All Donations goto Audrianna's Butterfly Garden and to help start the Audrianna's Foundation
Hazle Township, PA 18202
Monday, October 29, 2012
Audrianna is in desperate need of a miracle right now, her poor little body has just had enough and she is having trouble breathing on her own.....docs did a chest xray yesterday and it showed that her lungs are filling with fluid which is causing her breathing problems so she is now on 3 percent oxygen just to keep her o2 levels at 96-97percent....her belly is hard and distended and they arent sure why. Today we had a CT Scan done and after infectious disease looked at it they ruled out bacterial pneumonia and Pneumocystis pneumonia (PCP) which both would have been horrifying in someone with such a weekened immune system BUT they still have not found out why the fevers are there or why her lungs are filling with fluid:(.....at this point the docs have told us that since she started back sliding so quickly that if they cannot get this under control she will continue go downhill...the docs asked me if it came to it if i would want her intubated and have them try everything possible to save her...my answer was NO, i do not want her on a tube where she cannot talk, i want her to be able to say she loves us if she is dying i want to be selfish enough to say i want to hear her last words to me dammit. Audrianna would not want to live like a vegetable hooked up to a tube not being able to talk or hug us, she would want to say goodbye. As i sit by her bed at night i listen to her in her sleep having conversations with people, i asked her who she was talking to and she said the angel's....last night i heard her ask someone if it was time to get yet, i think she knows the time is close but she is holding on because there is so much more she still wants to do, im just not sure her little body is going to let her do it....but im hoping her fighting spirit will win out one more time and she can at least leave this hospital and come home with us.
Thursday, October 25, 2012
Audrianna has been in the hospital for 10days today and she is still running a fever and has absolutely no ANC because her body is so run down from that nasty I.C.E. Chemo they gave her. Her poor body just cant take anymore and is not bouncing back like it used to and its taking forever for the anitbiotics and antifungals to work. After 10days of not eating she is so weak that she shakes constantly to the point she looks like someone that has parkinsons, she cant hold her own body up and she cant even get out of bed by herself to pee....watching this and not being able to do anything about it is heart breaking as a parent, im her mom and i cant fix this. Yesterday i talked to hospice about the care she will eventually need once we go home and signed paperwork for them to be able to treat her, one of the papers i had to sign was whether or not to resucitate her or not if her heart fails at home...No Parent should EVER have to make those decisions for there child, no parent should OUTLIVE there child, my baby is 6yrs old and has NEVER had a chance to LIVE and now she is going to DIE....there is no way around it,the treatments are not working anymore,her tumors are chemo resistant and still growing,she is slowly dying and all we can do is watch and try to help her stay comfortable and make the last of her dreams come true. As her Mom i dont know how im to do all this, how to stand up and not fall down when she passes away, but i know i have to because i have another child who needs me....I have to remember Kyra needs me too and she is only 4....All of our lives are going to change and spiral out of control in the next couple of months,we are facing an uphill battle on keep her comfortable and keeping our own sanity while doing it. I love my baby she is my best friend i dont know how to live this life without hearing her voice. I dont know how to go on without hearing her say I love you More the same, because neither of us are allowed to love each other MORE then the other.......Or her telling me im the best mommy ever, or saying thank you mommy and me saying your welcome baby and her saying...no mommy i mean thank you for everything<3................Those are all words i dont know how i'll live without....and i dont know how ill live without her hugs and snuggling together in bed, i havent slept with anyone else in 4yrs,her lil body has a permenant indent in my side...How do i live without that??? How do i live without being her mommy anymore? These are all the questions that run through my head as a i sit here in the dark every day and night watching her sleep for 22 out of 24hrs everyday,these are the thoughts that are driving me slowly insane,along with the what if's. What if i had done this different,what if i had done more for her, could i have been a better mom to her and Kyra, could i have made them happier...these are the things that make me think that there might be a nut house in my future somewhere....these are the things that somedays there just arent enough anti-depressants in the world to make go away when your watching your child suffer.............................................Today my wonderful dad John brought Audrianna's puppy to the hospital to see her because all she has asked for is Geena for days,so i bundled her up and took her outside in her stroller and she hugged her puppy and smiled for the first time in forever
Tuesday, October 16, 2012
Audrianna had a very harsh chemo last week called I.C.E. and she was very sick for the 3days she was inpatient, then they sent us home and she steadily got worse.Today we came to clinic for bloodwork and she was very dehydrated and her A.N.C. was only 90 which is very low so she was admitted for fluids,blood products and neupogen to raise her ANC. Right now she is in alot of pain and has been complaining about bad headaches, her back and ribs hurting so tomorrow they are going to do an MRI and a CT Scan to see if there is anything growing or showing that would be the cause of all the pain and the headaches. This has been a very very rough 2 weeks as Audri has been so very sick and has done nothing but scream in pain and cry and there is nothing i can do except give her more pain meds and hope to god they work..........................................................................................................................................................................But on a brighter note i think we have a few thousand people on FB and Twitter trying to help Audrianna's Dreams come true and help her finish her bucket list. Katy Perry has a big heart so im praying with all that i am that she opens her heart to my baby and makes her dreams come true. Even if her schedule is so crazy she couldnt meet her in person maybe she could just skype or do facetime with her, i think even that small gesture would be amazing. Also to all the people who have helped make other dreams come true so far i cannot say thank you enough....Bloomsburg Fair had $10 helicopter rides and she rode them 6 times!!!!!!! Cloud Nine Balloons took all of us up in a Hot Air Balloon Ride and it was amazing, Thank You Jen,Jim and Crew we will never forget the wonderful day you gave our baby or the memories we will have forever. Outten County Chrysler of Hamburg,Pa is sending her to Disney on November 12th-16th which includes a trip to the bippity boppity boutique to be princesses for the day, and our Dear Friends April and Jamie Valvano have paid for a day at Discovery Cove she she can swim with the Dolphins!!!!!!!! The people that have held fundraisers for us this year(Marie Kahley, Geri Berger,Heather McGurl) And everyone that has donated to help us with medical expenses and the Disney Trip.....WE CAN NEVER THANK ANY OF YOU ENOUGH, BUT WE LOVE ALL OF YOU AND FROM THE BOTTOM OF OUR HEARTS....THANK YOU FOR HELPING AUDRIANNA<3................................................................................................................................................................... This is going to be a very rough week until she starts to feel better so please keep her in your prayers and continue tweeting Katy Perry so she can fall in love with Audrianna too!
