Good day with family

Audrianna's night didnt go so well with all the pain from the chemo but she has had a good morning so far,her cousins came to visit this morning.Our family is so spread out that we dont get to see alot of them and abby and tyler live in virginia beach with there mom,stepdad and new baby brother Abram.Today Audrianna and I got to see all of them and hold the new baby, she was thrilled to hold a new baby and play with her cousins.Today for 2hours she was a normal kid, playing ball in the hallway and coloring with Abby and Tyler.Tyler was being goofy just to make her laugh and hearing her laugh again gives me hope.The resiliance of a child is amazing,her body is in pain but her spirit is not.I cried in the bathroom where she couldnt see me while she was laughing and playing with her cousins, i cried with grief and joy,joy that she was so happy and grief that this laughter might be something that is going to be so far apart.She is so tired after playing and with the chemo running but she is fighting it because she knows other people are coming to visit her today.She also doesnt want to drink and has developed a bad cough that the doctors are watching:( But at least for 2hours she got to dance and laugh!

Bad Night

Audrianna had a very bad night the chemo she is recieving right now is very harsh and the pain in her belly was very bad.She is on a Dylaudid Pain Pump and it still wasnt helping her, the doctors say the pain she is having is Like when a diabetic has Neuropathy in there feet except its all over her body and 100 times worse:( I have Neuropathy from my diabetes and i know how bad i hurt so i cant even imagine the pain my baby is going through right now:( Today they have upped her pca so that her dose of Dylaudid is double what she was getting last night and it seems to be helping some but she is still complaining about the belly pain. The doctors still havent decided what course of treatment they are going to use to fight these 2 new tumors, they are consulting the Childrens Hospital of Philadelphia where Audrianna recieved her stem cell transplants and the Childrens Oncology Group to see which is the best course of action for her.One of our Docs is very blunt and always give you the news straight forward and told us yesterday that since she already underwent 2 stem cell transplants if the MIBG Therapy didnt work then we would be taking her home to let her be a kid for as long as she could before she got to sick to play with her sister:( I am hoping and praying that this doesnt happen and this therapy works for her. I dont know how to do this, i dont know how to start preparing myself that this might be the end so im going to keep looking forward and not think that way because she is a Fighter, she fought so hard to get here she can fight to kick it again. As her mom Im TERRIFIED that i may lose my child but i also know that i cant let her or her sister see that and i have to smile and go on with life because thats what she needs from me. No matter how upset i am this is about my girls not about me. I will try and update more later i need to get back to the room and sit with her during her chemo, thank you all for your kind words and prayers we love you!

Sad day

Sadly we were told by the doctors today that Audrianna has relapsed.The MIBG scan showed 2 new tumors, one wrapped around her vena cava and one in her liver.They arent sure if surgery is an option to remove them or not. Right now they are keeping her on her Protocol and running the ILP chemo and hoping since the tumors are small that it might kill them. If this doesnt work we will be going back to CHOP for MIBG Therapy and if that doesnt work we will be going home to let her be a child for as long as she has left on this earth. I am trying so hard to be optimistic and hopeful but its really hard for me right now. Everytime i look at her i think but she looks so happy, she has hair, how can there be something else threatening her life again!!!! And then i think F*ck you Neuroblastoma you rotten B*stard grrrrr stay away from my child. My child is supposed to grow up and find a cure for cancer you cant take her now.I am praying very hard to audri's angels up in heaven to watch out for her...Kelly, Tanner,Hudson,Ashley please make sure you watch over her for me,whether it be here on earth or in heaven i need to know you are taking care of her.I need to get back to her right now but i will post more later and let everyone know her progress:(

