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 clinicaltrials.gov. 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: http://www.thetlcfoundation.org/donate.php
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.
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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