Day 14 - Children's cancer Awareness Month

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This is Michael. On Saturday, I attended a pet walk to benefit children's cancer. The picture is of me and our dog, Winston, who enjoyed the morning meeting all the other dog supporters in our fight against pediatric cancer. The walk was sponsored by Talia's Legacy and BASE Camp, two organizations working together on this event because of Talia Castellano, a sweet girl that was unjustly lost to neuroblastoma and secondary cancer in 2013.   We support these two groups and Talia's mom, Desiree, and her siblings. They continue the fight for Talia and to raise the flag for children with cancer.

When Cannon was first diagnosed, we were admitted to Arnold Palmer Children's Hospital in a room aside of Talia. We didn't know then that Talia had already made her mark on the world of children's cancer and we soon came to learn what a remarkable girl she was --- an incredible soul and fighter. Today, I want to talk about why a particular statistic in the world of pediatric cancer is misleading, and use Talia's story as the example.


Childhood cancer Awareness Fact of the Day:  Some organizations, and specifically some children's hospitals that treat kids with cancer, report that because of advances made (arguable, but...), 4 out of 5 children diagnosed with cancer will survive, or 80%.   

This statistic is misleading when reported. First, the numbers include leukemia and all its forms, which has had great strides and advancements in treatment, prognosis and survivability over the past 25 years. When the leukemia numbers are added to the other 11 major types of children's cancer, it somewhat skews the numbers to the extent that it makes it appear that kids with all types of other cancers are surviving at that rate (or, at least markedly improved) as well. Not so. In other words, if the leukemia survivors are taken out of the numbers, the rates of survival for the other types of children's cancer are stagnant, have not changed significantly in this time period at all, and kids with these other types of cancer survive at rate much lower than 80%. 

Second, and maybe most important to point out, the word "survival" has a definition of 5 years. That means that any child that is diagnosed with cancer that makes it past 5 years after diagnosis is considered to "survive". SOURCE: CureSearch.org  

When these numbers are measured over a ten year period without the "adult metric" of 5 year means "survivor", the number of children surviving childhood cancer decreases dramatically. SOURCE: CureChildhoodCancer.org.   

We know that it is not accurate (and I would include "not moral", but that's me) to say that if a child who is diagnosed as a toddler but dies as a teen is considered a "survivor". Of course, many kids do survive a lifetime and grow up to be adults. But children diagnosed with cancer will pass away 6 or 7 or 8 years after diagnosis, after relapse, or just after prolonged and many years of suffering the harsh treatments and likely secondary cancers that occur later because of the  treatments for the initial diagnosis. In fact, although Melissa and I have only been in this children's cancer world for less than 3 years, we already have personally known children who were and are considered "survivors" in those statistics and yet they are no longer with us. They both died 5 or more years after diagnosis.  

If my math is correct, that means that 20% more of the kids diagnosed will die from kids' cancer between years 6-10 after their initial diagnosis. Considering what Cannon has already experienced, and seeing what I have seen on pediatric oncology floors in hospitals from here to New York to Scotland, that is painful to think of. It makes my heart sink.   

Talia was diagnosed with neuroblastoma at age 8 but eventually relapsed as a preteen and then, because of all of the harsh treatments, passed unjustly because she had developed secondary cancer. So unfair for a child to have to fight two types of cancer caused largely by the TREATMENT received to fight the first one. When Talia died, she died more than six years after her initial diagnosis of neuroblastoma. Guess what? She is considered a "survivor" in these skewed statistics that those in the childhood cancer world want to tell us about and which you will read if you go on any number of major cancer hospital or NIH websites. Wrong.

Those numbers, whether one in 5 or one in 4 or 3, are not acceptable. No one would argue otherwise. Won't you GO GOLD and help CKc and all the parents and families and advocates for these kids?? Stand UP. Stand Up for children with cancer. Thank you.