Max Cure Foundation is privileged to have had Jonathan Agin join its ranks as of January 1, 2015. Jonathan and I are both involved with the Coalition Against Childhood Cancer (CAC2). I met him two years ago during one of the meetings of CAC2 held in D.C. We are both lawyers who have another thing in common; Jonathan’s daughter Alexis and my grandson Max were among the ever-growing population in this country of children diagnosed with cancer. Max is 11 years old and a 7-year childhood cancer survivor. Alexis died at the age of 4 in January 2011, after battling the disease for 3 1/2 years.
I read Jonathan’s blog in The Max Cure Newsletter titled “The Good, The Bad and The Ugly” which addresses what he and his wife, Neely awoke to on the fourth anniversary of Alexis’ death (January 11th). Neely received a horrific e-mail from a coward preying on families who lost a child with cancer. If you have not read Jonathan’s blog, please do so before proceeding. To put in context the emotional impact on families who lose a child to cancer on the anniversary of their deaths, I can point to what Jonathan told me on January 10th, namely, “Richard, please do not try to communicate with me tomorrow, it is the fourth anniversary of Alexis’ passing and Neely and I do not deal with the outside world – we cling to our two surviving children, pray for Alexis in heaven and grieve in our own private way.”
I had wanted here to include a quote of the actual email but in deference to Jonathan and Neely, who would read the blog, I elected not to do so in that each reference to it, according to Jonathan, “tears at my heart”. But those reading this blog and having read Jonathan’s “get the gist of it”.
The use of social media in this manner is an act of terror – terror on a population of folks experiencing the horror of losing a child to cancer. A friend who lost her 12-year-old daughter to cancer in 2010 told us recently, “A day does not go by where I do not think of Katy – the pain never goes away but I learn to live with it, as difficult as that may be.” One of the 16 songs my son, David Plotkin , Chairman of The Max Cure Foundation, wrote (he wrote 16 songs that are contained in a CD entitled, “The Journey by David Plotkin” (the CD can be found on iTunes), with the title song, called, “The Journey”, having a line in it which provides:
The journey for the parents and siblings of children who die from cancer does not end with the death of the child – it follows from the day of death, the day of the funeral, the child’s birthday, holidays, and indeed, equally painful, on the anniversary throughout their lives of the incredible loss.
The primary role of Government is to protect persons living and working in the United States from those seeking to do us harm – whether harm from home grown terrorists living within our boundaries or those lurking in foreign lands, planning their attacks on our land and on our people. The role to protect in recent years expanded to such things as exploring the use of steroids in the Major Leagues, conducting studies and holding hearings. I assume the Government elected to get involved in order to not only maintain the integrity of the game, i.e., recognized by most as the national pastime, but also to protect the youth of America who look up to professional athletes as role models – the message being delivered was that steroid use is not tolerable and must be curtailed and if the owners of the baseball teams will not take on that role, the Government would step in.
So, why am I asking Government to get involved and do whatever it takes to catch these terrorists wherever they may live? It is to protect the population of families who lost their battle to save the lives of their children afflicted with cancer. On average, 15,780 children are diagnosed with cancer each year. Of that group, it is estimated that 17% or 2,683 will die within five years of diagnosis (the average age of a child diagnosed with cancer is 6 years old). Another 18% will die within the following 25 years (many prior to reaching their 20th birthday when one is considered an adult). Those that survive the five years from diagnosis have an 8 times greater mortality rate as a result not only because of the increased risk the cancers will reoccur, but also because of the increased risk of heart and liver disease due to the side effects from the toxic cancer treatments.
The Congressional Caucus on Pediatric Cancer, formed in 2009 by Congressman Michael McCaul (Republican, Texas) and Co-Chaired currently by Congressman McCaul and Congressman Chris Van Hollen (Democrat, Md.), has done great work over the last 6 years in seeking the passage of legislation benefiting children with cancer and in raising awareness to the incredible and unmet needs of those children and their families. As Congressman McCaul so eloquently has said, “The purpose of the Caucus is to give these children and their families a voice in Congress.”
I call upon the Congressional Caucus, led by Congressmen McCaul and Van Hollen, to do whatever is necessary through the Department of Homeland Security and/or the FBI to immediately begin an investigation to catch those that continue to prey on families facing the nightmare of having a child with cancer, and then, having experienced the death of that child. These terrorists through their use of social media have unleashed on the ever-growing population in this country of bereaved families a horror considered worse in my opinion than the apparent growing use of steroids in major league baseball.
Author: Richard Plotkin, Vice-Chairman