Exhaustion

Everyday as a mom i get up and take care of my children and hope to god and whoever else is listening that i am doing a good job, but somedays i just feel like a failure.I am tired all the time no matter what i do i cant get over the exhaustion. My Audrianna doesnt sleep for more then 4hrs at a time if im lucky she sleeps that long. And when she does wake up its because she is hungry and wants to eat eat eat or be driven around the block till she falls asleep. Most nights at between 2 and 3 am we are up and stay awake for hours, sometimes she doesnt fall back asleep till 6am and then her sister is awake 2hrs later. These are all symptoms of the cancer, the hospital routine she is used to living,the pain she still has in her belly and her groin from the hernias and her body just trying to recharge itself. I know all this in my head and i know none of this is her fault,but sometimes im just so angry that i cant goto sleep and stay asleep,and somedays the thought of waking up is just to much for me.I know im depressed hell im on medication for that, i think every Cancer Parent in the world is depressed.I try so hard to smile and work past the depression everyday and be a good parent, i even went to the doctor again today and asked for different meds...but i feel like im failing my kids when i dont have the energy to play with them because im so exhausted all i want to do is sleep. Audrianna goes to school 2 1/2 hours a day and Kyra is at home with me but she doesnt take naps anymore but god i wish she did!
Im supposed to go back to work in january and i dont know how im going to do it,if i cant sleep i dont know how i can do taxes and take care of other people's money, what if i make a mistake because im so tired?? Im questioning everything in my life right now and wondering if i can do any of it. I ask everyday please god give me the strength,the wisdom,the courage to carryon.I know my child has gone through more then i ever have or ever will have to and i know my problems are nothing compared to hers but somedays it all just feels like its caving in and i cant breathe.I really need a stress free weekend with no kids and no cancer just to recharge. Blah CANCER SUCKS! People think that once your child is N.E.D the worry stops but it doesnt i actually think it gets worse. Now there is a whole new set of worries,will she stay N.E.D. longer then 3 months this time,will i wake up and she will have a fever that takes us to the Er and someone tells us the cancer is back uugh is her sleeplessness a sign that her cancer is back,is the bloody nose she has had all day today a sign her platelets are low again because the cancer is back....ALL of those things run through your head everyday, it never stops. Just because a doctor tells you that your Child is N.E.D. they arent saying remission, they arent saying cured, they are just saying no evidence of disease for NOW and you drive yourself crazy thinking is NOW going to last??
My family is so distant from each other sometimes i dont know what to do to bring us back together, for the last yr and a half its been me and audrianna, kyra and her nana and poppa john and jim at home working, and i am so resentful of jim because he never had to deal with her sickness he lives in his bubble and if he doesnt admit she is sick she isnt,how does a family survive this?? Kyra grew up so much without me that i worry everyday she is going to resent her sister and hate me as she grows up. Audrianna is so used to having mommy to her self and so spoiled that now that we are home and with her sister everyday she doesnt want to share and i go crazy some days just saying NO dont stop that, NO dont be mean to your sister,I am her mommy too!Sometimes it just gets to be to much and i want to run away, but how do you run away from your sick child and your other child that needs you?? As a MOM you dont, you suck it up and you deal with it even if your dying inside and dont know how to fix it or change it...CANCER tears families apart or pulls them together and sometimes i feel like the *Rip* in ours cant be repaired but yet i keep trying so i dont lose my family. I just wish this was all a dream and id wake up from the nightmare that has been my life for almost 2yrs, that id wake up and my child would never have had cancer and we would never have had to hear those horrible words...YOUR CHILD HAS CANCER...Some of the most devestating words in the english language. Sigh guess i just need to get more sleep and keep pushing on and stop thinking about things that may happen and concentrate on what is happening now.

