A fever by any other name.....

Wow, its been a month since I blogged last?? That can't be right. I have so much stuff in my head that I guess I thought I wrote it down.  Apparently not.  Maybe that is why my stress level as seemed to escalate in the past few weeks.  When I blog, whatever is floating in my head comes out on paper, its not gone, but it sure does feel better to expel the demons.  So I don't quite recall where we left off on the Weber bad luck streak, as it seems to escalate more and more with the passing days!  Plus I wish FB would chronicle everything in a nice cloud environment so I can keep track of our daily "incidents" so I can transfer those stories here.  Even amongst all the chaos, we still have plenty of hilarious incidents.  Lucy is definitely keeping us on our toes.  That child has done every conceivable thing that I didn't think I would ever have to worry about as a parent!! Her level of mischievousness and orneriness outplays and outlasts Dennis the Menace any day of the week!
We have had the following happen in the past few months alone:  She has taken her hand print and left it as a keep sake on our window sills with marker, she has painted one bathroom with toothpaste, the other with butt paste (yep you read that right), she found her birthday present (tea set) and had it laid out along with frozen fruit and all my chocolates while it was a Sunday nap and the rest of us were..well..napping.  She found a dead mouse in her fan, we are assuming he was in her room because later we found food stashed under her pillow (again).  We most recently found toilet paper all over...I mean rolls and rolls of it.  Come to find out, they needed the tubes so they could play pirates. Yes, both of my children, but it was Lucy's idea to just take the TP off and hide it.  She has taken my scissors, and as I found them in the kids' room, she has yet to fess up as to what they used them for.  I'm sure we will find out soon enough.  She has taken lotion, hand sanitizer, and make up from my bathroom and not only used it ALL but filled it up with water to make sure it lasted longer.  She has nearly choked Taco to death by putting boas around his neck and making him play house with her.  She took approx 100 tiny dixie cups from our cupboard and stacked them up to where they covered her ENTIRE room!!! And some were filled with water.  And mind you, she is quick like Flash!! She can do these things like a ninja (or inja) as she calls it.  I have to admit, she makes me laugh.  She's a stink....but makes me laugh.
So back to the rest of the Webers.  Zach had another surgery and it looks as if it took this time!!! yay!! He no longer drools out of the side of his cheek and down his neck...yes that was happening.  He is finally back to work after I think 8 weeks off.  And Jack's rash is gone from his HSP.  We have to take him to the doctor every 4 weeks and get blood work because apparently the aftermath of this disease is kidney failure. Nice, huh?  We also have to get his blood pressure checked ALL the time as that is another side effect.  WTH?  two kids with blood disorders...really? And a dog too!! We have had every test done to this house, but I strongly believe its the water.  I don't care what the EPA says, when we put in a 10 grand system and our water still comes out brown because the owner of the well and the city has no regard for the safety of the citizens out in colonial meadows, the water cannot be safe to bathe in let alone drink.  But that is another rant for another day.
So as I am "catching" up on everything, something has occurred to me.  I remember reading about children who were in the last phases of treatment on their caringbridge and being so frustrated that they didn't post more often.  We were in the beginning phases with Lucy, so I wanted to know what to expect or when to expect good things, so I would follow children who were nearly done with treatment.  I also followed those who were knee deep into as well, but I wanted hope, I wanted to see the future, and it was frustrating that those parents did NOT keep up on their pages!! Well now I know why!  I AM one of those parents.  You know what happens? Life goes on.  Life becomes a new normal.  You suddenly feel consumed with everyday tasks again that once were not important at all, or you have found new tasks that have become EVEN more important.  As is the case with me.  I have found a new purpose and I actually know what I want to be when I grow up. FINALLY.  And I realize that I have put the blogging and the updating on the back burner.  Which isn't necessarily a good thing for my own psychological well being since I use this outlet as therapy a lot.  And its not necessarily a good thing for other parents/families going through this because I'm not showing them that life does go back to a "normal".  Its different, but yet the same.  Counts, chemo, clinic, and all the things in childhood cancer become a part of everyday life.  And I cannot honestly say whether that is a good thing or not, its sad in a way.  But I will say this: We do get comfortable, and things become normal, until that day you wake up and see another child has died from cancer.  A child who has the same kind as your child.  A child who is in remission and close to being done with treatment and died from complications.  A child who went into the hospital with a fever and never came home.  Then you stand up and think "oh, shit! how could I get so comfortable?" Yes, that happens too.  And it has happened to us recently.  It scared the shit out of me, and still does.  Makes me uneasy, and makes me cry.  And to everyone out there who are just bystanders in this journey and offer support but do NOT have a child going through this, let me tell you that just because we have at times become comfortable, and we do go on with everyday life and fall off the grid from time to time, and that counts and chemo are an everyday part of life, nothing about his should ever be normal or comfortable and know that we are still fighting.  No, we are not in phase 1 of treatment.  Yes, the shock has worn off some....but I still find myself in quite a bit of shock or disbelief that this is happening.  And we are still very much knee deep into this battle.  Yes, its been 2 years.  TWO YEARS! please don't forget about us because Lucy is doing well with treatment, or forget about us because after 2 years already we should be "used" to this, or after 2 years we should have adjusted.  That's not how this works.
I have a friend who's child is OT (off therapy).  Done! yay!! no more chemo!! but you know what? Her fear and her fight still goes on.  She woke up this morning to her daughter having a fever.  What does a cancer mom do? FREAK OUT!  Then she stopped and she paused.  And she said to herself "I have no idea what to do about a "normal" fever".  That is when I realized that we may say we are living a new normal, but how wrong it is.  Its not normal.  It shouldn't even be a new normal.  We are living....we are fighting...and nothing about it is normal.  I will forever be afraid of a fever because of what it represents to us now, and what it can represent in the future.  Fever is the first sign of childhood cancer.  Our friend Logan walked into a hospital with a fever and never walked back out.  A fever while nuetropenic is life threatening. A fever is not normal for us and probably never will be again