Things Audrianna Says On Pain meds

Audrianna made it through day one but she was in alot of pain once the chemo started of course the tummy pain was bad and since they upped her dose of Ironotecan now the belly pain is worse.She is now on 50mg of Ironotecan instead of 40mg which is the highest does because they are trying to get that tumor to shrink not just stay *stable* so of course she is getting dilaudid ever 2hrs,benadryl every 4hrs and zofran every 6hrs for nausea and belly cramping and tylenol for the headaches..............................................................................Wll let me tell you that my daughter gets downright EVIL whens he is on Dilaudid but its the only med she can take IV that doesnt give her an alergic reaction so i have to deal with the EVIL SATANIC CHILD that comes forth when she takes it....Last night she was Screaming at me and when i got upset and yelled at her a lil and told her to stop yelling at me or i was taking away her Ipad she said *Mom you cant yell at me when im mean to you in here because there are to many people who can hear you* grrr where do they learn these things??? Once i told her i was gonna spank her and right in front of the doctor she looked at me and said *Mom i have a platelet deficiency you cant spank me it will leave bruises* omg i didnt know whether to laugh or cry i mean she is 6yrs old, no 6yr old should know these things(but the kicker is she is right!)................................................................................ So after all that she tells me i need to put the recliner right next to her bed and hold her hand and sing to her(just what i want to do after she has been so mean i want to cry right?)But because im a good mom i move the chair over and sleep next to her holding her hand all night after i sing her to sleep and the whole time im thinking god i hate cancer, god i hate how it turns my perfectly sweet and loving child into this evil monster baby that i dont even recognize and that sometimes i hate myself because even though i know its not her fault and i know its not her really talking its the meds i still yell back at her because i cant help myself from reacting when she attacks me.

Crazy Summer/Chemo Week

I havent had time to write in a while because it has been a crazy whirlwhind of a summer so far. We have met some amazing people and had a great time meeting them. Riding for a cause hosted a motorcyle run called Angel's For Audrianna and helped us raise money for hospital visits and to take Audrianna to Disney in November...we are so thankfull everyday to have met each and every person that was there the day of the run....Marie, Lisa,Sharon,Bubba...we cannot thank you enough for coming into our lives and helping it become a better place...we have to maintain contact with you and help participate in the run next year for the next sick child you help!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We also have to say a Big shoutout to Outten County Chrysler in Hamburg,Pa who donated a trip to Audrianna to Disney in November so she can go and see Santa at the most magical place in the world...All of this started because of some negative comments made on Audriana's Wish on Facebook when i had asked for unused airline miles so that we could try and get her back to disney...Thank You Outten for coming through and making her dreams come true.........Both Riding for a Cause and Outten County Chrysler have proven to us once again that there are Still Angel's on Earth!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This has also been a very emotional time for us because as Audrianna's Tumor is stable and isnt shrinking or growing at the moment, she has friends that are not as fortunate and are losing there battles or having to start there fights all over again and its very very sad:(........everytime one of these babies relapses or dies it's like losing your own child over and over because they become your family and its so hard to lose yet another member of your family. My Heart is breaking right now for Ava and her Family...she is such a beautiful little girl who lights up a room when she enters it and for that light to be extinguished is just wrong in so many ways...we need to find a cure for this horrifying diease that is killing our babies and we need to find a cure now....Ava's Mom is one of the bravest people i know, i have been following and posting her status's and i know inside she is screaming because i would be but outside to everyone else she is saying she would be happier if Ava wasnt in pain anymore and she just went to be with Jesus,it takes alot to say that and to let your child go...Gianni I love You and You are one of my Hero's and i am here if you need anything..........................................Then there is Wyatt he is such a brave and wonderful young boy who just turned 8yrs old and on his birthday he relapsed with leukemia, now that docs dont know if they can beat this relapse but Kathy who is Wyatt's Mom and also one of my Hero's has said its not up to the docs its up to GOD because thats the higher power she answers to and she has faith that Wyatt will beat this and i pray with all that i have that she is right and he can truly get a miracle and kick this awful disease to the curb....................My beautiful Audrianna went around at clinic today and on the hospital floor and made sure all her friends including Wyatt got a Pin that says I HAVE CANCER NOT COOTIES......it was the first time i have seen Wyatt smile in forever and she was thrilled that it made him happy....its the little things like this that makes our babies happy even when they are so sick they cant hold there heads up...........So remember when your out there with your friends and going on with your life if you think for a minute your life is bad please remember these babies and think of how much worse it could be...................Audrianna's chemo is going to start in a half hour and for the rest of the week she is going to be sick and miserable....but i am still thankfull its only for a week and that she gets to go home and be happy for 2 weeks when its over and i hope and pray everyday that it continues to work and doesnt affect her organs until it either gives up and goes away or they find something else to go after it with!!!!! So hug your babies and tell them you love them and remember to always live for today because you never know if there will be a tomorrow<3

