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.