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Child Soldiers -- The Forgotten Victims

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This Memorial Day, we paused to offer thanks to all those men and women who have bravely and selflessly donned the uniform of our country to ensure our safety and freedom. Their sacrifices are monumental and have provided us with the ability to live freely. We as a nation demand, despite the realities sometimes, that they are armed and equipped with the most sophisticated machines and weapons on the face of the earth. We insist on nothing less. And with this all said, our soldiers deserve every accolade lauded upon them. Thank you.

Contrast this with the child soldiers here and across the world who exist on the front lines in the war against childhood cancer. They are equipped with weapons that we would not place in the hands of our enemies. Thirty- and 40-year-old drugs that have such negative side effect profiles that they often cause devastating impact either immediately or years down the road. For some of our childhood cancer soldiers, we arm them with weapons we know will fail. This is simply unacceptable and must change.

When my daughter Alexis was diagnosed with DIPG, an inoperable and terminal brain tumor, we were told there was little to no hope. Initially, we were offered approximately four or five different treatments to try. As we made our choice, we already knew that some of these treatments offered absolutely no promise of efficacy. As Americans, there was significant outcry over the stories of our soldiers being sent to Iraq and Afghanistan without the proper armor and equipment. Yet there is so little spoken outside of the childhood cancer community of the antiquated treatments utilized to treat children with cancer. It is is tantamount to the same issue. Why do we continue to arm children battling cancer with the wrong weapons?

The problem is that we have just now begun performing the proper research and specific genetic analysis that should have been performed years ago. We are well behind the curve in this battle and it has only been in the last several years that researchers came to this realization. This understanding is unfortunately too little too late for children like my amazing Alexis. The simple truth is that it is highly unlikely that there will be a "one size fits all" cure for cancer. The many gene mutations that make up a brain tumor in one person may not be a proper target in another person's tumor. This has certainly been shown to be the case in children with DIPG. Therefore, to continue to throw the same garbage at the wall and expect different results is the true definition of insanity. Unfortunately, for a parent currently fighting to save their child, they have little to no other choice. They must try and hope that one of these treatments hits the target.

One of the most significant issues facing the childhood cancer community is the lack of specific drug development and pharmaceutical urgency. This leads to children being treated with "trickle-down" drugs from adult populations. This is unacceptable considering childhood cancer is very different from adult cancer and thus we must treat it as such. The powers that be at NCI, the National Cancer Institute, often argue that you cannot look at cancer research in a vacuum. And therefore, adult research is intertwined with childhood cancer research. Unfortunately, given the fact that treating children with cancer is far different than treating adult cancers, this argument to justify the dismal federal funding picture is beyond laughable.

And that brings me back to the child soldiers, the forgotten victims. As Memorial Day has just passed, our thoughts have turned to those men and women who had the courage to put on the uniform of the United States military. Yet, I will also turn my mind to the children who have come and gone, especially my hero Alexis, and I will give pause for the sacrifices they made. I will honor their legacies and the amazing contributions they made for the advancement in the war on childhood cancer. We should not forget them. Alexis, you are a hero, and I honor you, today, tomorrow and every day.