Epilogue -Childhood Cancer, My Road Map Series


Five weeks ago I set out to create what I think is part of the road map for the issues facing the fight against childhood cancer, and the areas I feel could provide gains on this road. The truth is, nobody has all the answers, least of which would be me. I do know however that the manner in which we as a country have been attacking the problem is not working. Cancer still takes kids from their families on a daily, weekly and yearly basis and the incidence rates are not lessening. That is unacceptable. The truth is that we have failed as a country to take the steps necessary to ensure that this battle against childhood cancer, or any cancer for that matter, is won. The previous four pieces were meant to make people think. They were meant to engage and more importantly, they were meant to provide people who want to engage but do not know how the ability to do so with some simple action items. Ultimately, it is easier said than done.

What this battle will take to win is a dramatic shift in the way that childhood cancer is seen and understood and frankly monetized for research purposes. Mainly I have focused on the federal front. I chose to do so because I personally believe that our federal government has placed the battle against childhood cancer very low on the list of disease priorities. There is so little sense of urgency at this juncture and we continue to look through the same blinders that have lead us down this rabbit hole without a cure. In general, there have been no cures found for any single disease in a very long time. We must see this and the manner in which we treat childhood cancer as an overall failure.

What I hope that people who have read my four part series take away is that the road to the end of the map begins with small steps. It begins with simple efforts by people who are impacted by the disease and by those who learn about childhood cancer along the way. I am now more than ever, since I unfortunately entered this world with the diagnosis of my daughter Alexis five years ago, filled with a sense of optimism that the groundwork is present to walk along the road map. Taking small steps, such as writing letters, using social media, calling our members of congress, talking to our friends and simply engaging with people about childhood cancer is such a significant move along this road. Does this get us to a universal cure for all of the many different types of childhood cancer? I do not frankly know. Looking back upon the four part series, I think that each part of the road map has as its aim to move us further towards a time when we are better equipped to find cures and real treatments. Each part taken individually provides action items that are achievable. Of course, there is much more to be done.

In the end, I have never cared who finds cures for the various forms of childhood cancer. I have never cared where they come from. I have never thought it was important for those in the battle against the disease to seek personal accomplishments and accolades along the way. I have simply believed that it is important to just find cures and treatments. Whether or not my thoughts, opinions and ideas put us any further along the path to that magical word “cure,” it is yet to be seen. I hope that everyone who has read my series has been given some food for thought. There is an equal chance that the past four pieces have simply been nothing more than the random and unorganized thoughts of a grieving father.

The series truly is not over though until every child diagnosed with cancer has a cure available. That is when I can stop writing about childhood cancer and figure something else out to devote my waking energy.

The end……. (of this series at least).

Author: Jonathan Agin


This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , . Bookmark the permalink.

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