Let's Talk about Taco...

Right now is probably NOT the best time to tell you all about our brown wiener dog Taco because.......well, I was finally folding the laundry in the baskets that sit there with the "clean" laundry in them. They can sit there for quite some time before we get to them.  Often we empty them by wearing them before anybody gets to folding them and putting them away.  I hate folding.  And I don't iron, so as you can see...I am NOT a good housewife ;)  Anyhow, I FINALLY was folding this massive basket.  I was so proud of myself. I was making piles for each family member, etc.  I get half way through the basket, and I smell something.  It was a rancid smell.  So I smell the clothes that I folded and it wasn't that, so I smell myself...hey, you never know, nope wasn't that.  So I continue folding the laundry, and I smell it again, so this time I smell the clothes in my hands that I am in the process of folding, and they smell like pee!  I proceed to grab another garment and sniff, yep smells...and I do this about 5 or 6 times, because you know I couldn't just go with the first smelly one and make a decision to rewash them.  I mean come on! I JUST got the motivation to fold them, surely I don't have to start all over.  Well, as you have probably guessed, all of them smelled.  So as I type this, they are in the washer being rewashed.  Why do they smell like pee?  There are several possibilities but the only plausible one:  Taco peed in the laundry basket.  Fat little bastard.  Sorry, that seems to be his nickname when we get mad at him.  What I want to know is how is fat but even got INSIDE the basket. I know he likes to lay on top of the warm laundry right after it comes out of the dryer, but I didn't realize he liked to pee on them.  GRRR  And how do you punish him when you haven't seen him actually do it?  So here Taco gets off scott free....again....
oh, yes, Taco has gotten off scott free LOTS of times over the three years we have owned him.  But let me digress a bit and start from the beginning.
March 4, 2008...Zach and I's wedding anniversary, Lucy was almost 3 months old, Jack was 2.5, and I was having some serious postpartum blues. I knew Lucy was my last baby, so I was trying to relish in all that meant.  I also had an older dog, a toy poodle named Scrappy, who I felt was lonely.  So I bought a weiner dog for Zach as an anniversary gift!  I saw the picture on the for sale ad and just fell in love with his HUGE blue eyes, big floppy ears, and the pathetic look on his face.  Zach grew up with weiner dogs, so I thought he would totally appreciate it.  Taco was sold as a "mini daschund", we would soon find out that was a big fat lie.  Taco is about 22 lbs and HUGE..there is NOTHING mini about him.  So Taco turned out to be a spoiled dog just like my other baby, Scrappy.  Taco sleeps with us every night, matter of fact, I have a hard time falling asleep if he isn't at my feet.  Taco prefers the egyption cotton sheets and will grunt and moan trying to get comfortable it there is anything else on there.  Taco insists on drinking our bottled water.  Taco is a vacuum cleaner.  He has always sat under Lucy while she eats and cleans up after her (now you have to realize that Taco's birthday was actually on xmas, and Lucy's was the week before, so they are only a week apart in age ;)) Taco is also a very stubborn dog. Took us FOREVER to potty train him, and it is still debatable whether or not that was successful (obviously...the clothes basket).  You can let Taco go outside and he will do his business, you bring him and maybe run to the gas station or something for 10 minutes and you can bet you butt that he has done his business again somewhere on the floor!  grrr
Taco has scratched all the skin off of my husbands butt while he was sleeping (read post #2 of this blog for details on THAT funny story).  Taco has eaten at least a pound of fudge and 2 dozed cookies I had all wrapped up for xmas gifts two years ago...nothing happened to him.  Taco is Lucy's companion, but not by choice.  Matter of fact, we feel bad for Taco most of the time she is dressing him in clothes or trying to feed him a bottle.  Taco LOVES the sunbeam.  He will lay outside in it all day.  Conversely, he will NOT go outside if it rains or snows.  He will stay under our covers and on the heated mattress pad all winter long if you let him.  And if you don't have that pad turned on, he will bug you until you turn it on.  Sometimes he likes to sleep on our pillows.  So now you see why we love Taco so much....we have many many good stories with him, and he is very much a person in this family....so that's why we talk about Taco.  BTW, Taco has a FB page ;)

Do you need any New Scentsy for the upcoming fall?~

Cindy Short  is having a fundraiser for Team Lucy online through her Scentsy web page. Need any new flavors or warmers for the fall?  I love scentsy because its kid friendly, unlike candles!  Check it out here  Team Lucy Fundraiser

RMH!!

