A Big Idea From Lemons

I use Facebook a lot.
I like to read what's going on in my friends' lives.
I like seeing pictures of people's kids, pets, vacations.
I also like seeing what others are doing for the world of childhood cancer.
Fundraisers, magical gifts given to sick children, celebrity endorsers.
But it's the parents of children who have gone through the horrors of cancer who are the real go-getters.

Parents who have waited in the other room while their child receives radiation to their brain or spine.

Parents who watch their child become transformed by medications.

Medications that are simultaneously killing them and curing them.

Parents who lose sleep over the fact that this life their child is living is NOT the life they had envisioned for them.

I am one of those parents.

And it was on Facebook that I saw that another state in the U.S. had a license plate that it's citizens could purchase to raise money for childhood cancer research.

This license plate had raised MILLIONS of dollars for the cause.
I looked at the Illinois Secretary of State website.
There are license plates for breast cancer, ovarian cancer, autism, baseball teams, college teams, environmental plates and pet license plates.
But nothing to help raise funds for childhood cancer.
A group of diseases ranging from leukemia to brain tumors.
A group of diseases that kills more children than any other disease.
More than diabetes, pediatric AIDS, asthma, and cystic fibrosis combined.
The questions started rapidly popping up in my head...
Why don't we have a childhood cancer license plate in Illinois to raise funds for research?
Who can I ask about this?
Who do I know that would know what to do?
The answer appeared in my high school Junior Homecoming date and long time friend Mark.
The guy who brought my daughter a cooler full of snow to play with in her hospital room when she was fighting against cancer during a blizzard.

He's involved in politics in Springfield.

I asked him how I would go about doing this license plate thing.
He quickly replied with "I'm on it."

Since that day that I saw a Facebook post about another state's childhood cancer license plate my daughter and I have had the opportunity to meet Illinois State Senators, Illinois House Representatives, and the Governor himself.

We have been given a chance to give back to the science and doctors who have made it possible for our daughter to be in remission.

To give us hope for her future and for all children with cancer.

We wish we had never been put into this situation.

We wish our daughter hadn't been diagnosed with leukemia.

But she was.

And she's still here.

And we are trying to do great things with this sack of lemons she was given.

When life gives you lemons, you can make the most amazing lemonade around.

Viva Las Vegas

Part one in the series "Music Mondays in May" for my blog group Homesteaders & Homeschoolers.

Music has always been a big part of my life.
My father is one of those young dads.
He was twenty when I was born in 1971.
Because of his young age, my young life was submerged in the music that he loved.
One of those music loves was Elvis Presley.
My mom's sister, Jeanne, was a huge Elvis fan as well.
She even saw him live in concert not too long before he died.
Something I was always jealous of...come on, ELVIS! She saw THE Elvis!

In college my group of girlfriends were huge Elvis fans as well.
We knew the words to all of his songs and weren't afraid to belt them out at large decibels from our house on 916 Hovey Ave.
Graceland has been visited by all of us.
Las Vegas has been a travel destination for many of us since it's the land of Elvis Impersonators.
It's always fun to ride in an elevator next to a guy with huge sideburns and extra wide, dark sunglasses while trying not to snicker because Elvis is standing next to you.

I met Chad in the Fall of 1999.
We had a quick courtship and knew we wanted to do something out of the ordinary for our wedding.
We didn't have a lot of money so we knew we wanted to combine our wedding with a honeymoon.
A two for one deal.
Las Vegas sounded like the right place for us.
And when you think of Las Vegas and weddings you usually also think of Elvis.
It was decided.
We would get married in July in Vegas by Elvis.

Why we decided on July is beyond me.
Wait, I do remember...
my mom kept telling me "this date and that date won't work for me because of work."
Sigh...
So, the middle of July in the desert it would be.
I later remember declarations of "MY EYES ARE BURNING OUT OF MY HEAD!" from wedding guests because of the intense heat of the day.
Don't get married in the desert in July people.

This being the era before smart phones, we had to use a fax machine to get copies of restaurant menus from various places in Vegas for our "after the ceremony dinner."
We called and emailed a few different Elvis wedding places.
We picked the right place.
It was off of the strip and seemed like a real genuine place.
It was family owned and as I sit here and write this, I know we picked the very best spot.

