Now I know why I was given a loud voice

So to say that we have been stressed in the past couple of days is definitely an understatement.  I woke up Thursday morning at 3:30 am.  I have NO idea why.  I was wide awake and could not fall back asleep.  So I did some work and then did some follow up stuff for fund raising for St. Jude.  Around 5:30 am, Lucy woke up. she NEVER gets up before 7.  She is our sleeper.  So I immediately knew something was up.  I felt her and yep! sure enough, she was warm.  I took her temperature and it was 100.4  That is the cut off for calling St. Jude.  Normally, they would tell us to wait an hour and take it again; however, she had an ANC of 20 at clinic the day before so I knew it was probably best to just take her in and start antibiotics.  The quicker they start those, the better chance of survival if she has a nasty infection.  So I woke up Zach and told him that I was packing and asked if he would call the clinic to let them know we would be on our way.
Zach took her in and they had no beds available for her.  They told Zach it would be 90 minutes.  Which is NOT acceptable.  If she needs antibiotics they should have been started 30 minutes ago.  Luckily, a nurse from our St. Jude clinic saw Zach and told him and Lucy to go on back to the isolation room in clinic.  She accessed Lucy's port, drew blood for cultures, and started IV antibiotics.  After I got Jack on the bus that morning, I headed up to Peoria. They had JUST gotten into a room when I got there.
So basically, Lucy wasn't running a fever anymore, and they did check her 3 times because they kept getting different readings from the thermometer at clinic.  The first was 98.9, the second was 102.2, and the third was 98.5 all within a 10 minute time period. Well, since she dinged the 102 (whether or not it was accurate) she got automatic inpatient.  At the time, we were ok with that.  We knew her numbers were low and risk of infection and complications were high, so we were on board with the stay.
We waited for our doc to come see us and give us a game plan. He never came.  Instead a resident did.  He told us she looked good, and that as long as her fever was gone for 24 hours, we could go home the next day. They were going to run antibiotics every 12 hours as a precaution.  So we thought "ok, let's settle in order Lunch and make the most of this".  I must mention, we were put in the same room we got our diagnosis in.  So I had a lot of anxiety going into this.  Brought back a flood of unpleasant memories.
So our first mishap started with the kitchen. We ordered lunch for Lucy.  2 hours later it came.  We told them she couldn't eat it because she is on a low bacteria diet and anything prepared has to be consumed within an hour of cooking it.  Of course Lucy starts screaming and crying, she's hungry.  So they apologized and made her new food and it was up there within 30 minutes.
So as the day went on medication started coming in for Lucy that she is NOT on.  We said "what is this? she is not on any medication except for the antibiotics you gave her".  The nurses said they still had orders for all her medications.  We refused the medication and asked that they get that fixed because if she were to get chemo, that would be fatal. so the nurses said they would work on it.  Still no visit from Lucy's doctor.  And then more mention of medication.  Zach was irate.  He went down to the nurses station and said he wanted to remove Lucy from their facility.  He said given the circumstances, he felt we could take better care of her at home.  We could provide an environment that wasn't filled with sick people, we could provide hot food, and we wouldn't give her medication she can't have.  The nurse told Zach that was his choice, but that we would be responsible for teh bill if we left against doctors orders which would roughly be $13,000. Their was conversations with the doctor and nurses after that of sending us home on an antibiotic and the doctor really wanted us to stay.  Zach said if the medications could be taken care of, we would stay.  They said they had taken care of it.
Shortly, after Zach left to go home and take care of Lucy. Before doing so, he went to the nurses station and told the Charge nurse that nothing was to be given to Lucy without consulting with me first.  Even if that meant waking me up in the middle of the night or waiting for me to use the restroom.  So Lucy and I hung out.  It was boring, but I got some quality time with her.  It was nice.  Around 8 pm, pharmacy walked in with about 4 medications for Lucy.  I said "what is that?"  She said "these are her meds that were ordered".  I was mad. I said "no, we don't need any medication".  She apologized, and I know it wasn't her fault.  She was doing her job, so the nurses came in.  I asked what was going on and they said it looked like they cancelled the antibiotic but left all other meds in there.  So I called Zach to let him know.