Sorrow and Happiness

This has been a very long emotional roller coaster of a month. My husband lost his job and audrianna's main source of insurance,then his unemployment got denied! So right now we have no income and have used most of Audrianna's savings account to pay the bills for the last 2 months so we didnt end up in the street,sigh. I worry everyday how i am going to keep a roof over my kids head, food in there mouths,and keep all the utilities on PLUS christmas is coming:( Why do things like this always happen around the holidays??Halloween is what 3 weeks away and the girls wants costumes i cant afford and momma cannot sew lmao me and sewing machines do NOT get along so we will be finding things in there closets to make homemade costumes this year no biggie. But hubs always had a xmas bonus we used to pay for xmas presents and now that he was fired he lost that too BLAh i know for adults xmas isnt a big deal but for a 2 and 4yr old it sure is,but whateve4r ill figure it out i always do...super mom to the rescue.
We lost 2 of our dear friends to Cancer this month, first Tim Martin a friend to every person he ever met passed away from esophical cancer and less then 2 weeks later we lost Dear Princess Emily who was only 4yrs old and one of *OUR KIDS* from our hospital and one of Audrianna's best friends. Nobody should ever have to bury there child and my heart is still breaking for Janet,i dont know how she is standing upright because i dont think i would be:( Emily's viewing was one of the hardest things i think i have ever had to do in my life,i was ok untill i saw her and kissed her goodbye,then i went outside and threw up because i just couldnt handle it and im not even her Mom,just her loving *aunt* More people need to know about OUR KIDS and More people need to fight this HORRIBLE DISEASE CALLED CANCER,dammit we need more funding for pediatric cancer so maybe they can work on finding a cure and no more mothers will bury there children!!!!This was the sorrow we felt this month and my beautiful 4yr old made herself feel better about Emmie by telling me...*It's ok Mommy My Angel Kelly is in Heaven and she will take Emily's Hand and show her around so she isnt scared* that was the saddest of all for me, i cried and cried that my baby even had to know what death was let alone be so damn wise about it! Any Cancer Parent can tell you our kids grow up way to fast and they are really Old Souls in babies bodies and it is so depressing because really all we want for them is to be kids and never have to think about Cancer or death again.
Our Good News and Happiness is overshadowed by the sorrow because we feel guilty that our baby is ok when someone elses child isnt:( BUT Audrianna is in remission and she is going to have one last surgery for a hernia reduction and then have her broviac/Port taken out.When i told her she asked me if she could have an I KICKED CANCERS BUTT PARTY lol i said yes and then had to think omg how will i pay for that!!!!! So even though we had the best news a cancer parent could ever ask for there is still worry and pain to go with it.Last time she was in remission it lasted 3 1/2months and the cancer came back,im terrified to let myself be happy about the remission because i feel if i do she will get sick again...stupid huh? Well welcome to being a cancer mom because all those stupid thoughts hit you over and over, along with the what ifs, what if i did this or what if i did that?What if i hadnt dont this or what if i had done that, all those things that will drive you crazy if you let them.
Oh well off to get Audrianna off the bus and try to think happy thoughts!