Daddy and Lucy were on the RMH's FB page today.  This was probably week 6 or so of treatment.  She look so little here.  Her face looks EXACTLY like the tiny little 3 year old I remember, not the big 3.5 year old she has become......

Tuesday Clinic 99 weeks to go! WOO HOO

Today is the dreaded Clinic day.  Don't know why I say that because we will have Tuesday Clinic's for the next 99  weeks.  We are at least down to double digits now.  We have been doing this for 40 weeks so far.  Amazing...and now they (doctors and other parent's) tell us that it WILL start to get a bit easier.  We have no more major chemo weeks.  We have spinal taps every other month in Memphis.  And her chemo regiment consists of methotrexate every 4 weeks and then a pulse of dexamethasone and vincristine.  And of course nightly chemo.  That is manageable.  We still have to worry about fevers and infections, as her immune system isn't going to be stellar, but way better than what we have gone through.
So as you can see, I started this Tuesday and just didn't have time to finish it until now.  Sometimes being home with Lucy 24/7 is more than a full time job.  We have been doing school at least 3 days a week, and I must say I am impressed with her knowledge.  At times, I was like "how do you know that?"  LOL  I think being the younger sibling is a big help.  Jack and her play a lot and I hear him teaching her things.  She is so ready to go to school.  She keeps asking if she can go back to her sitters, Lisa's.  I wish she could :(  I know she is starving for some social interaction from anybody.  She is growing up in a world of adults.  And she loves clinic days because she gets to interact with other kids.  Sad that she doesn't mind getting chemo because she gets socialization.
Lucy has had a pretty good week, wish I could say the same.  Sometimes I go along and life is fine.  I'm adjusting to the new normal, and then out of nowhere BAM!  I get hit with reality and play back in my mind the past 8 months.  I don't know what it is about a tragedy or when a family member gets sick, but it seems to strain relationships.  And we aren't the only one experiencing this.  We talk to other families in clinic or at the RMH and they too have experienced family dysfunction (more than normal of course) and its funny when you are in this situation as to who comes to help you or shows your support.  It's not always the people you would expect.  You would expect it to be your family, that is not the case, at least not in our situation, and surprisingly in a lot of cases as I have conversations with other families with a child with cancer.  Now don't get me wrong we have a few family members who are religious about checking in and calling.  But some don't at all.  And very few have actually called and asked if they can come over and see Lucy.  Same with some of my close friends, who I haven't talked to in months, BTW.  It really bothers me.  Is it that people can't handle it?  They don't know what to say?  Or is it that we are forgotten. I know that life goes on, and I am truly happy for that, but we are still living in this world and will be for 2 more years.  And people may get sick of hearing about it, but tough.  If you lived it every single day, what else would you talk about?  What do most people talk about? they talk about what goes on in their life.  Work, school, kids...our conversation happens to be cancer.  And while its not comfortable or fun, its reality.  And just shows you how deep we are in this for a very long time.  I am disappointed with some of our friends and family.  and amazed.  and admittedly, my feelings are hurt.  I guess its because as humans we are intrinsically worried about ourselves first.  I think that is why I was having a hard time sleeping the past week.  It all stemmed from Lucy's benefit at the Castle.  That was a big deal.  She was present, and was excited to see people, people she knew.  And she got her own "day", which is really cool.  And she had this awesome man fly all the way from California for her.  And we didn't have half the friends and family show up that we expected.  The majority were Team Lucy followers, who have become our extended support in all this.  If it was about the cost, I said I would have given them free tickets just to come and see Lucy.  It's not like she gets to be in public places that often. We are very picky about that and its based on her numbers.  Don't misunderstand me, there was some family and friends there.  Zach and I were amazed though at the lack of support from others.  Sometimes we feel like its just him and I against the world now.  and that can be a very confined space.  I don't mean to whine, but it's something that really bothers me.  And when I express this to other families, its the same with them.  What is wrong with people?  I know we are old news and all since this started a long time ago, but to us its everyday a new journey, and going to be for 2 years.  And sometimes its scary, still.  We had a close call last Friday.  I was a bundle of nerves all day and crying, and had very few people to turn to.  I just wonder where everybody is sometimes...that's all.
This morning I was checking in on some of our friends and their blogs and caringbridge pages.  I haven't been able to do that for awhile.  And after reading them this morning, I remember why.  One little girl had leukemia, and passed away in June.  It was horrible.  And her mom wrote a blog post today about that day.  She hasn't been able to do that until today.  She kept talking about her daughter's last laugh, and not realizing that it was the last time she would laugh.  And I couldn't imagine.  And then another mom posted her video of her son going under for surgery like he does every three weeks, and that brought back a flood of memories from when Lucy had her first major surgery to get her port installed, and to pull bone marrow and a hip sample. That was day 3 into our journey and I can't believe how vivid it is in my memory.  I still get a nervous stomach and almost cry. That is why I realized that I am not ready to read some of the other kids' journeys, not yet.  I wonder how long it takes other families to do this?  I wonder if I'm behind the curve.
Whew...that felt good.  I have had all of that stored up and now that I got it off my chest, I feel much better.  As I mentioned earlier, I have mostly good days, we all do around this house, but every once in a while, something whacks us out of the blue.......and I do want to thank those who do support us, you really do not know how much that means to us.  We can't even express in words our gratitude.  Thank you.