well that's when the shit hit the fan.  He called the doc on call and chewed him out pretty good.  I have never heard Zach yell with such force and almost cry doing it.  we were upset. What if they messed up and she got chemo?  it would kill her, literally.  After Zach made that call, a resident came into Lucy's room along with a bunch of nurses and the doc on call was on speaker phone.  they were all denying that chemo was going to be given or ordered.  And I told them I didn't care what they were telling me, I cared that any medication at all came in her room when it should not have.  So I sat there with them and watched them cancel all orders for the meds except the antibiotics.  I communicated to the nurse I still wanted to be woken up with any thing they put in her port or mouth including a thermometer.
So around 9:30 they came in with a syringe. I said "what's that?"  She said it was the antibiotic just in a different form.  So I asked to read the label just to be sure.  And it was in fact the antibiotic.  So after that ordeal, I fell asleep with lucy. I slept in that bed with her.
So the next morning, the resident and the doc came in pretty early asking when Zach was going to be in there so he could talk to him.  Then another doctor from clinic came up to see how we were doing and talk to us about the things that had occurred the night before.  We love this doctor and I trust him.  He said he thought Lucy should stay one more night because of low counts and to be sure nothing grew in the cultures they took.  He also explained a few other things to me and told me she was receiving antibiotics every 8 hours now and had gotten her last dose at 4 am.  I said "WHAT??"  why didn't anybody wake me up?  I was upset again. I specifically asked many times to be woken up for meds.
Anyhow, a couple hour later Zach arrived back to the hospital and we sat down with the doctor that was in charge of her care and the nurse manager.  The doctor said he wanted to explain what happened and that protocol had not been followed.  Zach said he didn't care what had not been done, his point of view was that the doctor was not taking responsibility for what happened.  He felt ultimately it was the doctor's responsibility.  And the doctor kept saying "yes, its my responsibility, but....."  Dale Carnegie 101....never apologize with a "but".  He kept blaming the nurses then the resident.  It was frustrating.  We told him we would stay another night only because the doctor we trusted had came up and looked at her and told us his opinion.  I don't think anything sunk in with the doc on call about how frustrated we were.  He kept saying we would put Lucy in danger if we left the hospital.  And what we were trying to communicate to him was that we felt that her being in the hospital was far more dangerous than at home.  We said we had a clean environment where nobody was sick (unlike the hospital filled with sick people), we could prepare fresh hot meals, and we wouldn't give her any medication she shouldn't have.  We were trying to explain the seriousness of the situation by explaining that while we knew she should be inpatient, we were not comfortable with her care. It went over his head.  so we finally just ended the meeting at that.
Lucy stayed another night and the next afternoon she was released. We are obviously not their favorite patients either.  We got the cold shoulder from a few of the employees, and the "looks", and I caught several nurses talking about us at the nursing station.
Needless to say, Lucy is at home, she still has a very low ANC, but we are all more comfortable here.  I think sometimes people think doctors are like a god because of how far science has come in healing people where once they would have not been healed.  And some people trust whatever the doctor says or don't feel like they can complain at a hospital. Truth is our voice is all we have in this type of situation.  Our voice is Lucy's advocate.  And while we made enemies, I don't care.  I am thankful that I am as loud and boisterous as I am, same with Zach.  That voice has gotten me in some trouble before, I am not gonna lie, and I know how some people cringe when I share my opinion because its not always the mainstream idea, but I have learned now that all of that was for a specific reason. It was practice in preparing myself or how to use my voice in a powerful way to protect my child and myself.  Lesson learned:  Just because you didn't go to medical school or nursing school, doesn't mean you can't ask questions, it doesn't mean you can't question some of the care you receive, and most importantly, it is actually your right as a patient to receive and demand the best of care whether they are short staffed or not.  The mistake that could have been made in our situation would have been fatal to Lucy.  That's food for thought....

