Home and Christmas

I know its been about 2 weks since i updated but everything has been crazy here. We were able to get out of the hospital and be home for christmas which was wonderful...then we got all the donations togther From Audriana's Wish Blanket/Toy Drive for Audrianna's Hospital and let me tell ya we only did the drive for less then 2 months and we managed to take 4 full truckloads of stuff to the hospital in time for christmas and we have more going down after new years when we go back to the hospital...everyone that sent things was so fantastic we are so humbled and proud to have some many wonderful people care enough about Audrianna to send things for her so she could make her wish of knowing all her friends at the hospital would be happy for christmas come true!!!!!!!We want to make this a yearly tradition so my goal for the coming year will be this...WE ARE GOING TO START AUDRIANNA'S HOSPITAL DRIVE FOR CHRISTMAS IN JULY AND HAVE IT RUN TILL 2 WEEKS BEFORE CHRISTMAS....I am going to find one of the storage companies to comp the rent on a storage unit for that 6 month period so that i dont have to give up my house lol ....and i am going to get one of the companies in town like uhaul to donate the use of a truck to deliver it all....i am also going to try and setup with childlife at the hospital that we can do a christmas party at the hospital down by the turtle fountain in the childrens hospital...see if we can have someone come sing and have Santa there to hand out gifts to the kids with a photographer to take pictures with Santa...and then donate the rest to the hospital itself so on the 23rd they can use it in there hospital christmas store where the parents of kids stuck in the hospital for christmas get to go down and pick things for FREE for there child so they can wrap them and give them to them from Santa. I know this is a BIG THING TO TAKE ON but its something we want to be able to do for Our Hospital and The kids being treated there and it helps me teach my babies that Christmas isnt just about them getting things its about helping others and what a great way to help make another sick childs day brighter. I am hoping with help from ALL OF YOU we can make this happen...............................................................
I also want to say Thank You to EVERYONE that sent the girls things for Christmas and made there christmas so perfect....i didnt know how i was going to be able to do it this year with Audrianna being sick but once again the wonderful support system i have in my life came through and helped make Christmas perfect for them which in turn made it perfect for me. First they had a fabulous trip to NYC and got to see the Rockettes Christmas show and goto the american girl doll store and get new dolls, the trip was amazing and we couldnt have had a better time. THEN There were 6 big things they asked Santa for and they managed with the help of some wonderful people and wonderful organizations to get 5 of the 6 things...A ride in barbie car which Audrianna has been doing donuts on the street in lol....a dora kitchen that Kyra has not left alone since she woke up christmas morning...The Ultimate christmas dreams Castle that made Audrianna go OMG MOM Santa was listening when she opened it...THE IPAD which made me and Audrianna cry when she opened it....and with all hers and kyra's gift cards for toysrus they got a Hannah Montana TV for there room and play food and pots n pans for the new dora kitchen. Plus all the things that were sent to them, Kyra has so many new Barbies she doesnt know which one to play with first! Oh and we cant forget that even though i said i didnt need anything but to see the smiles on there faces...Nellies Catwalk4Kids didnt want to hear that and they got MOMMY a New Kindle Fire for Christmas because they are amazing....so this christmas was good to us and it couldnt have been any better UNLESS AUDRIANNA WAS CURED AND WE FOUND A CURE FOR PEDIATRIC CANCER!!!!!!!!! But for now we will keep fighting for her cure and the cure for pediatric cancer with all that we have so that other families dont have to suffer like we do. Christmas night after all the pictures were taken and the food was all cleared up Audrianna decided it was time to shave off her hair because it was falling out in clumps so *HANNAH AND I* shaved Audrianna's head and then she shaved mine...now we are matching baldies but i promised her she would never be bald alone again and i meant it...she also shaved poppa johns head and got her cousin dustin to do his.We are in this battle together from now till always and we wont stop till a cure is found and babies stop dying 46/7 forever!!!!!
Gwen aka Hannah and her sister Alana are staying with us till the first of January and the girls have been roller skating for the first time with them, Audrianna loves to skate! Hannah even bought her a pair of roller skates from the skating rink and we got Kyra a pair of the ones that go over the shoe BUT they were to small so i had to get her different onces at toysrus and now my neice Ashleigh will have new skates to, see things do sometimes happen for a reason!
Been very down the last few days and trying really hard to life myself up ever since we shaved Audrianna's Head...im not sad i shaved my hair or she shaved hers, im mad and upset that she HAD TO DO THIS AGAIN...she was so excited to finally have hair again and now she lost it again...FUCKING CANCER it takes everything she loves and im just so sad i couldnt do anything to stop it and no matter how hard i try not to be sad or mad everytime i look at my baby it happens all over and i want to go sit and cry somewhere BUT that is not what she needs so i pick myself up by my bootstraps and i kick myself in the ass and keep going for her.
I just want everyone to know that depression is a real and serious illness and for those of us that fight it everyday its a constant struggle not to give in and lay down and give up...so if you see someone that you think is having problems please reach out to them, even if its just to give them a hug and say im here for you, it might be just what they need to motivate themselves that day!!!!
Again thank you to everyone that follows Audriana's Wish Page and her story we love you all!

Long Few days

So its been a very long week...first the infection in the line, then the line removal and IV put in.The good news was that the blood infection was ONLY in the line thank god...we have had 2 negative cultures since then and if tomorrow's comes back negative also we will be able to get a PIC LINE and go home on antibiotics. So mommy and audrianna have been both feeling yucky all week which is why there havent been alot of posts. Today Our friend Savanah finally got to go home after 2 weeks and Audrianna's new friend David went home also. We are asking you all to pray for our beautiful new friend Annalee...she will be 1yr old next saturday dec 17th and she has neuroblastoma...poor baby has gone through alot of nasty side effects since she had her firt chemo but she is doing better now...she also just had an infection in her line and had it removed the same day as audrianna...so now she may be stuck here till after her bday. Please pray she gets to go home and has better results on her next round of chemo.

Line Infection

Audrianna has been admitted for a central line infection in both Lumens(she has a double lumen hickman broviac).Her cultures came back Gram-Negative Postive for Cocksaki so now she has to be inpatient and she is currently getting Rocephin and Vancomyasin Both Antibiotics are the best to kill infections.We are hoping that the Antibiotics will be enough to get the infections under control otherwise they will have to pull her line and give her a new one which we really dont want to have to do because thats just one more surgery she has to have. Yesterday she was at clinic with a 105 fever but once she got the antibiotics in her fever went down and we went home,But this morning they called to say her cultures were back and she had to be admitted. Audrianna hasnt had a fever since yesterday and her spirits are really good which is great, her counts are doing ok also so as long as the antibiotics do there job we might be able to get out of here and go home on antibiotics for the weekend...Please pray that this happens so we can have some quality home time instead of stinky hospital time!

Chemo Is Working!! Inpatient for a week

Well while everyone else was eating turkey and having a great time we were worried and pacing waiting for the news on Audrianna's Scans...Thankfully on Friday which is the day we celebrated Thanksgiving so we could wait for my youngest brother to be with us we got the call from the Doctor and recieved the best news EVER...the chemo is working YAY...the tumor is shrinking and now its not showing MIBG activity which is sooooo awesome...BUT and yes there is always a BUT with Cancer...now her Adrenal Gland is lighting up again, they are hoping its just old scar tissues which sometimes happens...So now we are having 4 more rounds of chemo and then we will do a new CT Scan and another MIBG Scan to compare them and see how it looks...the docs added Vancristine this round so now she is taking 3 chemos and they upped the dosage on her Ironotecan...her belly is feeling yucky and she has a small case of diarhea but otherwise its going really well. The doctor told me he has never seen a kid have good results and then have bad again so he is VERY OPTIMISTIC that the next round of scans should be even better news(at least thats what i got out of his doctor speak for i cant really give you statistics lol) ANYWAY i just wanted to give a quick update on how she was feeling and let everyone know this week is hard but not as hard as it has been....thank you all for caring and praying....Love Angela and Audrianna!

