Childhood cancer Awareness (Action) Month - Day 28

This is Michael. Today is Sunday and we head into the last week of Children’s cancer Awareness Month. A bit of sadness goes with that thought, not because of the end of a good thing per se, but mostly because it is a loss of time. October will be with us, and the plight of kids with cancer and their need for better treatments and less painful therapies will be on the back burner again for most. Most of the time, sadness is only an emotion that comes with the thought of those children unnecessarily lost; I admit that I try to stay determined more than sad, mostly so I can never quit for Cannon or for anyone who has a child fighting pediatric cancer. But for every day that pediatric cancer goes on the back burner, more children will be diagnosed and 45-50 a week will be lost, and that’s just in the U.S. We can win this fight despite what others tell me, and we must, regardless of whether we are fighting in September or any other month.  

Last night, I took Cannon on some “Dad and Cannon” time and we went to a local pasta restaurant. I thought Cannon might enjoy some mac n’ cheese, but I found out when I got there that the restaurant didn’t have it on its main or kid’s menu (what restaurant doesn’t have mac n' cheese on its kids menu?) Anyway, I found myself enjoying sitting at the table with Cannon and him pointing to airplanes flying on their final approaches to Orlando International Airport. But I saw another guy with his small son, roughly Cannon’s age.   And he sat there and had a conversation with the little guy, and it was just “why Daddy’s” and other trivial conversation, but I was angry. I was angry because Cannon doesn’t talk yet, and perhaps it's because he was hospitalized for much of 16 months and had little socialization with other children during treatment at 6 different hospitals around the country. He’s 3 now, and I was angry just for a moment that cancer stole that conversation away from me,  and the chance for me and Cannon to sit at a booth in a restaurant and just talk to his Dad.

Yes, I know; I should be thankful he is here, and I am. I also thought at that moment that many parents that we know and have followed that no longer have their child—cancer took them to heaven. And maybe I should just be thankful that I even had a chance to go out with Cannon--- and I think that’s right. Talk or no talk from Cannon, we remain Thankful for the Fight. And I just get angry writing this because of the unjust and unnecessary loss of our kids to cancer and those parents across the world who would do anything, literally, to have the chance to take their child out for macaroni. cancer sucks, and I will do whatever I can to beat it and never let it rip our families apart.

Cannon is currently enrolled in a clinical trial that is designed to test a drug for the prevention of relapse, and I will write more about that in the future. Today, I want to talk generally about clinical trials in the world of pediatric cancer.

Childhood cancer Awareness Fact: Today, less than 5 percent of adults with cancer are enrolled in a clinical trial, but 60 percent of patients under the age of 29 are. For childhood cancers, clinical trials are not the exception; they are the standard of care, with each patient receiving either the best known treatment or one that may prove to be better.   Source:  St. Baldrick’s Foundation

More about clinical trials from St. Baldrick's: Clinical trials are conducted to improve survival rates or to reduce side effects or long-term effects of treatment. Nearly 100 active clinical trials are open at any given time. Many experts review each trial before it is approved by the Children’s Oncology Group (COG), the National Cancer Institute (NCI), and the local hospital where it is offered. A study may focus on new treatments, the underlying biology of childhood cancers, supportive care, or survivorship.

In most trials, it is not clear which arm of the study is best until all patients have completed the trial and been observed for several years. If it does become clear during the study that one is better than the other, the trial is stopped and all patients are given the better treatment. All information about diagnosis, treatment, and results from each patient is collected in a uniform way at each institution and submitted to the group to be analyzed. Findings are published, and the group then builds on this knowledge to make even more progress.

Despite this, funding from the NCI has been cut 30 percent over the past 10 years, when adjusted for inflation. Funding for all cancer research — for children, teens, and adults — is important, but the playing field is not even. About 60 percent of all biomedical research in the U.S. comes from the pharmaceutical industry; of that, almost none is for childhood cancer. Philanthropic support for pediatric cancer research is also far less than for adult cancers.

Kids with cancer are depending on clinical trials to find better, safer cures. Tell Congress to increase funding for childhood cancer research EVERY 3 minutes                           in this world we live in, a child is diagnosed with cancer. And not a person on the planet knows what will have caused it for each and every child--- every 3 minutes. Not acceptable.

Please help Melissa and me and all the families in this fight stop this. Raise awareness, tell your government at local, state and federal levels to take up something really worthwhile and help us fight childhood cancer. 

For Cannon and all the kids who fight every day, stand up for children with cancer and Go Gold in September.  Stand up for kids: STAND UP.