Who knew a number was so important?

Lucy had clinic today and was scheduled to receive IV methotrexate like last week, well she didn't get it last week because her ANC (absolute nuetrophil count) did not double from the steroids, matter of fact it plummeted to 260.  Anything below 500 means her immune system is basically gone.  And this has happened before. It seems to happen every other cycle of vincristine/dex.  So I wasn't in too much shock last week.  Basically, it is her body telling us she needs a break from chemo.  Her bone marrow is tired.  So we laid off chemo all last week.  So today we go back in, and her ANC plummeted even further.  It is sitting at a mere 20.  Yep, read that right 2-0.  I was in shock.  It hasn't been that low since we were first in the hospital at Memphis when she was getting 4-5 different chemos.  So no chemo this week either.  And I am a big fan of letting her body recover, it just freaks me out because when she's not on chemo then a pesky leukemia cell can get through.  So we go back next week to see if its on the rise.  There are a couple of other numbers in her blood counts that tell us if its on the rise or not, its not 100% accurate, but there are two tests that test for lymphocytes and monocytes.  And those two are basically immature nuetrophils.  So it means her bone marrow is making them, they just haven't matured enough to actually be useful to her immune system.  Those numbers were looking pretty high, so that gives me hope.
So, why am I so freaked out?  Ok, maybe freaked out isn't the right word. Why am I so disappointed and let down by this?  I think because while we live every single day with this disease, it is days like today that like to remind us exactly how severe it is.  I mean Lucy has been doing well and we are semi-normal most times.  Its just a knock on our door from cancer saying "hello, all has been going great, but I wanted to remind her that I am still here".  Asshole.  Cancer is like the salesmen you try to be polite to once.  It's like ok, you are here, we will give you a few minutes and let it sink in, but then you are going to have to go because we have dinner and life to attend to.  So the salesman leaves, but since you took his bite the first time, he still comes knocking every once in a while just to remind you. So today, our salesman came back.  And he sold us shit.  He sold us a number we don't want.  We would like to have a refund please on our therapy.
So, anyhow, who knew a number was so important.  20 is our important number today. Normally, here are our important numbers 300, 500.  When her ANC is between 300-500, she can get half chemo.  When its above 500, she gets full chemo.  We want above 500 because we head to Memphis in 2 weeks for our very LAST IT with chemo!!! woo hoo!!! she will still get spinal taps, but they won't have chemo in them.
Another important number to us today is 47.  That is how many weeks of maintenance Lucy has been through.  47 out of 120.  We are almost half way through her protocol.
I am not a mathematician.  I do not like math, I do not like numbers, I do like odds or statistics, but yet, I am living in a world of numbers.  Funny how life goes sometimes.  sigh......
ok, well enough rambling...I have to now go scrub the entire house from top to bottom, floors included.  And the doc said to not even let Lucy play outside at all, that is how low her numbers are. So our castle will just have to do for the next 7 days....shit...another number!

Life as Taco

Funny how I can jump subjects in my blog so quickly.  If it gives you any indication on how my life and mind works, it's pretty messed up sometimes.  I wonder if I have ADD...anyhow, I was noticing Taco the other day.  Not that I don't notice him everyday, but I was laughing really hard at him, and it made me think. It was 10:45 am and he was still in bed from the night before.  We have a heated mattress pad, and apparently the timers had kicked off yet, so he was in it for the long haul.  So I thought to myself.  I think I'm going to live a day as Taco in the near future.  It's a science experiment...or maybe a social experiment, either way, it will be good for prosperity.
So here is how I imagine my day will go.  I plan on sleeping in until the heated mattress pad goes off.  Assuming we kick it on around 10:30 and its a 12 hour timer, that would get me up at 10:30 am.  I then plan on going potty (although for all people involved in this experiment) I will go the person's way.  BUT I do require a treat when I'm done. A pat on the head, called a good girl..then I will retreat to the couch for a short "cat" nap.
Then it will be lunch around noon.  So I plan to hover around Lucy.  She is notorious for giving food to Taco.  Which is probably why the diet food isn't working....anyhow, I'll make sure to have Zach make something AMAZING for lunch so I can eat hers too.  Then guess what comes after lunch?  Potty, Treat (I'll make sure I have plenty of dove chocolates laying around)  True dogs can't have chocolate, but this is an experiment...science says I can make concessions.  Then NAP!!
Usually Taco lays in bed until Jack gets off the bus from school around 3:50, where then I will get out of bed and hug and kiss Jack when he gets off the bus (maybe I can work up a good bark).  Then I will retreat to the couch.
Now being a good replica of Taco, I will let Lucy torture me.  She usually likes to cover him with kisses and hugs and be in his general way.  I can handle that.
Then I will continue to take another nap on the couch until the prep of dinner starts.  Then I will sit right next to Zach and get under his feet while he cooks dinner in hopes I can have a taste of something he drops on the floor (of course, I will catch it prior to dropping).  Then once again, I will be RIGHT next to Lucy during meal time.  Potty, treat...repeat ....
Then the night gets exciting....
I will sit in my chair with my favorite blanket and sit on Taco's lap...err..well..he may have to sit on mine, but you get the idea.  That's pretty much all he does all night.  He will even try to drag the blanket over to my chair...
Potty...treat....and then guess what BED!!!!  yep...heated mattress pad...here I come.
AHHH..the life of Taco. I cannot WAIT to spend the day being "him".  Now if I can find a substitute "me" while I do this experiment, it may work out much better for Zach.