MIBG SCAN Not the News we wanted

You would never know by looking at my child, other then the semi-bald head that she isnt healthy but today we were told she has spots on her liver which could mean the cancer is back.This is every parents worst nightmare, relapse. We were told there was a 90 percent chance she was in remission because her last 2 CT scans were clear and not to worry about the MIBG because if the CT is clear the MIBG is usually clear and she would be in remission. YEAH RIGHT!!! As an NB Mom or any Mom of a child with a life threatening disease You NEVER stop thinking in the back of your head that things can come crashing down in an instant. Today we were expecting to hear N.E.D. and instead we heard Liver Lesions(or howerver you spell it) and in an instant everything changed, all the Fear of the last year came rushing back and when i looked at my child, just for a minute i lost the faith that has been keeping me standing. I lost the faith to believe that this was NOTHING that just because there is a spot doesnt mean its Cancer, I lost the faith to believe that God is going to get her through this and i was SO DAMN ANGRY AT GOD FOR NOT KEEPING HER SAFE!!!! Uggh i know that this horrible disease is not anyones fault it's just something that happens, but that is so much easier to rationalize when its not Your Child!!! I cant let my baby see me cry because then she worries and im supposed to be strong for her, but it is so hard to be strong all the time. We have so many friends and family praying for her and pulling for her that she just has to beat this is what i tell myself, that with so many prayers how can god not hear us and heal her?? And yet while im having those thoughts i also think about all the NB Angel's god has given wings in the last year, and then i try not to crumble all over again. I know every child is different and every case is diferent, logically i know that, but my heart and my head are so not working together right now. My heart is terrified that i will lose her, my head says dont worry she will be fine, which one do i listen to?? I wish someone out there could help me understand why this nasty disease called Cancer is in our world AND why if children are innocent and without sin do they get cancer and die?? Ok i guess i need to stop feeling sorry for myself and realize my child is healthy today and this could be nothing and start doing something to make myself feel better....thank you all for your prayers:) I am attaching a picture of Audrianna and one of her best friends Emily Donovan who had her last chemo yesterday and also needs prayers to make sure her MRI comes back clear next month!!!!

Good News

Today was a very long day driving to Geisinger for the injection for Audrianna's MIBG Scan which she gets tomorrow. I had to Hunt down and Badger Dr Taylor but i finally got him to show me the CT Scan and tell me that there were no known signs of Neuroblastoma on the scan!!! Tomorrow is the big day we have the MIBG and the Bone Marrow tests to see if she is clear. Please god let her be clear, its almost a year and its time for her to be a healthy little girl again. I am so sick to my stomach thinking about tomorrow, just because the CT came back clear doesnt mean the MIBG will and it scares me to death that i may have gotten my hopes up for nothing. And i also know that just because she is clear now doesnt mean she will stay that way forever because Neuroblatoma is a tricky bastard and it hides and then our babies can relapse:( BUT god willing that will NOT HAPPEN to my child.Audrianna has alot of Angels up there watching out for her. Tanner, Hudson, Kelly,Ashley,Layla,Sophie, they will all make sure she pulls through this and continues to make the world a better place with her smile. My heart goes out to all the parents that have had there babies become Angels, i cant say i know what they feel everyday, but i can say i understand the fear they must have felt along the way:(
Ok i am going to goto bed now since tomorrow is going to be a very very very long day. I will post as soon as we know any results and thank you again for all your thoughts and prayers! Love Audrianna and Kyras Mommy:)

Mommy Day

Today was a very relaxing day for mommmy. Both the girls went to Poppy and Grannys house and mommy got to clean up and rearrange the furniture finally! Then i went shopping with my girlfriend michele and her daughter and out to eat without a child crying mommy get this for me or mommy she spilled my milk or mommy can i eat your food!! LOL i LOVE my girls more then anything in the world but every once in a while everyone needs a mommy break.By the time i came home the girls were asleep because poppy dropped them off to daddy and he put them to bed.I NEVER miss bedtime so i was a little sad about not kissing them goodnight but on the other hand it was very nice to just come home and sit down, watch tv, go on Facebook, check my email and do the blog without anyone crying.Tomorrow is Kyra's daycare day so we will be up and out of the house early to drop her off and then Audrianna and i will find something to do together till its time to pick sissy up. Kyra goes to daycare twice a week when we arent at the hospital just so she can stay in her routine for the times we are at the hospital.Kyra loves her daycare and all her friends and she waves by to me when she gets there and is happy to be with her friends till i come back which i am thankful for everyday. One of my friends owns the daycare and she is a WONDERFUL WOMAN (Love ya Tracy)who took my kyra free of charge because she knew we couldnt afford to pay and that Kyra needed some type of structure in her poor little life.It's people like Tracy and all the othe *Angels* in our lives that have given me back the faith i had lost in the world, they made me believe there are still good people out there. Anyway time for Mommy to get some rest night all:)