Monday, October 1, 2012
I sit here watching my children play after they came home from school and all i can think is how many more days like this will we actually have?? We are still waiting on the Genetic testing to come back to see if she is One of the 15% who will be able to get the gene therapy and let me tell ya the waiting and not knowing are the worst....at least if we knew yes or know we would be able to make a plan on how to deal with everything...People tell me i should be Happy that she is well right now and not really showing so many symptoms,but thats because they dont see her all the time and really who are they to tell me to be happy??I am Happy that Audrianna is ALIVE and with all of us right now but it doesnt mean that im still not sad,mad,and tons of other emotions on top of that.This is an emotional roller coaster that it seems like none of us will survive because Cancer doesnt just affect Audrianna it affects all of us,it affects her beautiful 4yr old sister who is so angry sometimes she yells and screams for no reason and has the Worst Temper Tantrums and god forbid she gets a booboo then she screams like she is Dying because she wants attention for her wounds not just her sisters...the littlest scratch on Kyra is a catastrophe and sometimes her tantrums are so horrible i cant deal and want to run away screaming but i cant because she needs me too and its her only way to let out what she feels,i HATE Cancer and what its doing to us all.....Audrianna's pain meds make her mean, she has mood swings like a crazy person...one minute she is hugging you and telling you she loves you the next minute she is screaming in your face tellin you she hates you and she treats poor kyra the worst, it is so sad to see because kyra loves her so much and all she wants to do is play with her big sister and she doesnt understand that her sissy cant help being mean.I get so depressed watching this that i dont know what to do and then i just want to crawl under the blankets and hide from the world, but who can do that....not someone named MOM let me tell ya.We all just need a CANCER BREAK, a day where we wake up and not have to worry that Cancer is stealing our lives, not have to worry that Our Child/Sister is going to Die,that today something will happen and she will stop breathing or her heart will stop beating while we sleep.We are all so looking forward to the week of November 12th just so we can be on vacation in Disney and TRY really hard to forget for just a bit that our lives will never be the same again.............................................The girls cannot wait to see all the princesses and tinkerbell again....I cant wait to see there faces shine and capture moments of happiness instead of sadness...............To be able to wake up in the mornings and not want to hide under the covers, to just go and enjoy our lives and try to act *normal* for a week....................we have been trying to fill Audrianna's Bucket list as much as we can, she got a beautiful puppy donated to her from http://www.colorsilkyorkies.com/ and she got to ride in a helicopter at the bloomsburg fair....we are still trying to get her a hot air balloon ride,a trip to NYC, and a swim with the dolphins while we are in disney...those are all her big wishes...her other wishes are smaller, she wants the toy drive for her hospital to be a success again this year so all the other kids in the hospital get toys, she would like gift cards to use while she is in the hospital for amazon so she can watch movies,itunes so she can listen to music and american girl doll so she can shop for new clothes for her Bald Doll Hannah....other then that she hasnt told me anything else she would like to do yet and the only reason im posting this is because people keep asking me whats on her bucket list.................................................Some days we are really happy like over the weekend when we had family in from NJ and we went to the bounce place and let the kids play and then to Pennstate for there community days and see the kids smile and play together and then other days like today i wake up,take Audrianna to school and then come home and put kyra on the bus and as soon as everyone is gone i just lay back down and crawl into a ball with the cover over my head till its time to get them from school because i just cant handle anything else without cracking into a million pieces and falling apart. For all the people that think this journey is something Everyone can halde is wrong, this Journey is something that takes ALOT of inner strength not to fall down and its not something you start with its something that you gain along the road to hell ...which by the way is NOT PAVED WITH GOOD INTENTIONS....It's PAVED WITH BALD DYING BABIES:(