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%.