A day in Audrianna's Life

Audrianna asked me in the car today Mommy when someone dies do they get buried...so i said yes baby they get buried in a cemetary(just like the one we happened to be driving past)she said oh ok what are those stones for...i told her they were called headstones and they had the persons name on them so that people who loved them would know where to look for them when they visited them in the cemetary...she then asked why there were flowers on the one grave and i told her because someone had died and someone they loved had visited and put flowers down.....Audrianna then said you mean like when Grandma Gerry Died Mommy and I said yes baby,when mommy and Nana go vist her we put flowers on her grave...then she asked me if i would put flowers on her's when she died and went to heaven with all of her friends and Grandma Gerry....I stopped and couldnt speak while the tears rolled down my face as i was driving and then i said Yes Baby someone You love will put flowers on your grave when you goto Heaven but Your gonna live a Long time so it probably wont be mommy.....and she said no mommy i think it will be you... and then she changed the subject and asked me to put the music on....I cried for the next 15 minutes silently in the front seat of the car as i drove because all i could think is she is a warrior and tells me all the time she talks to angel's so maybe she knows something i don't.....but please dont let her be right because i dont know how i would handle having to put flowers on her grave....I have friends that i have watched lose there children and they stand up go on with there lives and the fight because thats what there child would have wanted and i give them so much credit because i dont know if i could be as strong as Caroline,Janet,Amy,Atisha,Annette,Annmarie....Just to name a few of the brave and strong mothers i know and love BUT i pray that if i had to i could be even half as strong as they are..My Warrior Mom's!!!!!! So after this conversation we finally made it to the eye doctor, the girls all happy and me with puffy crying eyes...Kyra had to get her eyes rechecked and get new glasses because hers hurt her and Audrianna has been telling me for a while she needed glasses like her sister and she was right she did so now she will have glasses and hearing aides thanks to the effects of the chemo. Both girls picked out very pretty glasses, Kyra got green glasses and Audrianna got Pink of Course lol she is my pink kid...then they went to grannys to spend some time and have dinner with her and mommy got to go home and relax and try not to cry anymore,until now as i sit here typing this in the dark because now i can cry alone and nobody can see me. It has been pretty hectic here in our little world,We had a scare 2 weeks ago where the docs thought that Audrianna's tumor was growing again and thank god they were wrong...the tumor is still there but its stable and not shrinking or growing at this point so they will continue with this course of chemo treatment for as long as they can as long as it doesnt affect her organs in any way so for that we are thankfull..........................................................................!!! We are also thankfull for all the people out there that follow Audrianna's story and love her...a couple of weeks ago i had asked for airline miles to help take Audrianna back to disney and was pretty badly attacked on her FB Page but out of the negativity came something great...One of Audrianna's Friends from her page sent the link to a friend of hers Daniel Sweigard from Outten Country Chrysler in Hamburg,Pa who found the attack so offesive that he then went to His boss and said look at this beautiful little girl who wants to goto disney can we help her family in anyway and they decided to sponsor Audrianna on trip to Disney....I cried when Dan and i talked and he told me, and as i told him, there are still Angel's here on earth and for every bad person out there....10 good ones make up for it...we will be forever gratefull for this trip, its something she has been asking for that we couldnt give her and she is so excited that she gets to go around christmas time to see Santa and Mickey Mouse at the same time!!!!! All i want out of everyday is to see my girls smile and i will do anything to make that happen...you never know how long your going to have your children, you never know if your going to hear the words your child has cancer,spinabifida,HLH,Diabetes,Pseudo Tumor Cerebri or any of the thousands of other debilitating diseases i see kids fighting everyday...so we will now and forever to continue to live like we are dying...because we never know if tomorrow will be here for any of us so we are going to enjoy today...and that is something i have learned since my child got sick!

