All Donations goto Audrianna's Butterfly Garden and to help start the Audrianna's Foundation

Savings Account for Audrianna where donations can be Made
M&T Bank
50 Laurel Mall
Hazle Township, PA 18202
(570) 450-7830

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Tuesday, November 27, 2012

Whoever said home is easier...LIED

Audrianna has been home about 2 weeks now and life is hard...its hard on her and on all of us around her....Poor Kyra she is 4 and Audrianna yells at her all the time, be quiet Kyra, Your too Loud Kyra,Dont touch that Kyra, Leave the dog alone Kyra ugh it's an endless battle for poor Kyra even when she isnt doing anything wrong...Kyra actually went back to my mom's house the day before thanksgiving and didnt come home till last night because and i quote *Audri is mean to me all the time and i just want to be a kid mommy* to me this is one of the most heartbreaking things in the world, they are sisters and they love each other so much and yet they cant be around each other because Audrianna is too sick to DEAL with her baby's like being punched in the face over and over because again i have to choose between my sick and dying childs happiness and peace of mind and my healthy childs happiness and peace of mind....NO PARENT SHOULD EVER BE IN THIS POSITION..i shouldnt have to send one baby away to take care of another...................................I also cant handle one more person saying to me she will be ok, she is going to regain her strength and she is going to bounce back and get better, she has beat this before and she can do it again....WAKE UP PEOPLE LOOK AT HER SHE IS DYING that's what i want to scream outloud while i sit there and shake my head and consol them and say things like sure she will as soon as she starts eating again she will be better blah blah blah...i just dont get what part of there is NOTHING ELSE THEY CAN DO, SHE IS OFF TREATMENT, THE TUMORS ARE GROWING, SHE IS EVENTUALLY GOING TO DIE...that these fucking peole dont understand....and its not just strangers either its family and friends and i know it's there way of dealing with this suck ass situation and living in there denial...but unfortunately as her mom i dont get to live on the planet of denial with everyone else i have to live in REALITY....Audrianna is down to 32lbs, she is skin and bones, barely eats, is in constant pain living on pain meds and borrowed time until the tumor takes over to the point she will stop functioning....this is the harsh reality of my life and honestly i cant handle people asking me how i deal with this, how am i not falling apart...i am falling apart dammit, im falling apart on the inside where nobody can see because im so damn busy being strong for everyone else i cannot take time to just fall apart for me.....And the everyday funtioning of my children is the only thing keeping me off the floor...i want to lay down in her bed with her and goto sleep with her and never wake up when she does, but i cant, im a mom and i still have Kyra to think about when this nightmare we call Cancer steals her sister. If one more person calls me because they want to come to my home and pray for her healing i might bitch slap someone..i know they mean well but come you honestly think what my sick child needs is a bunch of people she doesnt know coming into our home to *Lay there hands on her to heal her*?? She freaks out when the hospice nurse comes into the house ugh. I havent been able to go grocery shopping,take a shower unless she is asleep, do laundry...any of the Mundane things other people take for granted because she is so sick she wants mommy to sit right next to her all the time....i have a head cold and cant even goto the doc for meds for me because she wont stay with anyone else without crying and even though i know my mom or dad would come here and sit with her i worry every second im out of the house that something will go wrong and i wont be there when she needs me.....this makes All of us Crazy, Sad, Mad...omg there are so many emotions that run through your head that you cant keep track......At least in the hospital she knew her nurses, trusted them with her life and loved them enough to let them sit with her and give mommy a break and i knew she was hooked up to machines that would beep if there was anything wrong so i wasnt afraid to sleep, here at home i dont sleep, im running on fumes because im so terrified because that if i fall into a deep sleep i wont hear her if she needs me or worse she will die and i will be sleeping through her last moments here with scared all the time and so is she....I HATE CANCER AND I WANT IT TO LEAVE MY BABY AND ALL THE OTHER BABIS ALONE DAMMIT!!!!!!!!!

Monday, October 29, 2012

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 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:( 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 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

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 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!!!!!

Tuesday, October 16, 2012

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!

Monday, October 1, 2012

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 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 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 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:(

Saturday, September 15, 2012

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 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

Thursday, September 13, 2012


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 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 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

Monday, September 10, 2012

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 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'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 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 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!

Tuesday, August 7, 2012

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.

Monday, July 16, 2012

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 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

Wednesday, June 13, 2012

A day in Audrianna's Life

Audrianna asked me in the car today Mommy when someone dies do they get 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 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 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!

Monday, April 30, 2012

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!!!!!

Tuesday, April 3, 2012

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 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

Sunday, March 18, 2012


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:(

Monday, February 13, 2012

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!