This isn't going to be pretty

I am just throwing that title out there as a fair warning to all reading.  This isn't one of those posts where Lucy did something cute or where mama is going crazy and bawling her eyes out. This post is entirely dedicated to how we have seriously got to change things in this country. This is about children dying, children in pain and screaming all day long. This is about families and it could be your family.  It could be your neighbor.  Bottom line, its about all tax paying citizens and how (excuse my language) fucked up politics has made this country and how much it needs to change...NOW.  I do not want to hear another person say their vote doesn't matter or that it doesn't make a difference. Because you know what, politicians here you.  they know people are cynics, they know people are fed up with "the fight". They know the majority of people have long given up on the ideals of a democratic society.  I may be talking about you, and I may not be. You may be like me and begging and urging people to stay informed, vote, have a voice, and let people know you are listening, paying attention, and your pissed.  Either way, things have to change.  There are a ton of political issues, but I am going to speak of one.  Health care, drugs, pharmaceutical companies, FDA.
If you haven't heard of drug shortages, let me educate you.  They happen every day, and have been happening for a long time.  The FDA has a nice little website that lists all of them. And unless they affect you, you probably don't know about them. I didn't. I didn't realize how many there were.  And then when I found out of a shortage of methotrexate (life saving drug for kids with cancer like Lucy's), it affected me so I took notice.  I am guilty of not "caring" until it affected me and my family. Ok, that's not fair, its not that I didn't really care before, I was uneducated and unaware.  Well now my ears are in tune, and guess what, its not a pretty story.  And its not just on paper, I see pictures of the kids it is affecting and who it may affect.  Hell, it could affect Lucy.  So there was a media blitz about it.  The same day Whitney Houston died.  It is still lingering a bit, but the FDA issued a statement that they have averted the crisis of the shortage and are taking care of it.  There is only one problem with that statement.  It's a lie.  I have a new network.  Its a network of cancer moms.  Today, I hear kids are NOT getting their methotrexate because the hospital is out.  So how is that averting a crisis. BTW, I am speaking of IV non-preservative methotrexate mainly.  That is the stuff that Lucy gets shot into her spinal fluid every month to help kill any of those pesky little leukemia cells hiding out to make her relapse.  And its important because the preservative free helps to keep her from having neurological damage.  That's pretty important.
So, there are other shortages as well.  One of them is IV morphine. No, Lucy doesn't need this...THANK GOODNESS!  but guess who does?  A little girl.  2 years old, Anna Rose. She is dying. They sent her home on hospice and her tumors are literally smashing her body from the inside out.  Oh, yes they sent her home to die.  With no IV morphine. So while her parents have to deal with the fact that their precious baby is dying, they also get to hear her scream all day about how much pain she is in.  Have you ever heard your child scream because they are in pain and there is nothing you can do.  I have.  sucks.
So here is what I am asking of all of you who are able to vote.  You need to #1. vote.  and #2 let your representatives know how you feel about issues (not just this one), pay attention to the issues and #3 find out who funds your candidates.  Because let's face it, money has everything to do with everything.  Drug companies (the ones who are not producing methotrexate right now in particular) have stated, it is not profitable for them to manufacture this drug. There are 5 companies doing it, and it decreases the supply/demand principles, therefore it costs more to make then to sell.  I understand. They are running a business.  Unfortunately, there business affects lives.  Children's lives. My child's life. BUT...these drug companies also have enough money to put very powerful lobbyist in Washington.  They can pay for the laws they need, the tax breaks, FDA issuing false statements, etc etc.  I cannot.  I also only have one voice.  I need help. I need millions of voices and VOTES.
Here are some links to back up the claims I made above (so you know I'm not full of shit like some of our politicians).  Be aware, be informed, and vote.
http://www.medscape.com/viewarticle/758810?src=stfb