Audrianna's Upcoming Birthday

So i cant believe its been 3yrs since we started this awful battle or that my baby is going to spend yet another birthday in the hospital. On Monday May 7th Audrianna will be turning 6yrs old and it's the day she gets admitted for her next round of chemo and will have to have an NG Tube put in her nose to recieve the chemo.This is just one of the things that parents of kids that arent chronically ill dont understand ...birthdays are never normal no matter how hard you try to make them normal and requests for vacations you cant fullfill are heartbreaking. When asked what she wanted for her birthday Audrianna replied anything anyone wants to give me mom.....but what id really like to do even if its not my birthday is go back to disneyland again....I had to tell her mommy couldnt afford disney because her cancer treatments cost to much. I also told her that maybe next income tax which would be next march god willing mommy would use that money to get her to disney. She is ok with that since she is a child and doesnt really understand that money doesnt grow on trees but that its expensive to go back and forth to the hospital and stay there...she understands mom will do all she can to get her there. I know some people think im being GREEDY ASKING FOR ANOTHER WISH when she already had a Make-A-Wish, but she deserves it, she has been through so much in her little life that if she wants to go back to disney im going to do everything in my power to get her there....So what did i do...i went on her FB Page Audriana's Wish and i asked if anyone could Donate Frequent Flyer Miles just to help us with the airfaire to get her there, i didnt ask for Money i just asked for Miles and yet i still go grief from a few people and then there are so many others that are willing to help and im very thankfull to them....someone told me to go make a chip-in account so that people could help and i did and im going to post it here and any money raised will goto her trip and hopefully we can get here there.I wanted to Thank Everyone in advance!!!!! http://audriannabartol.chipin.com/audriannas-disney-trip

upcoming holiday

I am sitting here thinking that i should be out buying stuff for my girls for Easter so that the Bunny can get all the credit for making them happy for a lil while,BUT i just cant get into the spirit. On Sunday April 8th Audrianna will be having her 3rd CancerVersary....Easter is 3yrs to the day she was diagnosed and even though i should be jumping up and down for joy because she is Alive 3yrs later i just cant...my baby should be healed by now, she should have Hair and she should be happy and playing with her friends and going to school and instead she is Still Sick, getting chemo,bald, and trying her hardest to Be Happy so people dont see how bad she feels....these are the things people dont see...our baby puts on her smiley happy face and pretends that her tummy doesnt hurt and she wasnt just throwing up everything she had for lunch...they dont understand that she gets tired so easy but pushes herself to play because she doesnt want to miss things BUT i understand that and so that makes this Easter Bittersweet....3yrs alive after diagnosis when they gave her less then a 20percent chance to live YAY but 3yrs still sick BOO DAMMIT. So as we go into the Easter Holiday we will ALL put on our fake happy faces and make the best of the day.
It's also hard knowing so many of our friends are sick....Emilee is just trying to get through Easter at home so she doesnt have to be in the hospital having another brain surgery.....and our friend Kayla is in the hospital fighting for her life because her body is rejecting the donor heart she just recieved.....i find it very hard to smile through all this but im asking that All of You Smile for us and say the Prayers i find hard to say so that Kayla will pull through, Emilee will get better and Audrianna will be N.E.D. on her next scan......Hope you all have a Happy Easter

