Friday, September 9, 2016

THIS is my awareness

It's September again.... and also pediatric cancer awareness month. I thought maybe this year I'd let this September go by without posting anything...without writing .... but... I just can't. 

I can't sit back and let this month go by without calling attention to pediatric cancer.

Below is a speech that I gave at a fundraiser this past June -

THIS is my awareness.

My name is Kristen.
Some of you know me and my family, some of you don’t. 
I grew up in the town next door.

We were a regular family… 2 parents, 3 kids, a cat…everyone was happy, for the most part and healthy.
We lived a regular life… just like everyone else.

In 2007, my twenty-two year old brother, Charles, began complaining of shoulder pain.  At first it was minor…assumed to be a pulled muscle, possibly a weight lifting injury….but as time passed, the pain continued to get worse.

After many doctor visits, tests, x-rays and finally an MRI – A large tumor was found on Charles’ shoulder that we were told was consistent with a lymphoma or a sarcoma.
After more testing… Charles was diagnosed with a rare, pediatric cancer called Ewing Sarcoma.

Only about 300 kids and young adults are diagnosed with this specific cancer every year.  
Charles’ diagnosis came on November 7, 2007 – also his twenty third birthday.
Not exactly the birthday present he had hoped for.

When I was first told that my brother had cancer,  I thought,
“Well, he’ll do some chemo and he’ll be fine.”
I mean, that’s what people with cancer do, right?  Some chemo… and the cancer goes away and everyone lives happily ever after.

Obviously, I had zero experience with cancer – never mind a pediatric cancer called Ewing Sarcoma.
So I did what anyone else would’ve done… I googled it.

Google is everyone’s best friend until you hit on Web MD.
I learned that Charles had a 70% chance of beating his cancer.  


Well, that’s better than 50%, right? But if you give a 70% a letter grade,  that’s a C-
And in school a C- is below average. 
But still… 70% seemed good to me.   
Then I read further.

If the cancer had already metastasized, the chance of survival decreased from 70% to 30%. 
In Charles’ case… by the time he was diagnosed, the cancer had already traveled from his shoulder to one teeny tiny spot in his lung. 

Still, having zero experience with anything like this… a 30% chance meant there was still hope… SOMEONE had to be in that 30% survival group, right?

That someone was going to be my brother.
Charles went in fighting to be in that 30%. 

He endured months and months of chemotherapy and radiation treatments, lengthy hospital stays and a radical surgery to remove the tumor and most of his shoulder and scapula that left him with very little range of motion in his arm.  

Even after almost a year of treatment, Charles was only cancer free for about 9 months.  

The cancer returned in his lungs. He was told that any treatment moving forward would not be a cure, but would only give him time.   

Imagine that… at age 24 he was told,
“We cannot cure you now… but we can give you a little bit of time”

Desperate for more time, he continued with more treatment for about another year hoping that in that year a miraculous breakthrough in cancer research would happen.

It didn’t.

Charles remained cancer free while he was being treated.
Cancer free but at a cost. 

The cost was… living. 
He wasn’t really living. 

The treatment that was keeping him alive was also making him feel so sick that he could barely get off the couch most days.
So he stopped.  

In April 2010 - He stopped all treatment –3 months later, the cancer was back in his lungs.

He was able to enjoy a full, fun summer with his friends and family –but by September he was hospitalized for the last time and he lost his battle on October 22, 2010 -Just two weeks shy of his 26th birthday.  

He was NOT in that 30%.  

Not only was HE not in that 30%, but neither were the three other young men, roughly the same age, all being treated at the same hospital for the same type of cancer.  
All four of them are gone now.

My brother was one of a kind. He had a smile that could light up a room – and a laugh that was just contagious.
Charles had a way about him that put everyone at ease …and his heart, he had the biggest heart.   
We feel his loss EVERY. SINGLE. DAY.

There are moments which mark your life… moments when you realize nothing will ever be the same and time is divided into two parts, before and after.

Losing my brother is one of those moments.

When you lose a sibling, you don’t just lose that sibling… you lose the family you once knew –

I didn’t just lose Charles, I lost my parents and my older brother too. 

They are forever changed. We are ALL forever changed.

The summer before Charles died we went on a family vacation to the beach…all of us.  On our last day there we took family photos.   We all smiled and laughed… but deep down we all knew that this would be the last… the last family photo we’d take with my brother.  And it was.

It has been almost six years since he died and we haven’t taken a family photo since.  It’s not something we talk about… it’s just doesn’t feel right without him.

Every year on November 7th, Facebook reminds me that it’s my brother’s birthday – as if I could ever forget. 

