Hot dog Carts,School, Fevers, and books! oh my!

It has been a long time since I updated my blog, and I promise it was for good reason...several good reasons.
First, we had our official first event for Weber's Weenies!  Not only was it a huge success, it was so much fun.  We never realized how rewarding it was going to be.  We worked hard, and the hours were long, but at the end of the day, we still had a huge smile on our face.  We worked all weekend at Danver's Days, and we could barely move by day 3.  I have done desk work for so long, I forgot how rewarding physical labor could be.  Plus we were in front of people all day long, how refreshing.  We got to talk to people and laugh, and we worked together without any major fights.  It was awesome!  I am so proud of Zach.  It was on his bucket list, and he was able to check it off.  And it will be nice to have some extra income to pay for the kids college, or pay the house off early, or just NOT have to ask people for money anymore while we are finishing our journey.  And we can now give back to the community.  How wonderful it feels to be able to give back to St Jude and other organizations who have done so much for us.

Second, School...which is going to lead to the third...Fevers.  Both kids started school! Yep! Read that right.  Lucy started Pre-K, and Jack started 2nd grade.  Jack is NOT a fan of school, so we were certain it would be a rough week, but surprisingly, he came home the first day and said he thinks he is going to love this year.  Let's hope that sticks!  And Lucy got on the bus for the very first time.  We were so nervous to let her go. Not only because of the cancer and low immune system, but also because it was our baby going where we had no control over her.  We have been with her nonstop for the past 19 months, separation anxiety for Zach and me was horrible.  Zach literally was sick the entire 2.5 hours she was at school.  She got off the bus and her first words were "BEST day EVER".  That made it all worth it. She said she loves it. She needs school too.  She needs to socialize with children her age who are "normal".  She needs a break from cancer, and nurses, and talking to adults only.  I hope this helps her.

  However, along with school comes germs, boogers, and head lice.  We know this, we prepared for this, but we didn't think she would get a fever the 2nd day of school!  I was heading out the door to go to a visitation for a good friend's husband who passed away, and reached down to give her a kiss and she was warm.  Got the thermometer, and sure enough 103.5.  Freaked me out!!  We packed a bag (I didn't even know what I threw in it), and we headed to Peoria, calling the doctor on the way.  When we got there, they accessed her port, got blood, and started IV antibiotics.  We had a night in the hospital.  The good news, no cultures grew in the blood sample, and the antibiotics seemed to come just in time.  We only had to stay one night and the most of the next day inpatient.  That is record time for us.  Of course, the guilt we felt was horrible.  We thought it was from school, but we had been at clinic that same morning, and she had "weird" numbers.  We had never seen her WBC and ANC so high before.  That really started to freak us out.  We were so worried about the "R" word because of what her counts were doing.  The doc said she probably had something brewing for sometime, and when she started dex, it just crashed her immune system and came out.  We were so relieved.  He said her body was reacting exactly how it was suppose to, so that was good to see.  Her WBC and ANC was reacting to whatever bug she had.

Needless to say, we kept her home from school until today.  And when we did send her, we were on edge all afternoon.  She was not only on dex (yikes!), she is probably has pretty low counts. Again, when she came home, she said she had the BEST time and loves school so much.  I know we made the right decision.
And last, but not least....my book is published!!! I am so excited.  That was a huge bucket list item for me.  I am a published author.  And it feels great.  It's book 1 of 3 regarding our journey.  Hope to have it on kindle, nook, and other e-readers by the end of the week.
whew!  that was an abridged version of the past 2 weeks.  I vow from here on out, not to wait so long to update!!  For now you can purchase the book here  if you are interested ;)

