By: Sarah Jones - Ben’s Mom
The moment we were told that Ben had cancer, it was as if our world stopped turning. In the blink of an eye the things that we thought mattered, no longer did. Similarly, the things that we had never given any or much thought to, suddenly sat front and center on our minds. Things like risk factors, infection, complications, medication calendars and so much more became our new normal. Our family was thrust into this state of overwhelming precaution.
All the normal aspects of childhood like school, sports, and social growth and development were put on the backburner because, well, surviving cancer takes obvious priority. We had no choice but to withdraw from all activities that could pose additional risks to our son who was already fighting for his life.
Fast forward to today…over six months into a global pandemic. Our son is still fighting for his life and the list of precautions that we take as a family has only lengthened. It is almost ironic; so much of the world is now taking safety measures just like we have been for two years, but it feels like the cancer community has been forgotten. When we go into the hospital for treatment, only one adult can go (no siblings). The same goes for emergency situations and end of life care; our support system is obligated to stay home. Of course, this is to keep everyone safe, for which we are grateful. However, this has only intensified the emotional and isolating aspects of this journey. When our children are admitted to the hospital, they no longer have a playroom that they can escape to. Children’s Cancer Fund and the hospital itself are doing what they can to help our kids have fun within the four walls of their hospital rooms, but it is just not the same.
These pint-sized warriors deserve the best that we can give them, and unfortunately, this pandemic has greatly restricted the ways in which we can ensure they are getting what they deserve.