Viva Las Vegas Wedding Chapel was where our wedding was held.
Thirty members of our family and friends made the trip to Las Vegas to be with us on our big day.
My niece was five years old at the time and since I wasn't going to have a flower girl, she instead became the camera girl.
She was in charge of handing out disposable cameras to each guest...remember this was before smart phones.
My girlfriend Tina stood up with me and Chad's brother Chris stood by his side.
I wore a black dress, 'cause I'm unconventional like that, and Chad wore shorts.
Elvis was great! (Elvis was the owner, Ron, and a super great guy.)
He sang three or four songs ( I forget the exact number now since it went down in 2000 and the heat of that day melted some of my brain away.)
He ended the ceremony with Viva Las Vegas and had the arm swings, lip curl, and leg lunges to go with it.
His white sequin suit filled the room with sparkles and was only overshadowed by the large amount of laughing, singing, and cheering by our guests.

It was a fantastic day and the start to a great journey with my hubbie Chad.

My best friend.
My source of support in what has become a difficult journey in our days as parents.
He makes me laugh and doesn't care when I fart in bed.
Well, he may care about that.
But all I have to do is starting singing Viva Las Vegas and all is forgiven...

Read more "Music on Monday" from...
Carla
Melissa
Laura

Doing It All

Days and weeks can go by now and everything seems ordinary.
The girls go to school.
Dinner together every night.
Zoe has a test on telling time on an old fashion clock with hands.
Dance and piano lessons.
The only thing that really makes Zoe seem different nowadays is her hair. Or lack thereof.
So, when we have days where childhood cancer, specifically Zoe's journey through leukemia, spills open in front of us we become exhausted.
Again.
There's my overwhelming desire to give back to those that have saved my daughter.
Ways to do that are sharing our story with everyone.
Her story.
Via pictures and news stories.
All to bring awareness to the affects of childhood cancer and what we can do to help ease the pain of treatments, to find cures.
I have no intention of exploiting my daughter and her disease.
Her struggles.
Her dreams.
But if people don't SEE things like a little girl without hair, a little girl that has had to endure chemo, a little girl who has had to overcome tremendous turmoil, a little girl who misses her friend who didn't survive cancer, they just don't care.
People are visual creatures.
Photos and words have impact.
And if we can give back somehow to the doctors and the medicine that have saved our baby, we will do that.
Zoe may not remember a lot of what life was like during the initial onset of her cancer.
But we are providing her with memories of what she has overcome.
We are providing her with memories of the good we are trying to do in this big bad world that has allowed her to get cancer.
Memories of amazing encounters with people we wouldn't meet if cancer hadn't entered her world.
Zoe met the Governor of Illinois.
And a State Senator.
When she was eight years old.
The Governor got down to her eye level and spoke to her about her braveness, her good heart, and her courage to help others.
A memory that will last forever.
We want her to have these impressions in the forefront of her mind.
Not always needles, nausea, surgery.
We are giving her hope for the good she can do in this world.
Because she can do it all...

Memories and Birthdays

Time can help things a lot.
A lot in terms of coping with the past and the trauma of living through a nightmare called childhood leukemia.
Watching your child change so drastically.
Dealing and struggling with something she doesn't understand.
It's been over two years since Zoe was diagnosed and it's gotten easier to remember the hard truths we lived through. 
It's also her birthday next week.
We can celebrate her being a part of our world yet another year.
And each year things get easier for her. 
Here's another part of her story...our family's story... 

We were living a normal life. 
Then the bruises showed up.
And the lethargy.
Something wasn’t right and my mom gut told me that I needed to call the pediatrician.
The diagnosis came fast and hard.
We were told to go right away to a hospital in the neighboring town.
They had a pediatric oncology doctor and we could only go home to pack a bag.
No time to think.
No time to say “we want a second opinion.”
When your child is diagnosed with leukemia there’s no time to second guess anything and you do as you are told.
Upon arrival at the hospital, we met the man who would be in charge of saving our daughter’s life.
She skipped to the bathroom to change from her school clothes into the traditional hospital gown one is given upon check in.
This one had lots of color and cute pictures of animals, though.
Something cheerful to wear in a hard cold place.
He later told us that her skipping surprised him.
Her blood counts were so high and off the mark that he predicted she would come crawling in, too tired to walk.
I later looked at this as a sign of hope.
She was strong.
She was a fighter.