http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm



http://www.npr.org/blogs/health/2012/02/16/146960417/latest-drug-shortage-threatens-children-with-leukemia

and last but certainly not least:  Here is Anna Rose....the Two year old who is dying...
https://www.facebook.com/weloveannarose

Happy Belated Remission Anniversary!!

Most times, we go along just fine living our life as normal as we can.  Oh, yes, it has changed, and when I say normal, its a new normal.  But today, I got hit upside the head with reality and am having a really bad day.  I'm not sure if its because Lucy is coming off of dex and this last pulse was a lot more harsh than before.  Or if its the cabin fever that we are all starting to feel being cooped up together in this house.  or yet another factor could be that there is a methotrexate shortage in this country and leukemia patients NEED this drug to stay in remission and drug companies decided it was no longer profitable so they stopped producing the drug.  Or its probably a host of all things combined, but today, more than any other day, I really really hate cancer. I hate when I let it get me down.  We have come so far, yet sometimes I feel like we are still in square one.  Today is one of those (what Oprah would call) ugly cry days.  I'm mad and sad all at once. Lucy's remission anniversary was February 11th and I didn't even have time to remember or celebrate that milestone because daddy and I were tag teaming one of the worst dex meltdowns to date.  And I REALLY wanted to celebrate that day.  Instead, I forgot all about it.  I remember the day she was diagnosed and had anxiety up to a week before that day and couldn't get it out of my head, but I forget our remission anniversary.  Why does that make me so sad? Because I feel like I gave another day to the stupid cancer. It could be that today was valentine's day and all my friends were posting how excited their children were to exchange valentines and have parties, and Lucy didn't get to experience that.  And oh how she wanted to.  All she talked about was going to her babysitter's Lisa's and making valentines for her friends.  That is so sad.  It makes me angry.  I still do the whole "why us" sometimes. I really try to avoid it knowing nothing good comes from it, but its hard sometimes to look at her and not think "why?  why her?"  She was talking the other day how she can't wait to have her long beautiful hair back and how she loved my long hair.  It made me want to chop it all off.  And I still do.  I told her she has such a beautiful face that the hair was just a bonus. She also remembers when a kid on Jack's bus made fun of her last year.  She came up to me and said "mom, why would that girl say I was ugly? she was pretty wrong about that, huh?  I'm beautiful, right?" and I know its just some young kid who doesn't understand, but it really ignites a fire in my belly.  That should be a sign of going insane, right? Wanting to put a hurting on an elementary kid!  ha!
Now that I'm all stuffy from bawling and my eyes are swollen, I'm not exactly sure if I feel any better or if that accomplished anything.  Sometimes women just need a good cry. Remember the episode of Everybody Loves Raymond when she tries to explain that to Ray.  Well, I believe in that theory whole heartily, I just hate that I have a reason to have a good cry.  When I look into the eyes and face of my beautiful little girl, I get so angry.  It has calmed a bit, but its still there.  And today it reared its ugly head.
So, anyhow...Happy late Remission anniversary to Lucy and Dr. Pui for making it possible.  I want to make sure I NEVER EVER forget this day again!!!  Dex or no dex, methotrexate shortages, and horrible Illinois weather in February will never get in my way of forgetting that day.  We will celebrate..just a few days late.  But balloons and chocolate cake it is!

