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

What does the "F" word have to do with the "C" word?

Can I constructively create a blog post about cursing, without using a single curse word?  THAT is my challenge.  So there are times that I lose it.  In this journey there are things that are going smoothly and there are still days that are horrid.  It seems to be cyclical.  Some occasions remind me of early diagnosis, and sometimes just seeing a picture of Lucy pre-cancer causes me to have a total meltdown either sad or angry.  It is these times that I find it appropriate to have mini-meltdowns.  Of course I don't do them in front of my children, and prefer to keep them to myself so that somebody doesn't admit me to the psych ward (even though Zach and I have often fought over who gets to go there first for a vacation).  And during these meltdowns two things occur sometimes both at the same time:  I cry or I cuss.  I do neither quietly.  I don't know what it is about cursing that makes me feel as if I have expelled the hurt, pain, fear, and sadness  They are just words.  Words can mean anything given in different context.  But knowing they are discouraged from being used in the public, makes me feel better when I lose it.
Let me give you an example in case you are not quite following what I am saying.  Ever seen National Lampoons Vacation?  Christmas or the original?  Clark is hilarious.  He tries so hard to make things perfect for his family in his own twisted sort of way.  But there comes a time when he finally realizes that everything is going down hill fast, and that is when he loses it.  During these "spells or episodes", he is cussing and yelling and going off the deep end.  Those are my most favorite parts of the movie.  Why? Because that is SO me!  ha! And I would quote what he says, but of course then I would lose my challenge about not using a single bad word in this post.
So where am I going with this?  Well I belong to a group of other moms who are currently in the same situation as me.  Their child has leukemia.  We have this group that I mentioned in my book as being a "safe" group.  It was a place where I could have mini meltdowns and still know that I wasn't being judged over it.  And usually, when others had meltdowns, it made us all feel "sane".  Like we weren't the only ones that found comfort in the bad words expelling from our mouth either with our voice or our pens.  To so many, it was satisfying to them as well.  After all, its not appropriate or even worth it for me to write down all my melt downs in my blog posts (there would definitely be over a million), and Team Lucy is a page of positive thoughts and information on her and her condition, not a place for me to "lose face".  I loved this group, I coveted it, and it was like a special club that I didn't have to share with anybody but the mamas in it.  Well, something happened to that club.  It was growing and growing and growing.  Which in itself is so sad to know that a group like that can grow so quickly in numbers when we are referring to kids with cancer.  It no longer became intimate, and we were asked not to post our vents on their anymore as to not offend anyone.  I can appreciate that.  I really can, however, it doesn't mean I wasn't heart broken.  Everybody deals with things in their own way, and to be told you aren't allowed to express yourself any longer the way your are accustom to and still feel safe, and to feel as if you are now being judged based upon it...well, it was a sad day for me.  If I can no longer vent in the way I feel most comfortable in the safest place in the world, where can I do this?  Where can I get out my frustration, anger, and even sometimes just a build up of petty little things?
When you are appealing to the masses and want to be part of  group or organization and be popular, you have to have guidelines and please everybody.  And that is not possible. You cannot please every person in a large group, but you can compromise. OR you can skip the vents or mothers who you don't align with based on certain values, and go to the ones who do share your views or even curse words here and there.  Well, compromise did NOT happen, so I was more or less scolded and chose to remove myself from the group.  I did not feel "safe" any longer.  And it still baffles me that people who are going through the worst possible situation in their lives thus far were offended by language.  By words.  So What does the "F" word have to do with the "C" word??? They are both words.  They are both dirty dirty words. They are horrible to say and feel yet one can be so satisfying to say in front of the other.  Why?? and is it just me?? maybe....but I think its a double standard to say that one word is dirtier than the other.  Considering the definition of both, its ironic that they basically mean the same thing!
Whew!  For those of you wondering....yes, I have a new group for my safe place. And yes, I failed my original goal.  I did not make it through this post without using a bad word.  I said cancer way too many times!

Let's add another acronym to the list!!