Ode to uncle Steve

This morning my uncle (my moms brother) passed away. He had been sick, so while it's always sad to lose a friend or close family member, it's never good to watch somebody suffer either. So instead of talking about sadness and how horrible and cruel life could be (since it was basically Vietnam war that made him sick), I've decided to share some things about uncle Steve.
If you weren't around Steve and he wasn't complaining about his pension, health insurance, or his mortgage, then something was wrong with him.
If he didn't stop at all his favorite locals for coffee and harass all the waitresses, then something was wrong with him. (mind you he went to 4-5 different places each day)
If he wasn't at the labor hall each day, something was wrong with him.
If he didn't go and buy his favorite licorice at farm and fleet, then something was wrong with him.
If he didn't come over to our house and say he wasn't hungry, and then end up eating what I made anyhow and act like I was twisting his arm to do so, then something was wrong with him.
If he didn't come visit and tease my children over something, then something was wrong with him.
If he didn't always ask about Zachs mom (he thought she was hot), then something was wrong with him.
Nine months ago, he had a massive stroke, and he stopped complaining, didn't tease anymore, ate whatever I got for him without hesitation, and only smiled when we talked about Zachs mom. He didnt get to stop by his favorite restaurants or the labor hall. We knew then, something was wrong with the uncle steve we had grown to love, grumpiness and all. I don't know what happens when people die, but I hope he's having coffee eating apple pie, and complaining that he never has to make another mortgage payment again, and I'm sure he's also bitching about his pension! As he should.....he earned it. Goodbye for now. Love Shawna

One person can (only) do so much

I saw the title quote on a button. Only instead of the only in parenthesis, it was crossed out. What a difference a word can make on ones point of view. It reminds me that one person can have a lot of influence to help others realize how much they can do. And when that happens, it's one group think idea I actually approve of. And yesterday, people proved that theory right.
Lucy Weber day 2012 was a HUGE success. And it was so because of all
The people that came together to help make it happen. First, I had people who baked for us. And when I say baked, I mean BAKED!!! We had so many baked goods to sell, my entire kitchen was filled. Couldn't fit one more thing on a counter or table!! Then comes the individuals who dropped off things to sell in the garage sale. There was so much stuff, we hardly had a walk way in my yard! And people were just putting stuff in my drive way. I'd wake up in the morning, and stuff was sitting there! Then I realized I needed tables! More tables!! And people dropped off their tables and even made extra trips back home to do so. Then the night before, I had people helping me set all the stuff out. Even after they left, I was up til midnight working on it and up at 5 am trying to finish. The next morning, people showed up and helped me finish and did a fantastic job!! One couple drove back home (25-30 miles) i dont know how many times to help get tables, then stayed late to help set up and was there bright and early the next morning and didn't leave til the sale was over. Never mind all the baking they did! One lady came in like a TLC show and merchandised and prices things better than I could have, AND she brought stuff to sell!! People were very helpful from sitting at the cash box so I could run and finish things up to helping disassemble playground toys to put in people's cars. And of course, I had people that took it upon themselves to make tshirts, huggies, decals, and even found donors so that 100% of the profit could go to St Jude. Then one team Lucy fan sat out in the heat all day to sell them!
Then let's not forget the people that came and spent their money. Showing up for support was awesome. And telling their friends or bringing them. People even brought their families out to eat lunch from our hot dog cart, showing amazing support not only for st Jude, but for our new business venture. And all while zach and I were sweaty and stinky!! Ha! Then we had good friends who ran errands to the store for us to get supplies since we miscalculated how many people would come to buy hot dogs!
Then of course, people helped to watch Jack and Lucy while we were scrambling. You all know from my posts, that is a huge undertaking.
We even had The Glitter Fairy come out and do tattoos. They have been a wonderful supporter of Lucy and St Jude, not to mention other charities. They have a mission to give back, and I love that.
See, we had a lot of people here, but it was the gesture of each individual that make it a success. Just by buying a baked good to making one, people were instrumental in the success we had yesterday. How successful? $1750 dollars to St Jude successful. And I still have money to count! And donations coming in. Just to give you an idea, of where the money is going. We raises enough to provide one child with chemotherapy for a day and another child to receive oxygen for 2 days. Those are the days we are saving lives.
I'm humbled, proud, and haven't had that much fun in a long time. So remember when are busy and stressed out and think you dont have any time. One person can make a difference and one person can do SO much.