funeral etiquette

I had a friend whose husband died Sunday suddenly.  It was totally unexpected and his visitation was last night.  I had a huge amount of anxiety as I walked into the funeral home.  Wasn't sure why, but definitely couldn't breathe and was sweating profusely.  The man was well known around town and worked at State Farm for 40 years, so there were a lot of people who were paying their respects.  I went alone, and since the line was so long, I was trying to keep myself from passing out by "people" watching.  It really is quite amazing if you have ever stood back and listened to some of the conversations going on in that receiving line.  First thing I was doing, was thinking "what do I say".  I am horrible at these.  Saying "I'm sorry for your loss", just doesn't seem to cut it or isn't quite personal.  So instead of stressing over that part.  I did more listening.  You hear people talking about John and how horrible and tragic his loss was.  And they whisper.  As if everybody there doesn't know that he has died and it was unexpected.  And then you hear them whisper about his wife, which is my friend, and how they wonder how she will go on, and what she will do.  See this couple was going to retire at the end of the year together and start their retirement and travel together for the rest of their lives.  They were so close.  When I hear them whisper I know they are saying this out loud, but inside they are thinking "thank goodness this wasn't me, or my wife, or my family, etc".  I know this because I was thinking the same thing.  It's like when Lucy got cancer.  I know the whispers were about how horrible this was and how people can't believe it happened to somebody they know.  And I'm sure there were whispers about how and why this happened to Lucy.  Like speculations as to what we did as parents to cause it, etc etc.  Its not a bad thing.  It's human.  I wonder why people whisper about it though?  And what exactly is the etiquette when you are in a receiving line at a visitation?  What SHOULD you talk about?  Is it wrong to talk and laugh and be happy?  Should you solemnly stand there if you are alone and not make small talk with the folks you are standing with.  I was in line for an hour, mind you.  And then what about when you finally get up to the family?  I didn't know all the family.  I just knew his wife and step daughter.  So here I am again at a loss for words.  As I'm introducing myself to his other children, I don't know what to say.  Sorry for your loss?  Seems so impersonal?  Loss is an understatement.  I'm not good at these at all.  Then when I got to my friend and her daughter, I found the right words.  I hugged them both and gave them both kisses and told them how beautiful they were and that this situation just sucked, period.  I told her I have no words, so I just hugged her.  She said "you know, you are right...this does suck, its horrible".  Its like that was the right thing to say.  Because as I have found with our situation with Lucy sometimes people just don't know what to say.  And I've said it before, its ok to tell me that this situation sucks because it does.  And it's totally ok to think "I'm so glad this isn't my child", because quite frankly, I'm glad its nobody else's child either.  I wouldn't wish this experience on my enemies.  And I stood there hugging her, I was thankful it wasn't my me and my husband lying in that casket, and she was thankful too.  She told me to spend every last day with my husband as if it was the last.  And you know, she's right.  Not just with your husband, but with your children too.  Look what happened to us over night.  Things are going well, but in a moments notice things could turn sour.  Hell, I could walk out and check the mail and get hit by a truck.  You never know when its your time.  So hows come we don't all live for today?  I know that is one thing Zach and I have been talking about more lately.  We want to plan and be sure we are prepared for the future, but we also want to start living everyday like it could be our last with each other and with our children.  If today was your last day to live, what would you do?  Would you dwell on the fact that you are no longer going to be around?  or would you spend every second to make it count?
 Look at Steve Mazan, told he had 5 years to live and what does he do?  He works his ass off to try to make his dream come true. I see this with Lucy too.  She's sick, there is no doubt about it, but she is so happy.  She lives everyday and does what she wants to do. She laughs a lot.  She was swinging this morning and yelling "this is the best day ever".  And I was thinking "yes, little one, today is the best day ever for you and I".  And then I thought of my friend.  Today is NOT the best day ever for her.  The days, weeks, months ahead will not be the best days for her either.  I wish her nothing but peace and I hope she goes on to live her life to the fullest every day as her husband would want her to.