Wow! so I would say this past week was just about as nerve racking and busy as the previous two weeks.  I swear it feels like a month has passed since I posted last.  Well, Jack ended up having a horrible horrible rash on his legs, it got so bad that we had to take him to the ER at the Children's Hospital in Peoria.  I was NOT going to deal with the ER here in town again. We had found out since our trip, Jack had blood in his urine, something that the ER failed to tell us and something they let us go home with.  We were certain he had HSP, which is a rare autoimmune blood disorder.  It was something I mentioned on day 1 at the ER and was dismissed in a hurry.  HSP can only be serious if it attacks the kidneys, which blood in the urine is the first indication.  So I was livid when I found out about that and nobody bothered to tell us.  Anyhow, the second we went in the hospital, they said immediately upon arrival, he had HSP.  Before blood work or anything, just based on his symptoms, they were certain of it and would do tests to confirm.  They gave him anti itch medicine because at this point, his legs were so swollen and the rash was ALL over and he was in pain.  They took care of his needs right away.  As they did the blood work and was waiting for the urine cultures to come back, they felt like it was serious enough to make him stay all night.  They wanted to observe him. Oh, and I had taken him back to prompt care on Saturday because he had another different rash and his throat looked horrid, so in the middle of all of this he got strep throat. Normally, HSP can be brought on by strep, but Jack just happened to GET strep while having HSP...the doctors told Zach "lucky you".  So that was last Sunday.  Zach had to reschedule his surgery for Monday because he was overnight with Jack.  Monday afternoon, they released Jack with the official diagnosis of HSP and sent him home with pain meds and anti-itch medicine as his legs were so bad that benadryl didn't even cover it :(  That night was horrible.  He was so uncomfortable.  He cried all night :(
So Wednesday (2 days later), he finally felt comfortable enough to go back to school.  And that same day Zach had surgery at 6 am and Lucy had clinic, plus it was Halloween. Wow! Talk about a packed day.  Zach's mom came in to take him to surgery, and I got the kids ready for school and clinic.  That was a looong morning.  Lucy was fighting me on everything.  She has had some real discipline issues lately.  It got so bad that she was hitting me and calling me names.  I gave her several warnings, and finally had to pull out the big guns.  I told her I would take away her Halloween costume if she didn't stop, she said she didn't care and continued to battle me on going to clinic.  So, I took it away.  Then I told her she was not going to get to go Trick or Treating.  Again, she was still hitting and said she didn't care.  All of this over wearing pants.  She continued to hit and yell, so I dressed her and finally put her in the car.  We dropped Jack at school and headed to Peoria for clinic.  She calmed down finally once we got there, and don't think she didn't let all of the nurses know that mommy threw her costume in the garbage! hahaha  We were over 2 hours late to clinic due to her escapades.  So she ended up missing school. Zach was home from surgery once we got home from clinic.  Doc said that he thought things went well and we would have to wait a week to see.  That night, trick or treating came.....guess who didn't get to go??? yep! I stuck to my guns. It was hard, but she had been so deviant, I had to make a lasting punishment stick.  The first thing Dr Pui told us when we were admitted is that she WOULD get better and that if we stopped disciplining, we would have a monster on our hands.  And Lucy, by nature, was already a stubborn little girl and full of mischief, the cancer just added fuel to that fire.  It was the hardest thing to walk out the door without her.  But I have to say, not only did Jack and I get some much needed one/one "normal" time, she learned her lesson.  So much so that we had a radio interview the next day, and when asked about Halloween, she said she didn't get to go trick or treating because she made bad choices!! lol!!  I'm sure the audience was like "what a horrible mother not letting the cancer kid go trick or treating".  But that is just the thing..she has cancer, she's not immune to discipline.  I had someone comment on her Team Lucy page that I would "regret not letting her go if anything were to happen to her". I had to ban that person. Sorry, but I'm the parent, and first, I don't need advice on how to raise my child, and second, why would you even say anything about "if something happens".  That something could be anything in life, regardless of the cancer, but we don't stop disciplining our children over it.  It was trick or treating, I didn't lock her in a room with no food!  And no negative posts are allowed that encourage that type of thinking anyhow "what ifs" are NOT allowed.
That was last week, and this starts a new week of chaos.  Unfortunately, Zach went back to the doctor and he is NOT healing the way they wanted.  He is still having saliva come out the side of his cheek (on the outside, as in running down his neck).  So the doctor told him to sit still for the next week and do NOTHING!  Its driving him crazy, but he's also scared about what his options are for a 3rd surgery.  It has a great risk of causing facial paralysis.  We really hope we can try something else, as our luck isn't the best, and we would just assume NOT have to go there.  We go back to the doc tomorrow for him, so we shall see what it brings.  Jack seems to be completely better, and Lucy is picking fights, so I assume she is healthy! lol  As healthy as a cancer kid can be anyhow.
So to sum this up....I'm so tired of all the medical acronyms we get to add to our list.  HSP was definitely NOT what we were looking forward to, but its better than Cancer.