Needing a Miracle

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.

10 days still in the hospital

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

This lasted for about 10 mins before she didnt feel well and wanted to go back up to her room and go back to sleep, BUT she got to hug her puppy and that was all that mattered to her because there is nothing like a puppy's love to make a child smile. After Geena left Audrianna slept till about 730-8 when she had some wonderful visitors from Pennstate that came dressed up in costumes just to cheer her up because she missed the LIL Goblins Trick or Treat they had yesterday that Kyra got to goto so they brought it to her today...WE ARE PENNSTATE!

While the wonderful students from Pennstate were there cheering her up, her cousing Bret and his Fiance Lizz Showed up to add to the cheer

This 2 hour time period was the only time other then when she hugged her puppy that she was awake today and even then she was very cranky and upset because she didnt feel well and had a high fever, by the time everyone left she was exhausted, asking for pain meds and going right back to sleep. It is so hard to see your child push themselves just to be able to hug people they love without crying in pain, when 3 weeks ago she was bouncing on a trampoline......everything can change in an instant, something we all need to learn...with pediatric cancer and any type of cancer really there is no tomorrow...always live for today because there are no promises....FU CANCER for stealing our Tomorrows!!!!!

Hospitalized Again

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!

Some Days are Worse then others

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:(

Course of Action

I talked to the doctor today and after he talked to chop and sloan kettering who both said there is nothing else they can do unless she has the Alk Gene(which we wont know for 2-4weeks)we have decided to take her home to heal from her surgery as soon as she is able to go and then bring her back the first week of october for one very intense round of high dose chemo which is going to make her very very sick,just to see if it has any effect on the tumor at all...and also this way she will be stable enough to go on her Disney Trip from the 12th of November to the 18th and not have to worry while we are there.By then we should have results of the Genetic Testing and know our next step...does she have the gene and get the treatment of does she go home and continue to fullfill all the things she wants to do on her bucket list....................................................................................I want to Thank EVERYONE that has come forward to help with the things she has listed on her bucket list, so many people want to help and have or are trying to its amazing to me to see the love for her that all of you have and i want you all to know that it has given me knew hope, and even if she doesnt have the Gene Marker for the therapy i know she will and we will be Ok because there will be NO REGRETS on anything we have decided to do.....The Wheelchair for her American Girl doll was taken care of by so many people before i even knew it was happening i was amazed...I need to tell you all a story of 2 beautiful little girls...Twin daughters of my friend Angela who are a around Audrianna's age and have met her a few times and been praying for her constantly since her bday party 2yrs ago when they first met in person, there mom told them Audrianna wanted the american girl doll wheelchair and they had one so they asked her to please give it to Audrianna since she deserved to have it...now that just shows the generosity of a childs heart...i said no i didnt want to take a toy from them and there beautiful mom said...please let them do this it would mean so much to them that i said yes and she dropped it off for Audrianna at my moms house....Believe me im sure there are more coming in the mail as there were tons of responses to that one request but this one meant the world to Me...Thank You Girls we love you!!!!!!!! Everyone that has donated to her paypal we thank you, everyone that is working so hard on getting her a helicopter ride your amazing and we thank you....The people working on the Hot Air Balloon ride...Thank YOU!!!!! The swimming with Dolphins is going to Happen also and we cannot say Thank You Enough, i dont think Thank You are strong enough words at this moment for all the Love and Support we have been given but i dont know what else to say!!!!!!!..............................................................................Audrianna is feeling better since they have gotten her pain under control and yesterday she had wonderful visitors, her beautiful friends that she met from Pennstate Hazleton's THON program who are now mostly in state college drove all the way here yesterday...Bought her a REAL Hot Pink Guitar and stayed to play and cheer her up, she WALKED for the first time while they were here,she smiled for the first time and played like a kid for the first time....I can NEVER Thank Sam,Tara and Marques enough for that couple hours of peace they gave us yesterday...Poor Marques was such a good sport when she PAINTED HIS FINGERNAILS RAINBOW COLORS lmao the look on his face when she asked was priceless but he did it just to see her smile, these kids have such good hearts and i love them all so much...they are FRAMILY(friends who have become family)and i am thankfull everyday they came into our lives...WE ARE PENNSTATE!!!!!!!!!!!!!!!! Then later in the day her friend Kaylana came to visit and they played together for a while......And then Amy came to visit and brought her a cheeseburger just Ketchup,Fries and NO DRINK lmao because that is what the princess ordered and Amy loves her and was such a good sport even when Audrianna wasnt feeling good and asked her to leave after a half hour, her neice brooke was amazing and wanted to take a picture with Audrianna so she could get her school to do something for pediatric cancer awareness...god i love kids! Thank You Amy for coming all the way here it meant alot........Oh and Matt she hasnt stopped talking about you sending her a picture back sticking your tounge out hehe she loved that!!!!!....................... Last night Audrianna went to bed exhausted and in a lil pain from overdoing it but happier then she has been in over a week so it was well worth it and i actually slept knowing she was ok..................................................................... This has been a very long roller coaster of a week with all the ups and downs and the news that the tumor is wrapped around her aorta and her diaphram and moving into her lungs and there is nothing surgical they can do and maybe nothing at all because its chemo resistant now and i have been slowly losing my mind and going crazy trying to be strong and plan out everything we are going to do to make her last days happy if it comes to that But yesterday i got to forget all that for just a lil bit and just be glad she was happy and now i feel renewed like i can take on the world at least for today, so no losing hope, no giving up, no giving in till the end we fight....Love You ALL and Thank You for Loving us xoxoxox Angela, Audrianna and Family

