Friday, September 21, 2018

Yellow for Sally

I used to play Candyland a lot. My son Ty was diagnosed with a brain tumor when he was 2 and having spent more than 250 nights in a hospital with a toddler (who loved candy, especially blue lollipops), you can imagine it was among his favorite games to pass the time. His favorite color was blue, my other son's favorite color(s) at the time were red and green (yes, both), so I always had to be the "yellow guy." 

I since decided that my favorite color is yellow. It's not a popular choice among kids, and I get questioned about it often.

What's your favorite color?
Yellow? Really? Why?
Because it's a happy color...

The irony lies within the fact that for me, as a bereaved mom, every ounce of happiness I feel is forever bittersweet, juxtaposed by my loss.

Yellow is a happy color. The color of sunshine. In a time when I most needed hope and happiness, yellow could not have been a more perfect color to designate as my favorite. The Coldplay song, Yellow, became our love song.

I met Matt and Nicole just months after Ty died. Their daughter - Sweet Sally Sunshine - had been recently diagnosed with infant leukemia. I drank waaayy too much wine that night, and shared my "fuck the world" sadness with them quite inappropriately (probably to their horror), but I would never know. They were and are the kindest, warmest, most optimistic people imaginable. Nicole has the most beautiful smile you'll ever see.  From the moment I met them, I admired them tremendously.

Over the course of the year (~2013), after several ups and downs, Sally was thankfully cancer-free. Matt and Nicole could have eventually put the ugly and unbearable world of childhood cancer behind them, but instead they chose to advocate for the children. They were the largest force behind the movement to convince the Empire State Building to go gold to raise awareness for childhood cancer, and when the Empire State Building refused, they gave a provoking speech in Times Square as its lights went gold in September to prove that even greater things can come out of such disappointment. 

Sally and her family brought our community together in a united mission to raise awareness.

Sadly, cancer wouldn't let them go on with their lives, even if they wanted to. Sally suffered tremendous setbacks over the years, and on Wednesday she died suddenly after becoming septic from an unknown infection. She had just celebrated her sixth birthday.  

Cancer will not be listed as her cause of death. She is considered a cancer survivor. Statistically, when measuring the impact of childhood cancer, she will be deemed a success story. But the world lost this beautiful girl because of childhood cancer. Because the treatment she endured at such a young age weakened her little, growing body. The growing list of long-term side effects from the treatments that temporarily saved her life included seizures, low oxygen and a weak immune system. Like my own son who suffered necrosis and the onset of paralysis despite the fact that he was cancer free, Sally's quality of life was compromised.

Sally's story is the reason why we fight so hard to provide funding for safer, more effective treatment options for children. Why I'll never stop fundraising and fighting and talking about kids with cancer.

Over the years, Sally's sunshine remained bright, no matter what she was faced with. When you were in her presence, you could literally feel her light. Sally made people happy.  She was yellow.

Sally's family has asked that we wear yellow today to honor their amazing girl. It may be my favorite color, but that doesn't mean it works with my complexion so I didn't have much to choose from. I think this is a happy shirt, and I am smiling with tears in my eyes as I take this photo to show Sally's family how loved she is.

With every ray of light, Sweet Sally Sunshine will be remembered.

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.