Depressed and Scared

This has been a really bad week one of my dear friends lost there beautiful 3yr old son Karson to Neuroblastoma. Sunday i have to goto Karson's viewing because his parents would be there for me if the roles were reversed...i want to be there for Tish and Brian but i also want to run screaming and hide under the covers and not come out...every baby that dies, every funeral i attend, a piece of me dies with them and im not sure how many more pieces i can lose before i lose my mind completely.Karson was such a beautiful baby with a bright smile and a giggle that would fill the whole room and knowing that his light has been exstinguished before he ever had a chance to grow and really shine SUCKS.I cant even fathom what his poor parents are going through or his 2 older brothers...i can say i have walked in there shoes to this point but i cant say i know how they feel now...i can say i know how id feel and it wouldnt be good, so im going to say my goodbyes and help hold them up because if they feel like id feel all they want to do is fall down and die without there baby.

The depression seems to be eating me alive this week...i havent wanted to get out of bed or leave the house...i get the girls off to school and back on the couch to sleep i go..i want to get up and go do things but i just cant make myself do it...today was the first day i actually willingly left the house and went out in public all week.

I feel so alone all the time even when im surrounded by people/family i still feel sad and alone. I dont tell them this and i smile and act like nothings wrong because nobody wants to be around someone who is sad all the time,so i have learned to fake the smile to perfection and say yes im fine no worries im strong i can handle it. When inside im dying little by little because really im not strong...i just act that way because its what everyone needs to see.

My husband and i seem to live on different planets,we live in the same house but dont talk unless we are yelling at each other and im being told im the bitch and if i was Nicer things would be different...yeah Ok sure let me get right on that...he doesnt understand the depression,basically wants me to suck it up and start acting like the girl he got together with 20yrs ago and well im not that girl anymore...waiting forever for a child after being told i was never going to have one and then getting a miracle that had to fight from her first breathe since she was a preemie and then at the age of 2 she gets cancer...kinda changes a girl and well im not happy go lucky anymore...i have 2 beautiful babies and yet one of them fights for her life everyday. My husband lives in his bubble of everything is going to be alright while i live in the reality of it might not be and its really hard to be the only one that has to deal with the nightmare everyday.

Next week is Thanksgiving and i am so grateful to have both my babies here with me for it...but i am also terrified since Audrianna is having her scans the day before thanksgiving to see if the cancer has stabilized/grown/gone and what our next step will be. The docs have to let us know asap because if its working then she has to go back in for chemo on the 28th and they are going to add another drug to the mixture to try and kill any cells that may still be there. Audrianna has been complaining about back pain and her legs hurting:( This could be a sign the tumor is growing or it could be growing pains..either way everytime she says something hurts my heart stops. I am so scared they are going to tell me the chemo isnt working and ill have to go through with audrianna's decision not to do more invasive chemo and let her be done and go home. I dont know that i can handle that..i thought i could before but now as the time is getting closer all i can do is scream inside about how we need to keep looking we need to keep fighting...and then i think of Karson and how they did keep fighting and looking and he faded away and lost his battle anyway no matter how hard they tried and i think...can i do that to her? I wish to god i had a magic 8 ball i could shake that would give me all the right answers and id never have to be in this position because hell the magic 8 ball would be making the choices not me. Not my 5yr old either.I wish with all my heart and sould that cancer didnt touch our babies and they didnt need to suffer and i wish to god it had NEVER touched mine.

Day 3 and 4 of chemo

Day 3 of chemo was just as bad as the first 2 days lots of crying and fighting not to take the yucky chemo.She was so upset that even Uncle Denny had tears in his eyes and wanted to yell no dont make her take it leave her alone,but he didnt he just stood there trying to bribe her along with the rest of us. After she took her chemo she wanted benadryl cause her belly hurt and she was whiped out so she napped for 3hours after that. THEN her day got so much brighter because she got a surprise visit from a couple of wonderful beautiful girls that dressed as Princess Cinderella and Princess Bell for her and brought her presets, made christmas ornaments with her and colored. Audrianna gave them Team Audrianna Shirts and after having a wonderful 3hr princess party they all took pictures together in the shirts before they went home.
I am so thankfull to have wonderful people in our lives that do things like this to help her smile.

Today is day 4 of chemo hell week and we tried to trick her into taking the nasty chemo. Her nurse mixed it with her antibiotic and we gave it to her with a syringe lol i pushed abotu 3/4 of it into her mouth and she swallowed and yelled ewww that has chemo in it...no fooling this kid i tell ya.We spent the next 20mins or so trying to get her to take the lil bit that was left uggh i sometimes wish she wasnt so smart lol but there was no crying or screaming today so that make4s today a much better day.
Now she is in the playroom with her sister....YES i said sister wooohooo she was finally well enough for her grandparents to bring her to visit.Kyra was so excited because the princesses left her a present also, and it matched her sisters!

Audrianna is just happy to have her sister, nana, and poppa john visiting her and we are all in the playroom right now playing dont break the ice...thank goodness for the little things that help us get through the day!

DAY 2 RD 4 CHEMO HELL

Today was probably worse then yesterday and i didnt think that was possible uugh.The day started out fine because she wasnt getting chemo till 330,so she got to eat lunch, play in the playroom and make a new friend named Kaylana which was very very nice. BUT THEN....it was time for chemo grrrrr and welcome to HELL.
Audrianna said she would take the chemo with chocolate milk and then decided it was so gross she wasnt taking it.We tried everything till she was finally so upset and hysterical she asked the nurse to put in an NG Tube so she didnt have to taste it.Well the nurses dcided to give her what she wanted and came in with the tube and her favorite male nurse Jason. As soon as audrianna saw the tube she started freaking out and crying and telling Jason ill drink it..ill drink it ...i dont want the tube. After almost an hour and half of fighting with her she drank the meds wit Jason and didnt get the tube.
My heart was breaking just to hear my baby ask for an NG tube, you know the chemo is bad when a 5yr old would rather be held down for a tune down there throat then swallow it.:( Audriana got some bendaryl after that cause she was so upset and took a nap. When she woke up there was a beautiful care package for Audrianna from the Group from THON pennstate hazleton campus, and it was the first time she smiled all day She is right now sleeping with the blankie and pillow pet....THANK YOU HAZLETON THON!!!!!! You made a sick young girl very happy today.

DAY 1 ROUND 4. OF CHEMO..CANCER SUCKS

So today Audrianna was admitted for her 4th round of chemo and let me tell ya its been a hell of a day so far.The one chemo she has to take only comes in capsule form and she has to take 75 miligrams of it which is a total of 6 pills and she cannot swallow them sooooo it has to be put in some type of food or drink and so far NOTHING has worked to take the nasty taste out of her mouth. Today we used the orange juice like we have the last 2 times and she has just had lunch like an hour or so before...her favorite chinese food of course...and what happens you ask...well she gets the chemo and loses every blessed thing she ate all over her blankie uugh and then because she hadnt kept it down for 20mins she had to do it all over!! The 2nd time we tried Yogurt but she couldnt stop crying and being hysterical long enough to even try.Finally after trying to bribe her with everything and anything and nothing working we had to get *Mean*...tell her either she took it or they were going to put in a nose tube(NG TUBE) and give it to her that way,this set off another round of hysteria which i then calmed her down from again,tried to give her the yogurt and NOOO wasnt gonna happen so i had to hold her down and force it in and hope to god she wouldnt throw up again...she started to gag and i had to yell at her not to puke or she would have to do this again which is the Only reason she kept it in...now i feel like the worst person on earth for having to do this to her But i know it had to be done,yet i hate myself, hate this disease, hate everything right now that is hurting my baby:(
Mommy had to walk away and go in the bathroom and bang her head a few times and cry a little so Audrianna wouldnt see her, then come back out and smile again till reinforcements got there.
Thankfully now Uncle Denny is here, he brought her a new blankie thank god and some goodies so she is smiling and mommy got to run away to the playroom and type and cry in private.
NOBODY Knows this hell unless they have been there with a sick child and even then every hell is different in ways.This is the hardest thing i have ever had to do in my life and i swear if one more person tells me this is just my cross to bear and god doesnt give you more then you can handle...im gonna take that cross and ram it where the friggin sun doesnt shine!!!!!!!!!!!
Pissed off and scared and stuff like that doesnt help,even though i know people are trying to make me feel better...it really doesnt.
Found out today that out dear friend Karson is being transferred to CT Childrens Hospital and hopefully they will put him on a new trial otherwise his parents will be taking him home to live out his days and today is his 3RD BIRTHDAY...HOW FUCKING FAIR IS THAT?? I am so tired of watching these babies die, why cant they find a damn cure grrrrrrrr so angry right now and so damn sad.

