has NO KNOWN CURE AT THIS TIME...and may never have a known cure in her lifetime or mine-:( We have decided to use a Phase2 trial from Sloan Kettering which she can get at our hospital,the medicine she will get is Irinotecan and Temozolomide over a course of 5days then she gets 3 weeks off and goes back in. This will continue for 3 months of treatment before they do new scans to see if the tumor is gone or has stabilized. If the tumor has stabilized or is gone then we can continue this course of treatment because it has very small side effects, isnt anywhere near as toxic as anything else she has ever been given and will allow her to have QUALITY of Life. I also talked to her doctor about the fact that if the tumor didnt shrink or stablize or has metastisized into other lesions then we want to stop treatment and take her home and let her have QUALITY OF LIFE with her Sister and the rest of her friends and family until she is ready to go.
I know some people are going to give me a hard time about this and say im giving up and blah blah blah...but im not giving up, believe me the selfish MOM side of me SCREAMSSSSSSSS TRY EVERYTHING I DONT CARE IF IT MAKES HER SICK AS LONG AS SHE IS HERE....but then the sensible Mom side of me that has watched other kids suffer says...that isnt what she would want, Audrianna is a Vibrant little girl that loves life,she wouldnt want to spend what little time she has left strapped to a hospital bed throwing up and waiting to die so stop being selfish and thinking of yourself and do what would be best for her and give her Quality over Quantity of life. And the sensible Mom always wins because this isnt about me, its about HER. I sat and had a talk with Audrianna just me and her and asked i asked her if the doctors tell mommy that the cancer is too bad and nothing they can do is going to make you better and you are going to go be with god, would you want to keep fighting and try everything even if it makes you really sick and you have to stay in a hospital OR would you want to come home and be with Mom,Dad,Sissy,Nana,Poppa John,Granny,Poppy,Dustin,Bret,Lizz,Uncle Travis,Uncle Ed and all the other people that LOVE YOU until its time to go with god and she said...go home Mom,i dont want to be sick forever id rather play with my sister till i goto the Angel's......NOBODY SHOULD EVER HAVE TO HAVE THAT TALK WITH THERE CHILD AND GODDAMMIT MY CHILD IS 5YRS OLD going on 50 thanks to Cancer...so for all the people that would think to put me down for this decision,they should think before they speak because until you have Walked in the shoes of a cancer Mom/Dad dont you dare judge.
September is Childhood Cancer Awareness Month...are you aware?? Did you know that 46 kids are diagnosed with cancer everyday and that 7 kids DIE each day?? Do You know that the GOLD RIBBON Is the symbol for pediatric Cancer?That only 3percent of all the money raised by the american cancer society goes to pediatric cancer?? Please if your reading this,please do something to bring awareness to pediatric cancer for the month of september and remember without our children there is no future.....so help another family be saved from hearing the words Your Child Has Cancer....Your Child has Relapsed....Your Child is going to DIE!!!!!!!!!!

Day 6

Today Audrianna was starting to feel better and we thought we were going to be able to go home tomorrow BUT then she fell off a chair in her room face first and broke her Nose....uughh.....i feel so bad because she was sitting on my lap when it happened. First the surgeons didnt think it was broken but then they had the head radiologist look at it again and it is fractured, so now tomorrow we have to get a consult from ENT Surgery to see if they think they need to do something to fix it or if they are just going to let it heal on there own....she already has a Fat lip, Swollen Nose and one eye is starting to turn black and blue so by tomorrow she should be really colorful. When Audrianna went for her CT today she did it without sedation for the first time ever!!!! Dr.Walsh bribed her with a unicorn pillow pet lol and she wanted that pillow so bad she stopped crying and held perfectly still to get it.Then it was back to our room for chinese food which she told me was the ONLY thing that would make her stop crying(man am i a sucker or what?) and then some medicine and a nap. Nana,Poppa John ,Aunt Michelle and Rhianna came to visit and cheered her up with some Farting Puddy that she got from Jordan omg it's so gross but so funny and i was just so thankfull they made her smile and laugh before they left. Our Friend Jordan works at the hospital and we met her through our dear friend Kelly Sledzinski who is Audrianna's Angel, Kelly passed away 2yrs ago but her friends and family have always kept Audrianna in there thoughts and prayers and been very good to her...Thank You Jordan for the Farting Puddy and the beautiful smile on my babies face tonight!!

Day 4 of Hospital Stay

So its been 4 days since we were admitted for Audrianna's Surgery and yes i say WE because i am here too every step of the way. The first 3 days were really bad, lots of pain and crying. We did have family visit which made her happy on the 3rd day and she even ate a lil bit for them and after they left she even got up and walked 6 whole steps!!!!!!!But then of course she pushed herself too far and she was in pain and crying all night and nothing was working and on top of the pain she also got the hives from the dylaudid which then turned to blisters on her butt and popped uugh she now has bandaids and antibiotic ointment everywhere, poor kid cant get a break!Finally around 930am she got another dose of benadryl and was able to fall into a restfull sleep till 2pm which was a great thing for her. We had a few visitors today which brightened up Audrianna's day, first our friends Andrea,Micheala and Family came to visit and brought Audrianna a really cool purse that has a monkey on it and even though they are battling cancer themselves they reached into there hearts and helped us and i am forever thankfull that i have wonderful friends/family like them in my life. After they left Dr.Tom visited and made Audrianna smile with his great smile and spikey hair,he is her all time favorite doc and i am so thankfull for him to because he always comes to make her smile!!! Then we had even more visitors...Reiley and her wonderful Aunt Sandy came to visit, they brought audrianna a kewl supergirl bag,balloons and some snacks....when they left she was smiling and happy and for me that makes my day great. Now we are having dinner, visiting with Nana and Poppa John and waiting for Uncle Denny and Kyra to get here so she can see her sister....hopefully the rest of the day continues to be Happy for us-:) Thank You All for your thoughts and prayers!!!!!!

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!