Tuesday, September 3, 2019

A MESSAGE THAT BEARS REPEATING


September is Childhood Cancer Awareness Month. In the hopes that new readers might come across this post (please share), it is important to start off by stating the fact that my son, Ty Campbell, died in October 2012.  He had just turned five years old.  We will never really know if it was the cancer itself or the treatment that ultimately took his life, but we do know this: he died because there were not enough safe and effective treatment options available to him, which is the same reason why any child loses his or her life to cancer. 

After trauma, CANCER is the number one cause of death in children.  Not enough is being done to advance cures.

This photo was taken two weeks before his tumor was discovered (he was two years/ten months old). Over the course of 26 months in treatment, Ty had more than 20 surgical procedures.  Any parent who has ever had the difficult experience of leaving a child in the hands of a surgical team – whether for something as harmless as ear tubes or as brutal as a brain tumor resection – can imagine how difficult it was every single time.



 He was returned looking like this…

And like this…


And like this...

And like this...


My heart can't possibly break more.

He was my greatest gift.  My biggest responsibility in life.  And I allowed this, over and over and over again.  He suffered tremendously as a result of our efforts to cure him, and still he died.  The blame I place on myself for losing him is my own cross to bear, I can’t change the past and I have come to terms with it.  I have.  

However, the blame I place on the pharmaceutical, medical and research community is something that I can do something about.  It’s something we can ALL do something about. 

Childhood cancer is everyone’s cause, because every child is vulnerable to this disease.  
  • A child is diagnosed with cancer every two minutes.  
  • There is no known cause, and it does not discriminate. 
  • The majority of agents in use today are not designed to treat the unique pathology of children’s cancers, and they can be very harmful to their small, developing bodies.
  • One out of five children will not survive their cancer more than five years, and of those that do survive five years or more, the majority suffer severe long-term side effects that impact their quality of life (including secondary cancers).
  • Research and development from pharmaceutical companies comprises 60% of funding for adult cancer drugs, and close to zero for childhood cancer drugs.
    • Therapeutic discoveries in the lab are not profitable for pharmaceutical companies to manufacture because the volume of drugs used is comparatively minimal. 
  • At the same time, childhood cancer receives less than 4% of the national budget for research, creating a huge funding gap that leaves small, family-founded nonprofits like ours working relentlessly to supplement that funding and fill that gap.
  • The clinical research landscape is complicated, resulting in progress at a snail’s pace.  For example, the average time for a therapeutic discovery just to be tested in humans is 5–7 years.  For pediatrics, that wait time only increases. 
  • The possibility of discovering appropriate therapies can be limited by accepted research standards (e.g., large-scale/multicenter requirements, testing single-treatments one at a time rather than jumping right into combinations that we know are more effective, placebo-controlled studies and narrow eligibility criteria). 


Thankfully, many people now know and understand these facts.  I credit the parents of children with cancer who have done such an incredible job raising awareness.  The gold ribbon is seen far and wide.  I can’t open a social media channel without seeing posts in September about Childhood Cancer Awareness Month. I am so incredibly proud of the awareness we have raised over the past decade.

Now that you are aware, it is up to you to take action.  If we are going to change these statistics, we need to turn awareness into impact.  Share this message about childhood cancer awareness month. Sign up for a 5K (the TYathlon in memory of Sweet Sally Sunshine is on September 14).  Make an effort to deliver on at least one random act of kindness and leave a note behind about a child who you are honoring (you can even request free kindness cards here).  Donate to your favorite childhood cancer nonprofit working to improve treatments for children.  Support legislative efforts to increase research funding and write your local representatives to demand more than 4% funding.  Encourage your children to get involved, they can sell painted rocks, seashells, lemonade, etc.  Check out Wildcats Spirit Day, Goals for Gold or the Blue Lollipop Project for fun and creative ideas. If your children are in preschool, consider asking their teachers to host a WellyWalk or Pajama Day Fundraiser.  Shave your head for St. Baldrick's! There are so many hands on ways to make a difference. 

In memory of the angels, in support of the fighters, in honor of the survivors, I thank you.  Together we can make a difference during Childhood Cancer Awareness ACTION Month and beyond.  

2 comments:

  1. Hi Cindy - I have been following your blog for a while and am always amazed at the strength of you and your family. Did you see on Instagram today that Sheryl Sandberg showcased the Blue Lollipop project and specifically said that it was inspired by your sweet Ty Louis Campbell. He continues to change this world for the better.

    ReplyDelete
  2. I think of Ty and you often. You have an amazing ability to reach out and let people know the real story of childhood cancer. I really hope a book is in your future. I cannot beleive Ty has been gone 7 years. I remember the day I read your post about his passing like it was yesterday. He will always have a place in my heart.

    ReplyDelete