But at the time, Chad and I were in a numb place.
Why were we here?
Why was this happening to our freckle-faced girl?
Is this all a big mistake?
Are they going to recheck her blood and see that it was a lab error?
Surely it's just a lab error.
We met two nurses and they would become very close to our family very quickly.
I don’t know if they got close with all of their patients.
I’m glad they were there that day.
I remember them asking us lots of questions…"how old is she, what are her symptoms, does she have any allergies?"
But, the thing that I remember the most was when one of the nurses said to me “we will be putting her under anesthetic right away to put the PIC Line into her arm.”
The tears immediately welled up in my eyes, making the room even more of a blur than it already was.
And then the look she gave me, reassuring me that she would be okay under anesthesia.
What stung me the most was knowing my daughter would be poked and have things attached to her little body and there was nothing I could do to help her.
There was nothing I could do anymore to help her.
Her life was out of my hands and I didn’t know if I would ever get it back.

Just A Glimpse, Please...

Do you ever really look at someone and say, "I wonder what it's like to live in their body?"
I do that a lot.
I see my kids and I wonder what it's like inside there.
To fully experience what they see, feel, smell, think.
I do the same to my husband.
He's a man, I'm a woman.
Big differences, ya know.
What's it like to be in his body?
To walk with his gait.
To speak in his voice
To have no hair on my head, but hair on my chest.
I know him really well, but I'll never fully know him.
With Zoe, she's been a long chapter in Alice Through The Looking Glass.
Her world has been so bonky, out of whack.
She's just now starting to really play with her sister.
To use her imagination in it's fullest form.
To show and be more than just her inner self.
What's been going on in there for these last few years?
Has it all been a haze, full of mashed up ideas and memories that will never be realized?
She doesn't remember a lot of things.
From the past, I mean.
I want to crawl in her ear, see through her eyes, taste with her tongue.
Being John Malkovich is a movie I can connect with, for sure.
I don't want to stay, it will be a short visit.
But, alas, I'll have to be content with living in my own self and being an outside observer.
To my kids.
My husband.
You.

Chemo Is Over!

This kid has reached THE milestone! 
She is done with chemotherapy.
Just 2 years, 3 months, and 2 days after diagnosed with leukemia at the age of 5.
After countless days in the hospital.
After having radiation to her brain.
After three surgeries (with one still to go).
After losing her hair twice.
After breaking her ankle from poor bone health.
After an allergic reaction to chemo that landed her in ICU.
After watching her friend Jake lose his own battle with cancer.
She is done.
She is done with chemo.
She has made us wordlessly proud.
She has a strength beyond words.
She is our hero.

She begins monthly blood tests now.
Every month her blood will be checked to make sure it doesn't contain any leukemia cells.
Every month her mother and father will get an ulcer waiting for the results.

We have so many hopes for her.
Dreams, hopes, wishes.
All for a normal life.
A life without drama.
A life without medication.
A life without pain.
A life with all that her heart desires in front of her to take.

 

Zoe and the Slumber Party

I'm a firm believer in luck and I find the

harder I work, the more I have of it.

~Thomas Jefferson

Zoe is going to her first slumber party this Friday.
It's what girls do.
They get together and sing and dance and giggle and it's a normal passage of girldom.
And I'm a nervous wreck.

It's not the sleepover part.
It's the invisible germs that are everywhere part.
Yes, I know these germs are everywhere...school, the store, dance class, piano.
I'm overreacting.
I just hope something doesn't sprout within her body that her shut down immune system can't even begin to combat.
She has a spinal tap on Wednesday. Could be her last.
We aren't 100% certain if she'll get one in December.
I don't want this to get screwed up because of some germs.
I just have to keep chanting "she's almost done, she's almost done, she's almost done."
I'm hoping once chemotherapy stops in December that her immune system hikes back up to normal levels and her blood doesn't go into blast mode which is what happened before.
Blasts are bad people.
Blasts in your blood are bad.

So I hope she enjoys hanging with her girlfriends and giggling about boys (oh, geesh!) and dancing to Katy Perry.
I hope she remembers how her parents started letting their guard down and allowed her to be like everyone else.
I hope she enjoys this life she's been handed.
She's one of the lucky ones.
And we hope she stays lucky. 