Depression

It has been a very long time since i have been here letting out my feelings or even updating on Audrianna but i just havent had the getup and go to do this anymore. The longer she is sick the worse the depression gets for me and even though i am on medication and i am fighting it everyday it doesnt mean sometimes i dont lose the fight. I put on a happy and couragous face for everyone around me and i go on doing all the things i need to do because well thats what my children and my family need to see, but inside i feel like im suffocating.I know we just got news that her cancer is STABLE which to most people is a huge YAY STABLE but to a mom who has been waiting for the words NED, stable sucks.It just seems like everytime we take 5 steps forward there are ten steps waiting for us to fall back on and as the chemo goes on she gets sicker and crankier each hospital visit and then at home she tries so hard to be a kid, she goes ice skating and roller skating and to hockey games,with granny,poppy or nana for a few hrs and everyone thinks she is NORMAL, but what they dont see is the whiny,cranky,over-exhausted child that is pushing herself so hard to be NORMAL so that she doesnt miss anything incase the damn chemo doesnt work.Can you imagine being 5 and having that thought run through your head all the time?? I CAN because im with her 24/7 and i see how she is but no most people cant or wont imagine that because its just to damn hard to deal with. I keep all this inside and to myself because well its just to depressing to share with everyone around me,why bring everyone else down to where im feeling?? I shut myself off, i dont talk to my mom who i know i always there for me,i dont talk to the few friends i have left because im afraid if i do ill scare them away with everyone else that has gone there own way since audrianna got sick, i just try and go on and be normal like she does and lately its catching up to me...i dont want to get out of bed, i dont want to goto work...i just want to sleep and hope when i wake up this was all a nightmare.Today it was a beautiful 70 degree day and i sent the girls to a hockey game with daddy and slept till almost 7pm, not because i was tired...but because im so depressed i just didnt care to get up and move.My girls went to hockey and ice skated with the players and had a blast with there dad and i missed it because i didnt want to get up and take a shower and i had no motivation to do it,thats what depression steals from you, moments you can never get back.Im hoping tomorrow is a better day and i can get up,get motivated and do the things i need to do but then i hope that everyday and some days i just lose the battle.
It's also hard because there are so many kids you come to love in the hospital that are sick and you try so hard to be strong for them and there families also and when something happens to one of them it's a kick in the teeth,you just lost a family member. I know all the mom's with sick children reading this will understand and i know some of you will go sheesh she is really making this blog about her and whining when it should be about her child, but thats the point it is about Audrianna and how being there for her every second of the day,loving her through the vomitting and the pain, eats the parent up inside...i wouldnt trade a second of it or be anywhere else But it still hurts me everytime something hurts her. Ugh maybe its the time change, maybe its 70degree weather in march thats throwing me off i dunno but i wish i could just go back to being my happy self, instead of the shell of me that sits in the dark crying and eating chocolate...watching my ass expand:(

Crazy Life

Sorry i havent posted a blog since christmas but our lives have been crazy.Between Audrianna's treatments and mommy going back to work and trying to balance everything there just isnt time for the computer right now. Audrianna is doing ok with her chemo, she has good days and bad but we are hanging in there and trying to stay positive.Right now we are battling a few things like severe back pain that they cannot seem to find a reason for and we are hoping its chemo related and 2 nodules on her lung that the doctors are *watching closely* and hoping that on her MIBG and CT Scans in March they have not grown otherwise she will have to undergo a biopsy of the lung to make sure they aren't cancerous. Audrianna has been having a rough time with the Temedor because she cant swallow caplets and it has gotten so bad she has asked for an NG Tube to be placed twice now so she didnt have to taste the medicine and it doesnt make her want to throw up as bad as if she takes it by mouth.I am very stressed everytime they have to put the new tube in because i hate to see her cry although she did very well this time and only cried for a few minutes it still breaks my heart.Thankfully we have alot of friends and cancer family that are helping us through the stress and helping mommy not to have a nervous breakdown during *HELL WEEK* as i have dubbed her chemo week. Every 3 weeks i have to watch her go through hell, sometimes the hell isnt as bad as others and sometimes its worse...but its always HELL probably more for me then for her because i feel every little bit of pain she feels and i feel it twice over because im her mom.




But everyday i am also thankfull that it isnt worse and she is ALIVE. We have seen so many kids here that have the same disease or other horrible diseases and they have either died or lost body parts to this horrible thing the American cancer Society calls a RARE CANCER...Pediatric Cancer is not RARE and we need more people out there shouting that at the top of there lungs so that kids like Audrianna,Tiara,Wyatt,Bailey,Ryan,Hannah can survive and not become Angel's like so many of there friends:(
Please keep all the babies out there fighting cancer in your prayers and pray for a cure to be found! I will update again as soon as i can and we hope everyone has a Happy Valentines Day!