Bucket list - check check

Something funny happens to your soul when your child gets a life threatening disease. You realize you are no longer invincible. I'm sure this also happens when you reach middle age or have your own near death experience. But I never thought I would realize it because my child had cancer. But it happened. It's happening.
Today is a big day for both zach and I and our bucket lists. He will open to the public for the first time his hot dog cart aka Weber's Weenies. And I am now the proud owner of 10 ISBN numbers which gives me publishing rights to my books, which is almost done being edited. Before I go on, I must give props to my friend who edited it. I knew she would be perfect because she does that sort of stud for a living and is an avid reader. But what I didn't tell her before she agreed to do this project, was I wrote it, and then I couldn't even go back and pre-edit because I couldn't read it. I was too scared and not quite ready to re-live some memories again. So god only knows what kind of mess she had to sort through. For that, I am forever grateful. And I promise to pre-edit the next one! Ha!
So I'm almost in tears, very excited, nervous, and sad all at the same time over this book. It was written because my child has cancer. I've always wanted to write a book and love writing, I just didn't think it would be non-fiction. I honesty thought it would be more fairy tale like. And I must say our real life is way better than any fairy tale I could have imagined. It's sad, humbling, funny, and has a fairy tale ending-I'm positive of that.
Now for zach!! I'm so proud of him. He talked for YEARS prior to Lucy getting sick how much he wanted a hotdog cart!! He is charismatic and will be a great people person. And people thought we were joking when we said we would open a hot dog cart one day called Weber's Weenies. Well no joke cuz I got one parked in my back garage!! And I've eaten so many hotdogs in the past month (testing products to find the best) that I know this is a reality. Come on out today and visit Zachs dream. And we are having a st Jude fundraiser! Because today belongs to Lucy weber. The mayor said so ;) and there wouldn't be a Lucy Weber without St Jude (and some hard work on zach and my part, but that's another story)

Breakdowns

Today, like my last post, is all about me. Well me and my other cancer moms. It is noon, and I've had three meltdowns. Not little meltdowns. Break down bawling meltdowns. So bad the kids were staring at me like what the hell is going on.
It is a compilation of many things. First, I wake up and am not only in extreme pain (I did crossfit on Saturday so that's another story for another day), but I'm having vertigo. Not horrible, but it's lingering. I get vertigo so bad sometimes I'm literally throwing up all day and in bed. So besides feeling that "twinge" in the back of my head, I'm also having a slight panic attack. I've got way too much going on today for this to turn bad. So I grabbed an anti-anxiety med and tried to have my coffee.
Well breakdown number one came
After the kids decided to have a food fight and spit ball contest during breakfast while I was trying to work. Apple Jacks, cheese, and of course spit balls all over the floor along with my vertigo caused me to break out and yell at the kids and send them to their rooms. They went. Laughing all the way.
After their time outs, I had them clean up their mess. Well thats where breakdown number two occurred. They started walking around with their pants pulled down so their butts were hanging out. And of course not cleaning. I felt defeated. Again, I sent them to their rooms (still trying to work
And fight off the dizzy spell). I lost it and started bawling. Bad bawling. As Oprah called it, the ugly cry. Those kids sat there and stared at me like what the hell are you doing. They quickly moved to their rooms as I finished crying. I then turned to food. Evidence of the entire bag is pictured below.
Then zach walks in from work. He's watching me devour my pretzels all while bawling and he sees the cereal and cheese all over the floor. He comes to my rescue and promptly takes care of the kids. They get dressed fast!! Lol and go outside.
Breakdown number 3 finally occurs when I tell zach, we need a vacation. Just the two of us. And for more than a few hours, I mean days. Then I try to tap into babysitting resources for that and it's an epic fail. This time, I did the double ugly cry. You know where you can't breathe and snot is just running down your nose. Just the fact that I feel so isolated, really sucks. No escape. Not even for 3 days.
So I turn to my cancer mom group. And post the picture of my demolished bag of pretzels. They make me feel so much better. They relate, post pictures of their own meltdowns, and make me laugh. Thank goodness I have them.
I decide screw the vertigo, I'm taking a meclazine. I hate taking them because they make me so tired. But I was done fighting the dizzy spell, I succumb. Then I turn to making lunch. Mind you the kids haven't come inside!! Lol
And now I feel a little better. A little from the medication, a little help from my friends, and I actually made a new recipe that looks like the picture!! That is satisfaction!! Nailed it!