Easter egg hunt and Easter Bunny

Last year for Easter we were in the hospital being diagnosed with Neuroblastoma and my daughter cried not because she was sick but because she was afraid the bunny wouldnt be able to find her! This year for Easter we are waiting for results to tell us if she is N.E.D. AND she got to goto an Easter Egg Hun and Meet the Easter Bunny!!!!! What a difference a Year makes and i am so thankful to the powers that be for letting her have this experience today, for giving her quality of life this Easter so that she could meet the bunny. It's funny because we are going into the hospital on the 29th of march to start the immunotherapy and we will be home 2 days before Easter and again all she was worried about was missing the bunny lol but i had to promise her we would be home and get to spend it with her sister this year....SO GOD....NO SURPRISES....Dont make me have to break that promise or ima get medieval on your Arse!!!!!!
Ok now that im totally exhausted after a very long fun filled day with my girls and some awesome friends its time to call it a night!

Waiting Sucks!!!!

Well we waited all day for the Doctor to call us and NOthing not a damn word grrrrrrrrrrrrrr.The worst part of this Horrible nasty god forsaken disease is the waiting. Waiting to know if the biopsy came back as cancer, waiting to know if the chemo is working, waiting to know if the 8hr surgery for the tumor disection worked,waiting to see if the stem cell transplants worked,waiting waiting waiting grrrrrrrrrr. It seems like in the last year ALL we have done is wait!I am so sick of waiting i could screammmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm! I just want to know if my baby is Better,I just want to be able to say to her YOU DID IT, YOU BEAT CANCER!! Dammit i don't want to wait anymore and now i have to wait till Monday, sigh. I know that just because they tell us she is N.E.D. doesnt mean she is out of the woods, it doesnt mean it cant come back, BUT it does mean its gone for NOW and now is all we can ask for. In the world of pediatric cancer, or any life threatening pediatric disease for that matter all we can do is live for the NOW and never take anything for granted. If you child feels good that day, you feel good that day.What i learned through this Journey is live for today because tomorrow may not come and maybe thats why the waiting drives me so crazy, what if im so busy waiting that i miss something important in her life! Ughh im in a really bad, scared, cranky mood and maybe i just need to take my pissy ass to bed! Night all xoxo thanks for keeping up with us!

Fundraiser for Audrianna

Today one of the *Angel's* we have met along the way during Audrianna's Journey let us know that she designed a dress and there will also be a matching tote for Audrianna and she is going to do an Online Fundraiser for her!!! People like Robbin Kizer from One Child Too Many, Heather Liley from Pick Your Pocket Studio,Amy from LC Creations,Pam from if the bow fits,Kim from the Blanket fairy, They have all given me back the belief that there are good People in this world still.I just wanted to say THANK YOU to each and every one of them and all the other people out there that have helped my baby through this journey.Sometimes the smallest things can make a child smile and thats all it takes to make everyone around them feel good. My daughter didnt have alot to smile about in the last year but she did it anyway and now thanks to all these beautiful people she has alot to smile about. Audrianna is waiting for the Mailman everyday, she cant wait to get her beautiful hats, bows and dresses, AGAIN thank you all. And ROBBIN a special thank you to you for helping us financially when we had to stay in a hotel away from home for 4 weeks and couldnt afford to do it on our own, your foundation which is new and doesnt have alot of money yet, still managed to help us and we love you for it!!!!
Ok i guess im done being sappy and here are the details of Audrianna's fundraiser and the link to her BEAUTIFUL DRESS!!!