Sample of Life at the Webers

So since my last post was a bit of a downer, I decided to switch gears and give you a taste of what goes on inside the walls of the Weber's house.  Those of you who follow us on FB, get a taste everyday of the craziness and quite frankly at times its hilarious.  It really does help to laugh that keeps us sane....or insane?  Doesn't matter keeps us from killing one another, especially in the month of February when its too cold to throw the kids in the back yard or light a bonfire and have a few drinks.  Cabin fever has obviously gotten the best of us lately as illustrated in some of the stories below.  Enjoy.  And yes, we have no shame.  

What do Men really think about?

A couple of weeks ago, Jack was staring off into space, and I said "hey, bud, whatcha daydreaming about?"  He said "what does that mean?" So I explained how sometimes we think about random things during the day or stare off into space to give our brain a break and think of nice things. He looked at me and replied "no, I wasn't doing that, I was staring at the chair".  HAHAHA Zach said "See I told you that men really aren't thinking about anything and if they are its probably sex".  So a few days ago, Zach had that same look on his face that Jack did.  He was gazing off into space.  I knew better not to ask what he was thinking because he was probably just looking at the wall. Well, he looked at me so intently and serious and said "how do you think Whales have sex?"  and he was dead serious!!  Oh my, I laughed so hard.  It was so appropriate since weeks earlier we had JUST had that conversation.  So I guess the theory has been proven true...at least for my boys.

Setting the Bar high.

Every week, Jack has spelling tests at school.  We usually start studying on Monday, and then through out the week we go over them a couple times.  In the beginning, I used to place word cards in various places around the house.  On doors, mirrors, walls, etc.  He had to read it or spell it everytime he passed it.  That was ambition.  Well, the week before last, we forgot about the spelling test.  Don't ask me how.  It's not like its not a regular thing.  We remembered all about it 5 minutes before the bus came on test day.  Zach handed Jack his spelling words and told him to study on the bus and said "good luck".  Well, that afternoon, Jack came busting through the door, and I said "so how did you do on that spelling test?"  He said "I FAILED it!! I missed a lot".  So what would most parents do?  Well that's NOT what we did.  I laughed...I laughed so hard.  I think it was out of pure craziness.  I told him "bud, I'm so sorry you failed, its partly our fault for not helping you study".  So, this week, we get spelling words on Monday, and what did we do?  We studied, and studied, and studied.  So come test day, Zach said "so, bud, how are you going to do on your spelling test?"  Jack replied "These words are easy, I'm going to shoot for a 90%".  Zach and I looked at each other and giggled under our breath and Zach said "Bud you know all these words why not shoot for 100%?" his reply "Well, you still get a smelly sticker when you get 90%".  We really didn't know what to say.  I guess we are NOT raising over Achievers!  LOL  I don't know if its a good thing that he doesn't stress out to and feel pressured to be perfect or a bad thing that he will settle for less than excellence.  I think my laughing at his failing test score scarred him.  Gonna have to work on reversing that.

How the Walls Speak to us.

So you are probably wondering what you are looking at here?  Well, I'm so glad you asked, let me share.  It's valentines, on Lucy's wall, with lip gloss.  So this was a pleasant surprise when I went in to tuck lucy in for nap.  I said "What in the world is that?"  She said "well, I didn't have any tape".  I said "So, what is that".  She proceeds to lift up her pillow.  Under neath it is lip gloss, fingernail polish, pencils, and markers.  So apparently she has a stash.  So this wall is covered in lip gloss, the one behind her door is covered with finger nail polish and stamps.  Zach was so mad and nearly flipped, but I had to leave the room because I was giggling like a school girl.  I do believe that is NOT how a parent is suppose to react.  Again..blaming it on cabin fever.

Kids say the darnest things

Lucy has her special shoes that help her not walk on her tippy toes.  She hates wearing them because they hurt.  They hurt because they force her to walk regular.  Well, the other day daddy was bending over and putting on her shoes.  Lucy says "Daddy, you have hair on your butt"  (she really meant lower back).  Daddy said "well, gee, thanks Lucy".  she said "you need to wax that".  I think I spit my water out!!  hahahaha  She had learned all about waxing after watching America's Home videos with the babysitter.  Oh, my....