Branding, Choices, Purpose and Vaginas

I have several things that have compelled be to blog about these next few topics. Some of it personal, some of it professional, and even some related to Lucy and childhood cancer.  And as you all know my ADHD mind is probably going to jump all over these topics back and forth, but as always, I promise to tie it all together in the end ;)
Ok, so let's talk about branding. What is branding?  Well, its the image of a company or organization, its how they want to be seen by the public.  For example, St Jude has wonderful branding. They have a logo, an image, and this "thing" that they want people to always associate with them.  That would be curing children, saving lives.  Who doesn't think of that when they see the St Jude logo?  It takes a long time for an organization to earn the right to have their brand marked or coveted.  They usually are in business for many years, are a respected company, and have individuals who are faithful followers.  Some of the most popular brands are known simply by looking at colors of their logos.  Morgan Spurlock did an entire documentary on this.  It was fascinating.  And it was interesting in that the company he wanted to be his biggest sponsor was concerned that Morgan's Brand may not portray them in a good light.  Yes, you heard that right.  Morgan's Brand.  Each of us have a brand if we work hard at it.  You have to brand yourself now a days in the work force, and even in some community services areas.  You want people to associate certain things when they think of you.  I have learned all about branding at work.  I have been told many times that perhaps I need to work on my brand.  Which basically means, my brand doesn't always fit in with the company I work for. I tried that for a very long time, and of course, I didn't succeed.  And I felt like a failure.  Until today.  Today for some reason or other reasons, I realized why I didn't succeed at changing my brand.  That would require me changing a large part of who I am, and what I stand for and believe in.  Essentially, it requires me to change things that are not negotiable.  I like who I am.  And I have done some wonderful things as "me" for many companies that I have worked for and organizations that I have volunteered for.  I will admit, my approach is unorthodox ed, but I have produced some pretty amazing results that have saved millions of dollars.  Just yesterday, I was listening to NPR about a woman who wrote a book about, women and feminism. She definitely had her own brand. It was witty, a little crude, but definitely in your face effective, and hilarious.  She said something that I found to be so powerful. She said (and I'm paraphrasing) that its a scary world to most men when woman not only have opinions, but when they speak about them and use humor. She said that is a deadly mix and can be seen as threatening.  She was referencing when a delegate from a state (woman) was on the floor talking about women's rights and abortions.  She said the woman said "And thank you Mr. Speaker for having so much interest in my vagina and its reproductive abilities".  gasp!  She said vagina! and she was funny with a strong opinion (mind you, I'm not arguing the point of abortions, I'm simply using a reference).  She then had a brand and was banned from speaking on the floor.  It is relevant story because it reminds me of my own brand and advice I got once.  We had a meeting at one of my places of employment for all of the women in management.  It was something that we couldn't do publicly as it was frowned upon to have a "woman's" group.  Anyhow, we were talking about child birth and periods and the things that woman talk about.  I remember telling the story about when Lucy was born.  The nurses asked us if we had any questions since this was our second child.  Zach said "yes, I do.  I'm not sure about the whole "cleaning the vagina" thing because we have a boy".  Everybody had that nervous giggle when I told the story, and I could hear a gasp.  I was like "Really?  you just talked about your periods and you are gasping at the word vagina? Especially in the context I gave it?"  Mind you I didn't tell them that, merely thought it.  Of course, later on, guess who got a talk to about her "branding".  Yep!  me!  I was told that it was inappropriate to use the word vagina in that setting.  As much as I disagreed, I thought ok, so I won't do that again.
It occurred to me as I heard that woman speak on the radio yesterday that I was sacrificing my strength and compromising what I stood for the moment I agreed to submit and apologize for using the word vagina in front of a bunch of women who were talking about their periods and PMS.  Mind you, this happened years ago, and it was just yesterday that I realized this. Now is my brand vaginas?  No.  Read on, I'll touch on that in a bit.
Which brought up another topic of Choices.  It reminded me of what my Dale Carnegie teacher said to me.  He said that if your goals, mission, and brand doesn't match up with the company you work for, perhaps its time to find a new company.  Interesting because when I was offered a job at the company I am speaking of, I was also offered another job through another company in a role I would have loved - event and marketing coordinator.  They even had a bidding war over salary.  Guess what I chose?  The money.  I will never choose money again.  The irony is, look what I am doing for free anyhow.  I fundraise, market, and schedule events for St Jude and child hood cancer.  Lesson learned.
Which leads me to purpose.  I'm a deep thinker, always have been.  So this little NPR interview about this woman who was talking about feminism sparked up all of these feelings regarding branding, choices, and what my purpose in life is or is suppose to be.  Does everything happen for a reason?  Is it coincidence that everything came full circle?  I don't know the answers to those questions, but I do believe I was sent down this path for a very specific reason.  And I intend to Brand it.  I intend to use what resources I have, what brand I have acquired, and what knowledge I have learned to Brand Gold.  I promise I won't throw out the word vagina all the time, but I can't promise that it won't come up.  Why?  Because its a word in a story that was absolutely hilarious about Zach and his role as parent to a female infant. and because that is a part of who I am and a brand that I have worked on my entire life. I like who I am, I do not intend to change, and I now have a mission that has so much meaning for me, I feel as if everything has happened for the exact reason it was suppose to.  All over a 6 letter word.  Amazing.