Bad Day for Mommy

Some days its just really hard to be a mom and thats for any mom not just me. BUT when your a mom with a sick child and a healthy child who is always fighting for attention because the sick child gets alot and they want what she has, some days its so hard to just not sit down wherever you are and just cry and never be able to stop.Audrianna is so spoiled from being sick because its just been her and me for so long that now she doesnt want to share me with her sister and poor Kyra has been left behind for so long that all she wants is the same amount of attention from mommy that her sister gets and its really hard to have them fighting all the time and not lose my mind.AND its really hard when ppl get mad at me because i give into audrianna when she cries just so i can stop her from crying or because i cant handle the tears anymore,but nobody else has to live in my shoes and nobody else has to deal with it day in and day out everyday. I feel like i cant take my children anywhere sometimes without people looking down on me because of how they behave and im always being told NOT TO SPOIL THEM but omg my child has Cancer, which may or may not be terminal how do i not spoil her?? What if tomorrow she isnt here and all i can think of is the things i didnt give her? And i know i spoil Kyra too because i dont want her to be left out and uugggh sorry its just been a rough day.Can my kids be bad...YESSSSSSSSS....But are they 2 and 4...YESSSSSSSSSSSS....is it there job to be whiny and cranky and spoiled and fight with each other...YESSSSSSSSSS...so why cant everyone just realize that and leave me alone??I dont take them alot of places by myself because its to hard to cut myself in 2 trying to hold them both and take care of them both when they are whining and because i get tired of everyone looking at me like im a bad mom. I try so hard to be a good mom and give them both all the things i never had and some days it would just be nice to be appreciated and hear someone say, Hey Your a Good Mom and have them mean it. All i have done for hours now is cry over every little thing because i cant seem to pull myself up out of the depression that has hit me today and i cant stop thinking of all the things im constantly told i do wrong or i need to do different when i think im a good mom and im doing the best i can with the circumstances that have been dealt.BLAH sorry for this long crappy post but i needed to vent somewhere and since i dont have anyone to talk to this is where i put all the emotion nobody cares to listen to. Sigh im gonna log off now before everyone that does read my blog stops because they dont want to read this kind of crap.You all want to know how Audrianna is doing and hear happy thoughts so here it is...she is doing great after a rough start for school today the day went well...just to let ya all know:)

Eventful Month

Ok sorry i haven't updated the blog in a while but its been a very busy and hectic month for us.Audrianna has had a whole month off from being in the hospital so we have been running running running to do things she wants to do.We went to Oncology Night at the Philadelphia Zoo and got to see some of the wonderful people that we met when we were in CHOP getting her stem cell transplants. Audri and Kyra loved the animals and had a great time, MOMMY loved seeing them smile and being with the other wonderful families that we now call *Family* again and seeing all our kids doing well.After that fun filled even we went to Sesame Place and the girls got to meet Abby Caddaby and Elmo, our dear friend Marietta sent us in a LIMO so that we wouldnt have to worry about driving there and back with 2little kids and fighting the traffic in Philadelphia.Audrianna and Kyra LOVED Sesame Place and we had the best day...we love you Marietta and thank you so much for making my girls so darn happy!! Then we had an awesome Fundraiser in Ronkonkoma NY that was hosted by our dear friend Gwen Cardaci and she managed to get her friend Aaron Carter to come out!!!!!!! Audrianna and her sister Both Love Aaron to pieces and he is now *Uncle Aaron* because to them he isnt someone Famous he is just a great guy who came out and sang and played on the floor with them with there coloring books:) We Love You Gwen and Aaron and thank You so much for making my family so happy, because believe me Happy isnt something we have had alot of since Audrianna was diagnosed with this Horrible Disease.After our Awesome day we drove into New Jersey and along the way got lost in Manhattan lol it was pouring rain and we couldnt see i n front of us but after we passed times square 3 times we finally found our way...YAY....gotta laugh about it because it was just one of those memories you wont forget. We spent the next day in the rain on the pier in Point Pleasant NJ and the girls got to goto the aquarium and ride all the rides(with a free pass we got from Give Kids The World when we stayed there for audri's Make-A-Wish) and even though it rained and it could have been a cranky miserable day...we just laughed it off and made the best of it and had a good time. THANKFULLY we drove home that night because the next morning my truck wouldnt start uughh the fuel pump went and cost us $500 to fix BUT again it could have been worse we could have been stranded in NJ and waiting for it to be fixed at a garage there, so we were just glad to be home when it happened.TODAY Audrianna started Pre-K which for Our Family is a HUGE Milestone considering when she was diagnosed in April of 2009 we were told she might not make it to her 3rd bday which was a month away and now she has made it to 4 and been cleared by her docs to start school...thank you god....she loved her bus driver and her teacher but she wasnt so sure about school till her *Boyfriend* Nathan sat down next to her and told her not to cry he would show her that school was ok....Thank God for the sincerity of 4yr olds and thank You so much Nathan we love you *Dawg*...Right now we are just trying to be a *Normal* family for as long as we can. In September the week of the 7th audrianna will be going through all her testing/scans to see if the tumor they found 6mnths ago is gone or not, but for now she looks good, feels good and we are just taking it one day at a time. If CANCER has taught us anything it's that You need to Live for today and LIVE LIKE YOU WERE DYING because you never know if tomorrow you will be. I just wanted to Thank everyone for all there love,support,prayers and ask you all to keep praying for Audrianna and hope to god we here the words N.E.D(no evidence of Disease) when she gets her new scans in september. BUT as a NB Family we know that even if you are N.E.D. today doesnt mean you can breathe easy because it can always sneak up on you and come back, BUT you take N.E.D. for as long as you can and you take one step/one fight at a time.We love you all...Goodnight!

