The Good, the Bad and the Ugly

Since our daughter Alexis’ diagnosis with DIPG, (diffuse intrinsic pontine glioma), in April 2008, my wife and I have witnessed tremendous acts of kindness and humanity from total strangers on many occasions. When Alexis passed away in January 2011, the outpouring from across the globe comforted us and assured us that Alexis touched so many.

Fast forward to the morning of January 14, 2015. As we prepared to mark the fourth anniversary of Alexis’ loss, my wife rolled over in bed that morning and asked me whether I received an email from a specific individual. Intrigued, I quickly scanned my several email inboxes I maintain and answered in the negative. It was only my wife that had received the email she just asked me about. The name of the person who sent the email was completely unfamiliar. As my inquisitive nature took over, I prodded my wife about the email. At first she refused to share it with me because, in her words, it would only make me angry. After several minutes of badgering her to share it with me, she relented. When I finally looked at the email my heart skipped a beat as I saw the letters, words and sentences displayed on the screen.

Paraphrasing here, as I have tried to wipe out the words from my mind, the email began by stating “The world is a better place now that Alexis is dead.” It did not get much better from that point forward referencing images of coffins, morgues and worse. I have tried to wipe the images of the words and letters from my memory. Again, up until this point in time, we experienced tremendous support and positivity from people. Yet here, sitting in my wife’s email inbox on the fourth anniversary of Alexis’ death, was this purely evil email clearly meant to cause further pain. I maintained my composure; I did not make threats and I put the email behind me as best as I could.

The sad truth though is that my family is not the only one that has received this email, with these words, with the same evil letters splayed across the screen. I have learned from speaking with several people in the childhood cancer community that in fact this crime, and let us call it what it is, has occurred to numerous other families. There is no way to tell how many other families have received a similar email, but from what I have been told it is quite a few. This email has appeared on the day of their child’s funeral, on anniversaries, such as in our case, and in some horrific instances on the day that the child died. The emails appear to be sickeningly timed in a singular effort to inflict the most emotional damage possible.

The actual email address of the person listed, as the sender is not in fact the actual person responsible for sending the email. Several recipients of these emails have hit reply only to receive a response from the actual owner of the email address who has no idea about the underlying message. The person or persons who are inflicting this type of terror have hijacked email addresses and use them as a shell within which to operate. Thus far in our case we were able to learn that the individual who sent the email utilized a domain or web server in the Czech Republic. This in fact corroborates with other emails that have been received by the many victims in the childhood cancer community. Of course this does not necessarily mean much, as the person or persons pulling off this sadistic offense may be sitting in an office or a house right next door to any of us.

In order to address and cut this crime off at the knees, I would like to see a formal federal investigation conducted. I do not know whether the person or persons behind this will ever be caught or prosecuted for that matter. Accordingly, in the interim, raising awareness that this offense occurs at all is the first step in snuffing it out. The emails simply carry the subject line with the child’s name. In our case, the email simply said, “Alexis.” To a parent who has lost a child, seeing their name in the subject line is a harmless and innocuous prelude to this heinous act of terror.

In the end, I firmly believe that those of us who have been forced to endure the diagnosis of one of our children with cancer, or worse yet, the loss of our child, experience the positive side of humanity. We experience the outpouring of support and human spirit of kindness and generosity. It abounds. Yes, there is evil in this world. But, as Anne Frank said: “Despite everything, I believe that people are really good at heart.” I could not have said it any better.

Author: Jonathan Agin, Director of External Affairs
Follow Jonathan on Twitter @jonathanagin