On that day, every year, my newsfeed is filled with photos of my brother shared by friends and family in his memory. 
The photos never change - and they won’t.  We won’t get new photos of him.  
He is forever 25 years old.

Social media also reminds us that all of Charles’ friends have moved on.
While he is forever 25… his friends are now in their 30’s… married with careers and children.  
We see wedding photos, baby photos, new house photos.  
My brother never had that opportunity. We never got to see what he would have become.  
And that hurts.

10 years ago, if you told me that I’d be up here talking about pediatric cancer, I wouldn’t have believed you.  

Before my brother got sick, I had no idea that pediatric cancer was even a thing.  

Not one second of my time was spent thinking about children and cancer. 

Not only did it never occur to me that my little brother would be diagnosed with a pediatric cancer, but it never EVER crossed my mind that he would DIE from a pediatric cancer.   

I had no idea that these things were even happening all around me.   
Now? I couldn’t ignore them if I tried.  

Obviously I’m aware now.  But at what cost? It took my own brother’s death to make me fully aware of the pediatric cancer crisis around us.  

We talk about being aware…spreading awareness.
In September we participate in pediatric cancer awareness month… and most of us think that by changing our Facebook profile picture or posting a meaningful quote about pediatric cancer, that we’re doing our part.  

But really, is that enough?
Not when only 4% of government funding is solely dedicated to childhood cancer research.

Every day – 43 children in the United States are diagnosed with cancer. 
12% of the children diagnosed with cancer DO NOT SURVIVE.  

If you have children, if you have nieces, nephews, grandchildren, students, friends – so basically all of us -this statistic should frighten you. 

It frightens me … it keeps me awake at night sometimes.  

The average age of death for a child with cancer is 8…causing a child to lose 69 years of expected life. These children could be our future leaders, teachers, musicians, scientists… And we’re losing them.

About 60% of funding for drug development in adult cancers comes from pharmaceutical companies. For pediatric cancer? Almost none.
Why? Because childhood cancer drugs are not profitable.  

Researchers have to rely on private funding in order to create new drugs and run clinical trials for pediatric cancer.  The private funding comes from us. 

As an individual it does seem overwhelming - How can one person possibly make any difference?   

What can YOU do?  

Take action!

Maybe instead of that cup of coffee that you stop for every day before work – you put that money toward pediatric cancer research.
Or those Christmas cards you send every year… that everyone eventually ends up throwing away? Maybe you put that money toward this cause.   

Or participate in a ride, or a walk or a run that will benefit pediatric cancer research in some way. 

You may not think it is much, but if we all do a little something – together we’ll achieve something really big. 

Let's make September pediatric cancer ACTION month.
Our kids deserve more than 4%. 

Friday, August 26, 2016

The summer of my kids

I never thought I'd ever hear myself say these words out loud..... like ever...
but for the love of God... I need the summer to end. 

I said it. 

I may be the only mother that's never said it.  But I'm saying it now. 

I'm throwing in the towel. 

I cannot do it. 

I cannot summer any longer. 

This morning I was literally hiding in the bathroom while my children were screaming outside the door.
And when I say screaming... I mean SCREAMING.
I'm fairly certain the neighbors heard them. 

I just couldn't bring myself to referee one more fight. I couldn't bring myself to intercede. 
There was screaming and things being thrown and doors being slammed... while I just huddled in the corner... silently weeping....waving my tiny white flag. 

We have had too much of each other. 
All of us.
I'm sick of them...they're sick of me... we're ALLLLLLLLL sick of each other up in here. 

Patience is long gone. 
Responses like, "Ok, no problem" and "Sure!" have been replaced with, 
"I AM!!!!!" and "UGH!!!!" 

Phrases like, "WHY ARE YOU SO MEAN?" and "YOU. ARE. SO. ANNOYING." are used multiple times daily here. 

My tune-it-out capability is shot. 
So I hear all the whining, all the time. 
"Pleeeeeeease.... Mommmmmmmyyyyyyyyyyy.... whhhhhhhyyyyyyyy" 

Holy mackerel. I might lose my marbles. 

I've cleaned up the kitchen approximately 9,489,321 times... because my children are constantly eating. 

The is their full time job, I'm sure of it. Snacks...ALLLLLL the snacks... ALLLLL the time. Snacks, snacks, snacks

I'm sure they are getting paid, under the table, to snack. I'm sure of it. 
Paid endorsements for eating granola bars, Teddy Grahams and Ritz crackers.  

We don't eat meals this summer. We just eat snacks. 

No joke - My son will wake up in the morning and request a snack. Nevermind breakfast... just a snack. 

And I've given up - I've totally just given up!
You want a snack for breakfast? 

It's "No." the first 10 times he asks... and then the 11th time... I'm so worn down that I just yell, 


They've broken me. I'm broken. 