Withdrawing

Everyone keeps asking how im holding up,honestly i dont know how to answer that because im not im just going through the motions and doing all the things i have done before so that nothing is different or unusual for Audrianna so she doesnt get scared. I do know that i have been closing myself off and shutting down because i feel like if i keep talking about this, if i talk to my family or friends and tell them whats really inside me that i will fall down and i will Never get back up because there wont be enough pieces left of me.I know that i am probably hurting my parents,my brothers,my friends,my husband and everyone else that is close to me but i cant i just cant let go right now...i have this steel rod of determination in my back right now to get Audrianna all the things she needs/wants so that Never will we look back with regret and say we should have done that while she was here...i want to look back at her life and smile and say Wow look at all the things we did in the time she was here, she may not have been here forever but she sure taught us how to live while she was with us. No 6yr old should have or know what a Bucket List is...My 6yr old does. And the first thing on top of her list is GoTo Kindergarten(something she should be doing anyway)something other kids/parents take for granted my child is literally dying to do....She wants to ride in a helicopter, Go up in a Hot Air Balloon,Go Back to Disney and while she is there swim with the dolphins,Go back to Ny City and the big toys-r-us and ride the ferris wheel one more time...She wants a wheelchair for her american girl doll because then they can ride around in them together....and so many other things im sure that she hasnt told me yet because she isnt really feeling well enough to have a long converstation...This beautiful soul was given to me to love and cherish and right now that's what im concentrating on doing...Loving her and giving her everything she has asked for to the best of my ability...so if i tune you all out and i dont call you and i dont cry when you think i should because its unhealthy to hold it all in please just know that this is how im surviving right now...one step/breathe at a time and dont hate me for shutting you out, respect me for holding on and standing upright to do what needs to be done.....I do want to thank you all for being there and for loving us and supporting us, for reaching out and lifting us up...for helping make her dreams come true...please know that everything that has been done for us throughout the last 3 1/2yrs has been appreciated more then you will ever know....the help with christmas gifts,the trip to sesame place,the trips to NYC, the trip to the beach on long island,the benefits held to help our family...All of those things are memories we never would have had with Audrianna if it wasnt for all the loving and caring people that have helped and loved her....So to all of you Thank You<3