New Photos added to our album

I have added photos from the kids photo shoot in July as well as our Dying to Support Team Lucy benefit.  Enjoy
https://picasaweb.google.com/111718706691384103118

Team Lucy Merchandise

You can now purchase Team Lucy Merchandise from this blog.  On the left hand side is the description of products and costs.  :)  Spread the word!  We have limited quantities of the pink and gray shirts.

Lucy's Button

End of a busy week....and Reinduction 2!

So, we have the telethon behind us and now we have our "Dying to Support Team Lucy" benefit behind us too.  Not to mention, Lucy received the last doses of chemo for Reinduction 2. Now we just have to get through the next 4 days of dex, and we get a 6 week break from the steroids.  But she will start the nightly chemo again, so her numbers will probably crash and take a few weeks to recover.  And Jack starts school next Thursday, and I am planning on returning to work part time after Labor Day.  So starts our "new" normal...we hope.  We hope to not have any set backs or scary incidents like yesterday at Clinic.  Lucy had a reaction to the peg  chemo she got and well, let's just say it was a close call and we would like for that NOT to happen again.  It was horrible and I find I can't even write about it or what could have happened.  but it was a close call.
The benefit was AMAZING..I can't think of any other way to describe it.  Steve Mazan is one of the most wonderful people I have ever met.  He is very down to earth, funny, generous, and all while fighting cancer with the most positive attitude ever!  And the show...well, it was awesome.  If I could have, I would have watched it again the next day.  Zach and I related so much to a lot of it, and then it was just a show where you wanted to clap during parts, cry, and even stand up and shout.  I can't wait to see it again.  And the benefit itself was also so much fun.  It was very different than anything I have ever been to before.  The people that came were awesome and the Missfits ran it and took all the stress off of me, along with my friend Dana.  Farmaggedon did a great job with the music, and the Castle was beautiful, as always.  It it still on my mind today and wish I could go back and do it again.  I'll post pictures as soon as I get them.  Steve also was hand writing these buttons that started out as "I'm Dying to...." and then he would fill in your wish or dream.  It was great and so much fun to see what everybody had written down.  Lucy's was to see the princesses at Disney, Jack too wanted to go to Disney.  Zach wanted to be (ab)normal because he really doesn't like our new normal.  And he also was dying to own an el camino...HELP!  LOL  I blogged earlier about this, and by that night, I still didn't know what I was dying to do.  So Steve helped out and my button read "I'm dying to figure out what I'm dying to do".  I hear there is magic with those buttons. People say they seem to help their dreams come true.  And I don't know about some people, but I finally figured out what I was dying to do.  So my button was magic.  Now I need a new one.  I'm dying to make a difference in this world and live my life doing what I love.