2 weeks at home

Hi everyone i know i havent posted in a while but whenever we are home things get really hectic trying to squeeze every minute out of the day!!Audrianna and Kyra are so happy to be together and goto school that the running never stops which is an awesome thing.Audrianna was so happy to goto school and be able to participate in trick-or-treating with her sister this year. We originally picked out adorable witch costumes for both of them and then we got hit with a HUGE Snowstorm that dropped 14inches of snow on our town lol so out went the witches and thanks to a very good friend Tina they got to be ScoobyDoo and Dot the Ant from the movie Ants...Both girls were thrilled with the new costumes and i was able to put there snowsuits under the costumes so they were nice and snuggly warm when we went out.I took them to a safe trick or treat in a gated community that held there's from 2-4pm which was awesome so we were out with the sun when it was 35degrees out instead of at night when it was 20 lol the girls had a great time and so did i.


Unfortunately then Kyra got sick with the flu and of course i blamed myself because i let them play in the snow and took them out for halloween...now yes i know thats crazy they didnt get sick from that but still as a mom ya always blame yourself. Audrianna held out for a few days and so did mommy but then we both got sick also. The girls havent gone to school in 3 days and im hoping they can go back tomorrow..fingers crossed!

Audrianna and I have decided to help out our hospitals oncology floor for christmas and we have started a Christmas Blanket/pillowcase/Hat/Scarf/Toy/games for the playroom anything you can give drive!!!! We are hoping to have lots of stuff to hand out to the kids this year. The one thing Audrianna always looks forward to when she goes to the hospital is asking the volunteers from child life for a new blanket and pillowcase and then arts and crafts to do in her room. For the last 3 months they havent had any blankets because there supply has run low and i know alot of the kids love to get them so we are hoping to replenish the supply and be able to give each kid a new blanket for christmas and hopefully a few other things:)
Here is the link and we hope that some of you can join us in making this christmas a little better for the oncology kids at Janet Weis Childrens Hospital!

http://www.facebook.com/#!/event.php?eid=289612344393746

Speaking of hospital's we go in for the next round of chemo on monday november 7th and then 3weeks after that we do scans to see if the chemo is working!

3rd day rd3 chemo

Day 3 started off ok but then Audrianna wasnt feeling so well in the afternoon,she got a belly ache and was very cranky. So Audrianna and Mommy spent 4hrs in her room watching the Lion King and Lion King Part 2 until she felt better.Audrianna has made a new friend named Bailey who is 6yrs old and has leukemia, Bailey is in the room next to us and hasnt been feeling well either so today when they were both feeling better for a little while the girls went to the playroom and colored together.It was good for both of them because they both seemed to get there energy back for a bit before they went back to there rooms to sleep.
It's sad to watch them both suffer but yet it was good to see them both be kids for at least a little while.They already have plans to play together tomorrow and Bailey invited Audrianna to her little sisters birthday party tomorrrow which is just so very sweet.
I am hoping that tomorrow is a better day and that the chemo doesnt make her sick again. Usually day 3,4 and 5 are when she starts to have side effects and feel yucky,so im hoping the next 2 days just fly by and she doesnt get sick.
Well audrianna is asleep so mommy better get some sleep. Night all

2nd day rd3 of chemo

Today i talked to Audrianna's doctor and he has decided to wait on scans until we do 4rounds of chemo.This means we come back to the hospital in 3 weeks and then her scans will be around dec 4th, i am trying very hard to be optimistic and think ok that means he thinks its working and thats why he wants to wait BUT the scared,terrified,cant breathe mom side of me is thinking omg does that mean he knows something i dont and he wants to wait so that it might start to work??? I know i shouldnt go there but it's so hard to sit here in this room and on this oncology floor and watch all the sick kids and see some of them pass away and not think like that....is so hard to be POSITIVE all the time but i still smile because Audrianna smiles and its what she needs from me.
I have decided no matter what happens she will have the best holiday season any kid has ever had. She is going to trick or treat for the first time in 3yrs. She is going to be HOME for Thanksgiving and spend time being thankfull with her Family no matter what....AND somehow,someway she will have THE BEST CHRISTMAS A KID COULD EVER EVER HAVE.Although i dont know how ill top last year since April Valvano and Her Husband Jamie gave her a trip to NYC!!!!!
I am going to start as of today trying really hard to push the fear to the back and work harder on saying SHE IS GOING TO WIN THIS FIGHT,SHE BEAT IT BEFORE SHE CAN BEAT IT AGAIN....and not let the what if's or the numbers get me down(i said try)
Audrianna is having a Great Day she had a great lunch from one of her wonderful FB Family Becky McCabe who sent her chinese food and her daddy,sissy,poppy, Nana and Poppa John all came to visit. So even though she is getting chemo and doesnt feel the best she is still smiling. Oh and she has one of her FAVORITE male nurses today also...gotta love Tom he keeps her smiling:)

Round 3 of chemo and a conversation about heaven

Today Audrianna and i left for the hospital to be admitted for her 3rd round of chemo, first we went for breakfast at friendlys so she could see her Aunt Dena before we left and of course she got balloons as she was leaving.

Audrianna always makes a wish with her balloons so before she sent the balloon off she asked me if Sommer was still in the hospital and i said no baby she isnt.Before i could say anything else she sent the balloon off and yelled i love you Sommer! When she turned around and asked me if Sommer would see her balloon i said yes baby she will see it all the way in heaven, and she said so Sommer is in heaven now mommy and i said yes baby...she then asked if Kelly had met Sommer when she got to Heaven and was she taking care of her...i said yes baby im sure she did...then Audrianna the wisest child i know said Well Mommy now when it thunders i'll know its Sommer Bowling for me(because they always played Wii Bowling together) and then she said and when i play Bowling on the Wii i know Sommer will be watching.Audrianna asked me why Sommers Mommy didnt goto Heaven with her to take care of her and i had to explain that people dont always goto heaven together but that there is always someone there that loves you when you get there and Sommers mommy had to stay behind to take care of her sister...Then Audrianna said you know mommy...the Blessed Mother watches over us from Heaven and i said yes baby she does and Audrianna said and now she is Taking Care of Sommer till her Mommy can goto heaven to be with her....Let me tell you i was so glad i was driving and she was sitting behind me so she couldnt see my face because the tears were streaming down my face.It always amazes me that children can see things so clearly when we cant. I am so glad that she can believe in god and the blessed mother and heaven when i myself am having such a hard time believing in anything.I never discourage what she believes because thats what makes her feel better but as for me i believe in Angel's because then i know she will be taken care of if something happens BUT i have a hard time with the all powerful god after sitting in this hospital.
Once we got to the hospital we went to clinic and got our blood draws and admission papers and then we went back to valet parking to get our car and have lunch just to find out the car wouldnt start uugh so we had AAA tow it home and now we are here for a week with no car which means i cant go get her things she likes to eat and i have to hope she will eat the hospital food.Hopefully when her *Uncle* Denny gets back off the road he can get the car fixed for us and maybe he will even deliver it lol that would be awesome(hint hint lol hope your reading this denny).
Audrianna did very good with her chemo today and hasnt had any adverse effects so far thank goodness.She is having a good day and she even got a visit from the therapy dogs and got to see her favorite *Miss Karen and Shooter* who always bring a smile to her face-:)
I talked to our Oncology Team today and in 2weeks after this round of chemo they will do a CT Scan and An MIBG Scan to see if the tumor has reduced,stayed the same,grown or gone away. And then they will decide if she continues this chemo or if we are done. If the tumor is stable they will contine for another 3rounds and then do more scans and add a 3rd chemo to the mix to keep the tumor stabilized and hopefully help it shrink. So please everyone keep the postive thoughts coming and hopefully in 2 weeks when she gets scans we will get GREAT results instead of bad results.