So that is just a short sample of what goes on in our life.  So in my description when I say we are raising our two children and trying hard not to screw them up in the process, I REALLY mean it.  Parenting is definitely a learn as you go type of job.  I'm certain we probably screw up more often than not, and I think we aren't suppose to laugh as much as we do (at least not in front of the kids for their mishaps).  At this point, we are holding on tight and hoping that they both aren't still living with us when they are 30.......Have a fab weekend.

Stupid, bleep beep cancer...

Lucy woke up screaming about chest pains. I assumed it was heartburn, as she got us up in the middle of the night to eat (not even steroid time yet). I gave her ranitidine. And of course she is screaming and crying and she NEVER does that...not even on vincristine. Gave me an adrenaline rush and I was ready to rush her to clinic. So I thought I'd try codeine. I put that in her mouth, and she said she was all better now. So I think it was heartburn and the meds finally kicked in when I finally decided to do codeine. Boy that really got my adrenaline going. DAMN IT! I hate when I let it do that to me......grrrrr... 

95% of the time, we live with this disease ok, and the other 5% I just want to scream and kick and punch things.  Today but be the other 5% day.   We really do try to not get "too" comfortable when things are going good, as we know any moment things could change with a fever or a bad cold or even a fall.  Anything really.  I think I must have let my guard down and that is why this morning shocked me so much.  She is fine now.  Running around in her princess dress and asking for lip gloss.  So now that my adrenaline rush is over, I feel like I may cry. And I haven't cried over cancer in a long time.  So not sure what's going on.   

I have absolutely no theme or thought process for this blog post, it was more of a vent really. And it doesn't help that I belong to a group of other mom's with ALL kids and they seem to be getting bad news a lot lately regarding relapses or major side effects of the chemo.  I'm trying so hard to stay positive, but sometimes it beats you down.  I think we need a vacation, but that too is almost impossible to do.  We would have to map out hospitals, and stay within the Mississippi belt so we could hit up a St. Jude clinic if need be, and not to mention she still gets chemo every week, so it wouldn't be a long vacation anyhow.  I feel like I want to take the kids to the beach.  She can swim in the ocean....isn't that odd.  No public pools, but the ocean is fine. I would love to just drive down to the gulf and stay for a few days and drive back.  Give us all a little break, but there is so much that could go wrong and we would be far away from our comfort in doing so.  

I also think we are getting a little overwhelmed with work, school, cub scouts, trying to maintain our marriage and time to ourselves.  And you know what, its not really any different than before cancer in that regards.  We were also on the go and always too busy for anything.  But now we have this damn cancer looming over us for another year and a half, and I don't even want to know the stress and fear that comes after she stops chemo. I'm sure the next year or so will be nail biting.  If they are going to relapse, that would be when it would happen.  I feel like we need a big time out.  like a week long time out!  to give you an example of how defeated we felt last week, we totally forgot to help Jack study for his spelling test.  We have NEVER forgotten!  The kid does great usually maybe misses one word or so and usually not for spelling but because he wrote a letter backwards or capitalized it (which don't get me started on that), anyhow, last week, totally didn't think about it all....until 5 minutes before the bus came on test day.  He comes home and I say "how'd you do on that spelling test"  He said "I FAILED".  And Zach and I just started laughing.  That is NOT appropriate behavior for parents when your child fails a test.  We apologized because it really was our fault.  

whew....I feel a little better...but I must say I still think I"m going to need to go into a padded room and scream obscenities for a while.  better yet, wish we had a punching bag.  Something about cursing and hitting things that makes me feel better.  

Thanks for letting me vent....

