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!

Things Audrianna Says On Pain meds

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

Crazy Summer/Chemo Week

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

A day in Audrianna's Life

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