Heather Lilley from Pick Your Pocket Studio Is doing a Fundraiser for Audrianna and the dress she has made is ready so they can start taking orders now! $10 from each dress will be donated towards Audrianna's medical expenses. If you would like to order your very own dress, please visit her website. Shipping time is about 3 weeks, but should get shorter as they have taken on a 3rd seamstress. Thanks!(I cant seem to get the hyper link to work so you can click it so please just copy and paste it to your browser to see the dress) http://pickyourpocketstudio.com/audrianna-p-111.html

Day at the Hospital

So today was a very long stressfull day. We had to be at the hospital by 10am and we didnt leave the hospital till almost 5pm. Audrianna couldnt eat all day because she was going to be sedated at 3pm for a Cat Scan soooooo needless to say she was very miserable because she wanted food.Mommy and Daddy couldnt eat either because its just RUDE to eat in front of your child that cant have anything even if Your starving and you have diabtes and are supposed to eat every few hours.So by the time we left the hospital we were all starving and cranky but we went to Audrianna's favorite chinese buffet and she had the Hibatchi guy cook shrimp with brown sauce for her and then everyone was happy!! Now we WAIT for the results of the CT to see if they find anymore tumors(god please dont let that happen) or if they see nothing at all!! Then Next week we have the MIBG Scan and if both are clear she will be N.E.D.(no evidence of disease).Then we are having the biggest bday party for her in May and its going to be a bday/I kicked cancers Ass party!!!!!!!!!!! So everyone please keep your fingers crossed and your prayers coming that my beautiful little girl comes through this horrible disease on the Good side and we can have one more Warrior not one more Angel gettin her wings:)

Sisterly Love

Audrianna is a a Great big Sister! Her little sister Kyra just turned 2 on march 7th and they are the best of friends.Whenever we have to go away to the hospital Audrianna asks for Kyra everyday so we have to call her and go on webcam so they can see each other. Kyra wakes up every morning and says Where's Audri. They are 22 months apart and people ask me all the time if they are twins because Kyra is the same size(and have to be dressed exactly alike or it causes HUGE fights) as Audrianna now since her sister hasnt really grown very much in the last year.We are going to be heading back to the Hospital on March 29th for a week for Audrianna's first dose of the ILP Therapy which is a 5 days infusion of medicine and i worry how us leaving is going to affect poor Kyra yet again.Everyone puts all there attention on the child that's sick and we tend to forget the ones that get left behind. I worry everyday that Kyra will grow up to resent her sister and me, but i also pray to god that since she is so small she won't remember much of this!I hope that everyone that Prays for Audrianna to get well will also Pray for her sister to come through this without scars.

Audrianna's Journey

My Daughter Audrianna who is 3 1/2 yrs old, she was diagnosed with Stage IV High Risk Mync Amplified Neuroblastoma on April 8th 2009 which was 1 month before her 3rd Birthday.Audrianna had a tumor that took up 90% of her stomach and was wrapped around her vena cava and had metastisized into her lungs, liver, kindneys and bones. Lets just say her doctors told us her diagnosis was not good and that we had a very tough fight on our hands. Since she was diagnosed she has undergone 6 rounds of chemo and surgery to remove her turmor.The chemo managed to get rid of all the spots she had in her organs and the only thing other then the tumor she ended up losing was her left adrenal gland which she can live without. After her surgery she underwent 2 stem cell transplants because thats what her protocol called for.She just finished 4 weeks of radiation and now we are waiting 2 weeks before we go back for her MIBG Scan and Her CT scan to see if she is N.E.D. Then at the end of the month we start acutane,immunotherapy and ILP.Audrianna still has about another 6 months of treatment even if she N.E.D(no evidence of disease)One of the side effects of the chemo was hearing loss, not total hearing loss just her high frequencies, my husband was very bothered by this but as far as im concerned wearing a hearing aide and being alive is Great!I am telling her story so that other parents out there can see that no matter how bad it looks when your child is diagnosed with cancer the future can be brighter and you should never give up Hope.

Angela aka Audrianna's Mommy