Team Lucy Presents

Team Lucy Presents:

Support the Gold!

Garage sale
Bake Sale

Lemonade stand ran by Jack and Lucy

Hot dogs sold by Weber’s Weenies

Team Lucy Merchandise

All Proceeds benefit St. Jude Children’s Research Hospital

August 11, 2012

417 Priscilla Lane, Bloomington, IL 8am-4 Pm

Defeated

Some days/weeks are worse than others, and today is one of those days. I feel absolutely defeated.  Lucy was on dex last week, so we expected for her counts to double, and they didn't'.  Matter of fact, they plummeted....again....they seem to have been doing so well, and now they are always dropping keeping her in a constant neutropenic state.  Which of course limits all options of doing anything.  And after the week we had, we were contemplating doing a spur of the moment family vacation this weekend, just because.  Just because we feel we need OUT of this house, out of this town, and even if for just a couple of days- pretend cancer isn't preventing us from doing things.  So that shot that idea right out the window with her ANC only being 380.
I think I'm still sad over the whole Jack thing.  I know we did the right thing, but it has definitely caused some tension in this house.  And when there is tension, we all fight.  Zach and I argue more, and the kids seem to be more on edge.  I think we need a break.  I wish we could take one. If I could, I would say "I declare this a no chemo, no cancer week"!!!  lol
I think we have some things worked out with Jack.  We had a good friend that he trusts come over and visit him today and talk.  We are going to set up a game plan for him to express his feelings to somebody other than us (because if you all remember...Sometimes, parents just don't understand). So I feel good about that now.  Better, anyhow.
sigh...I don't really have a lot of insight today.  Just felt like maybe if I wrote out the word defeated, it would get out of my brain and I could move on.  Let's hope.....