Oh, the only thing I forgot to do was get Taco his button from the benefit.  He probably needes two. Taco is dying to be home alone with no kids.  And Taco is dying to become a pot belly pig ;)

Love to all......Shawna

As if a 3 Year old isn't challenging enough...

Whew!  It has been a while since I wrote, and quite frankly we have been busy.  Not just with the telethon, which was a HUGE success and thanks to everybody who supported the kids of St. Jude, and not just because of our benefit coming up this Thursday, but also because we have a 3 year old who has cancer who is taking a steroid that changes her personality at the drop of the hat.  As I type now, she is crying...screaming to be exact..over Well I don't know what its over.  She has been crying when she doesn't get her way, let me rephrase that, she does the floor flop.  And then if she's not crying, she's yelling at us.  If she's not yelling at us, she's picking fights with her brother or vice versa.  Then there is the food issue.  We are constantly making her something to eat.  She doesn't finish eating one thing before she is ready for another.  And she doesn't sleep EVER.  No naps, and then of course she will fall asleep around 11 at night and up at 5:30 or early demanding food.  Its has truly been exhausting.  Then add on top of that, the stress we have of the cancer and the side effects of the chemo.  We were suppose to get a chemo called peg (for short) today to round out her Reinduction 2.  And we were unable to receive it because her liver enzymes are through the roof.  Normal is somewhere between 14-56 and hers are in the 400 and 500's.  So of course I almost started crying.  I asked what this meant.  Does this mean her liver is failing to work?  They said that since she has been processing so much chemo through her liver, it has become inflammed.  Basically the liver is pissed at us.  So we just did one chemo today and go back on Friday to see if the levels go down.  If they do go down, she will get her peg, and if they go up...well, we didn't ask. I don't want to know, we will cross that bridge when we get there.  I'm frustrated right now. It's one step forward and two steps back.  And I'm worried, and scared, and angry.  I still get angry that she got cancer.  I wonder when that will go away.  and I don't think people understand how much we are still dealing with this and how this will be a part of our lives for 2 years and while its been running smoothly for the most part, there are so many risks involved.  People say "oh, she's doing better, and she's in remission, so what's the big deal".  Sometimes I want to say "WHAT IS THE BIG DEAL???"  My daughter has cancer.  And she receives more chemo than most adults that have had some form of cancer.  And she's 3!  and a 3 year old is a challenge in itself.  And its like at a moments notice, things can still change for us.  And I HATE that feeling.  I used to worry about my kids before, so its not like I was the best mom to get dealt a hand of a cancer kid.  I was the OVER worrier..you know the type.  the ones that take the kids to the ER for EVERYTHING..yep, that was me...with Jack it was much worse, Lucy I calmed down a bit.  Then not only did we learn about her liver numbers, but we also learned that the vincristine is affecting the way she walks.  So we have to add physical therapy into this mix. We aren't sure how often we have to do that yet, but its another day we have to do in Peoria, maybe 2.  So just as we thought things were going to go "normal", and Jack was going to go back to school, I planned on finally going into the office part time to work, things get shook up on us.  Its just frustrating and I'm venting....and I feel like crying.
I honestly didn't mean for this to be a rant or negative...but I have all of this pent up inside of me, and I need to get the anger and worry out of my head and onto paper so I can sleep.  I'm so tired.
We were watching the telethon back on TV, and I told Zach "wow, we look like a good family".  He said "you mean normal and like everything is good?"  I said exactly..what a great fantasy.  Of course later that evening, Lucy ended up throwing up on the floor at the school.  Then 3 more times at home.  And we couldn't keep anything down but sips of water, which led us to call the hospital to see if we needed to come in.  We were close...if she threw up one more time, we were inpatient.  Now we find out, it was probably the liver enzymes that made her sick.  So we had this great night and actually had fun, only for it to end abruptly and us to be worried sick and up all night watching over her.  And I'm not complaining about watching over her, its my job as her mother, but I'm just so envious of how our life was pre-cancer, and I miss it.  I still mourn it.  I wonder when that will go away too.  Then there is the guilt.  The survivor guilt.  We complain about our lives with cancer, when some parents would go back to that life in a heart beat if it means that they can bring their child back.  So I feel guilty when I complain.  And don't get me wrong, I'm very thankful for Lucy's treatment and prognosis, and St. Jude, just still have some of those issues with the disbelief that we have a child that has the "c" word.
xanax won't fix...hopefully.

