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.

Better Frame of Mind

First off let me say thank you to everyone who posted on my last blog. I was very upset and angry about everything that day and thanks to ALL of you i have decided your right and im not going to let negative people upset me or make me stop doing things for my beautiful daughter. I also want to thank everyone who has donated things for Christmas and for those that wanted to. I am not going to put the list back up, not because of the negativity BUT because we have had a few people offer to help and i dont want to take away from other children in need, children who need things more then my girls do. My girls have LOVE and no matter what, they will not want for anything on Christmas or any other day of the year because THEY ARE LOVED!!! We have been pretty busy since the last blog, we are still planning Audrianna's fundraiser on Dec 9th @ That Bounce Place in Edwardsville, Pa from 3-9pm and its coming along very nicely..we have Santa coming, a photographer to take pictures of the kids, a bake sale and a basket raffle for the adults and a few vendors coming to setup tables and make a donation to Audrianna.Between getting ready for that and Audrianna gettin to all her appointments and going to school its been very busy.We have also done some fun activities such as going to the Majestic Theater in Pottsville to see a tribute to disney and the girls had a great time with there dear friend Reiley who played Belle.This weekend we went to Wilkes-Barre and spent time with some of our *Oncology Family* seeing santa clause and just have an all around great time. The girls got to play with there 3 adopted Aunties, Annette, Jennifer and Dari. Dari also took some beautiful pictures of them which for a mom with a child with an Illness of any sort, pictures that capture your child happy are worth more then a million dollars in the bank. Money can be spent and its gone, pictures hang on the wall forever, even if you lose that child, you always have that wonderful memory and there beautiful face captured forever in a state of happiness to help take away some of the sorrow.
We have been invited to another cookies for cancer event on the 4th of december in pittston so we will be there god willing and having fun.SANTA is coming to our house on Dec 11th on his sleigh for the girls and they are so excited. December 17th we get to meet Nellie from Nellie's Catwalk a wonderful cancer organization in ohio that is helping the girls with a few of the Bigger things they wanted for christmas.And then Christmas will be here and we will be celebrating the fact that Audrianna is HOME and having Christmas with Her family this year and we will also have our cake for Baby Jesus's Birthday because i like to make sure the girls know what christmas is all about, its not about the toys you get, its about Giving and Love. I know that with the love of my family and friends and all the people here and on FaceBook that Love My Daughter, we can get through anything.<3

Why do people hate??

It is a sad day when people start attacking the parents of a young child battling any type of disease because they are upset over the fact that her parents do fundraiser to help with medical costs and expenses.Because of these people and the fact that im tired of being accused of *using* my child to get things/money from people i have deleted the girls christmas wish list that so many of you asked me to post.I know the economy is hard on everyone right now and i know alot of people are worse off then we are and really if people didnt want to help they wouldnt have offered BUT i will find a way to help my children without having to be accused of anything from here on out.Yes we have had fundraisers for Audrianna just like every other family with a sick child has.What people dont understand is that there are so many other expenses other then insurance related ones when you have a sick child and life doesnt stop, the bills keep coming,just because you cant work because you have to stay home and take care of your child doesnt mean the rest of the world stops turning. There are gas expenses(which thank god now we have help with),food expenses,toys to make your child stop crying because you would give them anything to make them hurt less, Hotels,all things not convered by any type of insurance that you still have to pay.Where do people think this money comes from if not from fundraisers?? Audrianna spent 4 months in philly undergoing tandem stem cell transplants, that was 4 months we werent at home, 4 months we had to eat somewhere other then our house, gas back and forth to philly for my husband and all these things add up, its not like we have thousands of dollars in the bank or drive a fancy car or even a new car, we have a beater car for hubs work, and a 7yr old truck that i have put 50,000 miles on in 2yrs driving back and forth to treatments for my sick child!!!!I wish to god i could say this was a nightmare and we woke up and she had never been sick and our lives were normal(whatever that means)again, but unfortunately i cant and i really wish people would leave us alone. We are only trying to survive and provide for our child and our family the best we can.I am sitting here seriously thinking of deleting Audrianna's Wish page because of all this and i really wanted to convert it to a non-profit as soon as i could raise the funds to do that so i could start helping other families like ours,but i dont know, im so depressed and sad that people are really posting evil things on her fundraiser page:( I did not ask for this fundraiser, a very nice family that follows audrianna on her wish page and has met her numerous times and held a fundraiser for her once before asked me if they could hold another one for her.I love Larry and Katie and i was thrilled when they asked if they could once again sponsor audrianna because they love her, i dont know why this has to be such a problem for other people,really is it jealousy or are they just that sad? I have helped many people on audri's wish page, i am forever posting things for other children and other families and nobody says anything about that, BUT let me post a fundraiser for my own child and im being GREEDY and EXPLOITING my child for money...wtf that's just so wrong. My family will have a great christmas do you want to know why...BECAUSE WE WILL BE TOGETHER AND OUR DAUGHTER IS ALIVE,SOMETHING WE WERE TOLD ALMOST 2YRS AGO THAT SHE WOULDNT BE....so even if there are only a few things under the tree and a cake for baby jesus, my kids and i will be happy. Now for all of you that are so unhappy in your own lives that you have to attack us and belittle us do me a favor....GO AWAY AND GROW UP.

FIELD TRIP AND HALLOWEEN COSTUMES

Audrianna had another milestone today, her first field trip in school!!! Again this is something we never thought would happen and it was the BEST DAY EVER! I took some pictures so that i could share with all of you and i also have pictures of them in the halloween costumes there dear friend Jamie bought for them and the Ming Ming Costume there Nana bought Kyra. I would love to thank each and everyone of you for all your prayers and support through all of this...Much Love....The Bartol Family

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:)