Oh, and she got glasses. 
She just wears them at school when they are using the board.
They sure do make her look smart, huh?!



Don't Forget To Believe

I believe in pink.

I believe that laughing is the best calorie burner.

I believe in kissing, kissing a lot.

I believe in being strong when everything seems to be going wrong.

I believe that happy girls are the prettiest girls.

I believe that tomorrow is another day and I believe in miracles.

~Audrey Hepburn

A Good Drug

Leukemia has been in our lives for 22 months. You would think we would know what's happening by now. Know the ins and outs and feel the ups and downs before they happen. But that's not how sickness happens. It jumps out from behind a bush scaring the crap out of you yet again. You know it's there, but BOO, and you are on your back down for the count. Zoe has been feeling so well for so long. But a virus has crept into her body and started to wreck havoc. The infection fighters in her blood are practically non-existent. A fever attacks followed by waves of nausea. She moans and cries and as a parent you wonder when this will all be over. Why this happened in the first place (even though you vowed to stop asking why.) When will this whole ordeal be a fuzzy and wonderlandesque memory? Then we had a breakthrough this afternoon. A guitar and a sweet girl singing to Z in her hospital room woke her up. Brought her out of her sleep and she was back for a while. Talking and smiling and in a peaceful state. I could have listened to that girl sing and play her guitar all day long. The serene feeling she brought to this room was indeed medicinal in quality. A drug from the heart to the heart. Without the nasty side effects.

A Friend At Camp

Zoe is at summer camp.
We pick her up tomorrow morning.
I always wonder if it's like the movie Meatballs.
I hope it is.
I'm optimistic that she has a fantastic time every year she goes.
She never calls...tears.
She can go to camp every summer until she's 18.
In a few years Gigi can go with her.
Yes!
When Zoe is too old to attend camp we hope that she decides to volunteer there during the summers that she's home from college.
I never went to summer camp.
I take that back...I did go to a local girl scout camp for a weekend and hated every minute of it.
But I got my picture in the paper.
That was cool!
Back to Zoe...
Zoe wouldn't be going to camp if it weren't for the crappy cancer.
But she has it and she goes and we are so ecstatic that this experience is available to her.
To help her feel like she's a regular kid.
Not a kid who has a peach-pit sized bulge in the middle of her chest from a port.
Not a kid who has unnaturally short hair.
Not a kid who gets chemo five days after camp is over.
When we dropped her off I took a picture of her outside her cabin.
A thing I do.
This year she is in Heron Cabin.
Last year was Proctor.
When I came home and looked over the two pictures I had taken that morning I noticed a "light" next to her.
Setting the scene now...
It was warm that morning.
I didn't use a flash.
We were in a partially wooded area and there was a car parked not too far away.
It's a strange finding on the film.
This light looks friendly to me, though.
Someone may be with her at camp.
Ready to watch over her and see that she enjoys herself.
I don't know who it could be.
But I felt better knowing she wasn't alone.

Longing For A Lanai

Hawaii.
I've never been there, but I'm gonna move there.
I'm going to learn about poi and macadamia nuts.
I'm going to shower outdoors.
In January.
I'm going to learn how to make leis and I'm going to learn the magnificent history of the islands.
I'm going to drive my kids to school in a sidecar attached to my motorbike.
I'm going to chaperone their classrooms on field trips to active volcanos.
I'm going to have a tree filled backyard with a path to the ocean intertwined amongst the Kukui nut trees.
I'm going to walk barefoot across my yard to get into the ocean.
I'm going to lounge on my lanai instead of my porch.
I'm going to learn to surf.
Well, maybe not that.
Chad is going to wear tropical shirts and flip-flops to work.
I'm going to raise beach kids.
Who have abnormally light hair and sun-kissed skin.
I'm going to stock up on SPF 75.
I'm going to watch my husband cook over an open fire in our backyard.
Cooking freshly caught ocean fish with a side of Spam.
I'm going to become friends with Roseanne and talk goats.
She'll love Yogurt and Tulip.

But before I do all of this I need to win the lottery.
And find a way to ship the horse that far.
Boat or cargo plane?