Official Press Release

Dying to Support Team Lucy

Joke Productions and The Castle Theatre present “Dying to do Letterman” and charity auction to support Team Lucy on August 11, 2011, 6:30pm

(Bloomington, IL - July 16, 2011)  Joke Productions and The Castle Theatre will present “Dying to do Letterman” to benefit Team Lucy - Shawna Weber, Zach Weber, Jack Weber, Lucy Weber, and family dog Taco - in their fight against leukemia on August 11, 2011. 

Produced and directed by husband and wife team Biagio Messina and Joke Fincioen, “Dying to do Letterman," is a festival award-winning independent documentary that tells the story of stand-up comedian Steve Mazan's quest to beat cancer and achieve his lifelong dream of performing on "The Late Show with David Letterman." The evening will begin with a charity auction and raffle followed by the screening of the film and a Q & A session with Emmy Award winning Mazan. The Mclean Count MissFits will also be present to support the event.  Tickets can be purchased online at The Castle Theatre’s website:  www.thecastletheatre.com.  If you are unable to attend the event, donations can be made to Team Lucy at http://www.gofundme.com/Te am-Lucy.

Three year old Lucy Weber of Team Lucy was diagnosed with leukemia December 26, 2010 and has been receiving aggressive treatments at St. Jude’s in effort to beat what Lucy has called her “cancer bugs.”  After learning of Lucy’s story, Joke Productions donated a charity screening of “Dying to do Letterman” to help raise funds for the family.   The Castle Theatre, owned and operated by Rory O’Conner and Michael Gold, has donated their venue for the film premiere and charity auction event.

Team Lucy and the “Dying to do Letterman” Team connected on the “Cancer Sucks” Facebook page.  Each reached out to one another and Team Lucy became a huge champion of the “Dying to do Letterman” Kickstarter campaign to support the film’s quest for an Oscar.  The film was selected for the prestigious DocuWeeks, which provides one-week theatrical runs as well as advertising and publicity support, allowing "Dying to do Letterman" to meet the requirements for consideration for the 84th Academy Awards®.

They are currently focused on raising the funds to do an independent theatrical campaign to take Steve and the film around the country through their still active kickstarter campaign which can be accessed through the films website www.DyingToDoLetterman.com

About Joke Productions, Inc:

Led by this wife and husband team of Joke Fincioen and Biagio Messina, whom are best known in the unscripted world for executive producing "Scream Queens" on VH1, "Rhett & Link: Commercial Kings" on IFC, and the upcoming docu-series "Caged" on MTV.   Other credits include "Beauty and the Geek" and "Oh Baby, Now What?"  The duo earned their documentary wings under acclaimed filmmaker R.J. Cutler ("The War Room," "The September Issue") and honed their reality TV skills working with luminaries like Mark Burnett.  Their company, Joke Productions, Inc., is growing fast and Joke and Biagio have built a reputation for being terrific story tellers and hands-on producers.

About The Castle Theatre

First opened in 1916 as a 1,000-seat theater, the Castle was a jewel in the series of gems created by the legendary theater builders Balaban & Katz, original inventors of the classic movie palace.  For decades, the property served as one of the area’s premier destinations.

