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 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.











4 comments:

  1. I think Bodhi looks just like Ty in some of these photos! You guys are amazing, Ty has changed so many lives, and continues to do so. I love the Amazon boxes, and urge EVERYONE who shops Amazon to use, Smile.amazon.com and sign up for the Ty Louis Campbell foundation. Almost every purchase you make they contribute (a very small amount) to the charity of your choice. Although it is small, it adds up over time! I will never forget Ty!!!

    ReplyDelete
    Replies
    1. Hi Guys....Email Dr. Sam for urgent love spell supremespellcast@gmail.com


      Am writing this article to thank Dr. Sam for the wondrous miracle that he did for me because he helped me recently to bring back my Ex husband. Thank you sir for your genuine spells. This is really incredible, I have never experienced anything like this in my life. Before i met you Sir, i have tried every probable means that i could to get my husband back, but i actually came to realize that nothing was working out for me, and that my husband had developed lot of hatred for me.. I thought there was no hope to reunite with my husband. But when i read good reviews about how Dr. Sam help others get back there ex lovers, make others to win big on lottery, cure of any sickness. I decided to give it a try and i did everything that he instructed me and i Trusted him and followed his instructions just as he guaranteed me in 48 hours, and that was exactly when my husband called me and come back to me.. I'm so happy for the good work you did for me. We are more contented now than ever. Everything looks perfect and so natural! Thank you so much Sir for your authentic and indisputable spells.

      Email him now for help {supremespellcast@gmail.com Or
      Supremespellcast@yahoo.com} you can visit his Website Via> http://supremespellcast.website2.me Or his blog> https://supremespellcast.blogspot.com Add him up (WhatsApp him
      WhatsApp him on (+2347087462033)

      Thanks Sir for your help.

      Delete
  2. Healing from HIV-AIDS, i never though dr.camala who could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but i couldn't find any solution on my disease, despite all these happening to me, i always spend alot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i come across a great post of !Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime i really wonder why people called him Papa camala, i never knew it was all because of the great and perfect work that he has been doing that is causing all this. so i quickly contacted him, and he ask me some few questions and he said a thing i will never forget that anyone who contacted him is ! always getting his or her healing in just 6 hours after doing all he ask you, so i was amazed all the time i heard that from him, so i did all things only to see that at the very day which he said i will be healed, all the strength that has left me before rush back and i becomes very strong and healthy, this disease almost kills my life all because of me, so i will to hospital to give the final test to the disease and the doctor said i am HIV negative, i am very amazed and happy about the healing dr.camala gave to me from the ancient part of Africa, you can email him now for your own healing too at: dr.camalahivadscure@yahoo.com or WhatsApp him +2349055637784 thank you sir for healing me from HIV, i am Doris Carter.

    ReplyDelete
  3. Hi Guys....Email Dr. Sam for urgent love spell supremespellcast@gmail.com


    Am writing this article to thank Dr. Sam for the wondrous miracle that he did for me because he helped me recently to bring back my Ex husband. Thank you sir for your genuine spells. This is really incredible, I have never experienced anything like this in my life. Before i met you Sir, i have tried every probable means that i could to get my husband back, but i actually came to realize that nothing was working out for me, and that my husband had developed lot of hatred for me.. I thought there was no hope to reunite with my husband. But when i read good reviews about how Dr. Sam help others get back there ex lovers, make others to win big on lottery, cure of any sickness. I decided to give it a try and i did everything that he instructed me and i Trusted him and followed his instructions just as he guaranteed me in 48 hours, and that was exactly when my husband called me and come back to me.. I'm so happy for the good work you did for me. We are more contented now than ever. Everything looks perfect and so natural! Thank you so much Sir for your authentic and indisputable spells.

    Email him now for help {supremespellcast@gmail.com Or
    Supremespellcast@yahoo.com} you can visit his Website Via> http://supremespellcast.website2.me Or his blog> https://supremespellcast.blogspot.com Add him up (WhatsApp him
    WhatsApp him on (+2347087462033)

    Thanks Sir for your help.

    ReplyDelete