Sugar and Spice and everything.....you decide

It has been a long time since I last blogged, and it isn't for lack of material, but rather, lack of time.  I am actually up before anybody this morning and waiting for my coffee to brew, so its nice to have some alone time.  This is my favorite time to write.  I ramble best in the mornings when I first get up.
Lucy is doing well.  Her counts have finally come up and is getting full doses of chemo every week. We did switch our clinic day in Peoria from Tuesdays to Wednesdays.  They were getting a little packed on leukemia days so they are trying to spread it out.  How sad is that?  A cancer clinic is getting too busy...let me rephrase that...a child's cancer clinic is overflowing. WTH?  I remember when we got our diagnosis. I asked how this happened.  The first thing any doctor we met told us was "None of this is your fault.  There is nothing you did wrong while you were pregnant, there is nothing you did wrong while raising Lucy".  That was a huge relief.  Because there is a lot of guilt associated with this for us.  What if I had nursed longer, what if we hadn't used pesticide on the lawn that year, and the list goes on and on.  Then you meet people who have the same questions and are from all walks of life.  And you finally see that, this was not something that was your fault.  And so, while we go on raising our kids the best way we can, the clinics are still overflowing with pediatric cancer patients.
I did NOT mean to start this off so dreary! ha!  sorry about that.  It was just what has been on my mind lately.
We haven't been on dex for a couple of weeks, and you can't tell!  My little angel. My tiny, precious, beautiful little girl has HORNS!  She is truly ornery and driving me up the wall for the last week.  She is only 4 and very manipulative already.  I guess when she stays at home with grown ups all day, she learns the tricks of the trade!  ha!  So I am going to list in no specific order the "trouble" she has gotten into the past couple of week. Please....refrain from falling out of your chair and laughing so hard your stomach hurts...
Exhibit A: Tooth Paste on the Toilet seat.  I wish I could say this was a one and done....nope.  Happened SEVERAL times this week.  Along with her using up all the hand soap in the bathroom.  We now hide these items and she has to get permission to use them.



Exhibit B: She has decided to wear dress up clothes all day long, which in it self, is not a bad thing, except you should see her room...OMG...it has been taken over by clothes and babies.  And she is so stubborn that she REFUSES to clean it even with help.  She will choose to go to bed at 7 pm instead of cleaning her room.  She is her mother's daughter.

Exhibit C:  She has NOT been on Dex, but unfortunately, her eating habits while on dex has carried over to the rest of the week along with boredom.  She is constantly asking for food.  We have limited her to breakfast, snack, lunch, snack, and dinner.  We still find food wrappers of all kinds hidden behind drawers, cabinets, and even under her bed!

Exhibit D: conversation with Lucy.
Me:  Lucy what did you do?
Lucy:  What does it look like I did..I crushed up chalk on the floor.
ok..so no remorse. uh oh...we are in trouble.

Exhibit E: another conversation with Lucy
me:  Lucy did you get into something you weren't suppose to?
Lucy: Nope!
See picture below and tell me how you would handle this situation without laughing. ps.  It's my lotion.

and last for this week, but not least..and I don't have a visual for these two.  Zach walked by Lucy's room and said "Did you paint Lucy's nails?"  I said no, he said "well, her room smells like finger nail polish, you better go investigate"  So I went in there and asked her, and of course she denied everything at first. Then I told her that she would be in much worse trouble if she lied.  So she told me, and then she showed me.  The back side of her door is now painted with finger nail polish to match the wall that has stamps and crayons all over it. She KNEW to hide it behind her door because we don't look there.
When Lucy goes to bed at night, she messes for at least an hour.  Getting up to do everything she can think of.  going potty, getting a drink, etc etc.  Well it started to become too excessive, so we told her from now on every time she gets out of bed, she loses a toy.  So the other night she yelled that she had to go potty, and we told her to go ahead and remember the consequences.  So before getting out of bed, she asked "which toy are you going to take".  Daddy told her not to worry about it.  She said "Well, I hope you don't take my my pinkalicious book".  Daddy "well, don't tell me or I will take that toy".  She proceeds to go potty, but before doing so, hides the book under her bed.  Zach goes in to take a toy and finds it carefully hidden under some blankets under her bed.  NOW!  You tell me Sugar and Spice and everything nice?
**editors note:  These are only a few examples of what we deal with on a daily basis, generally at least 3-4 of like items happen per day.  and THIS is why I take prescription medication ;)

Last item is housekeeping.  Go over and buy your ticket for the St. Jude dream home.  You can see Lucy here on the radio web page and see the tour of St. Jude that was recently taken by Jenn at 97.3 River Country.
Lucy and 97.3 River Country