The Castle has been restored to its former glory with a $1.5 million renovation. Today the Castle opens its doors to the next generation of dreamers seeking entertainment along Bloomington’s Cultural District. With a diverse mix of live music, corporate, public and private events, the Castle is poised to once again strike the right note in the future of Bloomington’s cultural life. Together, the Castle and the Twin Cities have once again found the groove that comes from being perfectly in sync. 

The Castle Theatre is located at: 209 E. Washington Street, Bloomington, Illinois 61701. Phone: 309-820-0352, Email: info@thecastletheatre.com

Let the Dex be over already, along with the bad luck!

I thought I would share a typical day with you while Lucy is on dexamethasone (steroid).

6:30 am up and ready for breakfast....says she smells biscuits and gravy...I tell her she's dreaming. She opts for macaroni and cheese, string cheese and pepperoni

7:00 am she has to use the restroom and while on dex all her independence seems to be thrown out the window, so I have to take her to the bathroom, she throws a fit until I give in.  

7:15:  she's hungry again.....more string cheese

7:30:  getting her dressed for clinic day, major melt down over....well I'm not quite sure what we had a melt down over this morning...the day sort of blends after a while

8:00:  we head to clinic in Peoria, she's hungry.  I tell her she will have to wait until we get to Peoria.  She asks me to change the movie in the DVD player in the van

8:15:  she wants a new movie, so I change it

9:00 am we arrive at peoria.  She's hungry.  So she has a juice box, string cheese, and eye balls the bags of chips

9:30:  port access

10:00 back in the waiting room to wait for chemo to be ordered and numbers to come back, has another string cheese

10:30 she decides she wants to eat more.  She wants chips, but they don't have the kind of the chips she wants (she wants plain ones) here comes a dex fit.  It lasted about 15 minutes

10:45:  falls asleep on my lap while we wait

11:00 nurse comes out to tell us that they mixed the wrong amount of chemo for Lucy so they have to order it again from pharmacy

11:30 Lucy wakes up from short nap to say that she now wants the sun chips that were in the bowl when she went looking for regular chips..guess what?  no sun chips...fit proceeds

11:45:  we decide to try to hunt down some chips

12:15:  we find chips...she eats them and gets water to go with it

12:45:  chemo is ready

1:15 we are all done getting her vincristine and remove her access and are headed on our way, she says she is hungry

1:30 we are on the road to go home!  yea!  finally...we tell Lucy we will get lunch at home.

2:15:  decide to stop for a burger at culvers....feel something funny with the van.  Get out to check it..flat tire.  Awesome!  So we park it, and luckily are next door to a tire place

2:30 Zach goes to the tire place to see if they can just fix it there.

2:45: we wait inside culvers and lucy eats a cheeseburger, french fries, and drinks a milk.  Then she wants ice cream.  Then she has a fit because her ice cream is melting and she doesn't like how it tastes when it melts.  

3:15: we walk over to tire place to see if car is done.

3:30:  van is done...Lucy says "what are we going to have for dinner?"

3:45:  we go to pick up Jack.  He had stayed all night at gmas, and he was VERY tired and in a grumpy mood.

4:00: We pull into the drive way and both kids are already fighting, Lucy wants dinner, we tell her she needs to wait...temper tantrum...

4:30:  Lucy has pepperoni and a hotdog

5:00:  Lucy is still eating pepperoni and her hot dog

Jack falls asleep on the couch....so does Taco

6:00 Lucy has to use the restroom again....and won't go alone....I take her

6:05:  I put a movie on for the kids and sit down to relax, Lucy jumps on my lap, she's never too far away.  She follows me to the bathroom.

Whew!  That was just today....and I know I missed several bathroom trips as she has taken at least 10 today.  

And we haven't even started on cleaning the house, Zach is mowing the lawn, so the neighbors should be happy with that.  And not to mention, I have a project to finish up for work that I will work on after she goes to bed.  Which will be around 10-11 since she is on dex, she doesn't sleep.  

All in a day...all in a day...all in a clinic day...

Yikes! We are on TV

http://www.centralillinoisnewscenter.com/news/local/Lucys-Story-126555178.html?vid=a


Here is what was on the news this evening... enjoy.