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!