Stop the World I Cant Handle Anymore

I havent been writing on here for a while because i have so much anger and pain built up that im afraid of the things ill say and the people ill offend. Today is one of those days i just dont give a crap if i offend anyone anymore. Audrianna did her 2nd round of chemo last week and came home on sunday,while we were in for treatment one of Audri's dear friends Sommer was life flighted in for pain management.Sommer is 12 and had osteocercoma she was in remission for a few months and then it came back 20x worse then before and she was given 3months at the most to live,last i heard from her mom Sommer had spoken to god and told him she was ready to go BUT not till she went home because she didnt want to DIE in a hospital,so she was being taken home today.
I am so Sick and tired of watching kids die, so sick and tired of loving them and watching them fade away dammit and even worse im so fucking pissed off that there is a GREAT POSSIBILITY MY CHILD IS NEXT!!!!!!!!!!!Everytime one of these kids that i love dies, its like losing my own child over and over...it never gets easier and there is no way NOT to get attached,only someone with no heart could stay detached.
I look at my child and see a happy bratty 5yr old and then i remember that inside her is a tumor eating away at her and if this damn poison we are giving her doesnt work she WILL DIE.I say that i have come to terms with that and that im prepared not to be selfish and let her live the rest of her life the way she wonts on her terms but really NOBODY is EVER prepared for it no matter how long you have been getting ready for the day to come.I know some people turn to god and believe that he is all powerful and he will heal there children and if he doesnt he will take them to a better place....BUT i cannot believe that because what better place is there for a child then with there mother??
I am so pissed off at this all powerful all knowing god everyone talks about...i mean really if he is all powerful and supposed to protect the little children...then where the hell is he? Because let me tell you he sure as shit isnt sitting on the oncology floor next to these babies that are dying!!!!
I am also pissed off at all the people that say they understand what im feeling...my question to them is this....has your child had canceror any other life threatening illness?? Have you had to hold her/him down while they shove needles into them or chemo or an NG Tube or any of the other shitty things that come with being terminally ill??? IF NOT SHUT THE FUCK UP AND DONT TELL ME YOU UNDERSTAND!!!!!!! If you havent walked in my shoes dont tell me that you feel my pain or know my grief or my anger or that i shouldnt be mad at god, because my answer to that is FUCK YOU. Has your marriage been ripped to shreds because your child is ill, has your family gone through hell?? NO right? Then again SHUT UP.
I wish all the people that think they know whats best for me would get off there goddamn high horses and realize im doing the best i can for me and my children and if ya dont like it,to goddamn bad. Unlike Most people i have to try be in 2 places at once and choose between my children when all i want to do is hold them both close, slam the door in the face of any illness and wrap them in bubble wrap till they outlive me dammit.
I wish people would understand that when i vent on FB or Here in this blog its because i have nobody else to talk to and if i dont get it out somewhere im going to explode.Life sucks and right now its not getting better. TONIGHT i had to Hold my child down to change the dressing on her port, listen to her scream i was hurting her and telling me she hates me and all i was trying to do was make sure she doesnt get an infection.It is so hard to have to do that and not cry or yell at her or infront of her.After i was done i walked into the kitchen, punched a door, and then remembered that inanimate objects dont bend when you hit em and it hurts like hell.All i want to do is yell and scream and smash things just to hear them break...will this make things better?? NOOOOOOOOOOOOOOOOOOOOOOOO but id sure as hell feel better listening to them break.

Scranton for Aimee's Army Cancer Walk This Weekend

So this week has been a whirlwind of different thing since we came home from the hospital. Audrianna and Kyra were so excited to finally see each other again and be able to hug and kiss.Our wonderful friend Dari McManus THE BEST PHOTOGRAPHER EVER aka Auntie Dari went to the hospital with us for the week and then came back to the house and took pictures of the girls.She catches the soul's of the children she photographs and she travel's all over taking pictures of Sick Children,sometimes they are the last pictures that the parents have to hold onto later.One of the pictures she took of my girls speaks volumes and im going to post it here to show just how precious of a gift she gave me.


When it was time for Dari to head to scranton to help get things ready for the walk our wonderful friends Annette and Jennifer came to pick her up and of course they played with the girls for a while and here is the picture of them...Our Family..before they left.


Once everyone was gone it was back to normal lol whatever that is. Girls went to school and Audrianna was so happy to be back with her class. Then when they came home from school we went through all there clothes,toys and blankets and put about 8 garbage bags together for the victims of the horrible flood we had last week. I am so proud of my girls, they went through and picked out all the stuff they wanted to give to kids that didnt have anything.My girls gave away clothes that still had tags on them that they never wore because they wanted the *flood kids* to have new stuff too!!!!As a mom i was never so proud because i know that i have done something right in raising them,they both have very generous souls.<3

Now we are getting ready for a wonderful weekend in Scranton,Pa with our Cancer Family at the Pediatric Cancer Walk held in Honor of Aimee Dickey by her wonderful Mom Annette who keeps Aimee's Army running just as Aimee wanted. Audrianna gets to be one of the Golden Children and help cut the ribbon for the walk and she is so excited. The walk is Saturday September 17th at Nayug Park in Scranton and it starts at 10am. We love the fact that we get to raise awareness for pediatric cancer and raise money to find a cure and help stop this damn disease from killing our babies!!!!!!!! Hope to see some of you there:)
Have a good weekend everyone and we will see you all on monday, hopefully with New Pictures by our wonderful friend Auntie Dari<3

Chemo week

Audrianna,Auntie Dari McManus and I all checked into the hospital for chemo on wednesday morning.So far Audrianna is doing well with the chemo, other then complaining her tummy hurts and a little bit of itching she is feeling good.Eating isnt going so well though,she asks for food and then takes a bite and doesnt like it and wants something else,today we went to the cafeteria 3 times and i think she ate maybe 2 bites each time!!!! Audrianna's friend Karson is in the room next to us and she loves playing with *Her Baby Karson* all day when they are both feeling ok, and Karson's dad Brian has been keeping both of them laughing which is a great thing.The flooding here in danville is pretty bad and we havent been able to get any visitors since all the roads leading in and out of here are closed,audrianna is upset because nobody came to visit her but i keep telling her its not because they dont want to...its because they cant...but she is 5 and omg is she MAD!!!! She keeps asking if the hurrican is over so the rivers will go down and stop flooding so people can come visit lol she misses her sister and wants her here NOW she told me earlier. Im just glad she is feeling well enough to be mad!!!!!!!

So I spent wednesday night in the ER getting my foot looked at...last week i got glass in my foot and now my foot is INFECTED and Painful because i kept saying i dont have time to goto the doctor(im a mom,who has no time for herself) it will be fine and cleaning it with peroxide and putting a bandaid with triple antibiotic cream on it,BUT once we goto the hospital it got very painful so off to the ER i went...the ER doc did an xray and said there isnt any glass left in there and gave me CIPRO for the infection, so i am hobling around in pain while Auntie Dari chases Audrianna which makes both of them extremely happy. Hopefully i can get the infection under control because as a diabetic thats one thing i have to worry about alot is keeping my feet healthy!