Friends who become Family

Along the way in this journey that our family has taken we have met alot of wonderful people.I tell people all that time that before this experience it Thought i had friends, but now i know i have FAMILY.Alot of the friends i thought i would have forever and throughout my kids lives we lost when audrianna got sick and believe me we have heard every exscuse under the sun,from *it hurts us to see her like that* We dont know how to explain why she is bald to our children*It's just to painful for us to watch her suffer* and so on and so on.BUT then there are people that i hadnt talked to in 20yrs that saw my daughters story on facebook and went out of there way to contact me, help us with fundraising and things like that, people from high school that i had lost touch with and now because of my beautiful daughters fight they are back in my life and i am thankful. BUT most of all there is Our new *HOSPITAL FAMILY* All the people/children/moms/dads/siblings you meet along the way, and believe me they are now my best friends and definately my family.I have met so many wonderful moms and dads with there beautful children fighting horrible diseases and without there love and support i dont think id have made it through this last yr and a half.They give me the most Joy and the Most sorrow along the way,Joy when something GREAT happens such as one of *our* kids goes N.E.D and sorrow when we lose one of*our*kids to this nasty horrible disease called Cancer, or HLH,or Auto-Immune disease or Crohns or any of the other Horrible dibilitaing diseases our babies have. I just wanted to tell ALL of my friends/family that i love and appreciate you all so much!!! My Mom and my Stepdad John have been ROCKS through all of this, i never could have made it without them. Tracy from my daughters daycare who has medical problems of her own but puts them aside everyday to help others and who stepped up to help me when we needed it most. Michelle who has been there for me every step of the way...Dena my best friend and partner in crime always lol who is also Audrianna's godmother and does everything she can to make her happy and help keep her healthy.Gail Wright who kept me sane many a night when BOTH of our babies we fighting Neuroblastoma together,Janet Donovan who is fighting her own fight with our precious Emily's brain cancer who keeps me grounded,Caroline Dohrman who lost her precious boy to Neuroblastoma and is the STRONGEST Person i know because she walks back into that hospital to visit and she smiles and brings a smile to my baby's face even when being there has to make her sad:( Becky Blair who was the first NB mom i ever met and who shared her precious LULU with me and showed me that NB can be beaten, Reanne Waters whose precious Madacyn is fighting A.L.L. and who worries as much as i do so i dont think im crazy!!!Tara Kachurka whose baby emalee has NB and is undergoing stem cell transplant as we speak,Tisha whose son Karson has NB and we love so much, Jessica whose daughter Sophia has A.L.L and is undergoing a BMT right now, Jess whose Beautiful Daughter Kelsey has A.L.L and is heading to C.H.O.P for a BMT,these are the moms from Audrianna's Hospital and i love them all SOOOO MUCH And then we have our C.H.O.P. family who helped us through the ROUGHEST TIME in audrianna's treatment her stem cell transplants...(((LEE))) I LOVE YOU LIKE A SISTER(((Marti))) Your one of the best friends i ever had and i am so glad Macey is N.E.D.(((Rebecca))) I am so glad Jack is N.E.D.(((Shana)))i am over the moon that the BMT took and Maya is doing well(((Mandy and Bonita)))My sisters from another mother lol i am so glad Jess is doing great!((Ed))i am thrilled Maks is doing well(((Carol)))You kiss my Saniya for me i love You Both!(((Sledzinski Family)))Your Kelly was our inspiration and now she is our guardian Angel, Thank You for sharing her with us and thank You all for continuing to be a part of audrianna's Life!!! The picture im sharing on this post is Audrianna and Caine*Bubba*Wright her BFF for life who fought the fight of NB with her and who is now in Remission xoxoxo we love you Bubba!!

