Saturday, September 1, 2018

Childhood Cancer Awareness. What Difference Does it Make?

I’ll be the first to admit that after all of this time, I’ve learned awareness is limited when it comes to impact – but still so very important. 

This is my ninth September since my eyes have been opened.  Nine Septembers since the first day I walked into the playroom at Memorial Sloan Kettering Cancer Center and saw a poster that was emblazoned with gold ribbons and sticky notes.  I was introverted (still am), overwhelmed, and walking around in shock over the fact that I was really there because my perfect almost-3-year-old son had cancer.  I didn’t want to be there and my energy made it obvious that I wasn’t welcoming others to talk to me. No one approached me, so I didn’t ask about it, but I quietly read through the adorable handwritten notes on the gold ribbon poster with curiosity. 

That night I googled it, and I learned that gold ribbons represent childhood cancer awareness.  I started to feel a passion emerge from within that told me it was important and imperative that I do everything I can to make gold as well-known/linked to kids’ cancer as pink is to breast cancer. 

I started searching on Facebook, and mind-you, even Facebook was fairly new.  I had only joined the social media network when Ty was born to show off his photos, and Instagram didn’t even exist yet.  I found a handful of new groups just starting to emerge that were pushing the “Go Gold” movement.  Blogs were just starting to scream about the injustice of it all.  Why is everything “pinkwashed” but no one knows about gold?? 

If it’s true what they say, that awareness = funding = cures, then I was sure as hell going to do my part in raising awareness.  And so were the incredible friends who loved Ty so much, some of whom later became board members of the Ty Louis Campbell Foundation.  Countless letters were written, awareness facts were posted, and fact sheets were compiled (with some fairly questionable accuracy, but we did the best we could). 

Fast forward to September 2018 and I am kicking off this childhood cancer awareness month with the following message: “You should all be very proud.”  Eight years after I started blogging, and almost six years after losing Ty, I can promise you that so much has changed, and every single person reading this is part of the butterfly effect that has driven that change. 

If you put the words “gold ribbon” in a Facebook search, you will find hundreds of pages dedicated to childhood cancer awareness compared to what I found eight years ago.  If you google it, you will find dozens of options to buy gold ribbon merchandise and childhood cancer awareness tees.  A childhood cancer community has been formed, and it is fierce.  There is now an annual “CureFest” in Washington DC, and a Coalition Against Childhood Cancer (CAC2) with more than 200 membership organizations.  Advances in social media have connected us all in a way I never could have imagined years ago, and I promise you, there is a slow but steady impact being made as a result.  Here are a few things I want to share off the top of my head:

  •  In 2010, there was only one drug created specifically to treat childhood cancer in more than fifty years.  Now, eight years later, there are four.  Is that good enough? Hell no! But, it’s a tremendous step in the right direction.   
  • In 2017 the global goliath – Amazon – became the largest company to support the Go Gold movement, and in 2018 it is even bigger and better (see below photo).
  • Major League Baseball is going gold for the third consecutive year by dedicating today "Childhood Cancer Awareness Day" at ballparks.
  • In 2011 I was in a desperate search for a clinical trial that would accept my son.  He had a rare brain tumor (AT/RT) and we were clinging onto hope for a new option.  There were none – not one AT/RT trial – posted to  Today, when you search his disease type, there are seven trials open for enrollment in which he may have been a candidate. 
  • I have seen companies from Hyundai to Northwestern Mutual support childhood cancer research, and the list of corporate support continues to grow.
  • I have visited research labs that are specific to childhood cancer research (and now work for one at Weill Cornell Medicine) that didn’t even exist nine years ago. 
  • Genomic sequencing and individualized treatment went from an extremely expensive option that only Steve Jobs could afford, to a growing frontline protocol, even in pediatrics. 

Do I think we can we attribute this to driving awareness?  Absolutely.  But I would be remiss if I didn’t say that it took/is going to take much more than increased awareness if we are going to see a difference in the overall outcomes for these children.

The clinical trials and research labs that have emerged are because of the dedicated researchers who took action.  The corporate supporters are a result of a handful of influential people who leveraged their position and took action.  The funding that has provided seed money to see big research ideas to fruition are a result of fed-up families and nonprofits who are fundraising and taking action.  The regulatory changes, such as the Childhood Cancer STAR Act, are because of the collective effort of the childhood cancer community who took action.

So I’m following the lead of my friends at the Children’s Brain Tumor Project, and I’m declaring September Childhood Cancer Action Month.  Yes, of course, please continue to raise awareness… but let’s all think about how we can turn that awareness into action. 

Through the Ty Louis Campbell Foundation, we have taken action by supporting breakthrough research that we believe in.  This September, I’m asking you to “Take a Stand” against childhood cancer by taking action.  Host a fundraiser to benefit TLC or any childhood cancer organization close to your heart.  

You can also find helpful ideas via the links below, and I hope you will continue on this journey with us. 

Childhood Cancer Awareness Action Month
Sept 1-30: Go Gold for Childhood Cancer Awareness Month

Or make a donation, here:

Heaps of gratitude coming your way.  From my heart to yours. 

PS - It's been such a long time since I've posted a blog, it's only necessary that I also share some fairly new photos of Bodhi Ty Campbell.  My love.  He has breathed new life into this family... and complete chaos.  

All of my love and gratitude to each and every one of you who continue to care and support our family.  We would be lost without you.

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