What Pediatric Cancer Breakthroughs 2020 Means to Me

Chrisie Funari, Founder and President, Arizona Cancer Foundation for Children

This is the first in a three-part guest blog series on Cancer Breakthroughs 2020's Pediatric Cancer Consortium.

“Your child has cancer.” 

When I heard those words in February 2009, everything changed.

Cancer became personal when my 18-month-old daughter, Ava, was diagnosed with Stage 4 Neuroblastoma.  The diagnosis, as most do, came as a shock:  We were an average family - with no history of cancer - just living life.

When Ava was diagnosed with cancer I knew we had to beat this.  I did extensive research seeking out experimental cancer treatments, different hospitals and doctors.  I wanted to ensure that we had no regrets about her treatment.  At the time, Neuroblastoma had a survival rate of 40%, so I knew that to save her life, we would have to try something different. We traveled extensively all over the United States seeking the best pediatric cancer treatment options for Ava, only to find that most places were doing nothing different than the standard protocol.   

Sometimes her cancer hid on her scans and we would celebrate clear scans and declare her cancer free and other times her cancer showed its ugly head in her scans and we would sorrow in our tears and frustration.  Her very first scan the tech said, “She lit up like a Christmas tree.”  Not comforting.  Absolutely devastating. 

After three and a half years of standard and experimental treatments Ava succumbed to cancer and passed away.  Yet, it wasn’t just the cancer taking over her body that took Ava’s life. In the end, she died of kidney failure.  Her body had been ravished from all of the harsh toxic treatments that the doctors had pumped into her little body, hoping and praying that the cancer would go away.  But it didn’t – it never left. 

On May 28, 2012, Ava left us, her parents, grandparents, her older brother Eli, and her unborn sister Eve.  I was 8 months pregnant when Ava passed away.  No family should ever lose their child to this horrible and cruel disease.  My children are growing up with weekly trips to the cemetery to visit their sister.

Unfortunately we have all been affected by cancer in some way.  Cancer Breakthroughs 2020 impacts you whether or not you even realize it.

In the cancer world, children are usually the forgotten ones left with scarce, outdated cancer treatment options.   When Ava was diagnosed with cancer she was treated with the standard protocol – the same as every child with Neuroblastoma.  Although each child with cancer is unique they are all treated on the same protocols. I was given a variety of reasons for this disparity, most of which were financial. Imagine hearing repeatedly that children with cancer are just not profitable. It left us feeling like there was nowhere to go and no one to help her survive. Even if researchers had good ideas and wanted to make an impact, they lacked the funding to implement them.

Cancer Breakthroughs 2020 is the promise for a cure.  A promise for more effective, less toxic treatments for both children and adults.  A promise for a better life.  A promise for individualized pediatric cancer treatment. 

Cancer Breakthroughs 2020 includes children and I am forever thankful to Dr. Soon-Shiong and his team for pioneering a new path to win the war against this deadly disease, not only for children with cancer but also for all people with cancer.  Enough is enough and it’s time we show cancer who’s boss.  It has to be done and I am confident we are on the right path with Cancer Breakthroughs 2020.