I am “Mason’s Mom”, a title I bear proudly. My forever superhero warrior Mason was diagnosed in 2016 with T Cell Acute Lymphoblastic Leukemia and fought his battle bravely until his passing March 9, 2018. He was six years old.
COVID – 19 has reopened compartments in my brain that I had hoped would stay shut. I am forced to reflect on memories of social isolation, living in fear of catching something, needing to carry sanitizer and wipes wherever I go, being closed off from the community and being careful of what and who I touched. These current protocols were Mason and our families’ normal and now they are the world’s new “normal.”
Throughout Mason’s treatment there were constant discussions, IEPs, 504s, meetings to discuss how Mason needed to wash hands, keep away from those who were sick, be monitored/isolated so that he could try to “mainstream” and be a part of society. It was scary sending him to kindergarten knowing this five-year old with very little immunity would be exposed to everyday “kid germs”. We lived in fear of the dreaded fever, RSV, Pneumonia, colds, etc., (all of which he ended up having throughout his treatment). We headed to transplant in fall of 2017 and with that came a manual and protocols on how to protect him. We lived in isolation having to wipe everything down, wash hands and change clothes as we entered his room. We couldn’t share a bathroom with him because of the fear he would get germs from us. The outside world was our enemy.
Through our two years of protecting Mason, a lot of the hygiene practices and protocols became second nature. The fear was there, but we were able to keep moving forward and chose to focus on other positive things. I learned that a whole lot of fun can happen in the hospital room or locked in your house for 100-days post-transplant. Strange to say but it turns out some of our best time spent with Mason was alone in those hospital rooms. We kept busy – he enjoyed car races, creative projects, putting on a play with his stuffed animals, dancing – lots of dancing, and squats (because his Pop told him it was good to exercise).
To the world who hasn’t been exposed to the immunocompromised population, I say welcome to the club. This is your new “normal”. I assure you that you can do it. It isn’t easy – in fact it is really hard. It is why we call our cancer children, warriors. They, and their families, live this day in and day out. This is their life, and now it is yours. I write this to you from Mason’s Make a Wish Treehouse bedroom, from the desk he should have been sitting at, and from the room that brought him so much joy as I too, adjust again to this new “normal” and telework full time.
Please wash your hands, socially isolate, find joy in the little things, and know that this will not last forever. For some, this is their life and for many it is a temporary inconvenience. Next time you think about heading out to a public space, or to hang out with your friends and family, sit tight – you are saving lives by staying right where you are. You can do it. Our warrior kids do it every day.