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!!!!!!!!!!