Oh well i will keep you all updated on audrianna and myself tomorrow!!!!! To all our Friends and Family in the path of this horrible flood, please be Safe, our thoughts and prayers are with you<3

Chemo Plan and Life Plan

Thursday September 1st Audrianna and i went to see her Oncology Docs and talk about a plan of action for her relapse.While Audrianna played with the child life specialist i sat and talked to her doctor about what this relapse means for her since EVERY Parent of a child with Cancer and especially Neuroblastoma knows how bad it gets...Relapsed Neuroblastoma has NO KNOWN CURE AT THIS TIME...and may never have a known cure in her lifetime or mine-:( We have decided to use a Phase2 trial from Sloan Kettering which she can get at our hospital,the medicine she will get is Irinotecan and Temozolomide over a course of 5days then she gets 3 weeks off and goes back in. This will continue for 3 months of treatment before they do new scans to see if the tumor is gone or has stabilized. If the tumor has stabilized or is gone then we can continue this course of treatment because it has very small side effects, isnt anywhere near as toxic as anything else she has ever been given and will allow her to have QUALITY of Life. I also talked to her doctor about the fact that if the tumor didnt shrink or stablize or has metastisized into other lesions then we want to stop treatment and take her home and let her have QUALITY OF LIFE with her Sister and the rest of her friends and family until she is ready to go.
I know some people are going to give me a hard time about this and say im giving up and blah blah blah...but im not giving up, believe me the selfish MOM side of me SCREAMSSSSSSSS TRY EVERYTHING I DONT CARE IF IT MAKES HER SICK AS LONG AS SHE IS HERE....but then the sensible Mom side of me that has watched other kids suffer says...that isnt what she would want, Audrianna is a Vibrant little girl that loves life,she wouldnt want to spend what little time she has left strapped to a hospital bed throwing up and waiting to die so stop being selfish and thinking of yourself and do what would be best for her and give her Quality over Quantity of life. And the sensible Mom always wins because this isnt about me, its about HER. I sat and had a talk with Audrianna just me and her and asked i asked her if the doctors tell mommy that the cancer is too bad and nothing they can do is going to make you better and you are going to go be with god, would you want to keep fighting and try everything even if it makes you really sick and you have to stay in a hospital OR would you want to come home and be with Mom,Dad,Sissy,Nana,Poppa John,Granny,Poppy,Dustin,Bret,Lizz,Uncle Travis,Uncle Ed and all the other people that LOVE YOU until its time to go with god and she said...go home Mom,i dont want to be sick forever id rather play with my sister till i goto the Angel's......NOBODY SHOULD EVER HAVE TO HAVE THAT TALK WITH THERE CHILD AND GODDAMMIT MY CHILD IS 5YRS OLD going on 50 thanks to Cancer...so for all the people that would think to put me down for this decision,they should think before they speak because until you have Walked in the shoes of a cancer Mom/Dad dont you dare judge.
September is Childhood Cancer Awareness Month...are you aware?? Did you know that 46 kids are diagnosed with cancer everyday and that 7 kids DIE each day?? Do You know that the GOLD RIBBON Is the symbol for pediatric Cancer?That only 3percent of all the money raised by the american cancer society goes to pediatric cancer?? Please if your reading this,please do something to bring awareness to pediatric cancer for the month of september and remember without our children there is no future.....so help another family be saved from hearing the words Your Child Has Cancer....Your Child has Relapsed....Your Child is going to DIE!!!!!!!!!!

Day 6

Today Audrianna was starting to feel better and we thought we were going to be able to go home tomorrow BUT then she fell off a chair in her room face first and broke her Nose....uughh.....i feel so bad because she was sitting on my lap when it happened. First the surgeons didnt think it was broken but then they had the head radiologist look at it again and it is fractured, so now tomorrow we have to get a consult from ENT Surgery to see if they think they need to do something to fix it or if they are just going to let it heal on there own....she already has a Fat lip, Swollen Nose and one eye is starting to turn black and blue so by tomorrow she should be really colorful. When Audrianna went for her CT today she did it without sedation for the first time ever!!!! Dr.Walsh bribed her with a unicorn pillow pet lol and she wanted that pillow so bad she stopped crying and held perfectly still to get it.Then it was back to our room for chinese food which she told me was the ONLY thing that would make her stop crying(man am i a sucker or what?) and then some medicine and a nap. Nana,Poppa John ,Aunt Michelle and Rhianna came to visit and cheered her up with some Farting Puddy that she got from Jordan omg it's so gross but so funny and i was just so thankfull they made her smile and laugh before they left. Our Friend Jordan works at the hospital and we met her through our dear friend Kelly Sledzinski who is Audrianna's Angel, Kelly passed away 2yrs ago but her friends and family have always kept Audrianna in there thoughts and prayers and been very good to her...Thank You Jordan for the Farting Puddy and the beautiful smile on my babies face tonight!!

Day 4 of Hospital Stay

So its been 4 days since we were admitted for Audrianna's Surgery and yes i say WE because i am here too every step of the way. The first 3 days were really bad, lots of pain and crying. We did have family visit which made her happy on the 3rd day and she even ate a lil bit for them and after they left she even got up and walked 6 whole steps!!!!!!!But then of course she pushed herself too far and she was in pain and crying all night and nothing was working and on top of the pain she also got the hives from the dylaudid which then turned to blisters on her butt and popped uugh she now has bandaids and antibiotic ointment everywhere, poor kid cant get a break!Finally around 930am she got another dose of benadryl and was able to fall into a restfull sleep till 2pm which was a great thing for her. We had a few visitors today which brightened up Audrianna's day, first our friends Andrea,Micheala and Family came to visit and brought Audrianna a really cool purse that has a monkey on it and even though they are battling cancer themselves they reached into there hearts and helped us and i am forever thankfull that i have wonderful friends/family like them in my life. After they left Dr.Tom visited and made Audrianna smile with his great smile and spikey hair,he is her all time favorite doc and i am so thankfull for him to because he always comes to make her smile!!! Then we had even more visitors...Reiley and her wonderful Aunt Sandy came to visit, they brought audrianna a kewl supergirl bag,balloons and some snacks....when they left she was smiling and happy and for me that makes my day great. Now we are having dinner, visiting with Nana and Poppa John and waiting for Uncle Denny and Kyra to get here so she can see her sister....hopefully the rest of the day continues to be Happy for us-:) Thank You All for your thoughts and prayers!!!!!!

Surgery and Hospital stay day 2

Audrianna had her surgery on Friday August 19th to remove the tumor they found between her spine and her aorta. The surgeons were able to remove at least 75% of the mass but the other %25 percent was wrapped around her aorta and the main artery supplying the blood flow to her left leg, to try and get that she probably would have lost her leg or bled out so the docs left it there and we hope that they can now get it with whatever course of treatment we do next. My poor baby is in Alot of pain, her poor belly was cut from one side to the other so they could get in where the tumor was...right now she has an Epidural Infusion running into her back,Dylaudid every 3hrs and Toradol as Needed..Plus Benadryl every 4hrs as needed for the itching and she is still restlessly tossing and turning from the pain. She wakes up long enough to ask for more pain meds and go back to sleep. Sitting here watching my poor baby in pain is making me crazy and now she has to be on oxygen to because everytime they give her pain meds she desats-:(...i want to stand and scream WHY DAMMIT WHY!!!
Today my parents came to see us and tried to cheer audri up but that wasnt happening and she slept through most of the visit but it was still so good to have them here,I thank god for them everyday because without them i dont know how Audri.Kyra and I would have fought this battle the last 2 1/2yrs.
We also had a visit from our Dear Friends Annette and Jennifer Mckeon, who came bearing laughter which was greatly needed and lunch which was much appreciated.Poor Annette thinks audrianna hates her lol but really she just picks on her because she know she thinks that!! Annette bought audri a Butterly Light and audri didnt want anything to do with it while Annette was here but as soon as she left she asked me...Mom where's the Butterflies Auntie Nette bought me...omg she is such a stinker! While annette,jen and i were looking up treatments on the computer for relapsed neuroblastoma i saw Sommers Mom and i was like omg what is she doing here and went chasin her down the hall...Sommers Mom Jen and i have been through this fight together like family and Sommer like Audrianna was Cancer Free...today my heart broke when Jen told me Sommer is relapsed and its bad-:( WHY the F*&* cant Cancer leave our kids alone, why do they have to suffer?? And goddammit most of all WHY ISNT THERE A CURE YET???????????? These are all the questions i want answered and i want to scream them at the top of my lungs till someone gives me an answer. Why do kids who are told they are cancer free and you think they are gonna go on and be normal kids and goto the prom and get married end up back in here dying?? Audrianna is 5 and Sommer is 12....how is this fair? AND why oh why does everyone preach to me about how god is going to fix this?? Come sit in an oncology ward for an hour,meet these babies and then tell me if your all powerful god is sitting here with us because right at this moment im having a hell of a time finding the FAITH to BELIEVE that!!

