Tuesday, September 3, 2019


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.  

Wednesday, July 3, 2019

Hazen, forever 5

I rarely blog anymore.  I don’t have a story to tell anymore. And that’s because I don’t have a son with cancer anymore.  My beautiful boy who captured so many hearts died six and a half years ago. 

But three weeks ago, I found myself with tears in my eyes and as our seventh (!!) annual Mess Fest fundraiser is approaching, I thought it would be an appropriate story to share. 

Alexandra Garcia – Alex – was just a little girl when Ty was sick.  Her brother Michael was still a toddler.  I didn’t know her or her family, but Alex’s mother is such a deep and caring person that she injected herself into my life and I am so grateful for her friendship ever since. 

This family travels for hours from their home in Westhampton to attend our events.  They volunteer.  They devise plans behind my back with a team of my favorite fairy friends to purchase plane tickets for our Mely to visit with us time and time again. 

Alex has grown into a thoughtful young teen who shares her mother’s generous heart.  She spoke to her teacher at school, and asked to host her very own “Mess Fest” in Westhampton this year.  The next thing you know I’m getting a call from her teacher, Kelly, whose voice I recognized with surprise as memories of my school days came rushing back… of course, I knew her.  Ty always arranges such "coincidences."  

The event was amazing.  Alex and Miss Russell planned and executed a flawless event.  I drove down there with Bodhi and a car full of supplies to help them with the Mess Fest, including our signs.  The signs feature photos of children who underwent cancer treatment, and it was the signs that compelled me to share this update with you…

Hazen has a freckle on his cheek.  His freckle brought me to tears.

How come I never noticed?  I treat these signs with boundless love!  I clean them off carefully after every event, which means I have cleaned Hazen's sign over a dozen times.  I never met many of these children but I know that Kai wears a green crotchet headband and that her adorable right ear sticks out more than her left.  I know that McKenna is missing her top left tooth and that her photo was taken on her first day of first grade.  I know that Rett has the bluest eyes I’ve ever seen.  I never noticed that about Hazen though, and as I wiped slime and paint splatter from his face to reveal this cute little freckle on his left cheek, the tears filled my eyes and they didn’t stop for days.

Tears because I will never get the chance to meet any of the children with the word "forever" under their names.  

Tears because they never got to experience a Mess Fest event, where we celebrate them with such fun and laughter. “The best day of the year!” I have been told time and time again.  And it is… it really, really is.  

Tears because I am just so very sad they are gone.  I know their stories and I know how they suffered, and how their families continue to suffer without them.  But I also cried because a beautiful thought crossed my mind. 

They HAVE seen the Mess Fest.  The spirit of these children is felt everywhere, and their laughter echoes across the grass all day long.  The vision of their very signs splattered with mud shows me that they are, indeed, participating – and getting dirty just as they should be. 

Ty never jumped in a muddy puddle after he was diagnosed with a brain tumor.  But now he is free and his spirit will be everywhere at Mess Fest on August 3rd.  He will be jumping in every puddle he can find. 

If you are on the fence about coming to this event, I hope you will just “jump in.”  A very small team of dedicated individuals work their tails off to deliver an incredible experience for everyone who attends – a true celebration of childhood – all to help change the outcomes for children with cancer by funding research.

In honor of the survivors, in support of the fighters, in memory of the angels…. Join us to celebrate the kids. 

Visit the magic show to see “Amazin’ Hazen” (as he liked to be called), and admire his adorable freckle. 

If your family has been impacted by a childhood cancer diagnosis and you would like to have a sign made in honor of your child, please feel free to fill out this google form.

photo credit: Laurie Spens 2018

Alex and friends at the Westhampton Mess Fest!