My Anger as a Parent of a child with cancer

People say that Grief comes in stages well i guess im at the anger stage and im not sure ill ever be over it, im angry my child has cancer,im angry there is No funding for pediatric cancer,im angry that she has spent the majority of her 6yrs on earth in a hospital room hooked up to machines and tubes and im so fucking angry that once again we are being told that there may not be a chance for her to grow up!!!I have so much anger weighing me down that i dont know how i stand up some days and yet i go on and i smile and act like life is perfect because thats what she needs to me do.I help her goto the bathroom while she cries in pain because once again her stomach has been cut open to remove a tumor that's killing her and im so angry that after all that the docs say they dont think there is anything else they can do surgically to help her,im angry that if she doesnt have a certain gene that will put her onto a clinical trial that i have to make the decision on whether or not to put her through more hell or let her come home and enjoy what time she has left with us...there is so much anger its eating my soul...im angry that i may have to tell one child she is going to die and im angry that i may have tell her little sister that one day her big sister will be gone and she wont ever be coming back..i am so Angry that Cancer is stealing ALL OF OUR LIVES...it's killing my baby and stealing the rest of our souls as we watch her suffer....there are so many people that say they are praying for her and i should believe in miracles and that god will find a way and you know what?? THAT PISSES ME OFF BECAUSE WHERE ARE THEY.....are they here watching her suffer and die? NO they are behind computer screens and hiding in there homes instead of coming to see her because they cant handle this , they cant handle seeing her sick or in pain, they cant deal with the fact that she may die BUT they all want to have an opinion on what we should do and how we should handle the news and what treatments we should or shouldnt do and ya know what FUCK everyone that doesnt think i have done the right thing till now or doesnt like the decisions i will make about her future because i swear to All that is Holy if one person tells me i am giving up because i decide to let her have quality of life instead of quantity so help me i will end them......NO PARENT SHOULD EVER HAVE TO LOSE THERE CHILD TO THIS HORRIBLE SOUL SUCKING DISEASE OR HAVE TO JUSTIFY THERE DECISIONS FOR THERE CHILD TO ANYONE...Believe me we will have to live with whatever decisions we make for the rest of our lives and they will eat us alive everytime we think what if....I wouldnt wish this hell on my worst enemy...i wouldnt wish this hell on the terrorists that attacked our nation on september 11th, even though they deserve to suffer for everything they put our country through they still wouldnt deserve this...Cancer is a form of terrorism as far as im concerned,it attacks when you least expect it and it tears huge holes in the structure/foundation of your life....Besides the anger i have so much Fear...I fear i wont be able to be strong enough when she needs me to, i fear i wont be strong enough to still be a good parent to her sister if i lose her,i fear that i will lay down and die without her because she is the best of me and i dont know how to life without that part of me...Audrianna was my miracle baby that i waited 14yrs to have..she came early and fought for every breathe and then when she was finally well she was diagnosed with cancer and has literally fought from her first breathe to be here and LIVE...and i cannot understand why she has had this fight and why she has to continue to fight other then the fact that she has taught me and so many others how to be strong...i would never say i love one of my children more then the other because i dont...i love both the girls so much and i cannot imagine my life without one or the other they have both been true miracles and blessings to me and my biggest fear is that i will lose them both if audrianna dies...i feel like Kyra will hate and resent me for the rest of her life because she will blame me for her sister leaving and spend the rest of her life in therapy for the things i as her mother couldnt fix....so between the anger and the fear right now i feel like im drowning and i might never be able to swim to the surface again....i have always been there for everyone else and always been the strong one and right now i just feel like im cracking in half and i dont know how to put the pieces back together to stay strong for the people who need me...im starting to feel like humpty dumpty and i fear the pieces may never be put back together again....please hug your children tighter tonight and always remember to tell them that you love them even when they are being so bratty you want to lose your mind because you never know if there will be a tomorrow to say those words to them!