Surgery Tomorrow

Audrianna is having Surgery on Friday August 19th to try and have her tumor resected, if they cant get the whole tumor out they will just biopsy the tumor to see what we are dealing with.The doctors are hoping they can get the whole thing but its in a very bad spot so they arent sure till they get in there. The docs say it doesnt look like its wrapped around her Aorta or her Spine or her bowels so they are hoping they can get it out without any problem but its in such a tight spot they arent sure. Oncology isnt sure if we are still dealing with Neuroblastoma or not because her urine levels were fine,so it could have mutated into a different type of cancer or it can be a benign tumor which is what im praying for. If it has mutated that could be a good thing or a bad thing, good because then they will have different treatments to use on her that she has never gotten before....bad cause it could be something worse not better uughh the waiting and the worrying is the worse part. They could go in there, cut her open and find out its benign and we worried all this time about relapse for nothing BUT really in my cancer mom heart i dont think thats what they will find because it has NEVER been that easy, yet in my logical brain im trying with all my might to BELIEVE that is the case. One of the hardest things about watching your child go through something like this is you never know whats going to be thrown at you/her next.I have found in the last 2 1/2 yrs of treatment for Audrianna that there is NEVER good news without bad news following and that to get your hopes up in anyway always means having them crushed later.Our Family is trying so hard to stay positive...keep our chins up and know she will be ok...but its a really really hard and scary place for us right now-:( ....i am asking all of you whether your atheist,catholic,whatever....please ask the universe, the goddess, god, or whatever else you talk to for guidance to help Audrianna through this surgery. The doctors say if all goes well she might be able to come home monday, if there are complications we could be there much longer. I dont always have computer access there but i will try and keep everyone updated and informed on how things are going......love the bartol family!

New York Trip

First i want to say a HUGE THANK YOU to Gwen Cardaci, Alana Geller and Kathy Geller the wonderful family that sponsored Audrianna's trip to Ny to see the beach!!!!! They are FAMILY to us and treated all of us wonderful. Audrianna and Kyra LOVED the beach, i have never seen there smiles bigger or either of them happier then the day we surfed the waves and played in the sand. Both girls had such a wonderful day even if they got sunburned after being smothered in sunblock over and over....they are like there mom Irish/Italian girls that Burn and then get a small tan and Burn again lol but they didnt care about the Burn as long as they were playing in the waves, looking for seashells and digging a sandcastle-:) After the beach we went to adventure land and went on rides with the girls....the last ride of the night for Audrianna was the lady bug roller coaster which she rode 12 times in a row and stayed on till they closed the park she loved it so much.....the next day was another fun day at FUN LAND an inside playhouse on long island. The girls had an amazing time with Gwen,alana and allison and then back to the hotel to swim. The next day Gwen's Aunt Pina(hope i spelled that right) and her Uncle Ken invited us to there house for lunch before we headed home and the girls got to swim in there pool and both learned to jump off a diving board into 9ft of water in there vests!!!! After that we said our sad goodbyes and made our way home and back to reality....But this is something Audrianna and Kyra will NEVER FORGET and i will always have these memories thanks to Gwen and her Family...we love you guys so much thank you from the bottom of our hearts<3

Hardest Conversation Ever

Tonight i had to have the hardest conversation of my life with a 3yr old and a 5yr old. Tonight i sat both girls down and explained to them that Audrianna was either going to have surgery or start chemo next week and that Kyra wouldnt be able to stay at the hospital with us. Audrianna wanted to know if it was going to be Good Chemo(one that doesnt make her hair fall out) or Bad Chemo(one that makes her lose her hair again) And Kyra wanted to know why she couldnt get Chemo to so she could be with her sister-:( Audrianna and I both tried to explain to Kyra she didnt want to have to get chemo because its Yucky and makes you sick, but all Kyra cared about was that if she got chemo too she wouldnt have to be seperated from Audrianna-:( And then when i told her she could come to the hospital as much as possible to visit and we could go on webcam everynight she cried and cried im gonna miss my sister,over and over. My heart is Broken in a thousand pieces right now....Audrianna is 5 and was hugging her sister and reassuring her they were never gonna be apart long and she would always love her sister and come home after chemo!!!!!!!!! Kyra is 3 and couldnt understand why she cant sleep in audrianna's room at the hospital and make her sister feel better.
Im 39 and i dont understand why this is happening sooooo i can imagine how hard it was for my 3yr old to understand....I HATE CANCER,GODDAMMIT WHY CANT IT LEAVE MY BABIES ALONE!!!!!!!!! I have never been more sad or angry in my life. I am so tired of being scared and i know audrianna is too and now Kyra who was to small the first time has to live with that Fear and Sadness too. I really wish i would wake up and this would have all been a bad dream.....but if wishes were rainbows right?

I wish people understood my choices

I sit here crying and wondering why i always feel so alone, why cant people understand the choices i make in my life arent only for me?? My husband and i are mostly estranged because cancer sucks and has torn our family apart. Everyone wants to know WHY wont i throw him out since we fight and he isnt really an active part of our life...the answer is WE HAVE CHILDREN AND ONE OF THEM HAS CANCER!!!!! I will not Tear My Kids Life apart worse then it already is just because me and there dad cant always get along. There Father Loves them even if he doesnt always know how to show it and even if he lives in his own bubble and wont admit that Audrianna is sick and may die..but thats his way of dealing with this horrible fucking disease thats tearing our family apart.
I am so tired of the people i love the most looking down on me because they feel i should be stronger and just tell him get out and go away...what they dont realize is i am being VERY STRONG by not telling him to get out and go away, i am being as strong as i can to keep my kids happy and i wish with all i have that people would respect and understand that.
Jim is not a bad person,he has a good heart, he just doesnt show it and lives in a different world then i do now that audrianna is sick...i dont hate him as a person i never could we have been together 20yrs. I hate that i feel like he has left me to fight this battle with our child alone, i hate that he cant deal and i have to make all the choices and decisions...i hate ALL THOSE THINGS but i dont hate him. Just because we arent the same people we were 20yrs ago or even 2yrs ago when Audrianna was diagnosed doesnt mean we dont still Love and care fo each other it just means the Love has changed and that this disease is Killing it slowly piece by piece no matter how hard we try not to let it.
Cancer doesnt just affect the person that has it, Cancer affects the whole family, your friends,everyone around you and sometimes even if you beat the cancers affect on the body, the cancer still wins because it tears apart the family and the friends you thought would always be there.
Im sitting here right now listening to my girls fight over CRAYONS of all things and to most moms the yelling and screaming that is coming from my living room would make them crazy, to me its the most beautiful Noise in the world. I have friends that cant understand why it doesnt bother me if Kyra pulls audrianna's hair or vice versa, or they beat each other up, why doesnt it make me crazy and yell? Because TOMORROW they might not be able to do that so SCREW IT let them fight,cry,make a mess and tear things apart TODAY because they can and they can do it TOGETHER.Right now all i care about is that Audrianna can still Yell and be a Kid even if it means beating up her sister or her cousin.
One thing Cancer has taught me is that you have to live for today and stop sweating the small stuff...who cares if the house is a mess, or the kids are fighting and beating each other up...as long as your all together when it happens??