I don't even know who I am anymore. 

Organization and order have gone out the window this summer - 
My house has turned into a frat house... only.... a lot less fun
This isn't fun.  

I don't even know how to describe it... it's just constant ...constant. 
And I  can't keep up with the constant CONSTANT. 

It's water bottles and towels and bathing suits... and it's loud crashes coming from far corners of the house...and it's crafts and crayons... and the dog stealing someone's underwear and chewing it in the corner and it's someone half yelling/half whining, "STOOOOOOOP!!!!!" and it's toothpaste spackled all over the bathroom... and someone peeing on the wall by accident. 


I just don't know. 

And I can't tell you how many hours this summer have been spent in my car.  
My poor car. 
My husband insists it is time for a new car. And really, it probably is. 
We bought this van 3 weeks before the twins were born... and they're 9 now. 
And this car is TRASHED. 
Like, "it looks like someone might live in there at night while we're sleeping", trashed. 
Like, "Don't know where the garbage is? Just throw it on the floor of mom's car", trashed

The third row is like the mystery row. Like that mystery flavor dum-dum lollipop. You never know what you'll get. 
I don't go back there. EVER. And with good reason. 
The cup holders are filled with(and not limited to) the following: Rocks, shells, gum wrappers, lollipop sticks (with that little bit of leftover lollipop that sticks to everything), banana peels, half empty water bottles(but I'll be they're half FULL), broken crayons, scraps of paper, other kid's homework, book marks, erasers, stickers from the doctor's office, goldfish, etc. etc. etc. 

My car constantly needs to be vacuumed and needs a good washing. The windows are smeared with hand prints and it has a funky... sweaty... food-y... beachy. smell to it.  

Sounds awesome? Oh, it is. 

And I've somehow managed to spend most of my summer in that luxury vehicle driving to and from camps, the library, the pool, the shore, friend's houses, dr. appointments, the grocery store.... 

Kids in the car... kids out of the car.... packing the car, unpacking the car... water bottles, swim suits, backpacks, dog crate... in and out...and in again... 

I don't know what planet I was on back in June when I was dreaming of what my...excuse me... OUR summer would be like. 

Leisurely days spent at the beach.... swimming with friends at the pool... picnic lunches...collecting shells... early dinners followed by ice cream trips to visit friends...exploring new places... Sleeping in... 

NO. There has been none of that. 
This has not been OUR summer at all. It's been THEIR summer. This summer has been for my kids. Every last ever loving second of it has been for them. 

Tie Dying shirts? Sure. No problem.
Finding Dory? Yep. Let's go! 
Field Hockey Camp for a week? Yup. 
Tennis? Absolutely. 
Fro Yo?  mmmmhhhhmmmm....
Surf Lessons? You got it. 

Heaven forbid we have a day with no plans...they all sort of hover looking at me like, "Well? What do you have for us to do now?"

Um. Excuse me?

I'm pretty sure when I was a kid, my mom drove me to the pool, dropped me off with a cooler and a towel and said, 'See ya at 5'
That was it.
I was on my own with my older brother for the day.
Here were our options - none.  We weren't given a choice of things to do. We were told, "You're going to the pool." And we did.

We went to the pool pretty much every day.  And there we had "pool friends". They were friends we didn't see really at any other time of the year, but the summer.  We didn't complain that our "regular" friends weren't there. We went and hung with our pool friends, all. summer. long.

There we played shuffleboard, knock hockey, board games, card games...and endless games of concentration. We made friends with the high school life guards.  We swam until our eyes burned from chlorine. We made forts with towels and pool chairs. We played swimming games with a golf tee and we had cannon ball competitions.

And that was our summer.
We didn't go to 12 different camps. Our mom didn't drive us all over creation fulfilling our every whim. 

And sometimes I sit back and think... "What in the hell am I doing wrong?"
Am I doing something wrong?
I must be.
I feel like all the other moms are doing the same damn thing I'm doing..  are they? I think so.

And I can't help but feel like we are doing our kids and ourselves a MAJOR disservice
After this summer... I'm pretty sure we are.

After this summer my kids have this idea that the world revolves around them.
That their every whim and request should be fulfilled and that the world... or maybe not the world...but I owe them something.

And frankly - I'm over it.
It's been nonstop.. .them them them since June 21st.

And as summer now comes to a close -- I'm taking it back.
I'm taking it all back - This fall will be MINE.

I will put my foot down.
I will say no.
I will refuse extra practices and add on items.
If it doesn't work for me, I'm not doing it.
Because I'm done.
It's been 2 straight months of full throttle YES to everything for my kids and it's time to say yes to everything for me.


But first I have to clean up the pee on the wall in the bathroom.