Stressfull week

This has been a very stressfull week in our house. Audrianna is alot of work by herself with the line care and the medicine and then add in a sick 2yr old and UUGGHHHHHHHHHHHHHHHHHH! Oh and did i say UUUUGGGGGGGGGGGGGGGGHHHHHHHHHHH? Also we have the worry for Audri and Kyra's Poppy who is in Manhattan at the VA Hospital and just had Major surgery to remove an aneurism off his Aorta in his tummy:( Poppy is in ICU right now and will remain there for a few days and then have at least 2 weeks of recovery time and he is very far from home and alone so please everyone keep him in your prayers:(....Thankfully today Kyra seems to be feeling better and we got to go out of the house and meet some nice people. Ellen at The Cyber Calf Restaurant was very sweet to the girls today and made sure they both got cream of broccoli soup and she humored Audrianna when she decided she didnt like turkey and wanted ham on her sandwich instead! Mike and Tony from Wazl came and met Audrianna and had her sign some of her Audrianna Bracelets for them with her initials! She was thrilled someone wanted her autograph lol it was really cute and it made her day. The Cyber Calf is selling Audrianna's Bracelets and her Vinyl Window stickers all you have to do is stop in and ask for them if you live locally. After the cafe we went to Nana's House for a bit, then we went to the Bizarre in the heights and let the girls play a few games, eat some food and dance. Once we left there we picked up Daddy from work, went to Bonanza for dinner with our favorite waitress there Rhonda and had a nice talk with an old friend Bernadette:) So the night ended on a better note then the day started THANK GOD. Going to put the girls to sleep right now and have them pray for poppy's speedy recovery...Night all!

Been a While

Hi Everyone,
I know i havent posted in a while but its been a very busy summer for us so far. Audrianna is doing very well right now, she completed her last round of chemo 2 weeks ago and we have been hitting the amusement parks since then!!!! The first week of september we will be getting new scans to find out if the tumor they found 6 months ago is gone or if its still growing. Audrianna's doctors are very optimistic and we are all hoping to here the words N.E.D.(no evidence of disease). It's very hard for me as a mom to get my hopes up because it seems like everytime that i do there is more bad news, so right now we are just living for today and hoping that tomorrow is as bright as right now.Audrianna is going to start Pre-school on August 25th which is a HUGE step for our whole family especially considering when she was diagnosed we didnt know if she would make it a month to her 3rd bday so this is an awesome Milestone!!!!! I want to thank all of you that pray for her daily and to everyone out there that has supported our family through all of this, Your love and support has helped keep us going. On a sad note another beautiful little girl named Katie passed away today from this Horrible disease called Neuroblastoma and our hearts, thoughts and prayers are with her family right now:(http://ourturkey.blogspot.com/ please pray that her parents and little sister can make it through this:(
I am thankful everyday that Audrianna seems to be getting better but omg the fear of relapse is never and i mean NEVER far from the front of your mind when your child has cancer:( I am including a picture of Audrianna and 2 of her beautiful friends from the Hospital. Karson is 18months and has Neuroblastoma like Audrianna and Sophia is 1yr old and has A.L.L Leukemia...these are Audrianna's Babies as she calls them lol!!!!
On a brighter note i added pictures of the Team Audrianna Bracelet and Vinyl Window sticker here and you can just click the paypal button to pay for them to make everyones life easier!
Thank You.....Angela aka Audrianna and Kyra's Mommy