Tomorrow is Scan Day

As i sit here tonight watching my 2 beautiful little girls sleep all i can think is please please please let the scan come back normal...please please please dont make me have to tell them any bad news, please let them continue to be children not Small Adults, which is what kids with cancer and there siblings become. I think every adult in my family is terrified of tomorrow, terrified this scan will show relapse and we dont know how to deal with that...But we are also trying with all we have to be POSITIVE and say she is NOT RELAPSING she is so tough and she has already beaten this so there is no way in hell this scan will come back bad.I think the worst part of the scan is the wait to find out the results, the waiting is enough to make you crazy and your hair turn grey overnight. I ask that anyone reading this says a special prayer to god/the universe/the goddess...anything you believe in and ask them to please let Audrianna still be N.E.D. and not have to suffer anymore!!!!!!
On a Postive note after her scan we are going to act like nothing happened for a bit and get in the family car and drive to Columbus Ohio so the girls can participate in a Fashion show Hosted by Nellie's Catwalk for Kids, they are going to be Models and they are super excited. I have always said i would NEVER stop Audrianna from doing anything she wanted to do incase there were no tomorrows, so even though we have the scan results hanging over our heads we are still going to let her be the best Model she can Be<3 Thank You Nellie for Making this trip possible and sponsoring our family so that we were able to travel to Ohio and be a part of this!!!!!
Goodnight everyone, dont forget those special prayers tonight<3

Scared, Depressed and Trying to Smile

Ever since i talked to the doctor on wednesday i have been living in a constant state of fear and worry,wondering if Audrianna has relapsed.Both Audrianna and Kyra have been sick since friday and i am praying with all that i have that the spot they saw on the CT is an Infection due to this wonderful summertime cold...BUT that's the logical side of me, the Terrified Cancer Mom side of me hasnt been able to be that optimistic and is still just putting on the Fake Smile for everyone to get through the days. Now with Audrianna being sick and having a Cough im afraid they are going to be rescheduling her Scan due to the fact they wont sedate her if she is sick and then we have to wait LONGER and the Waiting is the worst part....the Not Knowing is worse then the Knowing. Once you know the results one way or another then you can move on and figure out a plan from there,you can handle whatever they tell you even the bad stuff because you have to...but the waiting uuughh the waiting can make you feel like your suffocating/drowining and never gonna come back up for air until you get that phone call that tells you one way or another...relapse or clear scan!!!!!
I tried to take a break from the worry this weekend and we spent the weekend with Great Friends...Gwen,Alana and Kathy came in from NY and we had some retail therapy and lots of swimming even though the girls werent feeling the best. I just want to say Thank You to all of them for helping me Smile through this weekend and giving me and the girls a great time and lots of love.....xoxooxx
But now the weekend is over, everyone has gone home and its just me alone with my thoughts again.I had such a meltdown earlier i was yelling at everyone for no reason and i hope they will forgive me but i had to let some of this anger out before i just burn up. I even locked myself in the kitchen and threw things at the wall and one of them was my New Nonstick Frying Pan which i Dented the whole side of and then sat on the floor and cried because i broke it uughh the emotions go from mad, to sad, to happy to i dont give a fuck in 5 seconds flat and i cant stop them.I probably wont be able to reign it all in until i know the results of her MIBG Scan and you know what...THAT SUCKSSSSSSSSSSSSSSSSSSSSSSSS....NOBODY SHOULD HAVE TO LIVE LIKE THIS....NO Parent should have to worry every second of every day if there child is going to die, no parent should have to bury there child, no parent should have to hear the words your child has cancer, or there is nothing else we can do so take your child home and make them comfortable uuughhh I HATE CANCER, I HATE THE FACT THAT THERE IS NO FUNDING FOR PEDS CANCER AND OUR KIDS SUFFER EVERYDAY!!!!!!!!!
I am so angry right now that most of the time i feel like im living in a red haze but its just like when she was first diagnosed, if i let go of the anger which is holding me up, i feel like i'll fall down and never get up and thats not what she needs, she needs me to be strong for her.So right now i am staying angry to stay strong and for some of you that's going to sound CRAZY and to some of you thats going to sound completely normal and you'll understand what i mean.
Please keep praying for All of Us that we can handle this pressure and get through this and that she stays N.E.D. and that damn spot on the CT was Nothing because i dont know how to explain to my 3yr and 5yr old that my 5yr old has cancer again and they will once again be seperated while audrianna suffers in pain and that there might be a chance they could be seperated forever-:(

Ct Scan

Audrianna had a CT Scan on Tuesday the 19th and today the 20th her doctor called me with the results. ANY Cancer parent knows you never get GOOD results withing 24hrs, i knew as soon as the hospitals number came up that something was wrong and i was right...Her Doctors saw a spot/nodule on the scan and were worried enough to push her to the top of the list and get an MIBG Scan setup for thursday the 28th BEFORE they called me. I am terrified of relapse, there is no known cure for relapsed neuroblastoma and the fight is even harder and my god im not sure she can handle a harder fight then the last one!!!!I am walking around in an emotional haze right now, all i can think is my baby looks great, she has gained weight, has a tan,been being a normal healthy kid for almost a year while she was N.E.D. and now they think its back omg how do i tell her she has to go through this again?? How do i tell her she has to get another broviac, has to have more chemo, has to spend time away from her sister aka her best friend...how do i explain any of this to a 5yr old when i cant even comprehend it?? I am a basket case right now and i refuse to tell her anything till we get the results of the MIBG and if she has relapsed i will do what i did last time and sit my baby down and tell her she has cancer and its back and expalin all the treatments step by step and ill do it all calmly with lots of hugs and smiles while im dying inside. I will put on my brave fake smile and make sure she is OK and her sister is Ok and hope to god the Happy Pills the doctor gave me work enough to keep that fake smile in place through all of thise!!!! I am hoping with all that i have in me that there was a shadow on the scan, or she has some type of viral infection making her lymphnodes become enlarged or anything other then relapse dammit and do you know how messed up it is that ANY PARENT has to WISH for infection rather then cancer?? Bangs Head off Desk....FUCK YOU CANCER, LEAVE MY FRIENDS AND MY BABY ALONE!!!!!! I WISH CANCER WOULD GET CANCER AND DIE!!!!!!!!!

Roller Coaster Of a Life

I know i havent written in a while but its been a very long roller coaster ride around here.My Husband lost his job again,my job ended in april and things have just been crazy around here. I thought once the chemo was done and Audrianna wasnt inpatient in the hospital all the time it would start to calm down around here but man was i wrong.People think that once your child is N.E.D.(no evidence of disease)that means your child is cured and nothing else is wrong with them and believe me I WISH THAT WAS TRUE!!! Audrianna is off chemo now and she is doing well but there are alot of other issues we are dealing with now like her hearing loss,the drop foot in her legs,the air space disease in her lungs and the biggest one the PTSD. My baby doesnt sleep because she is so afraid if she falls asleep she *has to goto god* and she fights falling asleep so she wont die. Everynight she asks *do i have to goto god tonight mommy* and i assure her that no god made her better because it wasnt her time to be with him yet and it wont be for a very long time but she doesnt believe me and without benadryl she wont sleep at all and then when she does sleep she has nightmares all night and wakes up crying alot,now her poor sister is doing the same thing,waking up with nightmares uugh so when i say we dont sleep...i mean WE DONT SLEEP!!!

It's very hard to be a happy functioning adult on 1-3 hrs asleep a night and sometimes the lack of sleep and depression really gets to me to the point all i want to do is lay down,but i get up and go because my kids need me.People also dont understand that, they cant imagine what you have to be depressed about,they say i should be smiling because she is doing better...well i am smiling on the outside where they can see...its just the inside that's slowly dying from fear and nobody realizes that fear unless they have lived it themselves....I FEAR EVERY SECOND OF EVERY DAY that the next test/scan she gets will come back that the cancer is attacking her tiny body again, i Fear everyday that when i tell her she doesnt have to goto god...im lying to her....i fear that she wont grow to be an adult, i wont see her have her first real boyfriend, i wont see her goto prom or graduate or become a wife/mother....i Fear these things everyday and believe me the fear is enough to eat you away from the inside out and make you crazy and if it wasnt for the anti-depression meds i take everyday, i Fear that the Fear would win and i would really lose my mind. Personally i think that every parent of a sick child has these same fears and i wish that the other people around us would try harder to understand this rather then treating us like we are bad/crazy people. Someday i hope this fear goes away and that just one day i can make it through a whole day without being afraid of losing my child and then Maybe i can be *Normal* again, but i doubt it. So today and everyday for the rest of my life i will fight to help find a cure for this Horrible disease in hopes that no other parent/grandparent/brother/sister has to go through life living with this FEAR.

Audrianna's Wish page was started to help her get her one wish to meet Hannah Montana and even though her wish never came true, we now use her page to help her and other kids fighting this disease. I advocate for every sick child i see and we goto every fundraiser we can manage to get to so we can support other families going through what we have gone through and i try to smile and tell them it will be ok you child can beat this they are strong, but in my heart i fear im wrong even though i hope im right. Everytime one of these babies loses there fight its like i lost one of my own children and the depression takes over for a bit till i pull myself back up and my husband tells me i shouldnt get attached but how can i not? These are beautiful children who didnt deserve anything bad to ever happen to them and yet they are slowly dying from this horrible disease called cancer,how can i not get attached and try to help....i cant!!!

People tell me i should give all this fear and anger up to GOD and let him help me heal, and my daughter believes in god and tells me she has seen him and his angels....BUT i get very angry and god and feel like he has let us all down so its very hard for me to let everything go and hope god fixes it...i mean where has good been for these babies? WHY hasnt he helped them? What the hell kind of plan can he have for them that lets them live in so much pain for so little time and leave behind there suffering families? I Know I know this is gonna anger people and im gonna get grief for this but its how i feel sorry!!!

Anyway back to Audrianna and sorry for my ramblings....right now audrianna is about to finish her first year of pre-school and her teacher thinks she should do another year before going to kindergarten but its up to me and im not sure, should i put her in Kindergarten or keep her in pre-school ugh how do i make this choice? Her Teacher thinks she needs more social skills and she would be overwhelmed in a whole day of K-Garten because she is so shy...but is being shy a reason to keep her back?? This is something i have to think about and talk to her teacher and the new school and see what everyone thinks and make a decision. Audrianna finally got her permenant hearing aides and she seems to be doing better with them in even if she doesnt always want to wear them, im hoping this will help with her speech which is another reason her teacher thinks she needs to stay back.I just want my beautiful baby to start everything on time and normal so she doesnt miss anything else in life, but i also dont want her to fall behind. Anybody have any opinions on this id like to hear them <3

This coming weekend the 22nd of May our family is going to be in Scranton for Red Carpet event to raise money for pediatric Cancer research and the girls get to wear fancy dresses and they are so excited and so am i, i cant wait to help educate people on how this disease affects everyone in a family, not just the child and how there is NO Money for reasearch to find a cure for our babies!!!! I want to thank everyone who is coming to this event and who has come to all the other events we have had and for supporting Audrianna and our Family. Much love to all of you!!!

Aaron Carter Fundraiser

Hi Everyone,
I have been asked to post this here since it seems some people are having trouble figuring out how to pay online for the tickets-:)....Here on Audrianna's Blog right below the picture of the girls is a Button that says DONATE, that leads you to paypal and all you have to do is enter the amount your paying for your tickets and in the subject line please enter Aaron Carter Fundraiser and let us know if your getting just tickets to the show or for the show and the meet-n-greet.
Here is the Link to the show and the info on how much the tickets cost... http://www.facebook.com/?ref=home#!/event.php?eid=141776455876376
Thank You All for Your Love and Support of our Beautiful Daughter<3
Angela Aka Audrianna and Kyra's Mommy

Sad Day

Today we lost another Precious Angel to CANCER the most evil word in the damn universe:( Our Dear Friend Kelsey Burnsworth who has been fighting Leukemia since she was 2 and fought the most courageous fight, lost her battle today and earned her wings-:( My Heart Bleeds for her family and the fact that they have to walk through the rest of there lives without her...her precious spirit will NEVER be forgotten and she will live on in all of our memories but that doesnt make this better or ok!!!!!!!!! Kelsey was a wonderful girl and had a spirit like no other, she always put others before herself...on Audrianna's 4th birthday last year we had a princess party and she asked Kelsey to play Cinderella for her, Kelsey went out and bought her own wig,dress,gloves,GLASS SLIPPERS and she WAS CINDERELLA...even though she was so sick that day she drove about 3hrs to get to Audrianna's Party and play Cinderella and didnt tell Anyone she was sick till she left and ended up in the ER the next day but said it was all worth it to see the smile on Audrianna's Face...that's how ill remember her forever,selfless,generous and caring=Kelsey-:)

I dont have the heart to tell Audrianna that Kelsey is gone, its another loss im not sure she can handle because im not handling it,so for now im not going to tell her i dont want to add to the PTSD and start the nightmares again:(
Through every step of this Journey with Audrianna i have held strong and swore i wouldnt breakdown untill she was better, well i think i might have finally reached my breaking point..i cant sleep, or stop crying and it's all just to damn much, when are they going to find a cure and stop our babies from suffering and dying????? I had to call off work today because i couldnt stop crying long enough to go in and sit down with customers..guess its time for new happy pills because Mine arent happy anymore.I just want there to be a DAY where NOBODY gets told there Child Has Cancer and Nobody Gets told there child is going to DIE and Dammit, i want all the Babies/Kids we have met who are fighting this Courageous fight To GET WELL and go home and play with there siblings and kiss there parents,i dont want to see another child i love lose there battle.

Kelsey...Fly High Baby and Teach those Angel's some Fashion Sense....here's to You always and forever Princess Cinderella...Much Love and Respect Always in Our Hearts <3

Insomnia Post

I know its been a long time since i posted last but after all the criticism i was getting around christmas i just got tired of listening to people bitch everytime i blogged so i was taking a break. Well since then the girls have had a WONDERFUL CHRISTMAS and i want to say a big thank you to everyone that did help make that possible.

Audrianna is doing really well in school and she loves going to class and now has 4 Boyfriends according to her lol omg she is only 4 and has 4 b/f's what am i gonna do when she is a teenager?? Kyra is having a bit more mommy time since her sister is in school and Mommy has gone back to work so its a very hectic time around here.This is the first time i have been able to go back to work since Audrianna was diagnosed,its been a MAJOR adjustment for all of us,audri hates being away from me for so many hours of the day and Kyra was just getting me back all to herself and had to give me up again But we are working it out the best we can and doing ok so far.I keep trying to tell the girls its only for 4-5 months and then mommy will be home again till next year since i work in a tax office, but at the age of 2 and 4 they dont understand that.Right now they are either with daddy after he gets off work or with Nana so they are ok till about bedtime and then they get cranky and want mommy, thankfully most nights i can get home in time to put them to sleep and then all is well till morning:)

I am adding a few new pictures of the girls in some really cute hats there Nana Made for them so everyone can see how healthy and happy they both look right now!

Audrianna has been sick for about a month and a half now with a sinus infection that wouldnt end, now she is finishing up her 3rd antibiotic and it looks like it has worked, thank god. Feb 10th she is FINALLY going to be able to get her MIBG Scan to see if the Cancer is still N.E.D. and everytime i think about it i get so sick to my stomach and depressed i just want to sit and cry. My heart and Head are not working together here, one says she is fine and still N.E.D. and the other is Terrified she isnt and they are going to tell us the Cancer is growing again. I am trying to ignore the scared/crazy part of me and go with the sensible she is fine part of me but it is so hard to do, anyone thats ever walked in my shoes will understand what im talking about.When your child is so ill you dont know how they survive it you can handle that because you know what your fighting,you can see it...BUT when Your child is N.E.D. and they look like nothing is wrong with them, you dont know how to handle the Fear because you dont have anything left to fight. Maybe because i have seen other kids who have been N.E.D. and who have looked perfectly fine,hair grown back, weight back, playing with there siblings or cousins and then they say they dont feel well and BAM the cancer is back and spreads really fast and they dont make it....this is my biggest fear, being told it's growing again and there is nothing they can do...its the fear that keeps me from sleeping, its the fear that makes me so overprotective, its the fear that makes me spoil them both so much and never say NO to anything either of them want even if its with my very last dollar, it's that fear that no matter what i do it runs my life...it's that fear that she might not be here tomorrow that teaches EVERY CANCER PARENT TO LIVE FOR TODAY,BECAUSE SOMETIMES TOMORROW DOESN'T COME.

Sometimes the depression is so bad even the pretty little pills the doctor gives you just arent enough but you still smile for your children and everyone else who is watching you and cry on the inside where nobody can see. This is how most cancer parents make it through the day. Everyone is always telling me how strong i am, and how level headed i am and how they dont know how i deal with this as well as i do....My answer is this....I DON"T it's all a Front,every Cancer Parent becomes a Great Actor/Actress..we might look put together to you and to our kids but really we are slowly dying inside because we cant kiss the hurts away from our babies and thats our job as parents.

Please continue to keep Audrianna,Kyra and the rest of our family in your prayers and pray with all you have that her scans are ok. I dont know if any of us can handle bad news, her sister is so attached to her they are like 2 pees in a pod and one would be lost without the other and well i just dont know how id walk through it if i lost either of them.